Living with Epilepsy

Another birthday coming up and over a hurdle

2012-01-01T16:07:00.000-08:00

I have been really bad about updating the blog very regularly. When I started writing this blog, I was hoping that it would help at least one parent/child. Based upon the calls/emails I received I hope that it has helped at least one life positively. When I finished writing all of the hardest phases, it seemed to be a catharsis. I was done shedding all the unshed tears, recalled all of the instances I would rather not and was moving forward. As I moved forward, the day-to-day existence did continue but we were all so positive that the worst was indeed past. And so it is I believe.

Convincing other parents that this route truly helped, that it requires time, patience, dedication and discipline is something that is really challenging sometimes. People will not really understand how they can dump their vegetarian beliefs for their child's health or how they could just take matters in their hands and not follow what the neurologist said even though their child may be suffering a great deal. Some truly have no idea how and why to resort to alternative therapies while others do not understand the medication aspect and how it truly impacts the brain. I think each one must find their path but in the process I do hope that the child is not at the point of no return. Someday maybe there will truly be a cure.

One of the superstitions I lived with until yesterday was not travelling back home on the 31st of December. This stemmed from the fact that V's first seizure was on the night of the 31st of December about 2 hours after we had arrived home from a long trip. So when my husband booked return tickets for our recent trip on the 31st, I was still wary. I insisted that the flight be booked for the morning. We reached fine, everything went fine and for the first time ever, V stayed up until midnight to usher in the New Year - and seems to have done fine so far. Yes, he did have a meltdown soon after waking up - his body still does not take to the changes well and continues to need his sleep routine but after the meltdown for a few minutes, went about his day just fine. To me that is a big step for him and me in this journey of life.

As V turns 11 on the 3rd, there is so much to be grateful for. His initiative in taking his diet in his hands, figuring out what might and might not work, coming up with various alternatives, recipes, understanding what and why he should and should not do things, my daughter's growing up and handling of the situation, my understanding and empathy for the children who suffer this way and what their parents may be going through... So much learning and so much more to learn....

The food stays more or less the same but V has learned several new options as workarounds and travelling is so much more manageable. Less to carry, less to worry about. He continues to struggle with being at a more mature level, making more friends, Math and his number concepts but the kid works really hard. It is sometimes so hard to see him work hard over something that should come so much easier but he understands why he needs to and continues plodding along, happy almost always.

And so as he turns eleven, I think of all of the various people who have had such a positive impact on his life, who have helped him (or us) in any way big or small, from the time he was a baby, through preschool and elementary (he moves to middle school in the fall) and who continue to look out for him, knowing that V is truly blessed.

It gets easier

2011-08-20T12:12:00.000-07:00

While the days fly past, one thing I have neglected to do is update this blog on a regular basis. V has been getting better in terms of several subtle ways. Academically, he seems to have just absorbed things and synthesized these over the years. In terms of his social skills, he has made progress and I would say a great deal of progress. He has been doing a private class for social skills which has helped him on several aspects, one of the hardest being "Letting go". As I started to do the follow-up sessions with him at home and checking with him what was done in class, I realised that "letting go" is so hard for adults. We tend to cling on to the bad things/things that went wrong and it is so hard to just let go. He continues to do very well with the adults, charming them with his conversations while being simultaneously annoying to his peers.
Food continues to be the same. There has been very little change in his diet. His pallette has increased and he continues to look for options in foods where there seems very little choice at the surface. The primary diet is still vegetables, fruits, meats (he doesn't seem to like anything other than chicken), dairy. Over the summer I tend to try a few new things to see if it works out or not. One thing is for sure that his body just cannot handle sugars. He has meltdowns an hour or two after consuming a food with high sugar. That continues to be a challenge because he does get tempted by cakes and other pastries. The alternative is to let him taste a little bit so that satisfies his curiosity and then he is fine moving on. The fortunate thing is that there is no allergy.
While travelling though, with the ups and downs in schedules, he had nightmares three different nights - that just told me that the schedule and what he ate in the night still made a tremendous difference. He hadn't had these nightmares in a long time so it wasn't exactly pleasant to know that he wasn't over them.
Another thing I started doing was to let him try just a little bit of egg every time it was cooked. He has been handling the really small portion very well. So after a few weeks I will try and up that is my current thought process.
Not having a regular schedule did make a difference this summer but fortunately, for the most part, it did not have much of a negative impact on his behavior or sensory system. The one thing he did miss out on which still helps him tremendously is having a bubble bath. It helps his sensory system as well as calms him down, helps him sleep better. Coming back to a half hour in the tub was a real blessing to calm his nerves.
The biggest change has been in his sleep. Not only did he start sleeping by himself in his room without an adult around, he has slept through the night without nightmares, crying, screaming, anything negative. This was big for me in terms of letting go. I don't know anymore if he is jerking or twitching a lot in the night. However, given that he gets up on his own, all rested is good for now. I will see how it goes.
The other big change has been in his independence as he has decided to take on his tasks all by himself. This has helped with several things he now does and it is what helped him take the step of sleeping in his room by himself.
I continue giving him Ovaltine in his milk for extra vitamins without giving any supplements. He tends to eat several more vegetables now, including some greens that can be very bitter.
V doesn't need OT anymore. He does continue to need speech - that is going to take a really long time, especially with his "r"s and "l"s. He did really well academically last year which keeps me alive with the hope that when you believe in your child and think positive, the impossible becomes more of a reality; this is a child who didn't know his letters in kindergarten nor could he count beyond 5. Every task was daunting to him. Eventually, the friends will also become a reality and more and more events will get pushed to the back - did those nightmares really exist?

Articles

2010-11-21T09:20:00.000-08:00

This being the national month of epilepsy, there have been a few articles.

1. The Boston Globe

2. The New York Times

Epilepsy Awareness month and an interesting point

2010-11-11T11:41:00.000-08:00

This is Epilepsy Awareness Month. So I was posting the link to my fb profile while V was reading next to me. As I included the link, I put in a comment saying that I hope that there is a cure sometime. He was reading what I was writing which I didn't realise and he then added after I put in the comment, "Me too". That was so very touching - this is something he thinks about and wants but has never openly expressed it until this time.
Basically, he and I have talked quite a bit about why he needs a restricted diet, the consequences, when he was on medication and why, etc. He once said to me about a month or two ago - I wish I was not this way, I wish I was like the other kids being able to eat anything and it did break my heart but he did it in a very practical way.
His tenth birthday is coming up. He was checking with me what treats he should take to his class. We went through a few options. At one of the options he said that once a girl brought those treats in and everyone except him could eat it (his class has other kids with dietary allergies and restrictions); he said it without remorse, without desire. It was simply remarkable. He hadn't even felt bad about it or I would heard about it that evening at home.
Something similar happened at a birthday party two weeks ago. This friend of mine said to me that he was absolutely amazed at V's ability to refrain from treats and that his maturity on that aspect was impressive. So, even though it might feel like he is being denied and deprived, he really knows the consequences, is able to understand them and knows that we are doing what is best for him. It is something I can really learn from.

Different food choices

2010-09-19T10:24:00.000-07:00

So, over the past year, V's food choices have expanded. Due to the fact that his options were so very limited, we started coming up with new ideas; several were his own; as he was growing, his appetite was growing too and so were his taste buds. The following got added to his diet:
1. Pizza: He will eat all the toppings of a pizza minus the crust. That way he derives the satisfaction of eating a pizza. Every Friday for over six months, he has been ordering pizza at school on pizza day. He gets a slice; eats the cheese and pepperoni; I asked him how that was enough; his response was that he anyway eats the carrots and milk that go with it and maybe apple. So this is working well; once a week I make pizza for his lunch or dinner.
2. Melted Cheese: He melts cheese either in the toaster oven or in the microwave at a consistency that he desires.
3. Eating salad with melted cheese.
4. Eating the inside of a dumpling for instance.
I hope to keep adding to this list.

Night terrors again

2010-09-19T09:27:00.001-07:00

So after being event free for several months as far as seizure activity goes, the night terrors happened three weeks in a row, once a week. No idea what might have triggered them. Tried different food combination elimination possibilities and tried different sleep patterns. So far, the past week was uneventful. Lets hope it continues that way. After all, life would not be half as exciting without its challenges!

Far too long; first time in public

2010-04-03T08:33:00.000-07:00

I have stayed away from this blog for far too long. V is having an excellent year; really enjoys having a male teacher who has a great sense of humor. He has had his ups and downs of course. Several things are still day to day and it has become for us commonplace to realise that and take each day as it comes. The good thing is that his teacher realises that he has to take one day at a time and that makes life easier for everyone.
Not only is V doing reasonably well on the academic front (reasonably when compared to the rest; compared to where he was at, he is doing fantastic), he is doing scores better socially and emotionally too. He has a couple more friends which is huge. He is actually trying to play some games at recess, not just stay in the sand box. These are huge leaps in his social growth. Not sure where this will be in a couple of years but we'll see when we get there.
V does still tend to be on the immature side when compared to kids his age; he doesn't realise that he is bothering someone; others get really flustered when he comes near, leave alone say anything. It is a viscious cycle and not one that we are to solve in the near future.
Thanks to a co-worker, I organized a fundraiser for epilepsy to raise awareness and to try and start giving back. It was a small group of friends and coworkers. Was very good. I was surprised at myself giving a small presentation, but it was a small group, in my own home and I didn't really get into details which may have been harder.
This past week however, for the very first time I spoke in front of an audience in a public setting. Apparently, there were 250 people. It was a different discussion, I was bringing up the issue of seeking support, talking openly when your child has a difficulty, health or learning and being able to cope with that. I had 3 minutes to talk, was very nervous and debated several times whether to bring in my personal piece. Without that I decided that the little speal I had was not worth its value. So I went up there, the sentence where I said "On December 31st, 2003 when my son had his first seizure..." and I could hear my voice starting to crack, so I told myself I couldn't let that happen. I went onto completing that sentence without a crackling, didn't go into details, because I didn't trust myself to complete what I had to say calmly and finished the rest.
The next morning I was feeling physically and emotionally drained. All I did was stand there in front of an audience for three minutes. The only sentence was about V's first seizure and how we need to seek support. The buildup to it all, to talk about it in public calmly and have people advocate for themselves - it was too much for me to handle. I haven't felt so mentally tired in a very long time. I was feeling so alone, and still am. All of the past seemed to come crashing down on me; I feel like I am carrying this heavy load. And yet, this should not be about me. It is about V and how he suffered. I can't explain how I am feeling but I have this thing that I need to continue on this mission of helping other parents to learn to accept, to listen, to work with their schools, to seek support. It means I have to build up my mental make up. I considered myself to be a very strong person. And I have come down in a crumbling heap with those 3 minutes. I was barely holding it together for two days, especially when people said to me - what an act of courage - I guess it was but I wasn't looking at it that way. There is a lot more work to be done.

It has been three months already

2009-11-28T20:46:00.000-08:00

I didn't realise that I hadn't posted in three months. During these three months, there was one big change that transpired both for V and me. In the summer he said to me, I will sleep by myself when I get to third grade. Come August, he was telling me, I want to sleep on my own. Now, my mother was visiting and being a three bedroom house, she was in V's room as she always does; so I explained to him how he couldn't sleep there as it would be disturbing both to him and to his grandmother. So he said to me, he was ok if I kept a mattress down in my room. So I got the mattress organized along with a fan (he has to have the room really cold in order to sleep soundly but not so cold that he will shiver). So, the first night, he woke up really early in the morning but continued to sleep in his bed. It took about two nights before he settled in completely.
About six weeks ago, my mother left. V had decided that when she leaves, he wanted to sleep by himself in his room. This took a great deal of independence and courage on his part as well as to let go on my part as I used to be paranoid about the nights. It meant that I would have to let him be no matter what. Well, when he transitioned to his room, it again took a couple of nights before he settled in. After those two nights, he started sleeping in really well. I figured out the right angle of the fan, the bed, the stuffed toys, all the factors that might impact the quality of his sleep; he has been extremely excited about being on his own, has been spending time alone in his room; in short doing what most kids would have done independently years earlier.
I imagine I am sleeping better too as a result as I don't awaken at his every movement or sound. I contemplated buying a monitor to check on his sounds through the night and decided that I had to let go - he didn't really need it and it might actually create a problem where none exists.
Last night, with the long Thanksgiving break and R spending the night at her friend's house, while reading aloud to V before bed, he asked if just this one night he could sleep with me and my husband. I was impressed that he had never asked to do so in three months and I said that was fine. He is ready to go back to his room today after that one night's break just to reassure himself that his mother is around and will be there for him. That is normally my good night message to him - good night, sleep tight, don't let the bugs bite; I love you; relax because mama is going to be there for you, no matter what - she is not going anywhere.

Sick again

2009-09-04T20:46:00.000-07:00

So, its never fun when a child is sick - only a mom knows what she goes through - it is always hard to focus on anything else. And so it has always been with me and the kids if and when they get sick. I have been relatively lucky with the older one and younger also has a strong immune system, despite the seizures and the other issues. The other day he fell sick - my heart beat almost stops even now when he is sick - I am not as paranoid is what I would like to believe - but two nights ago when he threw up about 8 times, I was on tenterhooks - I am still just relieved that nothing else happened. There was no fever, nothing else - but he just kept throwing up and when it stopped at about 1:30 - just like from about 10 pm - I couldn't sleep because I kept thinking - he is now going to throw up again. It was a nightmare - I guess making up for all of those healthy days he has seen the past several months.
In any case, God is good, all's well with the world and he is hale and hearty again - yelling and screaming and as normal as he can possibly be.
It is obviously a challenge during his throwing up phases - he is anyway on a restricted diet, combined with the throwing up - what can he eat when ok? So when he awoke the only two things he was allowed was apple and banana. Two hours thereafter, when he was still doing fine, he was allowed his cereal, thereafter salad and yogurt, thereafter his nuts.
I am truly grateful everything was shortlived and I can go back to thinking that this phase never happened at all.

Fever and tantrums

2009-07-27T07:25:00.000-07:00

During this past month when we were travelling, I was lucky in that both children remained healthy. Right at the end of the trip, both the kids fell sick, one after the other, with V being the first. I am still very paranoid when he falls sick not knowing what to expect. However, this time, his fever was under control - lasted one day and there were no repercussions at all. I would use Tylenol when I felt his fever come back and it would disappear sooner than later and he would be fine. For this I am more than grateful. Also, touch wood, he is inherently healthy and bounced back the next day.
V has been having more than his share of tantrums. I am not sure whether it is because of all the changes and his routine change or because of the fact that he did not like the bananas while travelling and barely ate them - just one seller whose bananas he liked and would eat one a day. The fact is that I think this is an issue and needs to be addressed and I will check to see what the best approach would be. Yelling is obviously not the right way but reasoning during those periods cannot happen because he is in a non-listening mode. Basically, this makes me even more convinced that V needs a really rigid diet and routine and slight deviations can cause problems.

How long?

2009-07-27T07:12:00.000-07:00

I have become rather irratic about posting regular blog entries. I think the last summer was sort of to get it off my chest and to log my experience so that it truly would help someone - even if it helped one person I would be relieved. Since then, the updates have been infrequent and I need to get myself more disciplined on that front.

We recently travelled to many places - in and out of the country. Touch wood - nothing seems to have changed in his health other than him having lost some weight which is fine as long as he stays active and healthy.

After being disillusioned with the neurologists, particularly the one we had been seeing, I just take V for his annual checkups to his pediatrician whom I hold in very high regard for several reasons. To say that she has been pleased with his development is an understatement. She has not recommended any changes for him, whether in terms of diet, academics, anything. I frequently get asked the question - how long should V's diet continue? To be honest, just as with everything else that I have experienced with him, it is a day to day situation. Not only do I not have an answer to this question, nobody does.

Some say, seizure free for at least two years with the diet before weaning - I weaned him off medication the month after he was seizure free, I was so frustrated with the side effects. Having to experience what he is going through 24x7 is very different from someone seeing him for a short period of time and trying to evaluate what's going on with him is what I have realised.

Some say, if three years, others have other opinions. In short, no one doctor or person with experience has any one common answer. It all depends upon how the child is reacting to different things. In June, right before V's school closed, he had whipped cream with bananas for breakfast at a parent event. That day, his teacher told me, it was really hard for him to stay focused and he was very fidgety. I know exactly what she meant - that is how he used to be every single day in preschool - something his language therapist had noticed when nobody else had. This basically means, even a slight increase in sugar is not something his body can take. So I am not even going to try going down that path. Do I think he will be able to eat the same meal as any of us? I have great confidence and belief that he can. The only question is when to which I do not have an answer. I also don't think the answer is important and to have him on a full carb diet is required as long as he continues to remain not only seizure free but also is able to control his behaviour pattern and has a good night's sleep.

Change in food, other updates

2009-03-24T08:30:00.000-07:00

Since January - so for the past three months, V's diet has steadily changed. He still has to have a low carb diet or he won't function but I haven't been giving him his spinach goop. It all started with our being out for ten days and his growing up. He is a lot more aware of and asks for foods he knows he cannot eat. He ate salad and chicken really regularly during the travel. After coming back home, he went on this I don't want the same food and I don't blame him. So I had to figure out how to still get him his daily quota of vitamins and minerals. So I started making different variations of the chicken that he could eat and things are going well so far. The different foods he has now for lunch/dinner are as follows:
- chicken salad: chicken with a mix of lettuce, onions, carrots and cabbage
- spinach, garlic and cheese sausage
- kosher hot dog: one has to really hunt for the right kind of hot dog.
- chicken soup: I make the broth with spinach, daikon, greens as well as some spices, then add chicken to it
- plain chicken cooked in different ways - with gravy, with indian spices, with just onions, garlic.
- cheese

I also learned that lettuce is high in magnesium so it kind of makes up for him not having daikon everyday. In addition, he still has his daily quota of nuts - almonds, cashews and raisins which really helps. He still has his quota of banana (2 a day now), at least 3 glasses of milk with ovaltine and yogurt on a daily basis.

V has come a very long way with his social skills this year. He is able to play with kids, he got invited to a couple of birthday parties and he is able to carry on a sustained conversation with kids, not just adults. He continues to charm the adults which has always been a factor that hides his deficiency with regards to interacting with children.

Number sense continues to allude him. He has learned how to add, subtract, regroup and does so mechanically but he doesn't seem to have that innate number sense. Not sure when and how it will click and I will keep trying just as much as the staff in his school keep trying to work with him on the same.

V read his first big chapter book a couple of months back - Roald Dahl's Charlie and the Chocolate Factory. I was extremely thrilled. If I look at how far he has come along - not knowing his letters at the beginning of kindergarten to reading a Roald Dahl in second grade - in just 2 years. That's clearly a miracle in my opinion. He is on a roll as far as reading and writing goes. He has been enjoying writing stories and I again think that this year has just been really marvellous for him - his teacher is a great match, she is accomodating, yet has him do the tasks, knowing his potential, he has been enjoying school a great deal. Things seem to be finally starting to fall in place.

Full Moon and update on nutrition

2009-03-10T20:23:00.000-07:00

It is said that the full moon brings about several urgent care cases - I have no idea whether or not this is true, but the fact is that the full moon adversely affects V. and has been for as long as I can remember when he started with seizures. It is funny but I always know that it is approaching full moon or it is the day, not because I have seen the moon but because I have noticed V's nocturnal movements being different, that too at specific times. The moon shines really bright through our bedroom windows and blinds when it is around full moon. I haven't tried to get a sheet that would try to completely shut out the effect of the moon - maybe I should. However, when the moon does get to the phase when it is shining bright outside our window, V's kicks/jerks start. He has a disturbed sleep pattern for about an hour or two until the moon moves and then he sleeps fine. How is it that I suddenly remembered this? Well, I do think of writing about the changes with the moon, but am never at the computer when I do remember. Tonight is full moon and V's sleep has been disturbed the past two nights - call this insane if you may - I would've never believed any of this - but the pattern is loud and clear. I don't know if it is the particular nature of the moon's light that causes his anxiety or just the moon itself but it does happen.

I wanted to write about V's nutritional update for the past two months. Ever since we came back from our trip in January, he became flaky about eating his spinach goop. He did eat it for about a week but his taste buds have certainly come to life. He asks for different foods, gets a lot more upset if his dad or sister are eating something that he isn't allowed to eat and he is more demanding about his food. There are obviously pros and cons. The good thing is that even without making the goop he is doing just fine. However, he sticks to the same diet. He has breakfast foods for dinner - like sausage - which doesn't matter because it fills his stomach. He likes to eat chicken soup, he still loves salad, and he loves hot dogs. I have searched for the right sausages and hot dogs - 0 carbs and natural. He still eats his daily dose of milk, yogurt, bananas and nuts. I am happy that he eats a variety within limits and is able to hold up fine. Hoping that the same continues. I would like to see him do fine with all foods one day - I am sure the day will come.

New Year - turning 8

2009-01-11T10:47:00.000-08:00

So, yet another year has gone by, two whole years completed seizure free - I don't feel as superstitious saying it anymore. For the longest time, I would hesitate to say that we have had seizure free days, then weeks. I would just say he is doing way better or that there haven't been any noticeable incidents or episodes, without specifying what I meant by incidents or episodes.
The diet continued through its second year with minor modifications. Over the past three months, the following is what changed and it has made life a whole lot easier of course.
1. Dinner times. I had mentioned earlier about how V would have to eat at a specific time - at least two hours before going to bed, about how he couldn't eat meats in the evening and how all of this could cause him to have nightmares. Well, as he started growing, his appetite has been increasing, he needs more food before going to bed. It started one day when he asked for a hot dog about an hour after he had eaten his spinach. I made it, he ate it and he was fine through the night - no nightmares, no jerking, nothing different noticeable. So I began giving him chicken or turkey salad, or a hot dog or a sausage in the evening as well. Not only did it help his appetite in the evening, he didn't get up feeling starved, or like sometimes wake up early only because he was hungry.
2. The night time jerking has been very minimal. In fact, it is hard for me to remember when I last noticed it. He seems to be way more normal with his night sleep.
3. He has been asking for foods that he didn't look at the past two years - again part of his growing up I assume. He will sniff in the air, say this smells good, then want to look at what the food is and whether he can taste it. He is really good about taking the no about the tasting if it is a total taboo food but he really seems to want those foods now.

All of the above made it so much easier when we did a road trip during this past winter break. I am so paranoid about what day we can leave and what day we can come back, thinking always to the first time all of this started - which was after our Portland road trip. Also, we were gone for 10 days which made packing V's spinach so much more challenging. School didn't end till Friday, when I started cooking his food which takes about 2-3 hours, if not more. We were to leave Sat. early morning - before which I was dropping my cousin and her family to the airport. Since we were going to places where we could get all of his usual snack food, that wasn't an issue. We tried to find restaurants where he could get some food at least - invariably, he would eat chicken salad and milk. The restaurant folks everywhere, even in a remote place were highly accomodating and provided for food that wasn't completely available off the menu.

V celebrated his eighth birthday and couldn't get to eat a great deal of the food but could get to enjoy himself without me worrying about what would happen, not letting him out of sight, etc.. He does have a great deal of temper tantrums at home these days as well anger issues. It could be one or both of two things - due to the low carb diet, it can cause anxiety - this is something I read recently - and his basic nature is what might be surfacing. He is able to remember and recollect several facts and incidents, surprising me all the time with the information he gives me. He does struggle with his spatial reasoning and really does not truly get Math, but is able to do what is taught to him - the program that has worked for him is touch math. He is also writing really neatly and his handwriting is a surprise, given where he started at. Reading is his strength (besides computers) and he is really enjoying doing it for which I am so very grateful. Things do change week to week depending upon how he is doing with his sleep and viruses but I continue hoping for the best and we keep charging ahead.

The past week

2008-12-13T07:57:00.000-08:00

Having been relieved that the fever lasted only for a night and it was incident free, I assumed things would go the way of a regular virus. However, that was not to be. The past week was a long one and one I don't wish to have again. Of course, its all in perspective. Compared to the past, this was nothing. V started with a cough as I had said following his fever. He coughed way more than he had when he had had coughs previously. Not just that, he coughed several times during the day and a few times at night. He was exhausted, he had a difficult time following directions in school, his behavior was impacted and he got into trouble on the playground as well, even losing recess time on one of the days. He was miserable in the evenings and would go to bed by 7:30.
In the mornings, at 7:15 a.m. I would carry him out of bed to the bathroom, dress him up, put him on the table for breakfast. He would insist on going to school each day and he wasn't that sick that I could keep him home. It was miserable as the cough sounded like a whooping cough, he was fatigued and the nights weren't very smooth - in the sense that I caught some jerking and one time what seemed like a head drop through three nights. By Thursday, I was contemplating having his chest checked fearing the worst. He seemed a little better on Thursday evening and by Friday, though not quite himself, he got up early in the morning feeling hungry - this was a fantastic sign as he hadn't felt like doing anything - playing, drawing, eating; I would still be shoving the spinach goop down his throat and his daily banana. He didn't mind his daily quota of milk and yogurt but refused to eat his nuts which are really needed. Last night he slept again for twelve hours but he has woken up on his own - no school - no need to wake him up - and is enjoying his breakfast right now. He has a piano recital today which he has not practised for but we'll see how it goes.
Through all of this, he barely managed to do his homework every evening but his teacher has been very accomodating, giving us more time when we need it, not pushing him past his limits, letting him turn in some of the writing homework the following Monday and this has been the case from the beginning of the school year when the teacher voluntarily let me know that I could ask for more time whenever he needs it - that is such a comfortable feeling - to know that she will let him have it. At the same time, I have to be careful not to abuse that privilege and have him do the work whenever he can do it on time, which did happen the first two months of the school year until the projects got into a larger amount of writing.
One more good aspect of this past week was his starting with a social skills session with the school psychologist -it is with the intern but she is also good. He enjoyed the session, remembered to tell me about it and I hope this translates into various aspects of his interactions. This is the one area which is still my biggest concern - his interaction with his peers.
V continues to struggle in the area of Math - nowhere compared to even six months ago but the catch up seems a lot more daunting in this area. We just have to continue to take one step at a time and keep going.

Fever

2008-12-07T21:22:00.000-08:00

After having been fever-free for 2.5 years, V got a fever last night. Through the day, I knew something was wrong. He was ultra tired, cranky, couldn't explain why and it was a weekend as well. At night he had this weird smell in his mouth - this was something that happened through his bad days earlier. He was yawning away at 8:30 and we went to bed. He had a restless sleep and at one point when he seemed more restless than he should be, I checked him out and discovered a hot body. That immediately puts me on high alert. The last time he had a full blown seizure - not a head drop or absence or anything else - was when he had fever. So I went and got Tylenol, gave it to him, even though it meant waking him up in his sleep. That sure worked wonders - the fever came down, he slept peacefully for a few hours. After a few hours, the fever seemed to creep up again and towards 6:00 a.m., he was again restless. So I gave him another dose; that certainly helped but he didn't go back to sleep. He felt fine and was up and about.
A really close friend of mine visited with her husband and son, who is about the same age. The boys played together and that must have tired him out. We had to do a bit of holiday shopping and he was really tired during that time, so much so that I came back to the car with him while my husband and daughter finished the shopping. He then was fine the rest of the evening; throughout the day there was no sign of the fever returning. He slept off like a flash. I need to see what tomorrow has in store for school. Hoping for the best as always.

Ups and downs

2008-11-22T15:50:00.000-08:00

The ups and downs continue even as V has been weaned off all medication. This past week he had a virus. Now, for several months, when he has caught a cold, the cold is not a running nose. He might wake up with a stuffed nose or he may blow his nose sometime through the day. He might cough a little. This week, however, was different.

Monday was a difficult day for him in school. It has been almost three months from the start of the school year. He has gone for the past six weeks without a single break through the day which is soooo very different from the past two years where he needed fairly frequent breaks, last year less frequently than the previous. Monday, he had to be given a break as also Tuesday. On Tuesday in addition to the break, he had a meltdown in school. I was at a loss, thinking maybe because he ate out more often than he normally does on a weekend, even though I monitor all the food he eats. Wednesday was his hardest day, having to work 1:1 with his aide through the day, and not with the class. On Wednesday evening, his cold started - bingo! It was not any food, but his body was trying to figure out this virus which had attacked. This was always the period I dreaded the most the past five years. The good part is that he didn't have any active seizures, but he did have two difficult nights - lots of jerking and restlessness, sensory issues going on. The poor boy - he didn't even know this was going on. The cold was so bad this time that he was blowing his nose almost non-stop and woke up on Thursday morning at 5:40 a.m.. I checked in with him about school and he replied, "No. I have library today and I wouldn't want to miss it."

Once the cold actually starts, he does better and sure enough, his day was way better. It is still- take one day at a time - almost - and this season can be the worst. Fortunately for us, his body has been good about repelling viruses. All those extra vitamins through his food can make a world of difference. Until the next time that it may hit this season, I am enjoying his good weekend...

The next month

2008-11-01T21:52:00.000-07:00

So, a whole month has gone by and more after the last medication was administered to V. He is doing just fine under the circumstances. His brain seems to be taking leaps in catching up with all of the deprivation so it seems. For example, he is obviously learning compound words in school. I had no idea till he asked me if journalism is a compound word and we talked about the differences between compound words and words with suffixes and prefixes. So, the day went on and then towards the end of the day we were watching something and then he suddenly goes well, boyfriend is a compound word and so is girlfriend. I mean things like this are miracles to say the least. Not only is he able to absorb what is being taught in school but also, he is able to retain the information, think about it actively, relate it to other things he is experiencing and connect. I mean, that is so wonderful, I would have never dreamed of it. These are small, simple pleasures that keep me going.

He loves school, his teacher this year is so very understanding of his needs and accomodations, it is absolutely wonderful. Not only do I not have to ask for anything, on her own, she realises and lets us know about assignments that he will need more time. He is really happy, is just so getting back to his old self. I mean, he was happy through his bad times but now, he just seems differently happy.

I still worry when he gets emotional or worked up because he used to work himself upto a frenzy so that he would get seizures. He was highly worked up last night and it took me over half an hour to calm him down, all along worried that he would work himself upto a frenzy. All along, I need make sure that I keep calm, that I don't show him that I am worked up, that I have a calm voice and hand, all along soothing him to ensure that he gets the right message. He does have to hold it up in school and that's why he tends to have more of these meltdowns at home which is kind of alright given that he can only do so much and physically he is exhausted by Friday.

R does show signs sometimes of jealousy, despite an effort on my part to try to stay fair. Every once in a while she needs a reminder that not everyone's brain is like hers and that there is some accommodation she needs to make for his differences. It is a high expectation of her and it does seem unfair sometimes when one sees other ten year olds who do not carry the same responsibility but then why should everybody undergo anything similar?

Meanwhile, life carries on. Diwali and Halloween just went by. Thanksgiving will be here soon.

The last drop

2008-10-04T11:06:00.001-07:00

So, we finally took the plunge. V settled in really quickly into second grade. It obviously helped that he knew the teacher and he had the same aide but it was a really smooth transition – someone out there was watching for us. As a result, during the third week of school I felt bold enough to drop the last bit of medication. I always do it on a Thursday because the earliest effects can be seen Friday afternoon by which time he is done with school and if there is anything amiss we can catch it over the weekend. That's how it has been through each of his weanings.

This time round, we weren't sure what to expect. That weekend and the next he had a few tantrums/meltdowns/seemed a little more tired. However, there was practically no difference in his behavior in school which meant that it was the general end of week tiredness showing up at home and that the last drop really didn't make a difference to his system.

He actually had a very good week in school last week which makes me believe even more that the medication was causing way more harm than we realized. He really looks forward to school and even though he complains, he is able to do his work really well.

This year has also been way better in getting him to do his homework and to read. He doesn't like to read chapter books and as far as I'm concerned, it doesn't matter so long as he enjoys the act of reading. He doesn't just zip through a book but takes his time, observing all the pictures, absorbing all the words and understanding as he goes along, asking questions, connecting it to other things he knows, etc..

It is too early to tell how much of a difference the drop in medication will make to his learning disability – whether that will stay for a few years or just go away in a few months. I am not looking so far ahead. Given that I was counting my blessings one day at a time, I just feel so very grateful for the position we are in with respect to his health. I am really relieved that rather than stress about how many seizures he had in a day I am able to check with him about his day and he is able to give me details about almost his entire day. He is able to recall the book that was read in class, he is able to retell stories that were read in class a few days earlier – all of that to me is simply a miracle which I want to hold on to. Given that he couldn't tell me what was going on on the previous page of a book – this is just simply amazing to me about how his brain has grown.

He does still need to put in an effort to recall certain things but I am hoping that just as his basic memory has improved with time, this will too.

Annual Neuro. visit

2008-08-22T19:39:00.000-07:00

I shouldn't be labeling this as annual neuro. visit. After all, we haven't really been seeing the neuro. every year. There was a hiatus of two years or more maybe in the middle. The last two visits - last January and this August were due to the fact that when the time came to order a new prescription refill, the neuro. would leave me a message saying that she hadn't seen V in a while and could I please bring it in? Hardly or never a word about checking in on how he was doing. More like an unstated threat - you need the refill - bring him in.

So last Jan. when I took him in, he had stopped with his seizures. So she remarked - oh, that is great and I would keep him at the same medication level. I had mentioned this in an earlier blog - I am obviously not an obedient person and decided to do things my way. So I had started the weaning process. She doesn't know any of this nor the diet he is on nor the learning disabilities he has had to face or his social issues.

At this appointment, she kind of forgot all of the above. While talking to me she was keying in her notes - so that's great; you mean he stopped seizures in Dec. 2007; no it was Dec. 2006; so what is his current medication level? What about learning? What about attention? All the time she kept keying in and looking at what he was doing. He realised he wasn't part of this conversation and was busy drawing something. So, the next question was - what kind of diet are you using? Oh, I had another patient whose parents tried the atkins successfully. So why was this never given as an option or anything else? Why was it always this drug or another? Why was it that we were never told that these are the problems to be expected? Yes, the immediate problem is that the seizures need to be stopped. However, if they have happened for a period of time, what is it that can possibly to a child/to his/her brain? What should the parents be prepared for?

So then we go on to when am I going to wean him off of the final 75 mg? So, here I say that I am waiting as he has a few changes in his life: my mother just left, his school is starting; he needs to settle in, then I will take him off the final dosage. It is still an unknown and I would rather be safe - have learned it the hard way. So she said that it was unlikely that the dosage was doing anything and that it was entirely my decision. I know that, just as it was my decision to do the previous reductions and food changes.

She then checked his reflexes and his tremor - oh, no tremor for him. Well, that happened a while back. So she said that she had nothing more to add at this point; that we could do an EEG for interest sake and that if something went wrong we could look more closely at his carb. count and that she would like to continue seeing him every year.

I am just so grateful that things are working well but it has taken a great deal of effort for everybody concerned. I don't know that we will go back to the neurologist. Time will tell...

Some gems

2008-07-28T06:40:00.001-07:00

While traveling this path for the past four and a half years, I have tucked away in my mind these gems. Some of these may be repeat. Some may be new. They are based upon my experience. I will add more to these as I think of them.

This one is the hardest – however difficult, try not to be sad at all when you are with your child – your being happy is extremely important to his/her wellbeing.
Follow your instinct – yes, the neurologists are going to say something and you will follow what is said initially for lack of a better choice. However, you are the one spending all that time with your child and can monitor/observe/follow way better than someone else when it comes to the medication. Do what you think is right.
Always believe in your child – don't give up that hope nor let that doubt creep in. Let your child know that no matter what, you believe in him/her and he/she is going to succeed.
Explore the different things your child may like to do – well, maybe he/she is struggling academically; maybe your child doesn't like to do sports – you don't have to just because everybody is. Each child has at least one strength – find it and encourage it. Don't emphasize the negatives because when your child is already struggling with something he/she is very aware of it.
If you have one or more children who are doing fine, don't ignore them/take some time to make them feel really special too; at the same time they need to be aware of their sibling's condition no matter what the age. Their sibling love will carry them through.
If there is a specific diet for one child or more, don't deprive your other children of their favorite foods. Do it in a special way/do it such that the child on the diet doesn't feel deprived.
Always inform people dealing with your child proactively about his/her special needs/concerns/health issues. Be upfront and it will help your child. This is particularly true for parents like me coming from a diverse cultural background - this is not culturally the done thing, but try and come out of that shell because what needs to be foremost in mind is concern about your child's wellbeing.
I also feel strongly about not involving other parents/kids just because my child is on the diet. He has been trained to say no to the foods he cannot eat; he has packed cookies/candy and brought them home and given them to his sister. I will give him something instead - either a toy or something else that he treasures.

Other activities

2008-07-26T02:48:00.000-07:00

V has been learning piano for about a year now. He is still on book one. His teacher works very patiently with him one on one and realises what she needs to do to accomodate him. Of course, it helps that I have informed her upfront about his medical and learning issues - that is just so very important to do, not just with the class teacher and other staff, but with others he interacts with. They are always there to help and they do help. V really looks forward to his piano lessons.

The other activity he has been regularly doing is swimming. Last week, even his swimming teacher mentioned to me that he has been very pleased with V's focus - that felt so good. The swimming teacher, again, has been very patient, has worked very well him and made the entire swimming experience very enjoyable. V loves the water and loves going to his classes so that's again saying a lot.

We had tried karate but he really wasn't into it - it didn't really help with his seizures or concentration, I wasn't too thrilled with the place or the instructors and we dropped it. With the activities he is doing, we haven't pushed the levels nor anything. The fact that he likes to go, he is learning is good. It is more important that he enjoys what he does and keeps it going. Tennis was another thing we tried - didn't really pursue it. Once in a while I will take him to the park and we play. Soccer - we tried that too. He may be ready for it now. However, I don't think I'm going to pursue the competitive aspect - just kick the ball for fun at home.

We do go for hikes as a family, go to the park, play frisbee, basketball - nothing competitive. The thing he really enjoys is music and dance - again, we listen to music almost all the time and he dances when he feels like.

I am thrilled that he has finally taken to art - there was a time when drawing a line took so much effort out of him that this has been like seeing a miracle come to life!!

Status of Learning

2008-07-26T02:47:00.001-07:00

The fact that V was reading at grade level at the end of kindergarten was a tremendous thing – we could actually see results. Here was someone not even recognizing his letters. About a month or so into first grade and he reminded me of the same V in the two year room – get up in the morning and look for a book, read something, take books in the car, etc.. It was such a transformation – the only reason he was off the books in any case was because his brain wasn't absorbing the information, he didn't know what was going on and didn't want to do something he couldn't really get himself to do, however hard he tried.

Here I also need to mention the program that his kindergarten teacher used – something called Zoophonics. At first when she talked about it, it was just another phonics program to me but after seeing V all absorbed in it, living it, using it, remembering it, it was something I completely fell in love with. She even did a parent ed night which I attended – it was great. R took to the program right away and the entire family is familiar with it. So recently, when V started playing hangman, the easiest thing to do was refer to his Zoophonics language – so, who are the hardworkers (the vowels) – guess those first and then move on to other letters. This program helps coordinate both sides of the brain, it is kinesthetic in addition to auditory and visual and has just been the absolute right program for him. I can't thank the teacher enough for introducing and teaching it to us.

As Neurologist#2 had mentioned, he does have a learning disability and his spatial reasoning has been impacted. This problem is way harder to overcome but given the way he has come along with reading, I am sure it will be a matter of time – again, the goal is long term. The short term benefits will only serve the purpose of the immediate report card.

His social life along with his brain took a complete battering. His maturity level didn't progress at the same rate as the other children his age. He realizes that other kids think they are smarter than him and say/demonstrate to the effect. So it is really amusing to me how his self confidence has boosted up and he will go upto his sister and say – so you think you are smarter than me, he, he – I did blah, blah – I am smarter than you J.

I am confident that we will see huge growth in every area with respect to V. He is confident that he can do it too. So is the team who works with him in school - which is also important. They also believe in him - it is so heartening. Working as a team with the school staff is an absolute must to see progress. After all, everyone is there to help.

Art is another area – he used to draw just heads – not whole bodies till about the middle of kindergarten. Then he took off and now he draws every single day. Sometimes he might say to me – but R draws so well, and she's so good. Then I remind him – she is 10 and by the time you get there, you will do as well. That certainly helps. It is a matter of hope, instilling confidence in him and truly believing – not questioning, quizzing and doubting.

Weaning the drugs

2008-07-26T02:30:00.001-07:00

When the daytime seizures stopped in December 2006, we decided to start with slowly weaning one of his medications from about the second week. He was on both trileptal and lamictal but the latter was our least favorite given the nature of the side effects he had experienced. So why not start with that one? I have to say here that neurologist#1 when she saw V after about a year and a half said to me to keep the same dosage since he wasn't experiencing the seizures anymore and that it was great.

However, if the medications really had done the job, the effect would not have been visible after so many, many months and I was very sure that we should start the weaning him off the drugs starting with lamictal. Each of those lamictal pills is 25 mg which might seem like really little but they are potent. Each weaning was done in decreases of 12.5 mg no less than six weeks apart. It was a very long and slow process and took a whole year. Through the year we didn't lose hope, nor did we lose faith that we were doing the right thing for V. Also, the school staff never once interfered with what we were doing, nor asked us to stop the process.

The first two decreases were the worst to deal with and it got progressively better. About two –three weeks after the first decrease his kindergarten teacher contacted me about a meeting. I had just started with a new teaching job and it was almost impossible for the two of us to come up with a mutually convenient time and she decided to go ahead and meet with my husband. She and V's aide (another favorite person who continues to work with V at home even now) met with my husband and let him know what was going on in school.

Basically, he was getting more aware of the environment. He was also getting withdrawal symptoms – he had been on this level of medication for a while and it was like a drug addiction. The body craved for that same amount and did not get it. He was showing his frustration in different ways. His behavior was negatively impacted. He has started with these sounds that seemed like he was clearing his throat - these were particularly apparent when the class was working on a silent activitiy. He would do the same at home.

The sounds got progressively less and stopped over a period of time but it took a few months.

At the same time, his aide and teacher noticed that there was a marked difference in his focus, attention and memory - for the better. If, at the time they had not reassured us that it was alright, that we needed to look at the long term benefits, not the immediate ones, I don't know what our next step would have been. However, with all this support that we were getting, we could actually go ahead with the weaning; only it had to be done so slowly so that his school life would not get severely impacted. Every time we went through a weaning, the period of 1.5 to 2 weeks after the decrease was the worst – he would get very emotional, throw tantrums, he had no idea what was going on. However, constant communication with his teacher and aide really helped to let them know what was going on. Also, it was always timed with a big break, or a long weekend. This helped in the fact that he was always with me during his worst period of the weaning.

In January of 2007, V was completely weaned off the lamictal. Ever since, his concentration has been steadily increasing, as has his attention span, memory(both long and short term) and awareness of his environment. He has been able to absorb so much more information it is as amazing as when a child learns to talk and I listen to a question he is asking me – is this truly the same boy? Like I said, he had very little control on his brain and actions – he had become a different boy – and he is slowly but surely getting back to the book-carrying two year old boy I knew.

After about two months of completely weaning V off of he lamictal, I wanted to start the weaning of the trileptal. Here, my husband and I disagreed. He thought we should wait. I thought it was fine as long as it was slow and timed with spring break two weeks out from the decrease. So we started with the gradual decrease of the trileptal. He is now at 75 mg. of the medication down from 375 mg. It is still a slow process but it is getting there. I expect the last one to be difficult.

With the last two reductions of trileptal, his awareness of the environment seems to have taken an exponential leap. He is constantly asking me questions, meanings of words – it is like a whole new world has opened up for him. In fact, his old aide/current tutor said sha actually had to turn off the NPR channel last week because V was asking her sooooo many questions!!

He does have his annual appointment with the neurologist next month and I'm not sure what we have to say to each other but I will go through the routine as best and politely as I can. I am certainly not looking forward to it.

Seizures, night terrors and school

2008-07-25T21:09:00.001-07:00

The last recorded seizure during the day was in December of 2006, exactly three years after his first recorded seizure. It had been a rollercoaster ride, initially with more downs than ups. It was very important that we continued having faith in him and believing in him (one of my really close friends who has a huge vision issue said the only reason she continued to do so well was that her mother believed in her). Not just to have that faith, but I needed to let him know not just that he was to succeed but also to let him know that I would always be there for him and no matter what I would always love him.

He knows the above and is sure that he has a family he can rely on.

So the daytime seizures stopped. What next? Of course, for the longest time I thought there – now I see it again. Fortunately, we were headed down the right path. However, the night took a while settling down – the muscle jerking and twitching went on for a little while – it took time to figure out the right balance of the diet, the timing of the food and the combinations.

Two weeks after the daytime seizures had ended, V started with night terrors. It happened for a few weeks – then stopped. Thereafter, it started again in the summer. At first I had thought those were nightmares and I had discussed it with the pediatrician. Later, in about May/June when I was reading one of the emails in my epilepsy newsgroups I realized that it amounted to a manifestation of a seizure – he had no clue that it had happened. About an hour after falling asleep, he would wake up and ask for me – I would try to tell him that I was right there but it would not register; he would walk about and be inconsolable for a few minutes, all the while crying "Mama". I went back to refer to my Nutrition book – "Prescription for Nutrition Healing" – the book talked about pretty much the same diet as what we were giving him for his seizures; what it also said was that the meats needed to be consumed earlier in the day; this is when I switched his foods so that he almost never has meat in the evening. So another factor to his diet was added – the order.

A few times between the past year (last summer and this summer) that he had the nightmares, I have had to tweak things around in terms of what and when to eat; hence he does not eat any food at all at least two hours before he sleeps; the only thing he can have is his glass of milk and medicine and it should be an hour before he goes to bed. Also, if he has ice-cream or a food with a few more carbs, that should be consumed in a very small proportion and way before the evening.

Life goes on and we keep monitoring. The night is something I am still wary of. If he sleeps beyond that hour, he will be just fine which is most nights. He hardly ever has any muscle jerking or twitching but he does sometimes go through the sensory phase where he must touch things and he will feel to make sure I am right there next to him, hold me and sleep.

The end of the seizures is a big relief of course, but I think emotionally I was too drained to be celebrating or excited. It does not mean the end of the problems at all because his brain has undergone so much battering that it will take a long time to fix things – none of them are instant fixes; however, none of them are impossible. Also, the side effects from the medication are something that are going to take a while to work on.

The school team has been fantastic – his teachers, aides, special ed team, and of course, like I said, one of my favorite people – his principal. They have been so good to him – he loves each of them tremendously and he loves school and that says a lot. Its one thing for R to be happy and love school – but she has always been a model student – excelling academically and doing super work - but for him also to feel so safe and comfortable and trust everyone around him – well, what more can I ask for?

Leading a normal life with food restrictions

2008-07-25T20:02:00.001-07:00

Given all the food restrictions that he has, you may ask – do we ever eat out? Do we ever go anywhere? Yes, yes, yes. It has been a little while to figure out but we go out to restaurants and we go out to friends' places. Yes, we still keep to the diet. We have gone to some really fancy restaurants where I have carried his spinach with us letting them know that he is on a restricted diet.

If he does feel like eating, we have asked at the fanciest of places(they oblige much more easily than the general restaurants) that he would like just plain sautéed chicken in garlic/olive oil and plain salad – they give it without the dressing or any frills and without the ingredients he cannot eat. I think in this regard we are blessed to live where we do because there is a huge population of veggies, vegans, kids with special diets, etc. and restaurants tend to cater more easily to the different palates.

When traveling long distance, I cook enough spinach to last us for the duration of the trip - it means a lot more planning and effort but well worth it. Also, if it is a hotel room and not an apartment kind of hotel, I will always ask for a refrigerator and microwave if it isn't already provided in the room and so far the hotel staff has always obliged no matter where.

At friends' homes, normally he would have eaten his spinach at home or he would eat it there and he doesn't even bother coming in to check what food is available. The only thing he will ask for is water, maybe juice if the other kids are having it and if they are eating popsicle or icecream.

Regarding icecream, we realized that it didn't work very well – it was adding carbs to his regular intake and he would suffer the next day. So we now have a deal. I will take him to the ice-cream store only on a Friday evening or a Sat.. He then can but a mini scoop and he will eat no more than half of it; since we have a fantastic mom-and-pop ice-cream store down the road which used to be our regular summer evening walk, it seemed unfair to say – only R can have it. He is a very content child and will settle for the minimum given. For instance, if he goes to a movie, he will be allowed two pieces of popcorn – he will have that, be content and not ask for any more. We are truly lucky – like I said he teaches us everday. Talk of impulsiveness and immaturity – he is way more mature and grown up in this regard than his parents for sure.

You may wonder - how does he manage in school with treats and parties and birthdays? He is very used to it. Last year, there was one parent in his class who was so sweet - not only did she give him a small animal and pencil when she was packing her daughter's treats for Halloween, she remembered it for Valentine's day and gave him something instead of a candy. V will just say that he isn't allowed to eat such and such food and not take it. If it is something that he has felt bad about, I will compensate by getting him some new coloring material/a small toy/take him someplace he likes so he feels like he did get something special.

Carrying a snack when we go out – its something we would have done anyway. The only thing is that I always make sure I have enough and more because he cannot go for more than two hours without food in his body. We did that today when we went to the Festival of Tall Ships and he was merrily eating his nuts while chatting with the "pirates".

We are also lucky that in this journey his sister didn't suffer nor did she go through any withdrawals/feelings of being neglected, etc.. I did ensure that I was spending ample 1:1 time with her and still do so. Several times I feel like I actually spend way more time with her than him in terms of 1:1. She has also been very supportive in terms of understanding his needs and issues in spite of the fact that she never has faced any of these. She willingly reads to him and helps him with his homework, plays with him, patiently explains things to him – knock on wood again – we got lucky. We continue giving her a regular diet and she is very discreet if she realises that she has a treat that he will be tempted and cannot eat.

So, here is V's daily food intake:

- cereal for breakfast – we have to look and really look for the just the right kind; cereal has milk and ovaltine

- a glass of milk for breakfast with ovaltine (earlier he had medicine in the morning; now he doesn't)

- snack comprises either nuts/banana/yoghurt

- lunch is mainly some form of chicken – sometimes it may be pepperoni

- the afternoon snack comprises milk with ovaltine, banana and nuts.

- The evening meal is spinach with yoghurt

- An hour or so before bedtime is milk with ovaltine and his medicine

There are some variations. He discovered a love for tomato soup while eating it with us at a show in Las Vegas in December 2007(so we do travel and do lots of things, all keeping his diet in mind). So once in a while he will eat tomato soup; he eats raw onion every once in a while along with his salad; he eats cheese with soup; he will also eat the veggie burger once in a while - it contains lots of vegetables. He likes plain sauteed cauliflower - in garlic, ginger and olive oil. Everytime I make something new that I know he is allowed to try, I will ask. If he likes the look of it he will; if not he won't. I don't force the issue. He loves corn but because corn is so high in carbs I restrict when and how much he can eat. He likes very few fruit but once in a while he will eat one or more of the following: apples, grapes, watermelon, cantaloupe.

I am still paranoid about leaving him with anybody - I will not. My mother is probably the only person I leave him with because she has seen him through all his good and bad days and knows exactly what to do. She will also follow my instructions to the T when it comes to his food and schedule. We were lucky to have a babysitter the past fifteen months who was that way too; she took extremely good care of him. I still don't feel comfortable dropping him off for a birthday party or anywhere. It is something that will come with time and it is a mindset I need to get over. Again, given that he is doing better and that he is older makes a difference. Also, having his sister around makes a big difference. I know that she will ensure the right thing for him.

Going the nutrition route also requires a great deal of trial and error and a great deal of patience. However, it is not like pumping in external chemicals and be controlled way more easily. Also, the way V's metabolism works, he shows results right away. If a food didn't seem right, his body would reject it that night or the next day – it makes it easier. Having gone down this path and seen it succeed, I am a very firm believer and passionate about this method.

Nutrition Details

2008-07-25T15:37:00.001-07:00

While going through the epilepsy newsgroups I got a few very valuable suggestions, one of which was the book, "Prescription for Nutritional Healing" by Phyllis Bach. This along with the food elimination and staying with a modified Atkins diet is how we were able to come to the appropriate diet for V. I believe that the way we look at appropriate changes frequently. This was not the end of the road and there are issues and changes as we went along.

Realising that he needed extra calcium, and having given up on administering him supplements, I increased his milk intake from two glasses to three and more recently to four. He does have at least two yoghurt/goghurt servings in a day as well. He needed iron and I had already started with the daily boiled spinach.

I had read quite a few articles and emails supporting Vitamin D whole milk for brain-related issues. So somewhere along the way we switched to whole organic milk for V which is what he still has. Weight was not an issue at the time - it still isn't - he runs so much that he burns any fat that he consumes; in fact, in the past two years though he has grown vertically, he is at the same weight.

He needed a multi-vitamin kind of boost. Again, I wasn't going to rely or even try the supplements not knowing how his body was going to react. For the B and E supplements, I realized giving Ovaltine was ideal – it has no sugar and is nutrition rich plus has a chocolate flavor to it. Ovaltine with each glass of milk meant tons of extra vitamins a day. Extra vitamins also meant I wasn't going to cut out fruit even though the Atkins diet doesn't encourage it and even though fruit contains sugar and carbs – the sugar is natural in fruit. So I give him any fruit he likes; bananas are not a choice – they are a must.

A daily dosage of magnesium is a must; daikon is added to his boiled spinach and cashews being high in magnesium are a part of his daily diet. Other vegetables that I added along the way to his boiled spinach which were necessary for him as part of the daily diet: asparagus (Vit. K), onion and garlic (for their numerous qualities, especially garlic; also over a period of time I had found that if foods contained a large amount of onion and garlic he did way better the next day ), carrot (Vit. A), ginger for digestion. These are absolutely essential in his food. The rest I sometimes add other vegetables because extra vegetables never harm but they will always add value – cauliflower, broccoli, green beans, peas. Now this became a part of his daily diet. As I had said previously, salad was anyway a part of his daily diet.

When we first started with the spinach, and adding and eliminating, it was too hard to eliminate all carbs right away. Over a period of time, I realized that the rotis were causing more harm than the rice – rotis are wheat – so I managed to convince him that this wasn't good for him at all and he cannot eat it. Even today, if I am making them for R and my husband he will come by, smell it and say – something smells good but will not touch it – he has developed immense self-control and maturity in this regard knowing that his head is not going to feel good with that food.

Pasta was harder to cut out since he really loved to have it everyday. I stopped buying and cooking it. On a couple of occasions when I had to go out with my friends and the topic of which restaurant came up I would say Italian because I would crave for pasta and refused to make it at home. If I could crave for it so much then how much was his craving? As a small boy, I have been impressed at his self control on this matter – it is not easy at all. I know that there are several allergy cases these days and those kids must be going through something similar but I imagine the brain is wired to sending a signal that says – this stuff is no good; don't eat it.

We kept the rice up for a while longer, thinking it was the only really solid thing and it was the only way for him to eat the spinach. However, the carbs just did not suit him and gradually we completely cut out rice. Once in a while he would crave for rice and if it was a Friday evening or a Saturday, I would give in to a few grains of rice, literally and that would satisfy him. However, that would make him so very sleepy, tired and out of it the next day, even impacting his behavior negatively that it just wasn't worth it – he realized it too and doesn't ask for it anymore. The same with dosas, pizza – basically anything containing dough was ruled out from his diet. He couldn't eat cupcakes or cake either. For cakes, we decided that he could eat a little icing from the cake – that gave him some amount of satisfaction at having had to eat a bit of the cake.

Vitamins B6 and B12 were considered very important for V – for the brain connections from my reading. B6 he was getting through bananas and Ovaltine. B12 – the only sources are dairy and meat; Meat is way more B12 than dairy; this was the main reason for the daily meat intake for V.

I found out that nuts were a huge source of iron, protein, B6 as well. Almonds were high on the list but he refused to eat them – then we found a savior in these cinnamon almonds that were sold by Trader Joe's – he loves cinnamon and started feasting on these almonds. Raisins – another strong source of iron and fiber – became a part of his daily diet. He loves raisins so it wasn't an issue. Cashews like I mentioned earlier had also become a part of his daily diet. These took the hardest to get him to start eating – somehow we managed to get him to eat the salted ones and he eats them; he now even asks for them. Walnuts and peanuts and pistachios are ruled out because of their omega3 content.

Extra Vitamin C is something that his body needs. He doesn't like orange, orange juice or any of the citric fruits. So I added tomatoes to the spinach when boiling it. There's a ton of extra nutrition that then goes into his body.

I then looked into spices. I had read about cinnamon being a great source of iron - this is before V got hooked onto the cinnamon almonds. Well, why not add cinnamon in his spinach and a bunch of other spices that are beneficial for various reasons including digestion and mucous?

If that's going to be his daily intake of extra vitamins and minerals why not add milk and cheese for good measure? Milk dilutes the strong flavor of the veggies and the spices as well.

All the above took several months to figure out and implement – it was a very slow process and the results also take time to show but believe it or not, the results do happen and they are there for the world to see – not just in the seizures but in every other aspect – his behavior, his memory, his focus, his activity level. He has this spinach concoction every single day for dinner without a complaint. He sometimes asks for it for lunch, particularly when he wants to wrangle out of eating his chicken :-)

Serious consideration of nutrition

2008-07-25T09:56:00.000-07:00

Nutrition/Healthy food – today's buzzwords. After all what is a healthy diet? There is the US government food pyramid, there are all these diets on the market – after all which one is the right one? From my experience, I believe that there is no one diet fits all. Yes, there is a base healthy diet. I believe there is a reason that all those different foods have been created for a reason(so says the ancient ayurvedic medicine too); after all the human tongue is also designed to have the different taste buds – including bitter. Include all of the foods in your diet but keep them to a proportional level. What is proportional will depend on the person.

I became passionate about nutrition after seeing the results on V. I had grown up in a vegetarian household; my lunch to school would comprise rotis and the vegetable of the day – no arguments over that. No matter what the vegetable, I had to eat it. I used to hate almost vegetable – I only loved potatoes and sweet potatoes. So what would I do? I would gulp, swallow with water, do whatever to get those down my throat because I knew my dad and grandma would be horribly upset if I didn't eat it. Well, obviously, it paid off on my health. When I left home for the first time to live in a dorm – I started eating and loving and appreciating every kind of food made at home. My grandmother would be so happy – she would love to make anything and everything for me during my vacation. So I obviously learned from the lesson.

I still remained vegetarian until my first trip overseas which was guess where – to the country known best for its exquisite beef – Argentina I had decided to try every kind of food so I tried fish, chicken, even beef. I didn't like it and continued to stay vegetarian. However, my children were growing up in the United States, and in the Bay Area had friends from every possible ethnic background. I decided to let them eat meat and make their choices as they went along. R loved and still loves chicken. V seemed to like only vegetarian food. This was going to pose a challenge further down.

I had talked about how unknowingly we had started down the nutrition path with V. We had started with a daily banana; when we found out about the iron, I started making him a boiled spinach pulp to eat everyday. For the magnesium I had talked about the daikon. I would grate the daikon in the spinach. Incidentally, daikon is also high in fiber which was helping his constipation problem that had started with the meds. That the flax had caused an increase in the seizures; so the omega-3 foods had been cut; that soy caused his sleep disturbance; so no soy products in his diet – the elimination of foods as well as inclusion of certain foods had slowly and steadily started.

This was going on while dealing with the meds and figuring out day to day what was working and what wasn't. That there was no cure we knew and that the meds would cure him seemed very unlikely. That we didn't want to do a ketogenic just yet; that the VNS meant inserting something inside his body – not at age 4 or 5. So, lets play with nutrition.

We started looking up information on the Atkins diet. The information about the ketogenic and the other information I had been reading on the newsgroups seemed to point to a low-carbohydrate diet. Now, we had carbs everyday for every meal – the rice, the roti; V had pasta every day. We also read that if carbs were consumed, it had to be compensated with fat. So if he ate a waffle put tons of butter on it. The diet was also a high protein one. V couldn't have soy and he had decided that he was vegetarian. What should we do? Lentils are full of carbs. Since R and my husband ate meat, the task became easier. The meat would give him extra protein as well. My husband managed to convince him to eat chicken. Gradually, we introduced different kinds of chicken. Initially, I used to buy it. I then changed my mindset – if my kids were going to eat it everyday and it is good for them, it is better to buy the better variety and know what exactly is going inside. We are lucky that we live literally down the road from a really good natural food store – where I can get healthy, fresh produce. Slowly and surely V was converted to liking his meat. He still goes through phases where he will not touch his chicken – I will let him go a day or two and then get on his case about it being good for him and he knows that.

One more food item that my husband managed to introduced and it has become one of the favorite foods for both my kids – salad. V asks for it every single day – I am thrilled because I can eat any kind of veggie salad any given time. My favorite – cabbage is something both kids eat almost everyday!

Night times

2008-07-25T08:28:00.000-07:00

Through all this time period, however bad the daytime or reasonable the daytime, nights were what I dreaded the most. Culturally, it is common for kids to sleep with parents, growing up Indian. Also, initially, I didn't have the heart to move him away, not knowing what to expect. As the days went by, I realized, it was very important to monitor him in the night as it gave me a chance to think back to what had been going on in the day – his routine, naps, food, physical activity, school, etc. – to see what was it that was working and what wasn't. Also, as I mentioned in an earlier post, he would need the sensory touch almost every night. Even now, he does not necessarily have smooth nights. Yes, he sleeps well through the night but he may have a period of an hour or so when his sensory system needs to be calmed.

Muscle jerking and twitching all of which are related to his seizure activity is what would be a regular almost nightly occurrence. Some nights it would be more, some less.

During the two years of his starting seizures, he would have a disturbed sleep like I said. Every time he awoke, he would have seizures, everytime he then tried to get himself to sleep, he would have seizures – either the grunting or the eyebrows or eyelash fluttering or a combination of all. It was disastrous listening to him wake and help him fall asleep.

The muscle jerking and twitching would vary – sometimes it was hands, sometimes the legs, sometimes, just fingers. Sometimes he would want to feel around with his fingers while his eyes were shut tight. Later, as he got better and his diet was controlled, I could pinpoint certain things that caused the jerking. If he ate chicken that was not natural/organic – that was a sure-shot jerking problem. If he ate ready processed chicken – that was another reason for the jerking.

One thing I found as the weeks went by is that if he spent time in the bath tub his muscles would be way better. About a year after his seizures had started, we had started putting him in the tub because he liked it so very much but with one of us always sitting there no matter if he sat in the tub for a half hour. Sometimes we would stand right outside folding clothes. Also, adding bubbles to the tub made it way better - the texture of the bubbles was good for his sensory being and it helped him feel calmer. The bath is a daily routine with him even now - anywhere from 20 minutes to an hour sometimes - it is also his way to relax, to do imaginary play, to talk to himself or to us - it is entertainment for the entire family.

The yelling in the night – when his sleep was disturbed – I am still not sure if it was a seizure that would cause him to yell or just a bad feeling in his head – either way he was disturbed and it would often be while he was still asleep.

Talking and dreaming vividly in his sleep is something I realized over a period of time happened when he ate certain foods:

- containing Omega3

- containing soy; V would talk complete sentences while deep asleep– it was scary – it would be about whatever dream he was having.

- on those two days that he was on Keppra he had the vivid dreams and the talking sentences

Like I mentioned earlier, right while falling asleep and right after he woke up in the morning and after his afternoon nap, he would have the maximum seizures.

Regression at the end of 2005

2008-07-24T20:05:00.001-07:00

In December of 2005, we didn't go anywhere on vacation. Right before the break, I had decided to talk to my daughter's principal to let her know V's case and that we hadn't decided where he should eventually attend school but that we were going to register him for the same school. She is another of my favorite persons. I have really high regard for her. She also has this way about her that when I started talking, I didn't really talk. I couldn't. I just broke down. She then told me one thing which has stuck with me right through and it comes to my mind even as I now teach. She said – if you come to us trusting us, and telling us the truth, the issues proactively, the teachers will welcome you with open arms and you can work together to help your child succeed – that is so very true as I see him moving ahead now to second grade. It is also true as I deal with other parents' children.

We had visitors home – first my cousin and family, then my husband's cousin and wife(by then they had moved to the East Coast). V was of course, very excited. During my cousin's visit, his regression started. All of a sudden, he was having several seizures. We couldn't pinpoint the cause. The regression continued and got worse when my husband's cousin was around and even though V was so thrilled to have them over and he had a great birthday with them around, he was having these eyebrow twitches every second. The daycare/preschool had reopened but I had decided not to send him; I was at a complete loss.

I had started with my credential program the previous January, first part time, then done full time with student teaching. I had to go on to doing something or I would just sit and wonder what was going on with V and it wasn't helping anybody then. I had to start student teaching in the school right across from the daycare – with someone I would grow to respect and like tremendously – but how could I do anything with this regression? After all, things were supposed to get better, not worse.

On the second day after the preschool had opened, V said he wanted to go in for a bit. I dropped him for a couple of hours dreading it the entire time but he was so happy to be back there. When I picked him up the end of the two hours, he was not doing any better seizure wise, but mentally yes, having spent a really happy two hours.

About two days later, his seizures started getting back to the same level they were a couple of days back – way more in control – and he was able to start back to his routine of daycare/preschool and the district special day class.

In just seven months he was to start with kindergarten. How was it going to work? Somehow, could I get his seizures to stop?

Neurologist#5 and Keppra

2008-07-24T09:30:00.001-07:00

For a couple of months now, we got a recommendation for a particular neurologist who was supposed to be excellent – this came from multiple sources. We had already seen four neurologists. Would this one be any different? We weren't sure but given that he came highly recommended from different sources, we thought, why not give it a try?

So off we went to neurologist #5. The appointment lasted for over an hour; he was a very patient listener and really listened to everything we had to say – the best out of the five. After listening to all we had to say, however, there was no new message – he looked at me and said – why are you scared to try the keppra – I would do it. You should try it out. So ended our visit. I didn't go back not for anything else but the fact that we have really used the neurologist only for prescritption refills for a long time. Every time she thinks we haven't gone in a very long time and we need to pay our annual visit, she will call and ask us to make an appointment so that she can renew our prescription!!!

The neurologist had also recommended that we see a particular nutritionist which we haven't yet done, again because we don't want to put him in hospital through a ketogenic diet and not everything works for every child.

After much debating, my husband said that we should try the keppra – given that quite a few people had said that the drug was really good. This was one time for V that we both disagreed. I was too scared to give it – I had read on enough of my epilepsy newsgroups that if two drugs fail, all drugs will fail. So I told him if he wanted to try it, he could, I wasn't going to give it and be a part of it. So he gave V a very tiny portion of the pill. The next two days were a real disaster. V couldn't say a word – he would start talking and he would have one seizure, then another – he also had another type of seizure by this time – eyebrow twitching. It was horrendous to watch him. After the second day of watching him this way, we stopped it overnight and the twitching and other continuous seizures stopped. This was the end of our encounter with keppra.

This was November 2005. Almost two years after his first seizure. When was this ever going to stop. Call it adjusting to the medication or the few changes in diet which we had introduced, V's head drops had got less intense and his grunt seizures had lessened in the time they carried on. He was growing up as well but the seizures hadn't yet stopped.

Starting to play with nutrition

2008-07-24T08:14:00.001-07:00

There was one particular posting on the epilepsy kids group which set me off about thinking on various aspects which I started trying at different times, with intervals in the middle. This parent had weaned off her child off the only AED he was on solely on the basis of careful monitoring of his schedule and diet. I had to keep in mind that what works for one does not necessarily work for another but there was the hope that this is entirely possible. I don't have to go on with the drugs forever.

So in the middle of 2005 I started with giving V a banana a day. Initially he was reluctant to have it everyday – it became like medicine but he slowly resigned himself to it. Now he has two large bananas a day very happily – one of the best medications one can give one's child – full of potassium and B6, both of which are very vital for brain development.

The other thing mentioned in the message was just the right balance of exercise to tire him out but not too much – this was very tricky. It was something I used to struggle with – he needed and loved being outside but he would get tired so soon – way faster than kids the same age.

Everybody talks about the wonderful Omega 3 and how fantastic it is for the brain. So did this message. I hadn't specifically given V any supplements so around the summer I thought maybe one should try this. So I added flaxseed flour to the wheat flour for making rotis. The next two days his seizures shot through the roof – I had to really think back – what was it that was different about his diet/routine/anything? Guess what? It was flaxseed – removed that and he came back to where we started. So this was also trial and error just like medication; the difference was that we weren't pumping any external chemicals in his body.

We grow vegetables in our garden every summer. That year I grew beets. We had so many beetroots, my mother said lets make beetroot parathas. So we had those very often. This lead my husband to suddenly realize – well, beet seems to be helping him because he seemed to be doing better with beet which meant that he needed more iron. Unknowingly, we had started on our journey playing with his nutrition. We had introduced bananas, now iron. We had ruled out omega 3.

The next big item was magnesium – so I read all these wonderful things about magnesium and how it helps especially with bowel movement, which as I had said had become an issue with V. So I decided to go to Whole Foods and check out what supplements they had for kids, and bought Calcium and Magnesium supplements. I must say that the person in there was very knowledgeable. The Mg turned out to be a huge disaster though – it just backfired and I never went the supplement route again. Whatever extra nutrition that V gets is through his regular food/drink intake. I decided to stick to sneaking in daikon when I could for the magnesium.

Acknowledging people along the way

2008-07-24T07:41:00.001-07:00

So someone might ask me what we were doing to stop these seizures. Did we try something different? By now, I was so scared to try another drug or change the dosage – it was too painful to see him suffer. However, in March when I took him for his appointment with the neurologist, she suggested that I try a drug, Keppra and gave me some samples. I hung onto them and kept procrastinating.

In the meantime, another parent who is a nurse coordinator at the neurology department at the same hospital asked me about V. She had noticed him wearing the helmet so she was sure that he had a seizure disorder. We discussed what had been going on. She also said to me that she believed that Keppra was way better than the other drugs on the market. I was totally disillusioned with any of the drugs, seeing the pain he would go through. However, this person took up our case with the panel of neurologists and neurosurgeons to analyse if what had been done was alright or if surgery would help. Surgery is something we didn't want to do so young but if the panel had recommended that it was the only recourse – who knows? We might have given in even though he was only four. This is another person we are grateful to – she did the counseling from the goodness of her heart – no benefits. I mean it is amazing to encounter such people.

I did try to reduce a little bit of both medications at different times during that summer. It didn't work – he lost bladder control and he had a terrible day. I thought that if we could possibly wean him off of both and then try keppra it would be alright but to give keppra over the two medications already in his system – I didn't want to. Was there another plan?

I also want to acknowledge my husband's cousin and wife, who at the time lived down the road from our house. They were very close to the children. During this bad phase, on a couple of Sundays when my husband would have left for cricket and V was having a particularly terrible morning, with so many seizures that R and I were around him doing things, not leaving him one bit and I couldn't go to the bathroom or for a shower – I mean I could but I didn't have the heart to leave him – I had called them up and asked them to come over. They have dropped everything, come at a moment's notice and stayed on with the kids, giving me that little time to just go to the bathroom and knowing that while they sat on the carpet and played with him, it would be fine. He was so excited that they were around.

Through all of this, I do want to again acknowledge the daycare staff who never once complained nor pushed back but kept up their love for V, as he did for them.

It would have been ideal to have kept a log of what was going on on a daily basis, even maybe weekly. I did start with one on three separate occasions. However, I did not continue for the logs for the following reasons:

I had to have the discipline to do it daily
It was too depressing to record a certain number of seizures everyday particularly if I wasn't seeing any improvement during a large period of time.
I was constantly hoping that things were going to get better the next day and I didn't need to record this because it will go away.

One of my favorite persons is V's speech therapist from preschool. She had done this job for several years but she was able to catch within weeks through her detailed observation what others might take very long or not at all. She remarked that every time he was having a worse day, he would be touching things - he would touch everything and everybody. That also translated into the night when in the middle of his sleep he would want to touch the pillow, feel around to make sure I was around, and his fingers would continue with this for a while before he could fall fast asleep - this might still happen even today during his sleep.

The other staff on the special ed. team in preschool were also great to work with and V liked each of them ( I think he has almost never disliked anybody). We had a great deal to learn from the OT specialist as well and his regular teacher. In the meantime, at his regular daycare/pre-school, the director there would come up with these suggestions through her experience that were more than useful.

In January, it had been a year though since the seizures had started and his meds too; with my disillusionment with the neurology at hand and drugs, I decided to go the internet way, looked up different yahoo groups for epilepsy and signed up for three at the time. Since then, the group epilepsy_kids@yahoogroups.com has been invaluable initially to learn from, then to give advice.

Speech Evaluation

2008-07-23T13:10:00.001-07:00

Upon our return V had his four year check up scheduled with his pediatrician. She asked him a bunch of questions, checked on his progress and then told me that she believed that he needed to be evaluated for speech. She believed that by this time he should have been clearer with some of the words. She proceeded to give me two contact numbers, one of which was the school district testing, which she said was free. This was one of the best pieces of advice we have received. Not only did we not know that a child can be tested while in preschool, we had no idea how behind he was not just on speech but also on a bunch of other developmental milestones. The past year's problems had taken its toll on his brain as well as his physical development.

From being in the 90th percentile for height from the time he was born, he was now in the 80th percentile (by his seven year check up he was down to 50th percentile). He had, however, grown in height and weight so the pediatrician did say it was fine and showed us the graph.

I called the district office as well as the private number. The district office called back after a few days and a month later his testing was scheduled. Not just that, but when the speech analyst asked the reason for the pediatrician's referral, she said that with epilepsy she believed he needed to undergo a complete testing – was that alright with me? Of course, it was alright because I wasn't the expert – she was. Not only are we grateful for this step that took place but also for the school district we were living in – we have come across some incredible people, each of whom has contributed in no small way to V's development.

For the testing, the analyst did say that it had to be done in the morning. I did let her know that the mornings were his worst phase but she said that we would see how much we could do. For the first part of the testing we were allowed to stay in the room. That is when I first realized that his memory and vocabulary had been impacted severely. He could not recognize the same pictures he used to know and the words he used to know. He could not recall any of them. He barely could recognize any of the pictures. For the second part of the testing we were not in the room – for sorting and other things. There was more testing which involved the psychologist and their visit to the daycare to see him in the regular environment. The analysis of the results took a very long time – months – I think at the time there was just one person doing the scheduling and the testing and follow-up. The case load was obviously too much.

We got introduced to new terms – IEP, SDC amongst several others. It was recommended that V attend one of the special day classes – we were asked to check out the classroom. This was followed by a few weeks of checking out the classrooms and the different options. Finally, we decided to give V a shot at the summer school special day class – it was four weeks and only mornings. At lunch, I would take him to his regular daycare/preschool and he would spend a couple of hours there, which is what V wanted. I had given him the choice – to come home or spend some of the afternoon with his old class. This showed me that the daycare was still his secure place – a place he could still call home and go back to. The fact was that by that time he didn't really have friends – he was different and was not like the other kids. A couple of the girls used to play well with him. He didn't have qualms as to whether or not the friend had to be a boy. He did get along very well with the staff who were excellent to him and we continue going every vacation to say hi to them. Even today, the biggest issue remains his social dealings. He is able to charm the adults all the time. It is going to make friends amongst his peers.

Not only was his vocabulary not at par, he had speech processing problems - when told something or asked a question he needed time to evaluate what was said; he may not be comprehending it a great deal of times - to think that the previous year he had really suffered because none of this was known and people expected him to respond right away. He wasn't intentionally being stupid; when he would get frustrated, he would act up.

Even today, V needs processing time when asked a question or given a direction to follow. One needs to be patient and give him some time to absorb, analyse and respond.

The testing also showed that he needed a great deal of Occupational Therapy(OT) – his hands had a distinct tremor and his fine motor skills were really impacted. Whether or not he could ever right or would always need a computer remained a question. Academically, he could barely recognize letters and he could not remember his color labels. Bringing up this child was going to be very different from his sister – it gave us a whole new perspective and to value and celebrate each child for their differences.

I always think back – if the pediatrician had not recommended his testing – what would have happened? When would we have realized that he needed help on several fronts? How would we have gone about teaching him?

More on Lamictal, memory and impulsiveness

2008-07-23T09:28:00.001-07:00

While going through acupuncture, one of the doctor's assistants who was really fond of V and did his needles almost every week for him, suggested that to calm him down I should try feeding him daikon. This was my very first introduction to something nutritional to help any of V's problems. Daikon is high in magnesium and its skin even contains protein. Otherwise, nutritionally, I would do what was a normal, healthy, balanced diet without really changing V's habits at the time. His favorite food was pasta in any form; he also liked rice and rotis(Indian bread) a lot as well as dosas. I would often make veggie parathas – mixing veggies in the dough while making the Indian bread – something that had become a habit since R was a year old; it was a painless way to get veggies in.

V was extremely impulsive. He would have the most spontaneous reactions always. He could not control his impulses – the combination of the seizures and AEDs was deadly. While doing my credential, something that was taught in my educational psychology class stuck in my head – one of the most important thing to teach children is delayed gratification. I knew that R already had it. She would be saving up, careful, calculating. V needed a great deal of work in this area. So the calming that this doctor suggested was useful. I started grating daikon in his food - since daikon is white and grated small it blends in easily with the creamy pasta sauce or even rice.

While increasing the dosage of lamictal, it had become at first twice a day, then three to four times a day for the medication. He was upto 200 mg. of just the lamictal per day – those drugs are really strong. And V was still 3 years old.

Imagine being pumped with drugs day in and day out day after day – at that time for about seven months and being expected to behave and do things like everybody else – it was like asking for the impossible it seemed. The unawareness of the environment would translate in many ways. For instance, if we went to the library, he could not asses how loud his voice was. This was disturbing to people around but he was oblivious to this fact. Given that he was unaware, this had to be ingrained in him. Also, given his memory loss, he could not remember the expected behavior in the library. The other way the memory issue would come up is that he could not remember people's names. If he was introduced to somebody, he would ask for the name again. Within a couple of minutes he would ask the same person his/her name again.

People didn't realize it. They would say, don't you remember – my name is xyz. The same thing would happen with other statements. They would go, don't you remember – I told you… and of course, he really did not remember. For that matter, he needed to know what the word remember meant, just like the word stop. All this gave me a lot more insight into the kind of language to use with kids – how some language even if unintended can really hurt the child. It is the same as when he could not identify his color labels. People would ask what color do you want? He would point it out. Several times it would be like – don't you know this is blue or yellow? So when I hear parents complaint that their child does not know the colors or letters by a certain time period, I am itching to say something – each child to his/her own. Don't look at the short term gain. Look at the long run – the child will be fine in the long run. Does it matter whether or not the child got an A in a certain subject in a certain grade or is it important that eventually the child succeed in life later on? That was what we came about to learn.

The increase in the lamictal did not seem to lessen the frequency of the seizures. They seemed to be about the same. So I figured why not keep it at the lower level? This was the first of many decisions I would make on his medications without consulting the neurologist. All along, we thought we need to do whatever was suggested by the neurologist – after all doctors know best. We were not trained, nor did I have the expertise in anything related. At least after doing my teaching credential I can claim to be a little more knowledgeable in the field of child development and psychology as well as special needs and accommodations.

The decrease didn't do any harm. This is how it continued. This continued until V's four year check up with his pediatrician. Everyday I kept hoping and wishing that this would magically stop.

In December, however, upon my husband's insistence, I agreed to a vacation – after all, things weren't exactly changing here. I had traveled with him to India. This was just a three hour difference – to Cancun. He loved the beach and water so as long as we were watching him, it should not be any worse. So we did go, we had a good trip We also went to Chitchen Itza where V climbed the 100 steep steps. We came returned to life back here.

The journey with acupuncture

2008-07-23T08:15:00.001-07:00

The first visit to the acupunture place was not exactly exciting for V. Two persons took his pulse, getting data from each finger and a few other things. He was actually fine through all of this. We were then shown into a room where the doctor arrived, asked me with what was going on and went on to put a few needles in different spots on V's head. Now this might seem scary but it wasn't. The needles had to be maintained this way for an hour or so. This meant that I had to find some way of keeping him with those needles for an hour – couldn't have been a more challenging task. The good thing was that he didn't necessarily have to sit in the room for an hour. While the needles were in place till the time they were to be removed, he could roam around the clinic. There was a turtle and a crocodile further down the hallway. There were patients of all ages for all kinds of treatments. V loves to talk to everyone – he always did – and the office staff always talked to him, entertained him, kept him occupied.

It took two to three weeks for V to get used to the routine. I would bring along a snack, some toys, books. A few weeks later we bought an iPod for V – he loved to listen to music so much and the earphones and the music combination was a great security factor as well as a way for him to stay in one place. He was so used to going there – come Thursday morning – he knew everyone in the clinic and they would look forward to his visit; at the time he went there were practically no other kids. We would do the needles and get back.

The one thing that I believe the acupuncture helped him with was his sleep. I had written about how his night sleep wasn't great at all – the yelling stopped at about this time and despite his seizures in the night, he seemed to sleep more soundly. A couple of months later, the acupuncture doctor suggested that we try giving him the herbal medicine. We decided to give it. I had to boil all these herbs with lots of ginger, strain it, put it in the fridge, giving him a spoonful once a day. For some reason, V never complained while taking this medicine. The frequency at this time seemed to be a little less. Now when I say less or more, he has so many that it was almost impossible to keep a track of the count. However, if he didn't have one for several minutes it was great, the situation was such.

I also don't remember if I mentioned this but V continues to sleep with me - I didn't atttempt to move him to his room once his seizures had started and it is my only way of monitoring his night movements as he will often just have jerking - no sounds and there is no other way of monitoring how he is doing.

With the regular acupuncture and the helmet on V's head, we started keeping his hair really short – that way he would get less sweaty, feel a lot less hot, the points on his head were easier to find. The strange thing is that when we would go for his haircut, using the machine would cause him to have a head drop. Even while inserting the needles on his head. If one touched those spots on his head with fingers it would cause a head drop.

We continued acupuncture for about a year and when it seemed like it was status quo, we decided to stop both the acupuncture as well as the medication. I still want to take V back one time to meet with the doctor so that they can see the change – the staff was really extremely nice to him.

Bruises and Triggers

2008-07-23T06:18:00.001-07:00

Bruises on V's face – something that was so prominent starting May through June. Both the Mother's day and Father's Day photos have V's scars on his face prominently displayed. The helmet could cover his head, but not face, which is what happened on two occasions where he had a head drop and hit his face – once on the concrete wall and once on a pillar. Along with this came another issue we had not thought about with our older one – body balance. He did not have control over his body – this is just one aspect of his sensory issues that he continues to face. Overall, he has good balance now but the sensory aspect is prominent. This is why he has always been an affectionate child, wanting hugs.

Through all of this, there were a large number of people praying for V to get better – family, friends, people we encountered otherwise. We are really grateful for those prayers. My husband and I both had faith that he would get better – when was the question. To get to that point, the patience was too much.

One strong faith tip which I got from my oldest cousin – whom I really like and who has gone through way more tragedy than most human beings – she said every night when he sleeps – put your hand on his head and let him know that he is going to be just fine. He needed to have that confidence that he was going to be alright. I did have the faith but needed to convey that to him. The other thing I realized was that when people called, even if it was the neurologist, to ask me about him and I talked while he was around it would upset him greatly. Getting upset was a trigger for seizures for him those days. So I stopped talking about his condition at all when he was around. He may have been only three and immature on several other aspects, but knew that this was about him, this wasn't good, positive talk and it wasn't something that would help him.

Like getting upset, there were other triggers that would cause his seizure frequency to increase – like when the weather was gloomy – that may contributed to his lack of appetite and not feeling so good in Mumbai with the monsoons; other triggers included crowd and noise – it also impacted his sensory being; he still cannot take it and we avoid going to any show/crowded situation. Sleep was of course, a huge factor. He needed to sleep the right amount at night as well as in the afternoon. We decided to keep to the schedule. We had stopped socializing quite some time back in terms of inviting people over for dinner or going over – we would do it once in a while. We would go and leave by 7:30 or so; we still leave by 8:00/8:30. People look at us like – but this is a weekend. Weekend or not, the routine had to be kept and still does. Extreme heat would be a factor as well as when he felt really hot and for some reason he got sweaty and hot way faster than other kids. Even though getting upset is said not to cause a seizure in cases where he would get extremely upset he would have head drops.

The other thing we noticed is that he needed frequent meals - we normally stuck to the daycare schedule at home for breakfast, snack, lunch but it was clear that if there was a large time period between meals anytime for whatever reason, this would cause fatigue and higher seizure frequency.

Another big factor was bowel movement - if he did not have regular bowel movement, his seizure frequency would shoot through the roof. Now constipation had never been a problem with him before his meds. However, right after he started with his first AED, regular bowel movements started being a big issue. This was something to always keep in mind - had he gone to the bathroom? He was excellent with drinking water so that wasn't a problem.

Another trigger which I absolutely dreaded was if he caught even a simple cold - it would make his seizure frequency go very high. Over a period of time, I started giving tylenol for just a cold or a cough for two reasons:

1. It helped V psychologically. Even now, if he is kind of not feeling good, he will tell me to give him grape juice - the kids tylenol.

2. For some reason, it actually did help with his cold and hence the seizures. It would only be one dose - no more and it was like a magic pill.

Eucalyptus/Vicks was another big trigger. He would have head drops galore after applying either which would have been done earlier if he had a really bad cold. It was discovered by chance and I stopped applying anything containing eucalyptus or camphor.

He never did have a problem with lavender but I read in a couple of places about lavender being a trigger so I stopped buying or using anything containing lavender. V is so good about these things that if are out somewhere and he sees a scented soap, he has me check the ingredients to check if it is alright for him to use it.

Between the time V was one and the time the seizures started, he wheezed those two winters. The few times that he wheezed after his seizures started and we had to use albuterol, the frequency of his seizures increased - again, I think for him, once his medications got mixed up with other drugs, his body reacted negatively. For a long time, I wondered - was there a connection between his wheezing and his seizures? The doctors insisted that there wasn't. There probably wasn't a connection. However, I still keep wondering.

While I was gone to India, one of my husband's co-workers had recommended an acupuncture specialist near home. So when I came back we decided to check it out. I had never done it myself but this was at a point where insurance didn't matter – what mattered was getting him to be alright; check out other avenues. We started on a new adventure while still playing around with the lamictal dosage.

Traveling long distance

2008-07-22T20:14:00.000-07:00

Now, all along from the first week of March until the second week of June, with my mother around, I was able to sleep better whenever V slept with her. He would play cards with her and she ensured that when she was with him she didn't leave him for a second. That gave me a few breaks. My husband and I had actually managed to go out for a couple of walks around the block.

During this time, R had enjoyed her kindergarten year, she loved school and loved to play with her brother, oblivious to his abilities and problems. He really doted on her – still does – and would look forward to spending time with her. We were fortunate that somehow she hadn't got impacted through this all.

My husband had also gone to India in May due to a family tragedy. He would not have been able to go if my mother was not around as we couldn't leave V alone at all. Before the tragedy, like I said I had booked tickets for me and the kids and mom in June and my husband in July and he was going to return with us.

My really good friend in Chicago suggested that we show his reports to a good friend of theirs who heads neurology in a hospital in Illinois. I spoke to neurologist number 3 who again did not have another diagnosis nor another suggestion. It was even more frustrating.

The neurologist suggested upping his lamictal dosage and it was to be increased to its peak while I was traveling. I was wondering if that should be done and she said it shouldn't be a problem. She also said that it was fine to travel. Looking back, I think we should have been conservative on the lamictal increase. Along with the dosage increase, about two days before we were supposed to fly, he started having this eyelash fluttering. His eyelashes would flutter a great deal before he actually fell asleep both for his afternoon nap and his night sleep. This was yet another form of seizure we were seeing. It was incredible – could there be so many types and we only knew of the grand mal before this started.

Monitoring his dosage while traveling and the the time zone change (a complete difference of night and day) was challenging to say the least. Once there, of course he was happy to spend time with family but in terms of his overall being, it was a disastrous trip.

It felt like his seizures had got worse, he didn't like the milk and it was so very difficult to get him to swallow his medication which had been smooth sailing at home, he didn't seem to have an appetite at all and I am assuming that with the general changes and stress that is what caused his oral tendency as well – he had none of that at home – the urge to bite or put things in his mouth (he went through the same oral pattern for a few weeks at six and a half - it was his way of relieving stress because he is otherwise really happy).

All the other problems that I mentioned earlier – the language processing, the speech, the behavior impact, the distractions, the tempers sometimes because he would get very frustrated when nobody could understand him or if someone insisted he do a particular thing – it was all too much for the boy. It was difficult to explain to people around – this is not him – this is what he has become, this is what he is suffering from – he has no control over his actions, nor over what and how his brain is working. One cannot say stop and expect him to stop - at the time.

While in India we met neurologist number 4, this time in another country, who suggested we do another EEG, another MRI and start him on another drug – no diagnosis, no other solution. This is the way it was going to be – something my husband and I had resigned ourselves to, unfortunately. I gave in to the EEG but refused to go to the hospital thereafter. This boy who had never cried in all his visits to the hospital and clinic and in fact, had enjoyed them, cried a lot for the first time. It was one of the saddest things I could have done to him. We refused to do the MRI and that was also the end of visit to neurologist number 4.

When my husband joined us later on, I was ready to go back with the kids. V's sleep pattern was still disturbed – some nights were awful – I would have hardly slept. He was very happy to see his dad. On the way back we actually went to the Netherlands for a week. Even though V was having his head drops and his eye flutters, he did visibly better when we were there. The other factor was the milk – the fresh milk there – both R and V gulped it down like they hadn't had milk in years. I know that there is now the tetrapack milk which we used with the kids the next time we were in India. However, the taste still remains different and they are still reluctant to drink it.

We got back, settled down and a few days later started with getting V to the daycare a few hours four days a week. I was called in a few afternoons when right after his nap, V seemed to be doing way worse than normal. The cell phone is something I have carried with me everywhere for four and a half years, no matter if I am on a training run, running a race or in my classroom with the students, wondering if it will ring with that dreaded emergency call.

Second neuro and MRI

2008-07-22T19:41:00.001-07:00

The week after starting V on his lamictal, the much-awaited appointment with this highly knowledgeable neurologist arrived. We had to wait for a full two hours before the doctor showed up – there was no apology, given that he had made this three year old wait for so long. We respected the fact that he was knowledgeable but did not agree with the attitude. Besides, he didn't add anything to the medication/diagnosis. The two things he said though that were discovered much later were that he would most likely have a learning disability and his spatial reasoning would most likely be impacted. The term learning disability meant nothing to both of us – I mean he was all of three. Like I said earlier, he was always different from his sister. If he didn't know his letters, it wasn't something that we thought was important. He did like doing puzzles, building, other games.

However, with the combination of the constant seizures and the medication his brain was undergoing a transformation. This boy whose vocabulary was super at age two couldn't remember words, was having a problem expressing himself. His short term memory had started getting impacted in a very big way(in turn his long term memory too) and we didn't have a clue at the time. The most important thing was – give us that magical wand to stop the seizures instantly.

The detailed MRI followed, again under sedation. Again, the hospital staff was excellent in their dealings with us and V so much so that V actually enjoyed his time in the hospital. He did just fine other than feeling drowsy the rest of the day. The result of the scan showed that V had a dilated vein in his right temporal lobe which was most likely the cause of his seizures. Other than finding out about the abnormal cluster and the dilated vein which didn't help either his seizures or the diagnosis it seemed like a pointless exercise which is why when the MRI was suggested to us yet again by a neurologist in Mumbai, we refused to put him through this again. After all, it seemed like each neurologist had his/her preference of medication and everybody was doing a trial and error of recommending one drug after another. When was this story going to have a satisfactory ending?

The journey with lamictal begins

2008-07-22T19:26:00.001-07:00

Since the daily seizures were continuing without a respite but the trileptal had controlled the complete or grand mal seizures, the neurologist suggested we start him on lamictal, yet another drug. She said that it was recommended for children 4 and up but because V was physically big for 3, he should be fine. She also said that the most severe side effect was a rash which has been known to be fatal on a couple of occasions; if we were to start him on this, we should increase the dosage steadily so that the rash would not appear. Given that we had very little choice – or so we thought then we decided to take the plunge with lamictal. Started with administering the first dose rather shakily with the background fear of the rash.

The head drops started increasing. What I wonder is what would have happened if at the time we had phased him off of the trileptal and started the lamictal separately? We were told then that the chances of two medications working in combination were high if one didn't work standalone. However, two medications in combination also change the chemical balance and the body gets hooked onto both the medications. It is a difficult choice. It is also difficult every time one changes the medication or the dosage like we found. The way each child reacts is so very different. Nothing is known – will the medication work or not? Will it cause more damage? Will the side effects increase? It is purely trial and error and an extremely frustrating process, particularly while seeing your own child suffer. Is there an alternative? Maybe and maybe not.

At the same time we read about an effective remedy, particularly popular in Australia for some reason, called the ketogenic diet. This seemed too drastic for a three-year old. If all else fails… We decided we didn't want to go that route just then. I also looked up ayurvedic medicine, which is holistic and dates back to thousands of years back. Growing up in India, I used more of ayurvedic medicines than the aleopathic ones. Looking up the sources, there was a particular institute which people recommended to us. I was to go to India with the children in June and I thought maybe we should check it out. I exchanged emails with a person in charge of the program. He asked me for information and informed me that he would have to be admitted into the facility for six to eight weeks, that he needed to be restricted in his diet and that they would look into seeing what could be done. They had a confirmation for him. My husband and I discussed this, postponed his date twice and finally decided to abandon the effort.

Now, with the introduction of lamictal, he seemed to need a lot more sleep in the night and he was sleeping an hour and a half in the afternoon. His body seemed to need it and his energy level was way below what it was earlier. He continued to be off reading and totally on the screen. His head drops were getting dangerous. The maximum frequency was still in the mornings when he awoke and in the afternoons after his nap. He had hit his chin/forehead a couple of times on the sink while brushing his teeth in the morning. At the daycare, there was the danger of him falling and hitting his head on the concrete. So we researched getting him a helmet. The daycare director actually researched and took print outs and gave them to us. We discussed the helmets and my husband and I decided to get him a sport helmet so that it would be less conspicuous. Initially he had a bike helmet. I then spotted this girl in R's school with a different sporty helmet. The mom said it was an all-purpose helmet so we went and got that and V used it for almost two years. It protected his head and ears very well. The downside was that it was very heavy and he had to wear it everytime he was playing outside at the daycare. When he went to the park with either my husband or me or played at home in the yard, he did not wear it as we would watch him like hawks – not leaving our sight for a second so as not to let him get injured.

Given all this how could we lead a normal life? Well, we decided to do so as far as possible. Keeping his sleep times more or less constant (which we did earlier anyway), we would go out/library/park/restaurants. Our visits to bookstores and libraries were few as he was really in an off-book phase. Now, thinking back, the poor boy didn't know what was going on with his head, he knew he couldn't read. Even if he tried, by the time the first sentence or two was read, he would have a head drop, would be confused, would not know what was going on with the story, all of which contributed to his getting more and more distracted. As a result, his behavioral problems started, his attention started reducing, his self-confidence started plummeting and he stood out from other kids. There wasn't a concept of consequence in his dictionary. He couldn't understand that and didn't till he was almost seven. His awareness of the environement was almost non-existent – the drugs probably do that – suppression. What we didn't know at the time is that his speech issues had also started – very common with epilepsy and AEDs. Not just speech as in talking but speech processing, which continues to be an issue. If someone said "Stop" not only did he not understand that stop means stop but to even register and record and process that one word took time in his brain. How then could one be expected to deal with this situation and explain to people around that these are issues that he deals with constantly?

In the meantime, we have to say hats off to V for continuing to be a happy child and constantly smiling. He was an instant hit with the adults and still is. He didn't have friends and still doesn't really have friends.

Later, as his lamictal dosage increased, we also started dealing with double vision problems and this eventually led to his getting his glasses.

Also, V's sleep in the night was badly impacted. Not only did he never sleep peacefully, he was having these grunt seizures in the night. Often he would get up in his sleep and yell. His sleep was really disturbed. While falling asleep, he would have those grunts before he was really asleep. I wasn't sure about his yelling at the time. Monitoring his night movements became as important as his daytime movements. All along I was hoping – this medicine will now work and he will be cured; tomorrow I will wake up and will not see any of these grunts or head drops and he will be just fine. So much so for optimism!

The MRI

2008-07-22T11:48:00.001-07:00

The MRI which was ordered on January 2^nd was scheduled for March 16^th so the day arrived with V being on Trileptal now and Tegretol being a thing of the past. The complete seizures also a thing of the past but the constant grunts/head drops/absence seizures being a daily occurrence. With this came changes in V's behavior and just himself. The teachers in the daycare noticed the difference – his two year old teacher whom he was really attached to could see the marked contrast from just two months ago as well as his lack of love for reading. He continued to be a happy boy though and fortunately, since he was otherwise healthy, he continued to be fine in other respects.

The MRI had to be done under sedation. This was obviously a big deal and we did it such that we could still drop R to school and then go. The staff was fantastic but to see V going through the sedation – then he was lost to us when he was wheeled to the room till they brought him back. He was talking to the staff all along on his way in. He was not in the least bit scared and the staff explained every step to this three year old so that he knew exactly what was going on – the respect that the staff have shown to this child is something that is really touching and I really feel like that made our hospital visits something to look forward to. When in recovery, V could have juice that they gave. Being a children's hospital recovery room, the room was full of little ones all around, including a nine-month old at the next bed who was having her third liver transplant. That was sad consolation that our problem was so tiny in comparison.

The pediatrician called with the results and said that it showed an abnormality in the right temporal lobe of the brain. She showed me the pictures so that I could understand what she was talking about. Both she and the neurologist said that most likely but not definitely was that the cause of his seizures. By then I had read that the cause is unknown for more than 90% of seizures.

The recommendation was that we do a more detailed MRI where a fluid is injected into the body and its path followed to the brain so that they could focus on the specific area in the right temporal lobe. Wasn't I learning more about the brain and I was getting more and more interested. At the time I had to take up a major, I never wanted to do medicine.

In the meantime, life has to go on – V got hooked onto watching more DVDs as that became his source of security. He also got hooked onto working more on the computer. The other thing we started noticing was that he was able to identify the letter "s". He would realize that the letter was "s" but would remember it. He was unable to identify, remember and recall other letters. I didn't give it much thought – after all, he was a boy and he was three – he was very different from R from the time he was born (even before). So why give it more importance? The beginning of just a few issues. He didn't know his colours either and the director of the daycare who had dealt with infinite kids had given me several examples of different boys who didn't know their colour labels until after they had turned five. So it obviously wasn't a big deal. In the face of his daily seizures, nothing was a big deal.

Trileptal and miscellaneous

2008-07-22T09:57:00.001-07:00

When we started trileptal and stopped tegretol there was one full day on that Sunday when I didn't see any grunts – that was definitely a good sign so I was hopeful that it would all be alright. Not giving him medication was not an option at the time as originally he had had two seizures within four days which were not febrile (due to high fever). So, off we started by giving him a small dose of trileptal and increased it gradually till the level at which he was needed to be at. This medication was in liquid form and easier to get him to swallow. By now he was also used to taking medication everyday and would take it almost willingly. The very next day the grunts reappeared – they were changing in nature and would last a few seconds. He also started wanting to sleep a little more with this medication. He would seem tired in the morning.

We now entered the phase where a morning was something I absolutely dreaded. It was always a matter of how bad the morning was – bad, worse, even worse in varying degrees. He would have the maximum grunts at the time. The length of those grunts varied. He would have several in the day with the maximum being right after his afternoon nap and his morning wake up time. Normally, he would be asleep when I left to drop R to school and on my walk back I would be wondering on his morning.

Within a few days of those grunts, he also started with small head drops – there would be this sound, his head would drop and he would be back to normal in a fraction of a second – yet another type of seizure. Now, we were thinking that these are harmless little seizures versus the complete ones. However, a seizure is a seizure and the effects on the brain are unknown. Who knows what is going on up there? Also, the other thing that was happening is that the medication that was being taken in through the mouth was being processed through his digestive system, entering his blood stream and entering his brain. His brain was getting tegretol so far, which then turned into trileptal. It was getting a different chemical balance in the brain. Who knew what was going on up there?

He must have been very confused and felt really miserable and in spite of the fact that he was really good with his words right until then, had feelings going on that he could not express. He used to take a book to school every single day to his daycare to share with his class – now we have stacks of kids books at home and he would spend time every morning selecting his book. Right after his seizures started, he refused to touch books. If I asked to read to him it was always a no. Little did we realize the damage going on in his brain, none of which his neurologist had warned about.

R was the kind of child who had started reading and writing at age four, not because we asked her to or wanted her to but because she just loved it. We never gave it a second thought and assumed that V would go the same route given that there was no difference in what we were doing at home between the two of them. There were so many surprises in store for us. This is why I really enjoyed and thoroughly recommend the movie, "Taare Zameen Par" to an Indian audience. Special needs, special education, accommodations for children is still an alien language to the vast majority of the Indian population, however educated. It takes your own experience to empathize with a child who is not "normal" in the sense of the word – how to use the right language, how to deal with him/her, how to educate the child, how to give the child the right direction, how to understand what his/her limitations are – these are things that one needs to relearn. In a society and culturally where we are taught that one has to get As no matter what the subject, that being smart only means getting good grades, that a child must be able to recite facts at a young age – with very little emphasis on either the creativity of the child or adapting to the varied needs of the child – these are things that we have learned as we have gone along and like I said, V teaches us everyday. The brain is such a fascinating object!!!

Side effects of trileptal – for every medication the side effects run into two pages or more and if I were to list all of them or worry about them all, I would be worried for the rest of my life just over this. Instead, focusing on the biggest impacts of this one – low sodium levels and a tremor in the hands. The tremor was not visible at the time. For the sodium levels it meant regular blood tests to ensure that it would not drop to unacceptable levels. So now we no longer needed to worry about the liver side effect.

The tremor is what impacted his fine motor skills and, in turn his ability to write or draw at the expected developmental level. At age four we thought, will he ever be able to write? When I started seeing his drawings later in kindergarten and first grade, it was something magical. I want to treasure each of those moments - the first time he could draw a straight line, the first time he could draw a whole person, the first time he could draw a circle, anything recognizable by the general audience...

Journey with Trileptal begins

2008-07-22T07:23:00.001-07:00

When I started writing this blog, I wasn't sure of how much detail I could put down. My intent is to help someone out there who might be going through a similar situation. It is way easier to put things down and talk practically about it now that the situation is better. At the time the only concern was his continuous seizures and how we could help make it better.

The day after the "make me feel better" he was looking and feeling miserable. If R were not so independent at such a young age, it would have been a disaster. Also, she would go to the same daycare after school with her good friend. She couldn't figure out what was going on and the one time I tried to tell her, she blocked her ears and said, I don't know what a seizure is, I don't want to know about it or what it does. Looking back I realized that she was close to six which is still little, though we might have treated her like she was older and she was really upset about her little brother, but she didn't want to admit it. Hence her shutting out the truth. She has been a source of tremendous support for him. When his speech got impacted and on several occasions I might have had a hard time figuring out what he was saying, she would immediately translate and she could really figure out what he wanted.

My mother was arriving the next day which was a source of huge excitement for both V and R. I took them to the airport in the afternoon, V in his drugged state as I remember. The one picture at the airport of his that I can recall in detail while we were waiting is of him glued with his nose to the window watching the monorail go past. That night was probably the most painful. He barely slept, woke up dreaming about fairies, kept saying shoo away the fairies, and imagined the tree outside our room to have fairies there. He was awake from about 2 on. He was miserable. The dosage has been upped. I was to learn later that the AEDs can cause hallucination and can impact your sleep both ways – too much or too little sleep. He slept at about 8:30/9:00 the next morning from sheer exhaustion.

All along through this, my only outlet was running – I have enjoyed running since I was a little girl, had kept running in between my kids as well and had taken it up again seriously after V turned a year. After V's seizures, like I said, I wouldn't let him out of my sight. When I finally had started leaving him at the daycare for a few hours four days of the week, I would run in the park right next to the daycare thinking that they might call me any moment now – that I couldn't leave him. Alternatively, I would run on the treadmill at home – home was just a 10 minute walk and a 2 minute drive from the daycare. Like I had said earlier, that was second home to him – the staff had known him since my pregnancy and were very, very fond of him and his sister. That made a huge difference in giving me my space and time that I didn't realize I needed. I had my regular park friends whom I would come across and I couldn't talk straight to anybody those days about what was going on with him.

Anyway, the neurologist said that it was alright for him to sleep this way – didn't really give it much thought to the hallucination. The grunts had continued and she didn't think there was anything to that either. By now I was convinced that they were a form of seizure. Two days later he had another complete seizure. This was a weekend and I called the neurologist's emergency. She agreed that this medication(Tegretol) had stopped working and that we should phase that out in two days and start immediately with trileptal. Again something I would learn later – the medications work upto a point. With some children, they continue working just fine with the same dosage and medication. With other children, when they fail either in dosage or content, the chances that anything will ever work is almost zilch. It is a cycle one goes through – works upto a point, then stops. The other fact is that even in these four years, there are several other children's AEDs that have been put out in the market. At the time there were a few choices way better than a few years prior to that but not as many as now. The dosage is measured by the child's age and weight and needs to be gradually increased. One cannot see the effect right away – it has to take its course – that is the hardest part – when is the optimal time? How do I know the medication is right for my child? What about the side effects? What else gets impacted? How long is this going to continue? That and more are questions that nobody has answers to. What are the short and long term consequences on the brain? Again, at the time one isn't thinking about that as much as wanting to see your child stop suffering. As V's school psychologist recently put it "My job is to see how everything fits in together; to see how his brain works given the bombarding that his brain has received".

The Beginning of the nightmare

2008-07-21T18:25:00.001-07:00

To think that all this was happening to me and my child – well, it was really hard to digest. One hears of things happening to other people, but however much one tries, it isn't the same as when something is happening to you is what I did discover. I was losing it. This is something we had no control over. It also wasn't something where we could see the result right away.

Now, it so happened that V's four days of daycare were every weekday other than Thursday. He had had his first break from the medication on Thursday. Thereafter, the next three Thursdays he had bigger episodes of seizures. It was kind of obvious now that the problem wasn't going to go away magically and not having the right knowledge, I would rely on the pediatrician. After two repeat seizures on Thursdays, she said that her knowledge would only carry her this far and we would now need to see a neurologist. Not having needed to know who or what a neurologist was thus far in life, it was another adventure. Well, she suggested one and in the meantime, said she would refer us to another well-known neurologist whose appointment would take longer. Not knowing what my choices were, I just complied. I was at a complete loss and just wanted to go along with anything that was being suggested.

In the meantime, my mother, who would come every year to spend time with the kids, said she would come in March. She had booked her tickets and the children were very excited about it of course. I had no idea just how much help she would be this time around – way more than when she helped with my post-deliveries and other things. She was my life-line those three months and I would have most certainly found it almost impossible without that moral support.

So, come February 26^th I was off to see the neurologist – a good 40 minute drive. That morning something strange happened. I was giving V his shower and had got him out of the tub. He was standing on the potty seat while I dried him and he began to make these strange sounds. My heart started beating triple fast – what was that? I called to him – what's going on? He couldn't figure out himself and got worried. He panicked more with my stress. The poor boy – he used to love the water and the bath tab and his swim lessons – everything was stopped for fear that we didn't know what was going on. He would be put in an inch of water in the bathtub and removed within minutes with one of us monitoring his every move. Prior to the changes, he had started having his own shower. Little did we realize that this was a very small price to pay.

He then made those grunting sounds a few times between the bath and the time I got him to the car. I thought back several times to that day wondering what had changed, what could have happened? I learned later that several AED's (Anti-Epileptic Drugs) can change the very nature of the seizures that someone experiences. The grunts were one of several types that we would see with V. Could I just go and unplug the medication? No.

That day's appointment with the neurologist lasted over an hour. V sat and played quietly with the different toys while she and I talked. She then decided to up the dosage of the Tegretol as he wasn't experiencing any side effects and we could do so. Throughout that period he didn't make any grunting sounds. So when I had brought it up with the neurologist, she said we could ignore it. In my mind it felt like either he was holding his breathe or it was a seizure. The moment I went back to the car, V made that sound again. It would be a bunch of grunts one after another for a few seconds. I rushed back to her office but she again said that it didn't seem like it was anything important. I had to trust my gut feeling. Throughout the drive back I kept monitoring him through the rear mirror. He had those a few times. The grunts continued that day and with the increased dosage, V must have been feeling really bad. That afternoon when we were lying down on the sofa and watching a DVD (that became V's security – watching Hindi songs on TV), V said to me, "Mama, give me something to make me feel better". That just broke my heart. I called his pediatrician – not knowing whether or not it was a breathing problem. She said to monitor him and call/come if needed. He was drugged the entire time.

That was the beginning of what was one big nightmare for us – it was something that would keep me worried for months on end and wonder when things would ever get better. I didn't know that I could ask for help other than a doctor, I didn't know where to turn to or what needed to be done next – it was very difficult to think straight when the immediate concern was just to stop this pain that he was going through.

The third one

2008-07-21T13:13:00.001-07:00

In the meantime, I started reading on basics of a seizure – what is a seizure? Why does it happen? What is epilepsy? What does it mean? All along I kept thinking that this is something very transient. It will go away tomorrow. I had several questions but no answers.

Well, after juggling with how to get V to like swallowing his medication and succeeding, we thought everything's fine – well, almost. Other than the fact that I would not let him out of my sight, no matter what he wanted to do. I insisted on driving the SUV as it had the rear mirror where I could monitor his every move. I had to hear his voice, I had to check if he was breathing. I was going insane. He was his usual happy self and never did give a clue as to what might actually be going on in his brain. On January 16^th, he had his EEG at the hospital. The woman was very nice. For the EEG, V had to be sleep deprived – this was the hardest part – having him stay up late, waking him up early so that he had just 5-6 hours of sleep. I now think back and wonder how I did it – it just had to be done, no choice.

I don't remember anymore when exactly we were told the results of the EEG but they were really normal. The best part of the EEG was sleeping with V during the process. I had to lay down with him and of course, I too made up for my lack of sleep and stress.

After ten days of having him home, right after the EEG, my husband insisted we send him back to daycare to his four day routine. I was reluctant but am really glad I gave in because both V and I would have lost it, with me monitoring his every move. At night, I would check in constantly to ensure that he was breathing – that is something I will still do periodically. Ever since, he has slept with me so that I can monitor his night movements as well.

We tried to lead as regular a life as possible, ensuring that we were medicating him at the right time and continuing. Through all of this, R. was super good. She grew up really fast though and from being a five year old to a few years older mentally.

For five weeks, the medication worked like magic. I was really happy that this is all it was. Then on February 5^th, a good friend of mine from India was visiting. We picked up R from school – it was a Thursday so she finished at noon. V, R, my friend and I enjoyed our lunch at CPK. We came back and R and my friend were playing, while V wanted to watch the songs from "Kal ho naa ho" – this movie always brings to my mind this bad time period with V as he always watched it and it still makes me sad. So he was lying down on the sofa, watching, saying something to me and stopped mid-sentence. His eyes were frozen, he was lost – I knew that it was another seizure. How could this happen? He was on medication, he is supposed to do well. I wanted an instance fix for him. I didn't realize how complicated the brain is and what really is involved in fixing it – nobody knows how to do it to date and there really isn't a cure. I had to find out the hard way. Well, he felt drowsy after that and was otherwise okay the rest of the day. On Friday morning, soon after he woke up, he froze yet again. It was the same as the previous evening. It was time to drop R to school which we did and went straight to the clinic.

The pediatrician said that we needed to check the level of medication in his bloodstream, which had fallen and we needed to up the dosage of the tegretol a little. All this was strange talk – up the dosage, a child's metabolic rate – the only medication I had known until then was Tylenol that too only when it was an emergency – give it and one would see the effect right away. The other illness my kids had had until then was stomach flu – well, stick them on the brat diet and even if it might a few days sometimes, they would be just fine. I had been so very lucky with respect to health. This was completely foreign. And to think that a seizure is just an electrical impulse in the brain. Why can't the cause be known?

The Second One

2008-07-21T10:26:00.001-07:00

The next day was V's third birthday – very well spent. He thoroughly enjoyed it. He got his favourite food – dosas – and some friends came over to spend the day. I was watching him like a hawk though based upon my discussion with the pediatrician. We decided to keep him home till the 5^th of January which is when he had his EKG scheduled. I was off work so it was a blessing. On the 5^th I took him to the clinic for his EKG which was uneventful. On the way back I remember stopping at the Safeway along the way to pick up a few things. We then reached home and I was making dosas for his lunch while talking on the phone with a friend. Suddenly he appeared saying he had peed while on his way to the bathroom and it was all wet and he was very upset that I wasn't coming to help him right then. So I hung up, took him to get a change of clothes. I came back to the kitchen. He was still upset and as I turned from the gas, saw him having a full blown seizure in front of my eyes. Now, I hadn't ever seen one, I didn't know what needed to be done, I kept thinking that the first one had been a completely freak case. Now, I see my little three-year old going through what I have only heard about – limbs shaking and collapsing in front of me. I again imagined the worst. I yelled for my husband, who, those days, used to work from home – in the garage. He came charging in and said lets go. In the meantime, I stuck my finger in, thinking that he was going to throw up and be ok just like the previous time but of course, it didn't help. He was out and I had no clue. It wasn't so much that my finger was stuck and was hurting – it was that the seconds were passing and he was out to the world. We had the presence of mind to check that he was breathing.

Again, the two of us in the car, on the way to the clinic. R was happy in school – bless her – she had no clue with what was going on. V came around sometime soon after we got into the car and wanted to sleep – I thought if he sleeps, he never will wake up, not realizing that he had to sleep – that is the body's reaction. By the time we reached the clinic it was hard to keep him awake. His regular pediatrician was busy – so another one saw us. She reassured us that everything seemed fine and he was fine and that it is fine to let him sleep. None of what she said was comforting. On the way back we stopped at the daycare – both our kids had been there since they were babies and with no family around they truly were our family. They had taken excellent care of both the children and it was a second home for them. We had decided to keep V home for the next ten days. I could barely say anything to the director and the office staff member – two other people besides several others at the daycare/preschool who were our lifeline and who we feel indebted to for all of their support. They understood – asked me – is this epilepsy? I was like – what does that mean? What does anything mean? It didn't make any sense.

V was drowsy but fine upon reaching home. His pediatrician called later in the afternoon, apologized for not being around and said that given that he had had two seizures, he should be started on medication. The one she was prescribing was Tegretol which had been around for a long time. The long term effect was a bad liver – so do we live with a bad liver in the long run or let him have seizures? The answer was obvious as far as we were concerned. He had his first dose of the medication that night. We were told to come in and get his blood tested for the medication level periodically.

That day was so confusing – I mean, is this something we would live with? Is this something he would outgrow? How long would he need to take the medication? How long would this continue? Being the optimist that I am, I assumed that he was going to be just fine.

The First Time

2008-07-21T09:39:00.001-07:00

I have thought of blogging for a while now but it hasn't been easy to put my thoughts down. I wanted to share the story about my son with the hope that it will help at least one other person going through a similar experience. My son is now seven and a half, growing by the day, enjoying his new found brain and experiences, a joy to behold and I can't stop saying how proud I am of his abilities. It all started four and a half years back on New Year's eve.

We had two healthy, happy children (we still do) – a five year old daughter who was way mature beyond her years and an almost three year old son. I had worked for fifteen years in the tech. world. Having two small children, extremely long work hours for both of us and with my daughter soon to start kindergarten, I was rethinking my career. I hadn't been motivated for several months now and it seemed like the right time to make a career switch – call it a mid-life crisis – I felt like I just had to spend more time with my children. I really wanted to teach, that too little children in elementary school and it seemed like why did I do engineering at all? So, I decided to take my CBEST and turn in my resignation. It all seemed just right, how very right I would find out really soon. This was October 31^st, 2003 – my last working day in the tech. world so far.

Life continued for a month and a half with my daughter's(R's) school, volunteering, son's daycare, husband's job, and my catching up on odd pending jobs at home. In December, we had planned to travel for about two weeks – go to Los Cabos, Mexico for a week, followed by driving from the Bay Area to Portland to visit my cousin and family with a new baby. We had a fantastic trip to Mexico of course, relaxing on the beaches, visiting their old town, even traveling with the kids on the local bus. Our drive to Portland was fantastic too – the changing landscape, driving through ice and snow, driving at a really relaxed pace and enjoying the time as a family – we forgot about the water leak problems which we had since November – a huge one on Thanksgiving weekend in our room – and another one which we discovered in between our two trips. By the time we got back home on December 31^st, 2003 it must have been close to 9 p.m.. In spite of having had a really good time, we were really happy to be home, the kids more excited than us, getting back to their toys, especially their new ones that they had acquired for Christmas. Normally, I would have taken them to bed between 8 and 8:30. However, they were so excited to be back that I let them be and said that I would take them in about ten minutes – this was at about 9:15. My son, V, was banging on his drums, R was playing the morroccas and I was sitting in the family room with them reading some magazine.

Suddenly I realized that one voice was missing – I look up and see V lying flat down on the ground. I panic – about three-four weeks before that an ex-colleague of mine had lost her 18 month old son – that thought is foremost in my mind and I scream. I pick him up – no response. He isn't looking at me – I am paranoid, yell for my husband in the next room, he comes running. He can't figure out what's going on. I ask R what happened – she is all of five years old so her response was – I don't know. My first instinct was that he had swallowed one of her small toy pieces – he used to put several things in his mouth. So I do what I have seen my grandmother do with my brother when he swallowed objects – hit him on his back did whatever to get a response – no response. I could not think. The kids and me were in our pyjamas. My husband says – lets go to emergency – that would be way faster than trying 911. Also, I had called the clinic but was on hold for a long time and of course, we had no patience, not knowing what had happened to him. Within minutes of returning from a fantastic vacation, all was forgotten. In the meantime, R started to cry – she was really frightened – I had to leave her consoling to my husband since my biggest concern was V not knowing what was going on. We get into the car with me still trying different things to get a response, thinking he has swallowed something. I stick my fingers in his mouth, and it causes him to throw up. As soon as that happened, he started howling. I was relieved that he was howling because I had finally got a response – he was alive!! His crying however, caused R to howl even more. So, we could have treated it as a funny situation but it wasn't – two kids howling and me sitting in my pjs with puke all over me. Its weird how situations change one's perspective! It is also weird how some incidents remain etched in one's brain – I have the pictures vividly in my brain four and a half years later. Life completely changed its course and I have learned so much from this but more from my son who continues to teach each of us every single day of his existence.

Upon reaching the hospital, my husband dropped us off at the entrance – me and V. He went off to park with a still-howling R. The attendant was very matter-of-fact – your son is crying so he is fine – alive and breathing – we will call you when your turn comes. I can barely fill out the form with my shaky hands. The emergency room is full on New Year's Eve. I spot R's pre-school teacher in there – and I am not in a mood to say hi or talk and she realizes that. She herself looks disturbed. In the meantime R comes in with dad and sees her ex-teacher and rushes to her who not only calmed her down but took care of her through most of the night – our adventure in emergency didn't finish till almost 4 a.m.!!!

Someone calls for V so the two of us go to the assigned room. Here now, I am blurry on some details – we were both exhausted – we had driven for almost the entire day, something had happened to him and I had to explain what and why we were there. It took a very long time – hours – before the doctor actually came in. He asked me several questions – at the end of it he said that it sounded like V had had a seizure, not swallowed something but in order to confirm things, he asked that we get an xray done, a cat scan and something else. He also asked us to make an appointment with his pediatrician on the next working day, January 2, so that we could check in with her as well. All these tests seemed to take forever – we heard the doctors and nurses celebrating the start of the new year down the hallway and I was getting really frustrated – don't they realize that I have been waiting here with my three year old for a very long time, not knowing what has happened to him?

At some point that night I remember R's ex-teacher dropping her off saying that she was leaving. She is one of several persons we are indebted to for helping us along the way. It seemed Godsent that she was there that night to take care of R when she seemed so inconsolable. When everything was done, I was too tired to think – was it a seizure, what's next – what do we do? He was so very tired, I just wanted to take him home and get him to sleep. Who knew what was in store?

We met with his pediatrician on January 2^nd, 2004 – so here was a whole new year – we should be celebrating but we just couldn't. His pediatrician said that it certainly sounded like a seizure, that it might be a freak case but to be on the safe side, lets order for his EEG, EKG and MRI. I told her to go ahead with whatever she thought necessary.