Some gems

      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.

 

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.      
7. 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.
8. 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

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

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

       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

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

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

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

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

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

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

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

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

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:

1. I had to have the discipline to do it daily
2. 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.
3. 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

         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

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

          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

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

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

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?