New Year - turning 8

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

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

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

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

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

 

      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

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...