When we started trileptal and stopped tegretol there was one full day on that Sunday when I didn't see any grunts – that was definitely a good sign so I was hopeful that it would all be alright. Not giving him medication was not an option at the time as originally he had had two seizures within four days which were not febrile (due to high fever). So, off we started by giving him a small dose of trileptal and increased it gradually till the level at which he was needed to be at. This medication was in liquid form and easier to get him to swallow. By now he was also used to taking medication everyday and would take it almost willingly. The very next day the grunts reappeared – they were changing in nature and would last a few seconds. He also started wanting to sleep a little more with this medication. He would seem tired in the morning.
We now entered the phase where a morning was something I absolutely dreaded. It was always a matter of how bad the morning was – bad, worse, even worse in varying degrees. He would have the maximum grunts at the time. The length of those grunts varied. He would have several in the day with the maximum being right after his afternoon nap and his morning wake up time. Normally, he would be asleep when I left to drop R to school and on my walk back I would be wondering on his morning.
Within a few days of those grunts, he also started with small head drops – there would be this sound, his head would drop and he would be back to normal in a fraction of a second – yet another type of seizure. Now, we were thinking that these are harmless little seizures versus the complete ones. However, a seizure is a seizure and the effects on the brain are unknown. Who knows what is going on up there? Also, the other thing that was happening is that the medication that was being taken in through the mouth was being processed through his digestive system, entering his blood stream and entering his brain. His brain was getting tegretol so far, which then turned into trileptal. It was getting a different chemical balance in the brain. Who knew what was going on up there?
He must have been very confused and felt really miserable and in spite of the fact that he was really good with his words right until then, had feelings going on that he could not express. He used to take a book to school every single day to his daycare to share with his class – now we have stacks of kids books at home and he would spend time every morning selecting his book. Right after his seizures started, he refused to touch books. If I asked to read to him it was always a no. Little did we realize the damage going on in his brain, none of which his neurologist had warned about.
R was the kind of child who had started reading and writing at age four, not because we asked her to or wanted her to but because she just loved it. We never gave it a second thought and assumed that V would go the same route given that there was no difference in what we were doing at home between the two of them. There were so many surprises in store for us. This is why I really enjoyed and thoroughly recommend the movie, "Taare Zameen Par" to an Indian audience. Special needs, special education, accommodations for children is still an alien language to the vast majority of the Indian population, however educated. It takes your own experience to empathize with a child who is not "normal" in the sense of the word – how to use the right language, how to deal with him/her, how to educate the child, how to give the child the right direction, how to understand what his/her limitations are – these are things that one needs to relearn. In a society and culturally where we are taught that one has to get As no matter what the subject, that being smart only means getting good grades, that a child must be able to recite facts at a young age – with very little emphasis on either the creativity of the child or adapting to the varied needs of the child – these are things that we have learned as we have gone along and like I said, V teaches us everyday. The brain is such a fascinating object!!!
Side effects of trileptal – for every medication the side effects run into two pages or more and if I were to list all of them or worry about them all, I would be worried for the rest of my life just over this. Instead, focusing on the biggest impacts of this one – low sodium levels and a tremor in the hands. The tremor was not visible at the time. For the sodium levels it meant regular blood tests to ensure that it would not drop to unacceptable levels. So now we no longer needed to worry about the liver side effect.
The tremor is what impacted his fine motor skills and, in turn his ability to write or draw at the expected developmental level. At age four we thought, will he ever be able to write? When I started seeing his drawings later in kindergarten and first grade, it was something magical. I want to treasure each of those moments - the first time he could draw a straight line, the first time he could draw a whole person, the first time he could draw a circle, anything recognizable by the general audience...
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