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?