I posted that gigundo update and totally forgot to mention his epilepsy. Oops. I've been finding it hard to focus on just one thing with Mr. AJ. Probably because he's got so much going on.
EpilepsyThe day after our fun trip to the ER in August was followed by a 24-hour EEG here at home. He was such a trooper. Seriously, I'd rather have these people come and do one again than do it in the clinic. He was extremely tolerant with having the leads put on ...the only part he didn't like was the air compressor. Yeah. After they use the goop to stick the lead on, they cover it with a small piece of gauze dipped in this nasty glue that smells like a cross between gasoline and acetone, and then use an air compressor to super-fast-dry the glue. Those suckers weren't going anywhere.
We received the results of his EEG about 3 weeks later. AJ has normal activity during the day and "some" abnormal activity during drowsiness and sleeping. Meaning, he's still having some seizures when he's drowsy and sleeping. While I let out a huge "whew" that he is ok during the day, it still bothers me that he's having any seizures period. How could it not? Having activity during drowsiness and sleeping is very common for those with epilepsy. His neurologist's nurse gave me the example of a child who goes for a sleepover. It is very common for a child to have activity if they are not on their regular sleep pattern. Sleep is important for children with epilepsy. Great. Another reason for my to worry and fret over AJ's sleep. Not only does he need it in relation to just plain being a kid, but also for rest from what his CP does to his body, now he needs it for his brain to rest.
Fast forward to yesterday and AJ has his first seizure at school. It lasted about a minute or so and he was staring off while his arms went limp. Fun stuff. He was agitated after so they let him lay in his favorite little quiet room and after 3 minutes, he popped up a whole new kid. He had a great lunch and afternoon at school.
Sigh. I jump every time my phone rings while he's at school, thinking its school calling me with something wrong. Guess I'm still adjusting. Crazy. The nurse called and told me about the seizure and that was all. As part of our seizure plan, this was normal protocol. But I still wanted to run into that burning building, all hollywood slow-mo and save my baby from that burning building of seizures. But it was over and done, with nothing to do. I don't do well with doing nothing.
It is a very common misconception that just because your child is on seizure medication they are fine. More seizures? Up the medicine. I have learned, through a very patient neurologist and his amazing nurse, that this is not always the case. It can't be perfect. While I don't want it perfect, of course I would rather my child not have seizures. Duuhhh. But, I'm grateful he did have his first seizures one year ago (already?!) and at least now we know and he's on medication to regulate things. So, yeah. Around the circle we go.