I have about two years worth of posting for here starting with my son's first seizure about two years ago. I don’t know why I didn't post sooner. I wanted to share his history a little in hopes of getting some sound advice, maybe hearing some positive stories. The fellowship among other parents of children with epilepsy is something I know I really need right now. I find myself increasingly anxious about his condition and there are so many unknowns.
Sorry for the long post I know that details do matter with epilepsy and want to be as clear as I can.
My son had his first tonic clonic seizure (June 2012) when he was six months old. It was status. It started in his sleep. I thought I heard a scream and ran in. Seizure lasted about 40 min before it was stopped after few injections of Ativan and something else. I should mention we have no history of seizures in our family. The only thought I’ve ever had is that this may be due to IVF.
In any case, all of his tests were clear. A year after his last seizure and EEG did show slight activity during sleep.
He was put on phenobarbital-way too low of a dose-since he had a tonic clonic seizure every month or so thereafter until November when we visited one of the best children’s hospitals and doctors I have ever known. They put him on a higher dose of pheno and for about seven months he was seizure free. We weaned him off for the adverse developmental consequences and put him on keppra. He remained free of tonic clonic seizures but began having absence seizures 50-100 a day . So we switched to Depakote sprinkles.
The absence seizures disappeared but after a year of no tonic clonic seizures he had one this past November of 2013. He spiked a fever and upper respiratory right after so we assumed illness lowered his threshold. Depakote level was 84. Neuro increased his dose.
Again his was seizure free for about six months and just had two tonic clonic seizures over the past two weeks (there was actually no movement, he was stiff, short breathes, but neuro still thinks it was in the family of tonic clonic seizures not tonic). He had a fever after and a little cold, but we are not convinced that illness lowered his threshold these past two times. His depakote level was 75 which seems low for him.
Something scary also happened two days after his last seizure. He woke up shivering with teeth chattering. My hand could not stop the chattering. He seemed panicky and was quickly and loudly talking. Neuro does not think it was a seizure, but what else could it have been??? I thought it was because he was cold, but the only way I got the “tremors” and chattering to stop was to talk to him about our day and what we would play the next day. He calmed down, so the only thing I can think of is that it was a panic attack. It was a couple days after his last seizure and he has been waking up scared the same time every night. He is only 2.5 but he’s very intuitive and in touch with emotions so I think he knows what is going on (in his toddler way.)
The past two times we have used diastat. I don’t know if they would have stopped on their own without it. Only twice have his seizures stopped without an additional injection of something besides his daily meds.
I have so many many questions. I thought if anyone had a similar experience they could share what works, prognosis, and anything else that may help. At this point I have a binder of info I’ve been collecting. I am looking for any nigh time warning systems. Perhaps pulse monitors? At this point he doesn’t always convulse so that type of alert might be useless. I started looking into service dogs too so many down the road he could make use of that. I am so worried knowing that if I didn’t catch the seizures that happened at night, or if he was older and living alone he would not have survived. That is the hardest part to swallow and keeps me up at night.
I have read about so many different syndromes but I can't place him in any yet, which I guess isn’t such a bad thing). The scariest part is the status obviously which has so many implications I can’t bare to think about. I am also wondering if anyone else has ever heard of a tonic clinic seizure in a child where there is no jerking movement. If he was in fact having a tonic seizure the implications for that are very scary. I worry too about the side effects of Depakote and why even with being on such a high dose he has seizures even if they are at onset of illness. His fevers aren’t that high which I know they don’t have to be, but still so scary.
I am wondering if there is any hope for a “normal” life for my child. He is such an amazing boy. He is speech delayed, but perfect otherwise J I read stories of people who go into remission for a long time, but considering the majority of his seizure shave been status, my hopes are low.
Can anyone also recommend good resources for info and way to connect with other parents of children with epilepsy?