partial complex seizure
Today we visited a pediatric neurologist who told us our son experienced a partial complex seizure earlier this month. I'm terrified. When it happened, he didn't convulse; I insisted we see a doctor just in case, but I honestly thought the doctor would tell me to stop worrying and go home. He had an EEG which looked age appropriate and we're scheduled for an MRI later in January. Parents who've been through this, what can I expect? How do I make sure the school understands what to do if it happens again? What type of questions should I be asking and to whom?
He's about to be five. When it happened, he vomited, got very distant and just repeated things we said to him, vomited more and passed out for twenty five minutes. He lost color and his lips were a soft blue. We rushed him to the emergency room - now we're aware to call 911 if it lasts for more than five minutes or if his lips go blue at any point. They've also prescribed a suppository in the case it goes five minutes or more again. I hope that information helps.
Thank you all very much for your support-I know in the grand scheme of things, this could be much worse, but I just can't shake that helpless feeling of seeing him unresponsive.
Posted Dec 30, 2015, 10:02 PM UTC
Sorry this is happening to you and your son. I would ensure you son receives full time, trained support at school. I would not rely on the teacher, nor administration only to know how to help if your son has another seizure.
I'm not talking from personal experience having a child that has seizures, but I work as an educational assistant that works with a student that has a seizure disorder (actually during the day I work with 2 students with seizure disorders, both have a VNS). We are trained in the what ifs and what to do in every situation. Be sure your school does the same for your son. Play it safe to keep him safe!!
Thank you, what is a vns? Will I need to request this from the school for him to have an qualified aid?
Edit: ok, so the vns isn't on the table at this point. I'll request a meeting at school, though beyond his teachers/nurse, how do I make sure there's always someone around him that knows the protocol for his particular type of seizure?
VNS is a Vagus Nerve Stimulation. Its one of their treatments due to multiple seizures. Not something you'd be considering at all.
I would talk to the school for sure. Make sure they apply for funding for a trained educational assistant to be with him at all time. Here a temporary EA would be assigned until funding is in place. After funding is approved a more permanent EA would be assigned to him. But temporary or permanent a nurse would train them fully of what to expect and how to treat, when emergency measures need to be used, etc. You should feel confident with the situation or you need to advocate for you son until you are confident.
I came from r/epilepsy, and the idea of a trained person or even just a general training class for staff would be very useful not only for him but for any other number of students who could have a seizure at school. I think this would be very smart to at least bring up.