So yesterday I had the pleasure of speaking with the top authorities on epilepsy and seizure disorders in my state. Unfortunately I dropped a call at work while I was on the phone with them, so my boss took it and that was not considerate of me.
I was just in shock, because what they told me was so different from what the neurologist had said.
They went over the data gathered by the neurology clinic and the Children’s Hospital, and they told me that often autistic children DO present these “electrical activities” in their brain. There is no need to treat it, and indeed no treatment known for it, as it is not seizure activity. What did shock me, though, was their calm assertion that this activity DOES put my son at a much higher risk for seizures. That’s when I dropped the call.
They want me to carry the neurological equivalent of an EpiPen in suppository form, and time the seizure, should my son have one. If the seizure lasts more than three minutes they want me to stick a suppository in his cheek, or worst case scenario, in his anus.
So I am supposed to watch a clock. Can you imagine standing over your seizing kid (the very first time you see them have a seizure) and checking the clock? I will do it, though. I will. So the neurologist did not lay this out as an option, and indeed did not warn me that there was any risk at all. I liked him a lot, but this is very different information from the people he referred me to, and it makes me doubt all his reassurance.
I have a request in with the pediatrician for this emergency dose, and should have it and all instructions for it next week. Then we will hope he never needs it. You can be very sure I will never opt for a wallet over a backpack again.