Having a difficult day and wondered if anyone had any experience. Sorry its a bit long. My DS, aged 13, is autistic, three months ago he had a collapsing episode which could have been a seizure (not witnessed so we were not sure, MRI brain scan normal). We were told they do not diagnose epilepsy until there have been two seizures. I am aware that epilepsy is more common in autistic people, and that there was a good chance he would go on to more seizures. He however seemed so perfectly well over the whole summer that we were kind of hoping that nothing more would come of it.
I am currently out of the country for work until tomorrow, just as I was finishing up work at 5pm today DH called to say DS had had another collapse. He called the ambulance and they are in A and E. They are being kept in hospital for DS to have an EEG, hopefully tomorrow. I will get back home as soon as I humanly can of course. DS is fine now, sending me all kinds of messages to cancel his activities for this afternoon and saying he misses me (he is non--speaking but can type and text).
I guess he is now defined as epileptic and will have to go onto medication. I am really upset for him. He is such a busy and active boy, does all kinds of activities such as swimming, riding, rugby, circus skills. Looks like many of those may be in jeopardy I guess. It is sad and I feel scared about the future. Keeping cheerful and optimistic for the family and DS but it's hard. Sitting in a hotel room right now just feeling quite upset. I know it's not the worst thing, many worse things could happen but I do feel sad...