Thanks for taking the time to read this. I am in the UK, and Mum to a six and a half year old boy. We had an EEG done last month and the doc has just phoned to tell me that my son has epilepsy and wants me to go in tomorrow to collect a prescription.
Have done the usual Google search on the drug he has mentioned and am very alarmed at the side effects - my son has autism and each of the drugs I looked up seems to have side effects that could increase the problems he already has. He is virtually non verbal, so wouldn't be able to tell me if he was feeling sick, dizzy, had a headache or many of the other things they mention, so I'm quite worried about this.
We're in the UK and had a three year battle with the NHS re his autism and their failure to give any help or support - eventually I gave up and pulled him out of the system and I now do everything myself at home, including speech, occupational therapy and various other treatments, as well as paying for a lot privately. He's made huge improvements in the last twelve months, so I am not at all keen to give him drugs which may make him regress. I'm also aghast at the thought of having to have regular contact with the NHS again (still have nightmares about them!!). I've long since been labelled ' difficult to engage' because I'm a pain and ask lots of questions and insist on being given information about all of our options. I'm also quite horrified to find that I was simply told he has epilepsy over the phone, with no mention of any written information or anything I can do to help him.
Sorry it's a bit long. I'd really like to hear anyone's experiences, particularly if they are positive ones! I'm just feeling a bit "oh no, here we go again" and I haven't really got over the autism diagnosis yet!
Hello M, thanks for your response. My son is having what the doctor calls 'absent seizures'. For a few seconds his eyes sort of glaze over a little and he stops what he's doing. It's usually just for a second or two, the longest I've seen it happen for is six seconds. I started to notice them around seven months ago, but part of his problems with autism include delays in processing information, so at first I thought he was just taking a moment to think about what he was doing. They don't seem to bother him at all and he's never on his own because of his other problems. He's not having any kind of convulsion and doesn't seem to have anything else happening in connection with them. I spoke to our GP about it a few months ago, who referred us to paediatrics, who then suggested the EEG, although they did say brain waves in autistic children are usually different to most anyway.
My worries about medication are that most of the side effects mirror things he's had, or has problems with - he's made such good progress with his ASD that I'm not keen on the possibility of making that worse when the 'seizures' appear to be very minor and don't seem to bother him. That said, I know very little about epilepsy, so am aware I may be misunderstanding the situation!
Sorry, it's a bit of a long reply, but would be very interested to see what you think.
Well, Janine, I'm certainly no expert, but I do know that epilepsy left untreated results in more severe seizures. Given what you've said about your son's other condition, though, maybe the best policy would be to keep a very close eye on him and see if the seizures do become more severe.
If I were in your situation I would take that approach with the doctors, and tell them about his improvements with autism. He doesn't drive or cook for himself or operate heavy machinery or any of the usual justifications that would normally apply.
Your comments about NHS ring true with many other stories I've heard, particularly in Canada. And to think this is the direction the US is headed.
M, thanks so much for your opinion on this, I've been doing more reading over the last couple of days and have given it a lot of thought. At the moment I feel his problems with austism are far more severe than his problems with these seizures - if that changed I'd be far more willing to medicate even if it meant a regression, but as it stands at the moment I think your advice to just keep an eye on it is good, and, as you say, he isn't engaging in any kind of dangerous activity and I'm never very far away from him, plus all of our friends and family know about his problems and keep a close eye on him too. If the US is heading towards an NHS type system then oh my goodness! I think a lot is to do with how well it's managed - over here it's managed terribly badly, it gobbles money like nothing on earth and the results are really not what you'd expect from the amount of money that's pumped into it.
Thank you very much for your response to this, it has been a big help,
Hi M, thanks for that. I've used these boards for some years now for a variety of reasons. I find that people who have actual experience of an illness can give much better advice than doctors are generally able to - although the doctors don't generally agree! I've got chatting to several people over the last few days who, its turned out, know people who have children with epilepsy, and they've all given the same advice that you have, to just keep an eye on it and see how it goes, so that is definitely what I will be doing! Thanks so much for your help,