Epilepsy Diagnosis in a child with severe autism

[SNMummy15]

My son has recently had a series of tonic-clonic seizures leading to a diagnosis of Epilepsy. He is 10 and was diagnosed with Autism at 2. He is non-verbal.

The seizures have predominantly happened at night, although the first one was at breakfast. We thought he was choking and at one point, thought we had lost him :( Having established that it was a seizure, we have been left traumatised.

A camera installed in his room picked up the two subsequent seizures. I am really struggling to sleep at night because of the night-time occurrences. We put the camera alarm on and it alerted us to the third one. Since he has been out of hospital, there have been a number of false alarms.

This weekend he is at respite so we are able to catch up on sleep. However, I still find myself lying awake worrying that he is okay. I know that we are still currently in shock. This has only happened in the past two weeks and involved two hospital stays. I just need to some reassurance that the prospect of seizures becomes a little less traumatic.

Many thanks

I have a lot of experience with epilepsy, but none with autism. I found that as time went on we got used to the seizures and it did become a lot less frightening. Like anything, you get used to it as it becomes less new, and hopefully you will find a medication and dosage that will control the seizures.
With night time seizures, in the short term it might help you a little to get a special safety pillow.

Just to say good luck. Change is always tricky, but you sound as though you are doing great, and I am sure you will still have happy days, especially when you have some sleep, and have had more time to adjust.

Hi there. My dd has epilepsy which started when she was 13 months. We too thought she was choking first time and she ended up fitting for hours. Her first few seizures were at nighttime.

Like you we have a night time camera and monitor and rescue medicine to bring her out of the seizures.

It does get easier. I totally understand how you are feeling. I remember reliving it over and over and worrying about what would have happened if I hadn't been there. It's like anything - it gets less shocking and you do get more used to dealing with it.

You are doing the right things to keep monitoring your ds. Is he being seen by an epilepsy paediatrician?

My dd's daily medicine seems to be working at the moment. I hope that they can stabilise things for your ds.

By the way, there are lots of good epilepsy websites and forums out there which might help you.

Hi I just wanted to give you . My ds has suspected asd but was diagnosed with epilepsy at 3yo and learning difficulties. Ds only sufferers absences and focal seizures so I cant imagine what you are going through and how terrifying that is.

If you are not already you'll be seen by an epilepsy paediatrician and epilepsy nurse. Our nurse is fantastic she always returns my calls asap. Hopefully you will quickly find some medication that helps your ds. I echo the previous poster there are some good websites with lots of extra information out there that are really helpful.

Thank you for your replies. We are under a paediatrician for the autism and fortunately she specialises in Epilepsy, but we have been told there isn't a nurse for our area.

I have been trying to read up online but find that there are lots of really scary stories out there, that are making me fear the worst. There just doesn't seem to be much positivity.