Seizure in autistic teenager

[theDudesmummy]

We got the fright of our lives this morning. DS has just turned 13 and is autistic. Never had any physical health issues, but has oral dyspraxia, so clearly there are neurological issues. DH heard him playing game on his computer, then a thump, went to see what he had dropped, and found DS completely unresponsive, flat on his face on the floor, blood streaming out of his mouth. We got him onto his side on the bed, called the ambulance.

He partially came round after a few minutes but remained minimally responsive for about ten minutes. Then groggy. Vomiting in the ambulance.

He and I have been at the hospital all day, I am now lying on a mattress by his bed in a side room in the ward and he is asleep. They have not found any abnormalities on bloods, neuro exams etc. I am aware that it is quite common for autistic teens to develop epilepsy. I am in a state of shock though. I didn't expect this. Despite his autism and dyspraxia he is a happy, healthy, very physically active and bright boy.

Now I have time to think (and am trying in vain to sleep) I feel very upset. We came to terms with the autism diagnosis many years ago. This is another shock. Anyone have any experience/advice?

Hey op, that's a huge shock I'm sure. Huge hugs for you. It must he very frightening. You handled it exceptionally well and got him help very quickly. Didn't everything right! How's DS now? How are you coping? It could be a one off, it doesn't mean he has epilepsy. Even if he does he'll be okay, lots of medications that can help control them.

We had a similar experience last March. DS 12 who is also autistic had a seizure at school totally unexpectedly. Unfortunately he continued to have seizures and was diagnosed with epilepsy. It's been an adjustment but something we are now comfortable with. They are now mostly controlled, school have had training and the epilepsy support team have been amazing. Fingers crossed this is just a one off awful experience for you all but if it isn't there is support to help you adapt and it will be okay. x

Sorry to hear about your experience, sending you and your family lots of support at this time!

Around 20% of people with autism also have epilepsy: www.epsyhealth.com/seizure-epilepsy-blog/autism-and-epilepsy-whats-the-link

However, having a seizure does not automatically mean epilepsy. They need to have 2 or more seizures caused by electrical imbalances in the brain for it to be 'epilepsy'. There are also non-epileptic seizures which are caused by stuff such as conversion disorder (not being able to express stress - so comes as a seizure).

We had this in our autistic 12 year old, turned out to be an ear infection , so don’t think it’s definitely epilepsy just yet.
medication didn’t agree with ds we tried it.
could be lights from computer games?
We are under watchful eye of an epilepsy specialist , but they T may or may not be something that develops.
you’ve got this.
life thrown you curve balls before.
you’ll handle this.

Hi thanks so much for the kind replies, we are still in the hospital, have been waiting for an MRI scan but as it would have to be done under GA, it was not possible to get it done today, so they are doing it tomorrow morning. I am of course very anxious.DS has been his completely normal self all day.

I am sure it isn't a conversion disorder, and ther are no focal neurological signs on examination. So it may be epilepsy but as PP said, they don't call it epilepsy after one seizure. So it may be a matter of wait and see.

DS is a keen swimmer and we do a lot of watersports, so that is a worry and is going to need thought. Also a keen horse rider, and the consultant advised against that for now.

I feel quite disoriented right now.

Just to update, the MRI was normal and we went home on Wednesday. We will just have to see if he has any further episodes. DH and I did a recreation of the incident this morning after DS went to school and we believe there is a chance he was swinging on his chair, which tipped over, and he then had a concussion from hitting his head on the cupboard on the way down to the floor. Or, he could have a seizure. There was a period of about 10-15 seconds after the thump before DH entered the room and saw him on the floor, so we don't know what happened in that period.

I have been following the other thread, with the lady whose DS has just been diagnosed on MRI with a brain tumour and is having surgery on Monday. I am so grateful for our outcome so far. I did not want to post on her thread as that would seem insensitive but I am thinking of her.