Epilepsy in autistic teenager

[theDudesmummy]

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...

My autistic nephew has had a couple of seizures, not full blown twitching type but almost absences where it was almost like the lights went out for a few seconds, he has never been diagnosed with epilepsy.

Epileptics can do lots of activities though sometimes you have to make small adjustments. Ds certainly has swimming lessons. Once he’s settled on his medication if he needs it he can just carry on.

These were complete collapses with at least a few minutes of unconsciousness, not absences/partial seizures.

Thanks for mentioning about the swimming, it is very important to him (we have a boat and do a lot of watersports, this summer I kept very close to him and made him wear a full Crewsaver lifejacket at all times). His school doesn't allow kids with epilepsy to partake in the school swimming unless they have been seizure free for a year, so that will be out, I will certainly take him swimming myself still.

I realise he will need meds now, hope we can find one that is right for him without too much difficulty...

He CAN swim at school if someone is in the water with him so usually an extra teacher would just be in too. It’s a perfectly reasonable adjustment.

We don’t cycle on the road in case he falls into traffic, we don’t cycle along the canal for the same reason, we don’t climb high without a harness (so go ape is fine but up a climbing frame less so), he doesn’t have the high bunk bed he wants and we get some grotty side effects from his medication but it’s fine. It’s like anything you just get on with it because that’s the situation you’re in.

My son also is autistic and was diagnosed with epilepsy when he was 13.
First one was a collapse, tonic clonic seizure and he had more after that.
We felt like the door had shut on so many of the things he enjoys doing, but this has not been the case at all.
He has continued to swim, competitively. The Life Guard on duty needs to know he has epilepsy. School swimming, as mentioned above, it is a reasonable adjustment to have someone in the water with them. Challenge them on that under disability discrimination.
He’s been on school trips, including skiing. he plays squash, and is about to do the Race for Life. he’s doing DofE Gold.
somethings had to change, eg we had to change the shower cubicle that opened inward with a bifold door to an outward one.
he cannot cycle alone, and everything he does we have to think, “if he had a seizure now, would he be safe” but actually it has been fine.
He is gutted about not being able to drive for 12 months post seizure (he is nearly 17 and wanted to learn to drive) but in his lifetime there will be self driving cars so not really as big a deal as it once was.
make sure you apply for DLA if you don’t get it already, or if you do, update them with his epilepsy diagnosis. This really helps with additional costs of things.
feel free to DM.

Thank you for those encouraging posts. It is good to hear about how life and activities carry on. We just have to think about everthing. I guess probably also a medic alert tag etc etc. He is having an EEG this morning in the hospital. I am heading for the airport to get home ASAP. Have not spoken directly to the doctors yet.

We don't live in the UK but in Ireland, we do already get equivalent of DLA as well as carer's allowance (not means tested in Ireland as it is in UK).

Useful thought about the shower cubicle. We are in fact currently rebuilding a house and can design the bathrooms etc however we like, so will factor this in. I will DM when I get my head around things, thanks so much. We are linked into a lot of autism support, I will have to look into epilepsy support networks now too...

The shower is a good call. Ds cannot bath alone (obviously) and so we remodelled prioritising not just a really nice solid walk in shower but it is positioned in such a way that he can shower with me in the room without being on display should things get more difficult and with a solid seat.

Hope everything goes well.

Have a look at Butler and Grace medical alert jewellery. They make a variety of very cool items for teenagers that don’t look medical as such, but carry identity and information on who to contact in case on an emergency.

Most mobile phones have a bit you can fill in with basic meds/conditions/emergency contacts.

I'm autistic and have epilepsy

I swim, run, paddleboard, surf and dance.

Get well soon to your DS! x

We are going through this now with our 13 year old dd who is autistic- we went sent home with a referral letter though so still waiting to see someone and we have private medical insurance - she has had 3 seizures in the last 3 months 😢

Not the point of the thread but I had these absences. It's called petit Mal and generally grown out of at purity. I had to take foul medication too as a child!

Many thanks for the replies and the encouragement. I got to the hospital yesterday evening just before the consultant came around, so got to speak to her in detail. He has been prescribed Epilim, which he will hopefully start this evening. (He was discharged last night and is back at school today, much to his delight). Has anyone any experience of Epilim use in their children?

We are thinking about things around the house and trying to make sure he is safe, how do people manage with stairs (we live in a 2-storey house)? I have a fear he may fell down the stairs and hurt himself. In our current house his bedroom and bathroom are downstairs so he is not upstairs much, but in our new house his bedroom and bathroom will be upstairs.

@Tromboleese I had a look at that jewellery, thanks, I am looking into various options for him.

I think I will stop horse riding for the moment. Epilepsy Action webpage (which the consultant signposted me to) says you can ride if your seizures are controlled, but of course we don't really know that yet as he has only had 2 and has not yet started medication. I think I will let him continue to play rugby as I sit at the side of the field (and it is touch rugby, not tackling etc). Swimming I am waiting to hear what the school says, but if they do say no I will take him swimming myself (I am a strong swimmer and trained in lifesaving albeit a long time ago, and there is a lifeguard at the pool as well).

I guess there is a lot to think about. We were due to go away next weekend (on a flight and to spend time socially with various friends), have decided to postpone that for now. I want to see how the medication will affect him etc.

Stairs fine,
swimming, refresh your training (basically head above water till seizure passed then get out)
riding, I’d wait till he’s been seizure free for a bit
sorry I’m a rush

My son is on Epilim. It worked really well, it has been reviewed once or twice for higher doses as he has grown.

Hi glad to hear you were signposted to Epilepsy Action. Epilepsy Action and the Epilepsy Society are great resources. EA had a forum that closed in August. The members of that forum set up their own forum. If you are interested it is www.forum4epilepsy.com I’m one of the admin.
I don’t know if this ruling will affect your son it depends on his diagnosis, effectively what type of epilepsy he has. Some drugs are better for certain types than others. Currently Epilim can only be prescribed to women and girls of childbearing age if the pregnancy prevention program is in effect and it is the best drug for their type of epilepsy. By next spring the prescription of Epilim to anyone under 55 will require two independent specialists to confirm that it is the best drug for the patient. If your son is well controlled on Epilim I would bear this in mind. I’m on Epilim and have been for decades. Epilepsy Action have an update about it.
Also, as a swimming teacher and coach with epilepsy the school’s attitude isn’t very inclusive and as a pp said deserves to be challenged. Does your son get any auras/warnings of the oncoming seizure?

Hi, thanks for that. We are in Ireland so things are probably different re the medication. We saw the paediatrician last week and she was happy with everything (no further seizures on Epilim). I understand what you say about the swimming but I guess I am scared anyway of him being in a big group of noisy excited special needs kids in a pool and having a fit...

He didn't get any warning at all as far as we can tell, he remembers nothing of the seizures and also has amnesia for at least a few minutes before each one.

@FortunateCatsGlugDaquirisAllEveningBlindly is the ruling for epilim and two consultants for males too? My son is on epilim. Are they trying to phase it out?

This year in the Spring it will come into effect for males too. Epilepsy Action and The Epilepsy Society have information on it. If you are on Epilim and not over 55 you need two independent specialists to confirm it is the best drug for you. If you are female you need to be on the pregnancy prevention program.
If your son is on it and well controlled talk to his neurologist about getting a second independent specialist to back up the recommendation that Epilim is the best drug for your son in preparation for the Spring. All the best.

Thanks @FortunateCatsGlugDaquirisAllEveningBlindly I appreciate the info and will get on to his neurologist today.

@Underminer no problem, hope you get everything sorted out.
@theDudesmummy Wow, having taught special needs swimming, that really sounds like a well organised, safe, productive swimming lesson! 😳 Not..

@FortunateCatsGlugDaquirisAllEveningBlindly that's not a description, just what I am imagining. What they said was that the staffing level for the group was such that they cannot provide one to one supervision. And I wouldn't want him swimming without a high level of supervision...

When I taught SEND swimming the classes were very small. 3 to 4 swimmers to one teacher depending on the children’s abilities. We didn’t have a level 1 teacher in the water unless someone was training or someone kindly volunteered their time. One Mum in particular came in to support her daughter and she was phenomenal. Lifeguards were on standby and we were all NPLQ qualified too.
Yes, I did suggest to some parents with children in SEND swim classes that 1to1 might be beneficial, much the same as I suggested 1to1 lessons for any child …or adult who was struggling in swimming lessons. SEND or not.
Your perception of the lesson may be skewed.

DD has epilepsy, we haven't yet got it under control. She is on Lamotrogen, Epilim not an option unless desperate as she is female.
Our one saving grace is she has warning, so she can stop what she's doing and sit on the floor. She bike rides, climbs (indoors) and does most things. Our only issue is she's an open water swimmer, she's stopped for now, we will have to revisit that. Her school have been great.