Autism and Epilepsy?

[JetcatisBack]

Is there a link? My DD(15) was dx with autism last year after a very long fight. She had one major seizure 6 years ago, but as they thought it was a one off, there were no investigations. She has now had two major seizures in three weeks (first one while crossing a road and did a lot of damge, while only just being missed by an oncoming car...), the second today while at school.

I am absolutely beside myself with worry. The doc today said she was to have a brain scan as a matter of urgency to check for 'something funny', while the EEG tests etc would be as a matter of course.

A couple of people have suggested a link between autism and epilepsy, so I was hoping if I posted here someone would have some knowledge on that - as I am too scared to google.

Also, if anyone could tell me how to not now wrap her in cotton wool, that would be good. I have a long list of what she's not allowed to do (bath can only be so deep etc) and to be honest, I am frightened of over-reacting here and stopping her from continuining to develop the little bit of independence she was only just finding.

A little bit of hand holding would also be very very welcome right about now

That's very interesting. I have epilepsy, and though I don't have a dx, I score 43 (!) on the online AQA test, and have long suspected Aspergers in myself.

My DD has Autism, and has absence seizures, currently unmedicated, and she had two really big seizures when she was 9yo. She will be 15 this week, and the unmedication was my choice, as I know only too well the side effects of the meds, and for epilepsy as mild and infrequent as my DD's currently is (will get worse in her 20's, like me, my nan, my cousin, my auntie...), the life-meds balance wasn't high enough for me to go for meds YET.

When it gets worse (and it more than likely will), we will go for meds.

Showers would be better than baths tbh - it only takes an inch of water.

She NEEDS to learn what feelings she gets just before she has a seizure. This will help to keep her safe.

Get her to record ANYTHING she remembers about what was happening just before a seizure. In writing.

Things like an unusual smell or taste. A 'rising' feeling, like how your tummy feels in a lift that's going down. A sense of fear or foreboding. Blurry eyesight. Nausea. Tummy pains. Anything out of the ordinary could be her aura.

This will give her a couple of seconds to sit down, or move away from a road, or move to safety.

The best way she can live WITH the epilepsy, rather than it becoming her whole life, is to learn when she is about to have a seizure and the signs that precede it.

I got given a book by the CAHMS about autism. In that book it said epilepsy has a high concurrance with autism. Type it in to Google and its estimated that there is correlation of between 7% and 40% of ASD and epilepsy.

My DS, who has ASD, had a seizure 18 months ago. Apparently, one seizure in a lifetime is fairly common, but I expect you know that. He was seen by his paed, a neuro specialist, autism and epilepsy, who confirmed that epilepsy is more common with ASD. She decided not to do a brain scan as in her words. 'His brain is likely to be abnormal anyway, so it won't tell us much.'

He hasn't had a recurrence so has now been signed off by the epilepsy clinic, but I'll obviously be keeping a rather closer eye on him than otherwise.

I'm no expert on epilepsy, though, even by MN standards, so hopefully others will reply.

Crossed with couthy and crawling, told you others would pop by.

All I stopped were unsupervised baths and tree climbing and I was a lot more vigilant at swimming pools.

Also, make sure that her close friends (ones that can be trusted) know about it, and have a contact number for you.

Ask the school to run a general first aid course that includes learning how to put someone in the recovery position and what to do if 'someone' has a seizure.

Buy a pair of leggings to keep in her bag whenever she goes out, and a spare change of underwear.

Nothing worse that having a seizure in the town centre, losing control of your bladder, and having nothing to change into. Wipes too. Leggings roll up small and take up very little space in a bag!

Make sure she always has credit on her phone. Hard to do with teenage girls!

With DD, because her first big seizure was before she was allowed to go out too far on her own, it has always been a rule that if she has less than £1 credit on her phone, then she can't go out. It soon focused her mind to the fact that she had to keep that credit on there in case of emergency.

And last of all, try to understand that if you DO wrap her up in cotton wool because of all this, you would be letting the epilepsy be in control of her life, rather than her in control of her epilepsy.

I hope all this helps.

My seizures aren't fully controlled by meds, and I really DON'T feel safe on baths - have had a seizure in there. Just my personal opinion that showers are FAR safer, especially for a teenage girl who is very unlikely to want mum hovering outside the bathroom!

Thanks guys I'm a lone parent, so no one in RL to offload to.

Couthy, we don't have a shower so it will have to be shallow baths for now. All she can remember feeling before it happens is that she feels a little faint for a few seconds (no more than 5) and then cant remember anything else. I have told her to sit down when she feels faint, but she says she often feels faint There seems to be little pattern to them, and although she is usually very anxious, they dont seem to be stress related - she was in her sole favourite lesson this morning.

Thanks for googling Crawling At least if it is epilepsy, its not the other thing I am worrying it could be.

EllenJane - that's what they said when DD had her first seizure, its not uncommon hence no scans or investigations. When she had the one three weeks ago I convinced myself it could be another 6 years before she had another one - yet it was only three weeks. That is scary.

Thanks so much for replying guys!

Has she started her periods yet? Some epilepsy can be connected to hormones, and can get worse around AF or ovulation. Might he worth keeping a diary to see when she feels faint more often.

Also, it can take a while to really recognise the other signs, as some of them can be very small and fleeting. It took me a couple of years to really get it - and I still sometimes miss the signs if I'm busy, or if I'm really concentrating on something!

Thanks so much for the tips Couthy, you are very very kind

My house is social housing, so I am wondering whether it is worth asking them for help fitting a shower - I cant afford it myself just now. For now we have made a deal that DD can have a bath with her costume on so I can wash her hair etc (for the sake of modesty) and if she has a shallow bath, then DD (6) will sit in the room with her and read to her! No lock on door anyway so thats not a worry.

I definitely dont want to let it rule her life, and at the moment she is rather non-plussed about it all, which is good in a way and I dont want to scare her. I guess its all just a balancing act, and a waiting game until she sees the specialist next month when they say they will put her on meds. Which, from reading your earlier post, I guess will bring its own problems

Yup to periods, is actually on the pill for them as when she started a couple of years ago they were very heavy and she really struggled with managing them as well as being quite anaemic. I will check her pill pack and work out when in her cycle this fit and the last one were and add it to the diary for her specialist.

Some HA's will fit a shower for you, some will allow you to fit one but bear the cost yourself (nice!), and some won't let you at all.

For my DS2, who's 13, I just sit outside the bathroom door with it very slightly ajar. He isn't at all modest, though.

Catamenial epilepsy. Epilepsy that's hormone related.

Sorry for lack of replies, DD had another fit yesterday morning at school so has now been admitted.

We are waiting on eeg hopefully today, then there is talk of a brain scan. It's good that the tests are starting, but I'm very anxious over what they may show.

I'm sorry to hear that. I send you and your DD my best wishes, and hope she recovers well from this seizure. Most people with epilepsy gain full control of their seizures.

To get the EEG glue out of the hair, baby oil works a treat. Don't use heat treatments like straighteners or hair dryers for about a day afterwards.

Thanks guys. EEG is booked in for the morning - will have to be transported to another hospital though. I have stocked up on the shampoo and baby oil - and at least one positive of her being in hospital - she can now have showers and not baths

Leonie, they said about the EEG coming back clear, but still putting her on medication and then thinking about the scan, although they not sure if they doing that while she is still in, or whether she can come back as an outpatient.

And thanks for the hope that once they do figure out what it is, they can control it a bit easier.

DD had her first seizure in December. She has ASD. She is due to have an MRI shortly. She has other difficulties and I am worried what the scan will show up!
I have read that the is a strong link between ASD and epilepsy.

Jetcat, sorry to hear your DD has had another one and I wish you and her the best getting it under control.

Just a thought, if there is an OT dept in the hospital, could you ask for a referral WRT to her independence in personal care (code for we need a shower at home). They may be a able to do a referral to Social Services OT for an assessment of the home environment to modify the bath to a shower? (depends on LA).

Eeg all done, we get the results late tonight. She's got most of the glue out, in fact that's the best she has washed her hair in a long time she was that desperate to get it out!

TTTW, sorry your DD has a similar experience, I hope the scan goes ok.

Porridge, the nurses here have been fantastic and have arranged for the community nurses to visit once she does go home to look at how to manage things. I will definitly mention the shower as she is managing that a lot better anyway even without the fear of another seizure.

I have a few more hours now of trying to second guess what the eeg will show - she was twitching and jerking an awful lot, but I guess that could be nothing.

Thanks again for all of your kind words