Vaccines and Epilepsy

[muminfrance]

I'm sure there has been a lot of stuff on here about the MMR vaccine and Autism. I'm just wondering if anyone has any experience with vaccines, and specifically MMR, and epilepsy? My daughter has pretty severe epilepsy which is relatively controlled at the moment. As she is 20 months I am under increasing pressure to get her vaccinated. She hasn't had any of her jabs to date. Our neurologist, who I do trust, does recommend vaccination, but I can't help feeling that any of her views are going to come from a medical point of view. I know I am burying my head in the sand over this issue. Basically, I know that should my daughter get measles it could be really bad for her. But I also have a strong suspicion that any vaccinations are going to really spark things off. It seems just wrong to intentionally give her something which is highly likely to make her seizures worse. Even if you weigh that against the possibility that she could get measles or something which would be worse. Does anyone have any experience of this? Whether you chose to vaccinate or not.

When it comes to epilepsy I can tell all. I know about EEG's. Gamma,Delta and Alpha waves etc etc.
Please please, if you are in ANY doubt with regard to your child being vacinated and their IS a history of epilepsy in the family, DON'T DO IT. I know the consequences.
Can I sugetst if you want some really informed figures that you contact The British Epilepsy Association, I shall try and find a link.
I did post earliear on this thread and said my dd and ds were not vacinated and one caught measles, the other whooping cough. They can be cured, and the mortality rate is not as high as the harm done through the MMR vaccine. IMO.
I would never stop a mother getting her children vaccinated, and think it is impotant. When we were little we had to have smallpox vaccinations, but no longer, due to the vaccination programme. So vaccination IS a good thing, but not if there is ANY history of epilepsy. They can split up the MMR so they can have just the ruebella say, but you need informed information.
Try contacting these people B.E.A.

Oh Jimjams that is so dreadful for your friend and her little girl. Presumably she's been in touch with the BEA/Epilepsy Action?
Sadly I know that people with learning difficulties are often neglected by healthcare professionals and the health system. (My sister works in this field and is currently training as a nurse specialising in learning difficulties, partly because she is so hacked off at the raw deal her clients get. She thinks that with a nursing qualification she'll have more authority to change things. I hope she's right.).

God, when I read some of this I realise how lucky we are to a) have a diagnosis and b) have a pretty supportive medical network. I really really feel for anyone who has a child who is seizing and no-one is doing anything about it. It can be so scary as a parent because you feel so helpless.
Thanks Bunglie for info re vaccinations and epilepsy. Everyone's thoughts on here have really helped me to make my decision. And I won't be vaccinating my dd. Thanks everyone. Wish I'd found mumsnet sooner!

Caroline5 - yes, some aspects of Aicardi's are tough though I have to say we are so lucky that our dd is at the better end of the spectrum. We're not on the website (the american one?) I keep meaning to do it but can never summon the energy/time. I hope you get your dx soon. I don't think it matters so much from a personal point of view. Your dd is who she is no matter what the dx. But it seems to be soo important in getting the support and help you need. I know what you mean about the not wanting to know. I remember looking at the descrip of Aicardi's and thinking "please don't let it be that" but it is just a label at the end of the day and it doesn't necessarily tell you very much about what your own child will/won't be able to do.

Can anyone tell me what a seizure looks like in a toddler? I was talking about ds2 (16mths) to our portage worker today about a couple of his more unusual 'ways' and she mentioned the possibility of epilepsy. Basically when he's happy or excited about something he either rolls his eyes into the back of his head or tenses up his whole body and just shakes. He seems 'with it' while he's doing this so I just assumed it was probably one of his autistic-like traits. Now that the portage worker has mentioned epilepsy I can't help wondering about it. As far as I know there's no history of it in the family. It's obviously my week for paranoia!

Coppertop - I am by no means an expert on epilepsy. I only really know about my dd's seizures when she doesn't shake at all but her eyes do roll. The trouble is, I think there are lots of different kinds of seizure. To be honest though, if your ds always does this when he is excited and if he is 'with it' when it happens, it doesn't sound like a seizure to me. Can you distract him when it is happening? AFAIK you can't intervene and 'stop' a seizure. Others will probably know more though.

What about video-ing him when he does it (if you have a camera) and showing to your GP or Paed? If they then thought it could be epilepsy they could refer you for an EEG.

The eye-rolling only lasts for maybe 5 or 6 seconds so by the time you've registered that he's doing it he's stopped again. The shaking lasts for a little longer, maybe 10-15 seconds or so, but he seems to be looking right at you when he does it IYSWIM. He's perfectly fine straight afterwards with no sleepiness or anything which is another reason why I hadn't even thought about epilepsy before. I'm not sure I could be quick enough with a camera to video him but I'll definitely try the distraction thing.

coppertop- I've sometimes wondered about ds1 (still do sometimes) but each time he's snapped out of it as soon as I've spoken to him so I've assumed it isn't. The fact that your son does it when he's excited or happy (and not randomly) would make me more likely to think it was some srt of sensory stim.

DS1 did something very weird in the pool one day, eyes rolled went all floppy- but I think he actually had water up him nose.

When he was younger and got excited (eg teletubbies started) he would tense his whole body and shake. My MIL thought it was a seizure the first time she saw it (he'd had his measles jab the day before!) As he's got older that has changed into other things- now he hadflaps and jumps

coppertop - like Jimjams and heartinthecountry have both said your DS's eye rolling and twitching sounds more like an autistic trait - sensory stim thing to me. From what I know about seizures there are many different sorts - just like autism is on a spectrum so are seizures (in a way).

Most of my experience with seizures relates to one sort which sounds nothing like what your DS is doing. I would keep an eye on him but not be too concerned unless you start to see anything else like loss of ability, excessive sleepiness or DS being upset or in pain by the behaviour. I'm sure he'll be fine but I know as a parent you can't help wondering and worrying if there is something else there.

Thanks everyone. Ds2 does seem to have some sensory issues so it would make sense for this to be another sensory thing. He often does the 'looking out of the corners of his eyes' thing so the eye-rolling could be related to that too.

I wonder if Teletubbies has some secret 'trigger' in it somewhere. It's one of the things that starts ds2 off with his shaking too!

My dd2 also does the 'looking out the corner of her eyes'. It was quite awhile before we realised this was an autistic trait but thought it was really cute when she did it when she was quite a bit younger - now when she does it she seems to be studying whatever she is looking at. We wondered for awhile and my SIL and MIL used to think it was a seizure but we have since realised it's not.

DD2 used to LOVE teletubbies - we even have pictures of her about 2 yrs old on the beach doing the teletubby walk - you know lean back, tummy out, march!! It was so hilarious. She has sort of moved on to fimbles and Zoo Lane - we changed from teletubbies because we wanted to try to encourage more 'proper' talking since her verbal communication is so limited. But teletubbies was the one thing that could bring her running down the hall to the living room for awhile and it was nice to see her enthusiastic about something!! Maybe your ds is just soooo excited it's like he's 'wagging his tail'.

Internationalgirl - how does the contact another talker thing work? thought I would get an email from mumsnet but haven't heard anything..

I tried contact another talker last week but it doesn't seem to have gotten through. Just tried it again - hopefully it worked this time. I will be out today but will check back Sunday late afternoon.