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.

[Caroline5]

Don't really have experience of epilepsy, but the same day we had dd2 vaccinated with the single measles vaccine, she started having "petit mal" episodes (breath-holding/shaking/staring etc) which she had several times a day. These went on for several months, but have stopped now. I do think they were definitely triggered by the vaccination, although the doctors never saw her actually doing it, so didn't really take it seriously. She had an EEG which showed nothing abnormal. (She has global developmental delay, not related to the vaccination).

Sorry if this isn't what you wanted to hear - my dd may well be very unusual in her reaction. It's so tough to know what to do isn't it?

[heartinthecountry]

Thanks Caroline5. (this is muminfrance though I've changed my chat name because I'm not any more!) That is helpful. It reaffirms my suspicion that vaccinations do/can effect the brain quite dramatically. It is also useful to know that that was the single measles vaccination. Suggesting that its not just the MMR I need to be wary of.
I think my heart tells me not to vaccinate her and keep my fingers crossed that she doesn't get anything nasty. At the moment she is virtually seizure free (due to medication) and doing really well. She has learning difficulties but does so much better when she's not having seizures. I don't think I would forgive myself if I did her jabs and she started having bad seizures again.

How old is your dd? have the petit mal seizures ever come back? It must have been scary for you to see her having the seizures and no-one take them seriously.

[Bunglie]

I can tell you as fact that 18 years ago my children could not have the MMR vaccine at all. and just had something called immunoglobulin I think it was. because there was a very strong history of epilepsy on one side of the family. Whilst they were debating if they could have them. ds got measles and dd got whooping cough. Both are fine now.

[Bunglie]

I meant to say also that things may have improoved now, but I personally would not risk it because I know a lot of people who have epilepsy NOW due to the MMR vaccine? There is a class action going on or been I think, just on this.

[Jimjams]

There is a book Calling the Shots by Mary Alexander about a little girl who started having seizures after the meningitis C vaccine. It's not a very scientific book- but quite emotional. I think her mother decided not to give her any more vaccinations (although maybe an easier decision as they seemed to be implicated in causing the epilepsy). My friend's ds is unvaccinated and has epilepsy but its not severe so not really a comparison. Are you worried about seizures getting worse during illnesses.

[Caroline5]

hi heartinthecountry! My dd2 is now 3, she does occasionally have sort of vacant, shaky moments but they are not like before and she will snap out of it quite quickly. The paed is not convinced this is epilepsy and it doesn't seem to be anything to worry about.

Yes we were concerned at the time, now I'm not sure whether she will have her boosters at age 4. Have to say I'm pretty doubtful atm. I've even wondered whether the MMR would have less reaction in her case!

Does your dd have any diagnosis for the cause of her learning difficulties?

[heartinthecountry]

Thanks everyone.

Jimjams - yes, I am worried about her seizures getting worse if she became ill. Our neuro is quite adamant that although the vacs might make her epilepsy worse, measles or whatever would almost certainly be much worse. But I think I'm going to take that risk. Its kind of damned if we do and damned if we don't! Does anyone know anything about homeopathic vacs?

Caroline5 - We are lucky we do have a diagnosis. DD has a syndrome known as Aicardi's. pretty rare. Only affects girls. Basically her brain isn't formed properly hence epilepsy and learning difficulties.

[Jimjams]

heartinthecountry- I would probably take your approach as well (but then after having ds1 and all his problems we haven't given ds2 any vaccinations at all so I guess we have the same gut instincts- although ds2 appears to be pretty robust touch wood- so its a slightly easier decision for us).

My friend with the dd with lennox gestalt (?) did vaccinate her child (because of risks of illness etc) but she thinks the MMR made her seizures worse. Hard to tell though really I think. Also I think she has something wrong with her immune system (lots of autoimmune conditions) and she keeps getting things she shouldn't iyswim. She was quite poorly after her MMR.

Homeopathic vaccinations are an alternative. I'm training to be a homeopath very slowly. There tend to be different schools of thought on them. I haven't routinely given my children them routinely, but I did give ds2 homeopathic pertussin at 4 months after he had a fairly major and repeated exposure to whooping cough. He didn't get it. Of course all evidence is fairly anecdotal, but it is kind of the route we've chosen.

[InternationalGirl]

My dd2 was fairly healthy until she started having seizures at about 7.5 months. Did not appear to be directly related to any vaccinations - they just appeared suddenly. Unfortunately they went on for a few months and because we were in a public health system (not the UK) we got in line for appointments like everyone else. When she was about 10 months she was admitted to hospital for a week for all kinds of tests and they diagnosed 'infantile spasms' and put her on an anti-seizure med which stopped the seizures straight away. Apart from the seizures themselves the most disturbing thing was that anything she had learned up to 7 months was gone and at 10 months she was a floppy little baby who could not even lift her head up off the floor. She had serious global developmental delay we now put down to the seizures. After lots of occ. therapy she has caught up really well in some ways - motor skills are great but she has now been diagnosed with autistic spectrum disorder. We feel the autism is probably related to the damage that was done for the nearly three months she was having the seizures. (Caroline5 - maybe the petit mals are related to the Global Dev. Delay??)

As far as vaccination it is really such a difficult decision. We are gong through the dilemma at the moment re: MMRbooster.

Caroline5 - has your dd had EEG? That would tell you if there were any underlying seizures. My dd has had a few EEGs (one or two were even overnight because often seizures will show up when they're sleeping) and she hated being wired up but it was definitely worth it to find out what was going on inside her head. From my own experience I would definitely be worried about whether she was having ANY seizures especially as there is some Global Development Delay.

Sorry I've rambled a bit here but.. thought I'd just share a little of my own personal experience because I know how hard it is sometimes to be wondering if you are doing the right thing or wondering if you had done something wrong. I guess we all just try to do what we think is right and hope for the best.

[eddm]

I can see why you are worried. These two links are from Epilepsy Action: may be useful, I hope.

webchat


secondstory

[InternationalGirl]

Thanks eddm:
One thing about DD was that she did not apparently react at all to any of her vaccinations. Not really even a fever so we had no reason to believe vaccinations were related in any way to the seizures that showed up a couple of months later. Sometimes you just never will know... and you learn to accept what is and move forward to give your child the best opportunities with what is available.

[heartinthecountry]

Internationalgirl - our dd also has infantile spasms, though hers are related to a genetic condition and it doesn't sound as if yours is. The scariest thing about them is that they can scramble the brain so much that development goes backward. That's why I am so concerned about my dd's seizures getting worse. Its not just that she could have more seizures for a short while (bad enough in itself) but also that we could lose the progress she has made so far. I know that vaccines will not 'cause' her epilepsy but they could (almost certainly will) trigger it.

AFAIK Most other types of epilepsy do not have the same damaging effect on the brain but a child can be delayed because of 'time out' when having and recovering from seizures. Perhaps this is the case with your dd3 caroline5? Or do you know why your dd3 has development delay?

International - I'd be interested to talk more about your dd and condition. Infantile spasms are quite rare so maybe our dd's could have quite a lot in common .

[heartinthecountry]

Sorry Caroline5 meant your dd2 not 3!

[InternationalGirl]

heartinthecountry - you're right - DDs seizures didn't seem related to genetics - she had those tests too! I can totally understand your fears about vaccines not necessarily causing but perhaps triggering more seizures because these particular seizures are so damaging.

One thing I forgot to mention is that dd2 was on the med for just under 2 yrs and was weaned off with success and she is now seizure free - has had EEG to be sure. Should the seizures ever come back I would make sure everything was done to stop them asap so she doesn't lose what she has having come so far.

heartinthecountry - I have sent a message to you via contact another talker so please feel free to contact me and we can share some experience.

[Jimjams]

heartinthecountry- my friend may be interested in your story. Her dd now aged 8 has regressed and she has been told she has been brain damaged due to her seizures. She is being investigated for ring 20.

[heartinthecountry]

Hi jimjams. Sorry, I don't know what ring 20 is. Assume it is a syndrome/condition? Do you know what kind of seizures her daughter has? I was definitely told that most seizures did not 'damage' the brain but perhaps that was wrong. I would be more than happy to share experiences with your friend. Contact me through 'contact another talker' I guess.

[Jimjams]

apparently she's going into status epilaticus (sp??) a lot and it is that that has done the damage. This has only been discovered recently though after she insisted on referral to a neurologist (had never seen one).

Ring 20 is a chromsome disorder. She does have some dysmorphic features so I think it is likely she has some sort of syndrome. I think the results will be through soon. I think not having a dx has made it hard from my friend (well actually she has lots of diagnoses- but my friend thinks there may be one that all her conditions fit under).

[Caroline5]

dd did have an EEG (but not overnight) which didn't show anything abnormal. Strangely, she has been doing more breath-holding/shaking recently again, which now seems to upset her. We don't know the cause of her delay but probably genetic. She is being tested for Rett syndrome (have been waiting for over 8 months for result !) and have to say that the breath-holding and hand-wringing that she does are features of it.

Her petit mals are probably related to her global delay, but the vaccine obviously disturbed things and triggered them off.

hitc - I googled Aicardi syndrome, it looks really hard for you, are you on the web site? There are some gorgeous little girls there Retts is the same with it only affecting girls.

[eddm]

Internationgirl, that's what gets me about epilepsy; it's so variable and so little-understood. You probably know it's defined as a tendency towards having repeated seizures so it's more a label (although helpful in that at least you get treated, hopefully) than anything concrete.
Jimjams, can't believe your friend's dd has been going into status epilepticus regularly and hadn't even seen a neurologist until your friend demanded it. That's terrible. Is she getting proper treatment for the seizures now?

[Jimjams]

caroline- why so long for a retts result??? that's terrible!

Not really eddm. The neurologist she saw is in a different HA. She is now on the waiting list to see one here, but the wait is over a year.

She has lots of other health problems as well which are equally ignored. No-one seems to care.

[Caroline5]

God knows Jimjams! The paed has chased it several times but got no response. The geneticist seems snowed under and doesn't bother to reply. He did initially say there would be quite a long wait, but suggested about 4 months. At first I didn't mind waiting because I didn't really want to know iyswim. Now I keep veering between thinking she does or doesn't have Retts - the wait has got beyond a joke.

Perhaps I will give him another ring on Monday.

That sounds terrible about your friend and the year long wait

[lorne]

Hi Carolines5,

Hope you don't mind me asking you about epilepsy. I got my ds checked out because he was going into little day dreams like petit mal. Anyway doctor didn't thing it was, they thought it was just the way he is but I then got an eeg done. Again this came back normal. Would eeg's always give the correct results? He is getting on fine at nursery etc with letters, numbers etc. They don't think going into these dreams etc are causing any problems but I must admit I am still a bit concerned.

Hope everything works out with your dd. It si such a worry being a mam sometimes. All the best.

[eddm]

Lorne, I think (but not an expert) that EEGs sometimes don't show abnormalities if you aren't actually having a seizure or about to have a seizure. Maybe with some forms of epilepsy they do, but when I had mine it didn't show anything up. Wasn't until I had an MRI scan that you could see anything was different. (I developed epilepsy suddenly at age 29, never any sign of any problems before then. Go figure.)
I also think that unless epilepsy is a symptom of some other problem, on its own it doesn't necessarily mean the person will have learning difficulties (I don't, for instance and no-one would know I had epilepsy unless I told them. Hasn't affected my daily life at all and am still holding down a very demanding job seven years later). If your ds is doing fine and not actually having obvious seizures then it's probably OK.
Jimjams, that's outrageous. A child who has been going into status epilepticus will be at risk of brain damage because she's being starved of oxygen. And I imagine you know status epilepticus can be fatal. Is she not on any medicine at all? At the very least she should be taking anti-epileptic medicine to bring her seizures under control until she can see a neurologist. But with epilepsy this severe she should be seeing one tomorrow! I guess your friend is sick and tired of shouting for help, but she really needs to jump up and down and make herself a nuisance until her poor dd gets seen by a neurologist. Has she written to her MP/ the local paper? Both can be really helpful. HTH

[eddm]

Jimjams, just thought, there's a guideline for the NHS which states that everyone with suspected epilepsy who has had a seizure should be seen within TWO WEEKS. Give this link to your friend; it's got the current guidance which is out for consultatation but also a link to the first set of guidance. She should throw this at the GP, Primary Care Trust and hospital and demand to be seen urgently (which they define as two weeks). And if they don't move sharpish she should make a formal complaint and threaten to sue. They are getting away with this and it is wrong.
For some reason link isn't working but URL is:
www.nice.org.uk/page.aspx?o=108913

[Jimjams]

I don't think it'll work though eddm. She's been dxed with epilepsy- and received medication, it's just than no-one's been very interested in seeing what's going on iyswim. She hasn't had an eeg for 5 years - and has only had 2 (same number as my friend's son who has had 3 seizures in his life). She has quite profound learning difficulties now- and to be honest the NHS isn't interested. It's shocking but it has happened for everything she has been seen with. She's also never seen a genetic counsillor (now has been referred)- even though she has a collection of dx and dysmorphic features. It is shocking but no-one cares