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Chickenpox/MMR and Encephalitis Concerns - Urgent

(24 Posts)
suedonim Tue 22-Feb-05 22:06:22

I hope someone can help out here. I've been asked to find out if there's likely to be any connection between chickenpox and MMR and subsequent encephalitis and regression in a 2yo girl. She had chickenpox about 6wks ago then had her MMR jab shortly after. A few days after MMR she developed a red ear and the surrounding part of her head. After a day or so that went away but she started slurring her words & stuttering. She forgot certain words and when she did remember them they came out all wrong. She had a CAT scan and but was sent home with no diagnosis.

Her condition worsened, heavy eyes, lethargy, continued speech probs and losing the ability to do things. She was taken to hospital and an MRI scan showed that she has encephalitis. The hospital says this is a complication of chickenpox but no treatment has been offered.

As you can imagine, her parents are very concerned - can anyone throw any light on what might be going on with this little one?

PuffTheMagicDragon Tue 22-Feb-05 22:14:42

Sorry, no experience to offer, just bumping this for you. How awful for her parents, they must be so worried .

MistressMary Tue 22-Feb-05 22:17:13

Not sure suedonim,hopefully someone can enlighten you and hope the best for the parents and the little girl.

DragonTwiglett Tue 22-Feb-05 22:17:20

no direct experience I'm afraid

I did have a friend who's little girl had chicken pox and was rushed into hospital as she had some pox on her brain .. I didn't realise that they can actually effect any organ .. once the illness went she was fine

I am surprised if they would have given MMR before the CP cleared up totally, did they? they don't normally vaccinate in the case of severe colds let alone CP

What have they been told by the hospital?

ChicPea Tue 22-Feb-05 22:27:25

Suedonim, this sounds awful. Had she fully recovered from the Chicken Pox when she had the MMR?
I cannot offer any advice nor do I have any experience of this. Can only offer my sympathies and will watch this thread.

Jimjams Tue 22-Feb-05 22:31:40

Suedonim Paul Shattock at the autism research unit did look into this. When I initially contacted him 4 years ago about ds1 he mentioned that they suspected there could be a link between getting chickenpox, then having the MMR shortly afterwards and regression. This was based on the number of parents who had talked about this happening. He also mentioned some studies that showed that catching wild type chickenpox and measles or chickenpox and mumps in the same year increased your risk of becoming autistic.

I asked him about the chickenpox link again about a year ago and he said that they had started to look into it, the study wasn't complete but it looked as if there was no link. It would be worth contacting him though as he will be able to give an up to date picture. He is a lovely man and responds pretty quickly to emails (hopefully someone else will respond if he's not there). It's often easier to email him than get through on the phone (the lines are often busy).

Jimjams Tue 22-Feb-05 22:34:41

BTW what do you mean by red ear? Do you mean the skin? I've never really understood the significance of red ears (having one red in particular- ds1 often has this) but would be worth mentioning to Paul Shattock and its something allergy induced autism get very excited about - and he works in close contact with them so he'll know why.

Jimjams Tue 22-Feb-05 22:36:13

Paul Whitely is kind of second in command at the ARU so if you can't get hold of Paul Shattock would be worth asking him.

suedonim Tue 22-Feb-05 22:55:12

Thank you for the replies so far. Afaik, the chickenpox had gone by the time she had the MMR, though I was surprised she'd been given it so soon.

The hospital (one of the big London ones) has been pretty unconcerned and offhand - they originally said they'd be in touch in 4wks time with the result of the MRI scan but the parents insisted that someone see them then and there.

Jimjams, with your knowledge, do you think this is 'just' encephalitis or would you suspect something more serious could be going on? I'm not sure how receptive the parents would be to any other possibility atm.

suedonim Tue 22-Feb-05 22:58:37

Oops, more posts! I think the red ear and surrounding skull area was as if it might be getting inflamed or infected but the redness went of its own accord.

Jimjams Tue 22-Feb-05 23:01:46

No idea I do know someone who had encephalitis following chickenpox but she is autistic so not a good example. I also know someone (in ds1's class) who was a bit like this after MMR. Easy for the hospital not to be concerned!

I wouldn't say anything if I was you ( my policiy is never to say anything unless pparents ask specifically because a) you could be wrong and b) if you're not there's bugger all help out there anyway). I wondered whether it was worth you contacting the ARU in this case just in case they know any more (I suspect they would say they couldn't find a link in their studies) and more to the point just in case they've heard about some anecodotal treatment (for example would it be worth going gluten free for a while-or at least sending a urine sample in for analysis- the autistic kids who respond to diet are often the ones who regress following illness and/or jabs, and if there is a problem in that area then damage can be prevented by not exposing them to gluten and/or casein).

Jimjams Tue 22-Feb-05 23:02:58

If a red ear kept coming back then that would suggest that a gluten/casein free diet would be worth investigating. Poor little thing- mjst be terribly worrying for the parents.

suedonim Wed 23-Feb-05 15:59:55

Thanks, Jimjams - don't know where you get the time to answer all our concerns, lol!

tamum Wed 23-Feb-05 16:03:42

FWIW, my dd had encephalitis with chickenpox (nothing to do with MMR) and made a full recovery, but she wasn't ill for as long as this little girl has been (48 hours or so), and it was within about 2-3 days of the chickenpox starting. Your friends must be woried sick, the hospital sounds unbelievably offhand.

suedonim Wed 23-Feb-05 19:11:13

Thanks for your experience, Tamum. The hospital does sound weird. If that was me, I'd always want to err on the side of caution with children but they seem so dismissive. Why don't they listen to parents??

Jimjams, I've emailed the ARU so will see what reply is forthcoming.

yoyo Wed 23-Feb-05 19:19:30

I always thought there was a risk of encephalitis with chicken pox but that the risk was greater with adults. DH had it with both DDSs when he was 37 and was very poorly. The doctor who came out to see him (yes thay do exist) mentioned encephalitis at the time.

Jimjams Wed 23-Feb-05 22:35:28

Let us know how you get on suedonim and hopefully she'll start to get better soon.

just occurred to me that the son of one of my best friends had probable encephalitis following a viral infection (not chickenpox and he hasn't had any jabs at all so not jab related). he had very bad seizures- but has made a full recovery (very quickly). Sorry I didn't think of it yesterday as the encephalitis was only diagnosed recently- 2 years after the event (he was initially dxed with epilepsy).

suedonim Fri 25-Feb-05 19:55:55

I heard back from Paul Shattock today. What a lovely man to find time to reply to random queries!! He outlined the Cp/MMR research and that their studies didn't show any link but he still thinks it a bad idea to give vax so soon after an illness like Cp. He doesn't feel she has encephalitis but instead it may be a recurrence of Cp infection and that the little one should make a complete recovery before too long. He also asked to be kept informed esp if things start to go wrong.

Thanks for putting me onto the ARU, Jimjams, they sound like grand people.

jabberwocky Fri 25-Feb-05 20:00:54

suedonim, are they not doing any treatment at all for the encephalitis? My neighbor had this several years ago as an adult (not result of chicken pox) and was rushed to the hospital and did receive treatment of some form although I was not privvy to the details.

Jimjams Fri 25-Feb-05 20:02:48

aw I'm glad he was helpful suedonim- he is lovely and I'm glad he could be reassuring.

suedonim Wed 09-Mar-05 15:38:45

Update to this thread. The parents have had a meeting with the head of the vaccination prog in London. He said their daughter's illness is a reaction to the measles component of MMR, which has affected her brain. He feels she will recover and she has shown some progress in that she is now communicating with her daddy and bro. Previously, she wouldn't even look at them. She is back at nursery, though just plays by herself without connecting with anyone. (But playing in itself is good, isn't it?)

I'm amazed at the Dr's willing to admit that the illness is MMR related - maybe the HP's are lsitening at last! Will lyk if there is any more news.

Jimjams Wed 09-Mar-05 16:01:33

Thanks for the update suedonim I've been thinking about her- will keep everythng crossed for her. Would it be worth contacting Paul Shattock again - having heard what the head honcho said.

suedonim Wed 09-Mar-05 17:20:08

Yes, I'm going to contact PS again, Jimjams, as he asked to be kept informed.

Jimjams Wed 09-Mar-05 18:38:23

Hope he has some ideas. (or even better can provide some reassurances).

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