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autoimmune encephalitis anyone?

(7 Posts)
myyoungadultdaughterworries1 Thu 28-May-15 21:05:17

Anyone experienced this?
Got a 20 year old in hospital 7 weeks now
Next step rehab place
Love to chat with someone?

EncephalitisSociety12 Fri 29-May-15 13:42:25

Hi There.

I work for The Encephalitis Society which is a charity that supports people and families affected by Encephalitis. You can contact them direct on or call 01653 699599 and we can offer help and advice. We can also put you in touch with other parents that have been through a similar experience.

There is lots of information on our website here

Here for you
Phillippa and The Encephalitis Society Team

myyoungadultdaughterworries1 Sun 31-May-15 18:43:31

Can I ask a couple of questions?
How / can she access benefits?
She was in university will come to us but obviously will want to live independently at some point.
Also it is suspected Rasmussens encephalitis - I believe that it is quite rare especially in adults
Are you able to find out how many cases a year of ai encephalitis and re are diagnosed each year in adults?

EncephalitisSociety12 Mon 01-Jun-15 08:32:50

Hi there

The best thing to do is contact the support team who will be able to help you in more detail and have lots of advice, they are the experts in this area.

Thanks so much.

YogaLite Mon 01-Jun-15 20:19:28

OP, have a look at this article

Also, i have read the book it mentions (Brain on Fire) which might give you some ideas although some of them were quite complex.
Have looked into gluten/autoimmune/brain connection and changing crier che lord my son. Also saw a consultant mentioned in the article who enlightened me a lot on this.

No easy answer but there are things you can try...
Good luck

hospitalworry Wed 03-Jun-15 21:46:19

How would I raise this question with doctors ( who I hardly see coz of coming after work or weekend)
Without sounding cuckoo? (im a regular person and they are a specialist centre)

YogaLite Thu 04-Jun-15 20:58:01

Well, something got mistyped in my earlier post, I was trying to say that gf diet helped my son a lot in terms of neurology and I was blown away.

It wasnt exactly the same condition as OP and it took me about 10 years to find the right specialist but some autoimmune conditions seem to be connected to gluten. And you won't know unless you do genetic tests or try the diet.

But nowadays a good neurologist would have heard about a possible gf/autoimmune connection I would have thought as there is lots of published medical research.

Our paediatrician at first was sceptical but since they had nothing else to offer, he was supportive and now convinced.

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