Vasculitis UK

Has my daughter got cerebral vasculitis? Google 'Girl with mystery illness' photos & illness description were in newspapers Nov 2016

Originally thought to have suspected seronegative autoimmune encephalitis, has my daughter got cerebral vasculitis? Vicky had a mosquito bite in Menorca that didn't disappear for months, a week after the holiday she couldn't sleep, she has a recurring all over body rash like HSP which travels from head to toe swelling up the parts of her body as it goes down. She suffers from memory loss, difficulty understanding and speaking, slow processing, aphasia, incontinence or not going at all, physcosis, aggression, hypomania, constant headache which gets worse when concentrating, hepatitis, loss of appetite, bleeding and swollen lips, swollen lymph glands, swollen tongue, strawberry tongue, mouth ulcers, no periods often for 4 months, hair loss, stomach pains, high temperature and vomiting. Vicky was a healthy, active, bright 14 year old, she's been ill for 18 months, now aged 16 and still no diagnosis! Hospital admissions were Sept 16 to Feb 17, July 17 to sept 17, Jan 18 onwards. Vicky's had antibiotics, steroids, immunoglobulin, plasmatherasis, rituximab and been on Mycophenolate Mofetil since Oct 17, with methlprednisolo intravenous steroids last week, the rash is not disappearing, however, speech has improved, consultants are not sure what to do next. Are there any specialists who can advise the neurology consultants at Bristol children's hospital? Has anyone else got symptoms similar to my daughter's?

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Hi Vickysmum,

I remember reading your daughters story in the press when first reported and am very sorry to hear that she still isn't well.

She has had a lot of medications that are used to treat Vasculitis.

The best advice I can offer is to get in touch with Prof Paul Brogan and his team at Great Ormand St Hospital in London. He is a Rheumatologist and specialises in childhood Vasculitis including Central Nervous System Vasculitis ( CNSV ) Vasculitis U.K. have actually funded his team to look at genetic causes of CNSV, has Vicky ever had any genetic testing?

Vasculitis U.K. have a helpline if you would like to phone or e mail and speak to myself or John.

vasculitis.org.uk/helpline

In cases such as Vicky's the only thing that can bring about a breakthrough is collaboration with other Consultants.

Best wishes

Lynn

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Prof Brogans details, I can't stress enough how helpful he could be to Vicky.

gosh.nhs.uk/medical-informa...

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Thank you, that's really helpful. Vicky's not had genetic testing yet. I will try contacting Prof Brogan

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Thank you very much, I think the consultants here at the Bristol children's hospital are still struggling to diagnose Vicky. The consultants say they have a few more investigations to complete. They have suggested a referral to GOSH, but for after the multidisciplinary meeting due on Thursday.

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I would definitely push for a GOSH referral, specifically to Prof Brogan if Vasculitis or auto immune/ auto inflammatory disease is still a rule out.

It only takes 1 Dr to have seen something like this before or know what investigations can be helpful to get a diagnosis.

Good luck and please do give us a phone if you would like to talk things over.

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Thank you very much for your help.

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