Vasculitis UK
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Recent Diagnosis of CNS Vasculitis (10 year old)

Hi,

After a recent trip to A&E my 10 year old daughter has recently been diagnosed with CNS Vasculitis. My question is what are usually the next steps? We have not really been told or explained anything.

Whilst admitted her neurologist said it was an auto immune condition, shown us the MRI scans and pointed out the various "white spots" on her brain. It wasn't until reading the discharge notes that that the term CNSV was first mentioned and at a following appointment a few days later with her eye consultant, he asked if we'd been told it was vasculitis.

Her neurologist wasn't overly concerned as this has been the first symptom with things going back to normal almost after a few days and we have a follow up appointment in 3 months, however looking back I'm not sure if there may have been minor symptoms that we thought was something else that cleared up on there own eventually.

She was admitted to hospital with a droopy eyelid, blurred and double vision and nerve issues in her right eye, tired and a lot weaker than usual. Everything cleared up after a few days and I'd say is 90% back to normal, her eyelid is still slightly swollen. The right side of her face is still slightly swollen too but I don't know whether that is due to her right sinus pocket full of fluid (something they picked up on the MRI and is being referred to ENT)

She had a lumbar puncture and various blood tests whilst admitted that we are awaiting results from.

We have been told to keep a diary of all unusual things, headaches, aches and pains etc.

Does all this sound about right? I don't know what to think at the minute.

Thanks, Leanne

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CNSV is so very rare 1/2 per million and it is even rarer in children. It is important your daughter is seen by a doctor/doctors who have experience and knowledge of CNSV.

If you would like to contact the VUK helpline at any time for support, advice or help please follow this link

vasculitis.org.uk/helpline

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Hi

Sorry to hear your daughter is not well.. Susan is right you are best to get further advice from The contacts provided. The good news is your daughter is now being investigated and it is my understanding that with prompt medical diagnosis and treatment with immunosuppressant s the prognosis is good for child CNSV.

Please pursue your enquiries and all my best wishes for your daughters health .

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Hi sorry to hear about your daughter my daughter was diagnosed at about the same age after suffering a stroke at the of 9. She has her good days which far out way her bad days now. We are lucky in that we have a very good team behind us. It is normal for them to do 3 monthly scans at first hopefully once they get the lumber puncture results they will have a better picture of what's going on. Yes it's normal to ask you to keep a diary of unusual things or things that may seem ordinary like headache, stomach ache joint pains can all be symptoms of cnsv. It's frightening at first and even two and half years later there are days when I still freak out when she says I've got headache,stomach ache together but it's usually just that time of the month for her. My daughter goes to school and I try to let her live as normal as possible a life as I can with her other disabilities and the cns.

So although right now it may look black there is always light at the end of the tunnel and the team on her are fantastic if you need any help or advice or just someone to talk to. I hope this as been helpful xx

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