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.