My 10 year old and cerebral vasculitis

[Shelley46]

Hi I'm new to this site wondered if anyone could help me. My daughter had a stroke last year she was 9years old, after 9months they diagnosed her with cerebral vasculitis, she's 10 now they also diagnosed her with ADHAD when she had her stroke, she isn't your typical vasculitis suffer having none of the normal symptoms so it to a while to diagnose. Should say stroke was due to a tare to her corrotated artery. Have been told by her consultant that it's rare for children to have this type of vasculitis. Can anyone give me any advice. Thankyou in advance.

[RichardE Volunteer]

Hi Shelly,

I don't have cerebral vasculitis myself but as you say, I think that it's a rare type and particularly so in children.

However there are a few people on HU with the disease who I'm sure will be able to help you. There's also an interesting article on the VUK website by Viv Dunstan who was diagnosed at quite a young age too :

vasculitis.org.uk/living-wi...

Viv is on HU so I'm sure she'll comment shortly.

All the best,

Richard.

[Shelley46 in reply to RichardE]

Thanks RichardE. Yes her post is very helpful and hopefully as time goes on and I find out more about it and treatments I'll be able to tell you more.

[vivdunstan Volunteer]

Cerebral vasculitis is incredibly rare full stop - 1 case per million people of population in Europe, including the UK, and North America. So it's a very little seen form of vasculitis. I've heard of a few cases of children with it, but it's unusual I think, as the consultant says. I was 22 when I fell ill in 1994, so a young adult. It took me 3 years to be diagnosed because my case was very ME-like initially, then looked more like MS, and I had to fight with the medical system and doctors to get assessed properly. I'd never heard of vasculitis before I was diagnosed in 1997, let alone in the brain.

What treatment is your daughter getting? Treatment for cerebral vasculitis can vary depending on each case. There are also concerns and issues about using chemotherapy in certain situations. For example Cyclophosphamide can affect fertility, though I don't know what the situation would be for a 10 year old, presumably pre puberty. In some cases doctors use milder immunosuppression as a first line treatment, so something like Azathioprine or Mycophenolate Mofetil. Steroids are the basic treatment, but the other drugs reduce how high a daily steroid dose is needed.

Sometimes cerebral vasculitis can burn out itself, and go away. Sometimes it will go into remission, and you don't need to take the drugs long-term. In other cases it's necessary to control it with a maintenance drug cocktail, maybe an immunosuppression drug like Myco Mof or Azathioprine, and possibly a small dose of daily steroids. Even in remission there is a chance the disease can recur, and more aggressive treatment would be needed then to get it back under control.

What has your consultant said about your daughter's case? Is it well controlled? Does he or she think it's going to be an ongoing issue? What advice have they given?

Happy to answer any other questions you have, but remember I'm just a patient with this diagnosis, and definitely not a medic!

Good luck!

[Shelley46 in reply to vivdunstan]

Thankyou Vivdunstan, she's only just been diagnosed so no treatment yet. She's had a lumber puncture don't know how many blood tests, CT angiography and a CT angioplasty in the last week. Her consultant didn't know what it was a first as it was a change in her MRI scan rather than symptoms so at first she ruled it out saying that she thought it might be but didn't think so because she didn't fit the normal criteria for it, only when another consultank from great Ormond Street who specialises in it told her it definitely was cerebral vasculitis did she contact me and ask me to bring her in for further testing. Consultant is hopeful that it's burnt itself out and at the moment she won't need drugs but her bloods have shown up typical p-anca so until we get CT angiography results I don't really have any idea what's happening or what her future is. Only that we've had the year from hell since she had her stroke on June 20th 2014. Hope you are ok and once again thankyou for replying. When we get any results and prognosis I'll let you know.should add that there main concern is she may have another stroke if it goes untreated.

[Suzym2u Moderator Vasculitis UK]

Hi Shelley, As Viv has said, CNS vascultis is extremely rare, especially in children.

There are other rare diseases that can be confused with CNS vasculititis so it is most important that your daughter gets the best possible attention. Where is she being treated at present?

John

[Shelley46 in reply to Suzym2u]

Her consultant is a the Leeds General Infirmary and she is working with a specialist in the field from Great Ormond Street hospital.

[Suzym2u Moderator Vasculitis UK in reply to Shelley46]

Is that Prof Paul Brogan? Shelley

[Shelley46 in reply to Suzym2u]

I don't know her consultant at the LGI hasn't told me her colleagues name from goms. Can I ask why, is he good.

[Suzym2u Moderator Vasculitis UK in reply to Shelley46]

Prof Paul Brogan is the lead at GOSH for treating children with Vasculitis. As John has mentioned above, it is essential that your daughter sees someone who has the expertise for treating and managing CNSV in children. We only know of two other cases.

Susan

[Shelley46 in reply to Suzym2u]

Thankyou I will ask her consultant at the LGI if it's him and if not if she can talk to him about Becky.

[Suzym2u Moderator Vasculitis UK in reply to Shelley46]

please let us know how things go for Becky

best wishes

Susan

[Rebecca10]

Hi, in 2013 my son suffered with a stroke in his eye. He was seen by the vasculitis expert at GOSH. He also had an MRI and lumber puncture, we were warned that he may have cerebral vasculitis. His MRI was normal however, but he has developed uveitis (an autoimmune chronic condition that can be sight threatening). Scarey because he has suffered permenat sight loss from the blood clot. Not the same as a stroke I know but I can relate to the terror and the hope, coupled with paralysing fear.

Anyway, with the vasculitis expert at GOSH your daughter is in very safe hands. I cannot speak more highly of him. My son now takes methotrexate for the uveitis not for vasculitis because none was found. I found this website because he condition was so unusual I could not find a group where we fitted in and I felt very alone.

Just wanted to say. I can relate to how it feels. Having a seemingly healthy become very ill, the worry of all the tests and the loss of faith in the future.

I wish you the very best for you daughter

Becca

[Shelley46 in reply to Rebecca10]

Thankyou so much for your reply, I'm sorry to hear about your son it must be devastating for him to loose his sight and in a way more devastating than a stroke because at least at the moment Becky's disabilities although permanent weakness will always be there she's able to get about and do things now, hopefully the vasculitis won't become worse if she gets treatment but we won't know until we've got the results of all the tests.

I wish you and your son the best for your future and if you want to chat or vent I'm always ready to listen.

Shelley.