Central nervous system vasculitus

hi - my 11 year old daughter has been diagnosed with csn are there any fellow sufferers here or other children and parents I can speak to. Were told it's rare and very rare in children.

She recently had a brain biopsy, and is having cychlophosphermide treatment. It would be great to speak to others.

We are in Newcastle upon Tyne and there doesn't appear to be anything at all locally?

Thanks

12 Replies

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  • Hi Tracy So sorry to hear about your daughter, she is very young to be diagnosed with CNSV. As you say it is very rare. Cyclophosphamide is a very powerful and effective drug for controlling Vasculitis.

    There are others in the group with CNSV and there are also parents of children with different types of Vasculitis so I am sure you will be able to talk to someone in the group. Could you please tell me where your daughter is being treated please? If you want to tell us by private message that is fine... We do know of some excellent consultants who specialise in Vasculitis and Vasculitis in children. if you should need any further help or advice.

    There are plans to start a new Vasculitis Support group in the North East in 2013. It is under discussion at the moment.

    You can phone us or email us anytime.. vasculitis.org.uk/helpline

    Take care

    Susan and John

  • Thanks so much. I would be willing to help with a north east support group if needed

    I feel that I need to do something to raise awareness and funds if required. I work in a mental health trust, and feel that this disease could be more common than is diagnosed, as our daughter, because of her symptoms was referred to a therapist first. We were lucky she had a huge seizure that took us to hospital, and our fantastic consultants who recognised the symptoms.

    We are being treated at the great north children's hospital in the Royal Victoria Infirmary in Newcastle - I cannot praise the treatment enough. Xx

  • If you feel you can, could you give John a ring.. he would like to talk to you... John is chairman of Vasculitis UK and also has Vasculitis he has Wegeners Granulomatosis. Jenny and Richard are looking for an area in the North East to start a support group in the Spring. Our telephone number is 01629650549...

  • i will give a call on Monday :-) x

  • John is at the docs at 11am so if you can phone before 10.30am that would be great.. otherwise he will be home at tea time 5pm.. as we have the grandgirls in the afternoon. :-)

  • Ok x

  • Hi Tracey, I as others are very sorry to hear about your daughter and being so young? I was diagnosed with Cerebral Vasculitis in 2008 which presented with several mini strokes and a major one sadly. I narrowly avoided a brain biopsy with diagnosis from angiogram fortunately and several CT and MRIs so I am really sorry that your daughter had to go through a biopsy? I was initially treated with high dose Pred and Cyclophosphamide for several months. This severe dose of treatment did treat the acute form of my Vasculitis. As you are probably aware the treatment is not pleasant and did cause several side effects such as sickness, hair loss and did actually bring on the Menopause for me but at the age of 44 and having had 2 children, this wasn't an issue for me? I was warned before I had the treatment that it would make me infertile so I guess you must have been warned of this also? How is your daughter coping with Cyclophos treatment? Since stopping the Cyclophos treatment I was also able to come off the steroid treatment with the steroid sparing drug, Mychophenolate. Many of my problems now are due to the brain damage sustained from the initial episode of the Vasculitis and the strokes I suffered?

    Please let me know if you want to get in touch?

    All the best

    Sarah

  • Hi Sarah thanks so much for your message.

    Jess has 2 more treatments to go and is coping well. Yes they have said there is a chance she may be infertile, however we don't know.

    It's good to hear that your off the drugs, Jess brain seems to have put itself right so were hopeful that she continues in this way.

    It's nice to have others to contact about this disease as knowone has heard of it and because Jess look sort of ok people don't realise what the little lass is going through. Really really proud of her!! :-D xx

  • Hi I am so pleased that she is coping and hopefully she is young enough for her brain to heal faster than us oldies!

    And yes the awful thing with something like this awful disease is what my children have found hard to deal with, that you look erlatively ok once the acute side of the illness has improved and yes people (and some doctors!) assume you are relatively ok but being neurological, it couldn't be further from the truth?

    All the best and I hope Jess continues to improve, she sounds like a star bless her!

    Sarah

  • Hi Sarah, if your on facebook I'd love to keep in touch via the vasc Facebook page, it's so helpful to have people I can ask questions to. Xxx

  • Hi yes I am and will certainly try as not great with it but will get daughters' help!

  • Hi! I was really sorry to read of your daughters diagnosis. I know how terrified I was a few years ago when my son ( who was 19 at the time) was told he had vasculitis. He was very fortunate it was limited to the skin on this occasion but it was a shock when the specialist who diagnosed him warned him it could cause internal problems such as kidney damage and stroke. He had a skin biopsy and throat swabs as well as blood and urine tests so nothing like your daughter has had to endure. He had to keep his legs elevated for 5 weeks till things settled down. He was in college and is a proper 'doer' so that drove him nuts - but other than for antibiotics to treat the chest infection he had when it flared he didn't need any of the awful meds others have done. He was told in no uncertain terms that he must take antibiotics as soon as he gets a sore throat ( this is for life unless a cure is found in that time). This is because they think the trigger was a reaction to his body turning on itself when it tried to fight off strep. What was scary was the specialist said he had to take the antibiotics straight away as there wouldn't be time to get a swab cultured to confirm strep before he could develop end stage kidney damage. He could have a swab as well to track how often it is strep or if just a virus. He has had no further flares so far but he says psychologically it is like carrying a time bomb round with you all the time. He is in uni now and doesn't want it to dominate his life but as he says he can't just ignore it either. So although his situation is day to day much less of a problem for him than your daughter I do have some idea of the emotional impact of your child getting a vasculitis diagnosis. I can't describe how it felt when we were waiting to see if there was internal damage- afraid of losing him yes but the helplessness was almost unbearable. I was very anxious about him going off to uni as he needs to look after himself well and act quickly if a sore throat appears. He said it made him think long and hard about many things. So my heart goes out to you - if you just want a chat sometimes I will be happy to give a hearing ear. If you want to do it privately that is fine. Big hugs to you and your daughter!

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