Son with Vasculiti Anca Associata with renal involvement

[Wizzi]

Hi

I write from north of Italy. In March of this year the doctor told us that my son, who is 11 years old and 1/2, has an aggressive form of Vasculiti Anca Associata with renal involvement. At first they saw a

Rapidly progressive glomerulonephritis that now after due mounths of

cyclophosphamide, Prednisone and three cicles of

intravenous injection of cortisone, has became GN. The creatinine is quite ok.

He had a PRES last week and now is under MMF and they are reducing the prednisone.

I'm disperate, because the effects of drugs and for the future. Anyone has children with vasculiti and can help me to find a reason to be positive?

thanks in advance and sotty for my english

[Tunabird]

It must be hard with a child,l am sure. My only advice is stay positive. You child will be more stressed if you are and l know for a fact (like any disease )stress will make things worse.Best wishes to your child for a speedy recovery.

[Wizzi in reply to Tunabird]

Thanks i'm trying my best to be positive but it's hard. I really needed to share experience also relative to drugs and treatments.

[Keithtim10]

Hi WIZZI it must be difficult for you to say the least i know how you must feel in some ways i am 66 and was diagnosed with Wegeners 18 months ago and had Plasma Exchange then 5 months of cyclophosphamide with preds steroids all the time.Then went on Azothioprine and had Calcium for my bones.I am now on Rituximab and having my second batch next week Its difficult with all the different drugs and the risks they hold but i have prsonally found that my everyday life and health is better than what it could be without the drugs.I have altered my diet as well which helps,but for a child it must be doubly difficult but believe me if you can guide your son and give him as much information about the illness i am sure it would help.

Hope this helps Wizzi

[Wizzi]

Thanks Keith,

The only thing that I can do for him is stay positive and help him to live his life as normal as he can. But it's hard after only two mounths. He is also tired and afraid. Anyone can suggest vitamins or integrators for bones (after alla cortisone) and for the energy? His doctor seems not interested in this kind of things. Will the effect of the cortisone go away (facias lunaris ecc)? He had to do also high dose endothelin cortisone. Any experience of that?

[Suzym2u Moderator Vasculitis UK]

If you write an email to John Mills [e-mail] he will help you with some advice and information

[Wizzi in reply to Suzym2u]

Thanks i'll write to him soon

[DuncanC]

My son was diagnosed with MPA at the age of 14. The treatment was very much the same as your son has had. He has responded to the treatment and is now 19 and at university and living a regular life. It did take around 2 years to get back to school full time, and a slow recovery process since. The thing to hang on to is that recovery (remission, as he is not cured as such) is entirely possible, and there is some evidence that young people can recover well. My son has a different attitude to life now than he might otherwise have had, and takes great pleasure from the small things; perhaps this is one 'plus' from this condition. I know your boy will have difficult days, but there is a great deal of hope that his vasculitis can be bought under control. Hang on in there! You guys are not alone in all this!

[DuncanC]

I should add that the fat face does disappear once the steroids end, and from our own experience most of there other drug-related effects also reduce with time. For example, the cyclo stunted my sons growth, but oddly he started growing again about a year ago, adding 2 inches to reach abnormal height. The real devil for my son was the fatigue, feeling exhausted the whole time. This too reduced over time, although I would say it took 2-3 years before he was more or less back to normal. A good diet does help as does keeping properly hydrated, but really it is a case of time. Low salt obviously with the kidney involvement. A little escapism does not hurt, and my boy escaped into World Of Warcraft, and to be perfectly honest it did him a lot of good. Please let me know how he does and I am very happy to be contacted by email - [e-mail]

[Wizzi in reply to DuncanC]

Thank you very much Duncan. I'll sure write to you.nTomorrow we have a control but today he has a bad pain und the right scapula. We can't undestand if it is a muscle pain or not. Have a good day