Wegeners in children

[Bailey24]

I am currently staying in hospital with my 13 year old daughter following her being diagnosed with wegeners disease. I came across this site as I searched the internet for as much info as I could get - as you do!

I have found this site very good, and am sure I will be visiting it often in the future.

I would be interested in hearing from any other parents/carers of children with wegeners.

[RichardE Volunteer]

Hi Bailey and welcome.

We do have some members with children with Vasculitis so hopefully someone will be able to help you with your query.

In the mean time, if you've not already found it, we have a section on our website about Vasculitis and Children here :

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

Hope this is helpful.

Richard.

[julesfarm]

Hi, so sorry to hear your daughter has been diagnosed with Wegners. My son, now 15, was diagnosed just over a year ago with it. He was hit in the lungs and kidneys with it. We had a 7 week stay in hospital, and he was treated with steroids, plasma exchange, dialysis and cyclophosphamide. His lungs recovered well, but unfortunately his kidneys did not and he will go on the transplant waiting list in the new year. After a long haul with wonderful care from Bristol Childrens Hospital, he has been back at school full time, returning to Bristol 2 - 3 times a week for regular dialysis and is doing really well. It takes some adjustment, especially if it comes completely out of the blue as my son's did. Hopefully your daughter is getting the right care - where has it affected her? I also found the vasculitus site a huge help in terms of knowledge, the Route map was invaluable - I even gave the doctors a copy. Let me know how she gets on, and please contact me again.

[Bailey24 in reply to julesfarm]

My daughter has damage to her kidneys nose & ears we are home now following 4 week stay at Great North Children's Hospital Newcastle with regular returns for cyclophosphamide & plasma exchange along with oral steroids

I am glad your son is doing well. & hope you are not on transplant list for long.

I hadn't heard bout the route map so thank you for that info I have ordered my copy

Am keen for as much info at the moment - altho all is not welcome - I certainly find the vasculitus uk site very good. & knowing that I can speak to other parents is reassuring.

Thanks for taking time to reply .

[cedric]

so sorry to hear about your daughter she is in the right place and they will sort out yours cedric

[antony9500]

Good morning,

My son was 19 when diagnosed but it is still down to us, his parents, to do all the worrying etc.

Had his fair share of problems but as many of the youngsters he is more concerned with video games, college and life's insignificant joys so the rest is down to you

There is a younger person's face book page which I believe may have conversations more pertainent to your daughter than you. ( it is monitored)

The main FB page is exceptionally handy if you have any questions to ask and want a virtually instant answer/advice.

Feel free to ask anything, if it's important to you it is important no matter how trivial you may feel the question is.

Read and learn with caution, everyone is different, life can be a bit of a pain in the ##### but not always.

I have a feeling that the younger sufferers can have a far more positive outlook on life in general and this in itself is as good as any of the drugs.

I spent ages on the internet but you soon learn to take time, be careful what you read and how you translate it to your own circumstances. We typed Wegener's into Google as the doctors were suggesting the condition ... Not a good read at the time and certainly not the case

We live in North London and use Enfield and mainly the a Royal Free at the moment. We are able to contact them at any time.

It is hard, after years of telling children to man up and shut up, that to start with every sneeze, you believe, may be a flair up, and you have to get it checked ( consultant instruction)

Best finish before I write a book

[Bailey24 in reply to antony9500]

Thank you for your reply - great to know that as a teenager he is more concerned with his computer games ! Leaving all the worrys to us parents.

I agree that you have to be cautious when researching on internet I have certainly wished I hadn't looked at some sites.

Loved the positive vibes I got from your message - helping a lot at the moment.

[antony9500 in reply to Bailey24]

Many thanks

Tonight Giles is with his brothers and friends at some show or other in town, 6 months ago we were called up to ICU and told to expect the worst, since then we have been to Spain ( with oxygen - priority boarding! ) America and he is back in college and he 'forgot' to empty the dishwasher before he left.

[Bailey24]

Ah that's great ! He's certainly not letting this hold him back - good for him. & what an inspiration ! keep up the good work !

Regards x