Daughter diagnosed with Wegeners Granulamotosis

My 14 year old daughter was diagnosed with Wegeners in January of this year after being hospitalized with what was first diagnosed as pneumonia. She went into renal failure and was on a ventilator for 2 weeks before she started responding to medications. She is doing fairly well right now and is finishing up her last dose of Cytoxin and being started on methotrexate this week. I am reaching out to anyone that can give me information on what she may run in to in the future. Can she lead a normal life? Is there any new treatments out there that may be better and prolong her life? Any good information would be much appreciated. I love her more than anything and thoughts of losing her are constantly going through my mind even though I try to maintain a positive outlook.

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  • I do not have experience with the response with children but I can tell you about my experience. I was dx March 2011. I finished the Intravenous Cyclophosphamide treatment in September. I have been getting stronger since then and have gradually returned to leading more normal life. However I do keep away from people I know to have infections. This would be harder if you were still at school. I have been sick a couple of times with little things like colds and they do lay me lower than before the treatment.

    It has taken me time to build up my confidence to do things, like go to the gym and go to the cinema and it sounds like it will take you time as well.

    I find life is fine as long as I listen to my body and do things gently. Hope this helps.

  • Sorry to hear your daughter has been so unwell, I hope now that she is on treatment, the wegeners will become more controlled. I was diagnosed when I was 17 and was quite unwell for a few years, partly because the doctors didnt really know an awful lot at my local hospital about wegeners and how to treat it. I now go to Addenbrookes in Cambridge where they know a lot about the disease as they have specialists there, I have been going for the last five years and they have really helped get the disease under control and if I do have a flare up, they know what treatments to give me. I hope you have that support where you, are you from the Uk? I am now on rituximab which, for me is an infusion every six months. However, I may be starting on one of two new drugs called Campath or DSG as I have been having problems with my airways for a while now. I have been told that campath is very succesful by my doctor although I am unsure whether it is available yet. Even though I have Wegeners, the right treatment and specialist has enabled me to return to college to gain my A levels and now I have just graduated from university so I hope that is reassuring for you and your daughter. I do have to be careful as I cant do everything I could before as my main issue is my breathing and walking around, however I am 29 now and I am still able to go out and lead a fairly normal life. If you need anything, send me a message. Lucy :-)

  • Hi Runtim, yes eventually she will be able to lead a reasonablly normal life, i have had WG for 20+ years and have been reasonably lucky by only having 2 relapses in the last 3yrs which has taken its toll this time but iam in my 60,s. It takes time to recover and gain your confidence again but think positive and she will get there and be her normal self. They are doing trials all the time and are coming up with new treatments all the time. Your daughter will need a lot of love and care and understanding while going through this which i no any mother will give so chin up think POSITIVE and you will get there in the end. I hav,nt gone into detail about myself as WG effects everyone in different ways take care and Good Luck to your daughter hope everything goes well for her x

  • Hi, I also have a 14 yr old son diagnosed with WG in July - I have sent you a private message.

  • Sorry to hear about your daughter , my daughter was in icu for 24 hours and spent 6 weeks in hospital went in adominal pain and had major surgery twice really sick been back in twice since and due to go back in again ,having chemo at moment on lots of medicine really been ill still not well know ,were do live keep in contact hope your daughter feels better soon from Sarah parent of rachel in oxfordshire

  • now they know what's with her she is on the right road back. once they get her meds right she can start to rebuild her life. I've had wg for 20 years now and haven't had to go into hosp for it for 11 years although I have yet to be in remission. minor flares are managed but I have other health issues which could be why.

    The meds and other treatments and knowledge of wg have made huge leaps since I was first dx'd and imrovements continue.

    all good wises, sandra.

  • Hi, As a parent and now a grandparent I can certainly feel for you.

    Given proper care, WG is a manageable disease, but of course, for a 14 year old it is especially important that everything possible is done to minimise the damage done by the disease. When it comes to WG, probably the two best people in the UK are Dr David Jayne at Addenbrookes, Cambridge and Dr Paul Brogan at Great Ormond Street Hospital. Paul specialises in paediatric vasculitis.

    Both of these doctors are not only among the top few vasculitis experts in the world but are very kind and caring and are always more than happy to discuss cases with other doctors and advise on the management of those cases, so if you live far from either London or Cambridge, you don't have to travel and tratment can continue at your local hospital.

    If you want contact details for either, or you want more information, please send me a private message on this site.

    But the really important message is that although WG cannot be cured at present it can be controlled and life can return pretty much to normal. Again, given proper care, there is no reason why she should not grow up, having a full and active life and perhaps have children of her own, then you will have grandchildren to worry about too - of course you never stop worrying about your children, no matter how old they are.

    (Just to reassure you, the chances of your grandchildren also having vasculitis are almost too small to calculate).

    Very best wishes

    John Mills

  • I have daughter 11 years old with MPA PANCA microscopic polyangitis positive vasculitis.She was diagnosed 12.2011.She had lung bleeding and kidney problem.She finished the Intravenous Cyclophosphamide treatment in May.She is now on cellcept and 30mg calcort another day.Her lung are normal but she still have protein in urine sometimes.She is living normal live,going in school,playing tennis.I hope that she will never have flair.I hope your daughter will be ok.

    This is very tough for us.My daughter still doesn't know what is MPA.She only know that she will go on periodic check up for anca for all her life.

    Good luck.

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