my 8 year old son in hospital now.

[talentx7]

Hello everyone,
I am in the hospital with my 8 year old son. We were admitted on Wed. night and he had a kidney biopsy yesterday. The dr. just came in and told us he had wegeners and would be giving him high doses of steroids and starting him on Chemo drugs. I am terrified. I have been on line looking up this disease and it is very scarry. Can anyone reassure me that you can live a "normal" life??? Thanks, Adrienne

[Sangye]

and Hi Adrienne-- it's nice to meet you. Wow, 8 yrs old. That's just awful to hear. You're wise to do your research.

The most important thing is to get a Wegener's specialist involved ASAP. That's a rheumatologist who specialises in Wegs and who sees hundreds of Weggies. They are all involved in research. There aren't many of them in the world. Best is to have your son treated directly by one, which means traveling to a major vasculitis center (Mayo in Rochester, Cleveland Clinic, Johns Hopkins in Baltimore or Boston University). You can have them do the initial assessment and make a treatment plan for your local docs to carry through. You'd travel to see them a few times a year until he is stable, and then once or twice a year. They can discuss treatment on an ongoing basis with your local docs and you can also call them directly with your questions and concerns.

Second best is to have one of them consult with your docs. The Wegs specialists are VF consultants who do this for free. This is the MINIMUM you should do. The downside is that you don't have direct communication with them, which is a big deal as time goes by or if any complications occur. To do this, you would ask your doc to contact a VF consultant.

Wegs is a very scary disease. It's incredibly sneaky and is typically impossible for a regular rheumy to treat. It often presents with mysterious symptoms that fool even the experienced docs.

Having said that, many people do lead normal lives with Wegs. We have a lot of members who have kids and many who work outside the home. Some people do the initial course of treatment and don't have much trouble after and others have ongoing crises. Everything in-between. Some of our members have had Wegs for decades and have led fulfilling lives. Every person on here will agree that the number one most important factor is having a Wegs specialist. I've had docs who didn't know anything other than what they could read in a book, and docs who knew a fair amount. None compared to my Wegs doc. The others all nearly killed me and a great deal of damage occurred because of their lack of knowledge.

[talentx7]

Thanks for your quick response. I am at UCLA in CA. I believe he is under the care of a weg. specialist, but i will ask. They seem to have alot of knowledge. My son has been to many dr.s in the past 2 years. Mostly for joint pain. He would wake up and not be able to move a joint, usually a hip or ankle. He had a septic hip surgery 2 years ago and are now being told that was not the correct diagnoises. (not something I wanted to hear). We accidentlly ran into a dr. almost a year ago who told us he suspected WG, but he wasn't showing any organ involvement, just a positive C ANCA. so we were hoping it wasn't. Everything came crashing down around us wed when they rushed us to UCLA with only 20% kidney function. So here we sit, terrified. They did tell me very few children have WG. I would have rather won the lotto Any info or help is greatly appriciated. Adrienne

[Sangye]

It may be difficult to ask them, but you need to ask straight up "How many people with Wegs have you treated?" If it's less than hundreds, that's your sign that they don't know enough. Once the diagnosis is made and it's determined that the Weggie has highly active disease, the textbook treatment is high-dose pred and cytoxan. So they'll look like they know what to do since that's the typical protocol. But Wegs rarely likes to play by the book. And even if things go smoothly, non-Wegs docs don't know how and when to taper steroids or switch to another drug with the same skill as Wegs docs. They typically overtreat or undertreat. Both can have major consequences. My Wegs doc at JHU said "It's essential for everyone with Wegs to have a Wegs specialist."

I know many kids with rare cancers that have to travel cross-country to get the appropriate treatment. This is no different. I have to go to bed right now but will be back on in the morning.

[talentx7]

Thank you, those are the exact meds he is being treated with. Sounds like Wegs is VERY difficult and that this will be a long road. How long does it normally take to go into "remission"?

[DEE]

sorry to hear your news but your in the right place for help
this forum has helped me through some difficult times
im on cytoxan and pred and have started the road to remisssion and i find it is best not to think when
just deal with now you need your strength for that the when will come
you will probably be told about living life with a new normal at some point on here i did not understand at first but it is true
it will be clear in time as his treatment starts to work what this means
wishing you and your son a speedy road to recovery DEEx

[elephant]

Dear Talentx7, I am sorry to hear that your son is sick at a such a young age. I too encourage you to see a Wegeners specialist soon, since he is so young you will want to go and see one. Once you get established you will be able to call the wegeners specialist and be on top of his care. I am 44 years old and I started to show symptoms at age 12 ( fever and joint pain, red eye's) and they diagnosed me with Juvenile Rheumatoid arthritis and gave me aspirin. Well I got worse at age 15, kidney failure with some function. At that time the doctors had no clue I had Wegeners disease...they thought it was a autoimmune disease like Lupus. Had a kidney transplant when I was 24, doing great with my kidney....but then I started to show symptoms of Wegeners and finally diagnosed in 2008. Wegener's disease attacked my kidneys, lungs eye, ears, sinuses..and now..have permanent damage from it.
Remission is different for everyone. When your treated with a Wegeners specialist ( I go to cleveland clinic in Ohio) his outcome will be better.
My story is long so what I wrote may seem choppy. I hope your son gets better soon.

[Sangye]

Adrienne, there are no rules with Wegs, including getting to/maintaining remission. Some people do the initial typical protocol and go right into remission-- drug-free or drug-maintained. I don't know the statistics. A large percentage of people go into remission within a year, but the statistics don't say if it was drug-free or drug-maintained. About 50% will have a flare while in remission, which can be small or quite severe. Some people flare right away and others maintain remission for years. Some people take a long time getting to remission. I've never been in it for the 4 yrs since I was diagnosed. I'm hoping the new drug I'm on (rituximab) will get me there.

What remission looks like is also (sigh) highly variable. Some Weggies have no symptoms during remission and some continue to have a lot. This is where it gets tricky. A non-Wegs doc has a much harder time differentiating active disease versus damage from the disease/drugs. For example, profound fatigue is a common sign of active Wegs. But it also is caused by the drugs and/or the chronicity of autoimmune disease. Docs often either overtreat by assuming every symptom is active Wegs or undertreat by assuming everything is a side effect. With such a young child, it's even harder. Many Wegs symptoms are vague--not things that would be on a child's radar. We adults have a hard enough time. Many of our conversations on here center around "I'm not sure what's going on."

Dee is right about focusing on the present instead of remission. Keep reading, keep asking questions and get a Wegs doc.

[JanW]

Hi, Adrienne -- I'm sorry you have to be here, but glad that you found us so quickly after diagnosis. Everyone else is right -- please make contact with a specialist. One other thing I wanted to mention -- the vasculitis foundation is hosting its conference in Long Beach this summer -- I am planning to go and maybe some others are here as well -- it's much closer to you of course. I have subglottic stenosis (scarring of the windpipe), a saddle nose (collasped bridge), and ankle pain and swelling. Like Sangye said many of us here work, live fulfilling lives, raise kids, etc. It's awful that your child had to get this so young (I have an 8 year old son as well, so I can't even imagine), but hopefully you will find all of the answers that you need and be on the road to recovery soon.

[Col 23]

Hi Talentx7. I hope your son is feeling a little better. Sounds like he is in good hands. I agree with the rest of the group, learn as much as possible about Wegener's. I didnt even know how to spell it or had never heard of it in Dec 2009 when Diagnosed. Everyone's symptoms are different and varied and medications affect everyone in a variety of ways. Usually you can find someone on here that has experienced or heard of something that you may be experiencing. Being young and an early diagnoses is in your son's favour.
All the best
Col 23