Hello - my 14 year old son was recently diagnosed

**Theresa** · 05-06-2010, 11:38 PM

Hello, everyone! It is so wonderful to find this communitiy of knowledge. My son was diagnosed with Wegener's about 6 weeks ago. He was a very athletic swimmer and in great health. He started getting sick in January and just got continually worse. After struggling for several months from doctor to doctor, he got so sick he ended up at Children's Medical Center in Dallas. A team of Rheumatologists, Renal, and GI doctors worked together to diagnose him. They thought it was Crohns for a while because he has some small intenstinal damange. He is being treated with Cytoxan and Prednisone. So far we are very blessed that he is not having bad side effects. He does have a lot of puffiness in his face and trunk area.

I'd like to hear from anyone else who has teens that are being treated in Dallas. Our doctors are actually from the Arthritis Clinic at Scottish Rite Hospital.

**JanW** · 05-06-2010, 11:59 PM

Hello, Theresa, and welcome. Sorry you had to find us.

I'm a newbie also, having just been diagnosed in January, but probably suffering from symptoms for several years. I take it that your son has kidney involvement as well as GI? Does he have nasal and throat also? This disease must be so, so hard for a teen to deal with.

**Brooke** · 05-07-2010, 12:23 AM

Welcome to the group and sorry to hear your son has Wegener's. There are a lot of people on here with some great information!!!

**elephant** · 05-07-2010, 01:03 AM

Hi Theresa, so glad your son was diagnosed early. I too was very young 12 years old when I started with arthritis symptoms.... back then the doctors had no clue what was wrong with me, I too was on prednisone and cytoxan. I was diagnosed with Wegeners two years ago, I am 44 years old now. So the whole time I had Wegeners disease, but the doctors did not know what? They knew it was autoimmune, they were thinking Lupus. My story is long. You will get great support here. Ask many questions, will be happy to answers them.

**Sangye** · 05-07-2010, 02:11 AM

Hi Theresa, I'm glad you found our group. This disease stinks for anyone, but I'm always so upset to hear a very young person being diagnosed with it--though I'd rather have them get the diagnosis right early on.

Having said that, I'm now going to nag you to get your son to a major Vasculitis Center for evaluation and treatment. It may seem that the docs right now are on top of it and that with such a large team they will cover all bases. Unfortunately, that's not true with Wegs. Many of us have had large teams of docs who were very skilled in treating other conditions, but they were not Wegs specialists. I can't emphasize the importance of this enough.

Wegs specialists each see hundreds of Weggies. Most rheumys will never treat a single Weggie. Some have treated a dozen in their entire career. If we took a dozen of us in this group, our cases are so wildly different that it hardly looks like the same disease. We need docs with tons of Weggies just to get a reasonable comparison.

If your son's docs consult with Wegs specialists by phone that's better than nothing. But it's nowhere near as good as seeing those docs yourself--asking them questions and having them guide treatment. Wegs is full of surprises. It's sneaky and often difficult to know what's happening. The drugs cause side effects that mimic Wegs activity and it can be disastrous to have a doc attribute active Wegs either to drug side effects or collateral damage from the disease. I've been there. Wegs also does silent damage, even when the lab work looks good. If a doc doesn't know to rely on signs and symptoms also, that can be disastrous as well. I've also been there.

The major Vasculitis centers in the US are: Mayo in Rochester, Cleveland Clinic, Johns Hopkins (Baltimore) and Boston University.

I hope you'll understand my nagging is aimed at ensuring your son has the best possible outcome.

**Theresa** · 05-07-2010, 11:17 AM

Thanks for all of the notes of welcome.

JanW - Justin (my son) has had sinus issues for most of his life. They were annoying but not life impacting. He had surgery for a deviated septum and to widen his sinus passages in March, it was a week later that we ended up at the hospital because of severe stomach pain, due to the problems in his intestines. So he has had sinus issues, probably from the WG. He had infarcts in his kidney but no damage at this point. He has very high amount of protein in his urine so he is on blood pressue meds to protect the kidneys. No lung impacts. He had inflammation in his esophogus too.

Sangye,
Thanks for the advice. I'll see about getting his seen by one of the places you listed.

Really appreciate all the support. Thank you!

**sharon** · 05-07-2010, 08:10 PM

Welcome Jan & Justin,
Glad you found us, sorry that you had to in the first place.
My only piece of advice is ask lots of questions, especially here, no question is too stupid, we have all been there.
Once again welcome

**sharon** · 05-07-2010, 08:12 PM

Welcome Jan
Glad you found us & sorry you had to. The best piece of advice i can give you is to ask lots of questions, especially here, no questions is to stupid or insignificant - we have all been there.
Once again welcome