my 8 year old son in hospital now.

[Doug]

I don't think anyone has given you the link yet: Front Page | Vasculitis Foundation
You will find information on doctors and institutions specializing in WG treatment in this website. People who've made use of it note the docotrs are very helpful, will steer you to specialists or consult with your son's docotrs. It also give losts of information on WG, an excellant starting place to help you learn all the major questions to ask you doctors (though I see you've already been given excellent advice above!). Study it, arm yourself with facts about treatments and side effects (especially critical when a child is involved, and he's already had serious kidney involvement). God bless, and know that there are no stupid, silly, or embarrassing questions you can ask on this website.

[Theresa]

Talentx7,
I was where you are just a few short weeks ago. My 14 year old son was diagnosed with WG at the end of March. We were so desperate for answers when we were at the hospital and before that also, but getting the diagnoses was very scary. He has responded really well to the cytoxan (chemo) and the prednisone. He is also on blood pressure pills, antibiotics and a few other things. He was back at school a couple of weeks after he started the meds and is MUCH improved from before we went to the hospital. We have a ways to go to get to remission but he is doing well. Leading a pretty regular lilfe. He will start a summer job assistant coaching a swim team in a few weeks.

Feel free to email me at Theresa@TI.com if you like. I'll be praying for your son and your family.
Theresa

[Sangye]

Theresa, I'm so happy to hear how well your son is doing. It's wonderful to see you offering help to other moms whose kids have Wegs--much needed on our forum!

Have you made any progress in finding a Wegs specialist? This is a good time--when things are going well in treatment. Just thought I'd start my day with a good solid nag.

[Theresa]

Sangye,
I appreciate the nagging. We are talking to Justin's Rheumatologist about this at our next appointment. I've been looking at the websites of the different Vasculitis Centers and all seem to need a Dr. recommendation.

Theresa

[Sangye]

Yes, they require a dr recommendation and all the medical records. I don't know about other centers, but JHU usually takes about 6 weeks to get in once they get the records. They review them first before you can make an appt. I've seen them get someone in faster on occasion, if they need to be seen more urgently.

[elephant]

When I made the appointment to Cleveland Clinic, I go in pretty fast. I think it was two weeks, I was not bad off. I think it depends....

[jeriorleans]

My son was diagnosed in September at age 13. I also was scared to death, and to be honest, still am. Every little cold makes me stay up at night to make sure he is breathing. Pediatric rheumotologist are hard to find and adult rheumotologist will not treat children. We go from New Orleans to Atlanta, the Emory Clinic. The medicine is a nightmare. My good natured kid had a hard time with it. It does get better and he will start doing a lot better, but it doesn't get any less scary. Also, the steriods cause weight gain, adding insult to injury because other children can be so cruel. Talk to all of his teachers, let them know what is going on. When he doesnt' feel well, keep him home from school. Worry about now, not the future. My son just completed the 8th grade and missed over 60 days but he passed, but I wouldn't have cared if he didn't.

[talentx7]

I am trying to find out if my sons dr. is a weg. specialist. I know she is a ped. rhematologist that has treated and has current children with WG under her care. Does anyone know if there is a Pediatric Weg specialist and is there a list somewhere?? Google doesn"t seem to have an answer..LOL.

[elephant]

I am wondering if any of the Wegener's specialist would take care of your son? Try calling the Cleveland clinic in Ohio ( the are under the vasculitis foundation) and see if they can help out maybe one of the wegeners specialist there would take care of him or know someone who would. Department of Rheumatic and Immunologic diseases is 216-44-6056 or 216-444-5632. I see Carol Langford there at the Cleveland clinic.

[jeriorleans]

I had tried to get my 13 year old an appointment at the University of Birmigham in August of 2009 when he was first diagnosed. Despite recommendations from his doctor, they gave me an appointment in May of 2010. That is how we ended up at the Emory Clinic because they got him in in a month. Rheumotology is one of the few fields where you have to also take pediatrics if you want to treat children. Not only will adult rheumotologist not treat children, they aren't allowed to treat children. Its very frustrating when the doctors who have the most experience treating Wegener's are those that can't treat children. Pediatric rheumys see very little Wegener's because its so rare in children. Rare? or misdiagnosed?