pediatric rheumotologist

[jeriorleans]

My son, was the 13 year old recently diagnosed. Problem I am now having is there are no pediatric rheumotologists that have seen Wegener's. Even his ENT and pulmonologist agree that an adult rheumotologist needs to treat him because they have seen the disease more often. I have an appointment for him at children's hospital in Birmingham, guess when? May 5. All the adult rheumotologists I have contacted won't treat children.

Anybody have any ideas?

[Sangye]

Have you called the VF? Also I would get calls in to Johns Hopkins, Cleveland Clinic and Mayo (Florida or Rochester) and ask for their advice. You may have to travel to them for treatment, and it may be true that there are no ped rheumys skilled in Wegs.

May is absurd.

[Dumpy]

I will be seeing the WG Specialist in Birmingham on Oct. the 7th and would be more that happy to ask her if you would like? It only took about a month to get my appointment thru my Dr.

[Gwenllian]

My consultant is Dr Nash, and he is an expert in Wegeners and he treats younger patients.

He is based at University Hospital of Wales Cardiff, tel. 02920 742626 (his secretary), and he is extremely nice and very very good at dealing with Wegeners.

Might be worth a call. GOOD LUCK x

[Doug]

Front Page | Vasculitis Foundation

Here's a link to Vasculitis Foundation. Others have had excellent luck getting recommendations through VF. Good luck. I would watch your son closely for changes in his symptoms, or strengthening of symtoms because, as you know by now, I think, Wegener's granulomatosis came move fast. Or slow. It's a frustrating and sometimes scary disease!

To save you a little time, I looked up pediatric rheumatologists in the advisor listings with VF. This is it! Perhaps he can help locate someone in your area (New Orleans, wasn't it?)

HASHKES, PHILIP J., M.D., M.SC.
Head, Section of Pediatric Rheumatology (only sees children)
Cleveland Clinic Foundation
9500 Euclid Avenue
Cleveland, Ohio 44195
Phone: 216-445-8525
Fax: 216-445-7569
Web: www.clevelandclinic.org

[jeriorleans]

WEll I tryed to get an appointmetn in Alabama. THey gave me May 5.

[Sangye]

Did you tell them he's already been diagnosed with Wegs and his docs want him to see another specialist?

If so, you can ask your doc to call their office personally and see what they can do to get him in sooner. Doctors do that all the time. They seem to enjoy being able to flex that muscle!

[Sangye]

JeriOrleans-- I saw the name of a pediatric rheumy listed on the VF Consultants list. He's at Cleveland Clinic. The consultants will work with local docs and guide their treatment. Give CC a call and see how they might help you.

[jola57]

Good Lord May 5, have they no shame? I think the problem is secretaries do the bookings and simply do not understand the special need, having your doc phone (not his secretary) may be better and will give the request more urgency

[Doug]

I agree. You have to become your son's biggest advocate. Before it's over, ,the office help may have some choice names for you, but you will have saved your son undo suffering and tissue damage, reduced the time it takes to get him back to just being a kid. (Think "Your Worst Nightmare"! That's the mode you need to take on, though in a nice way!)