Pediatric WG specialists

[WeggieParent]

I haven't seen any posts specifically listing pediatric WG specialists and they are hard to find! (Most WG specialists only see patients over 18 yrs old.) I thought I would throw out some names if anyone is searching. The VF recommended Dr. Steven Spalding (rheumotology) at the Cleveland Clinic. We drove up to see him over the Christmas holiday for a second opinion and loved him. While we were there he scheduled us an appt with Dr. Paul Krakovitz (Otolaryngology) also at the CC. They were both extremely knowledgable about WG in children.

[elephant]

I love Cleveland Clinic and so glad you went. Thanks for sharing this information.

[WeggieParent]

There are so many on this forum that talk about Cleveland Clinic that I was sure there were probably several of you sitting in the waiting area with us!! I should've stood up and yelled 'raise your hand if you're a member of the WG forum'!!!

[Sangye]

WeggieParent, I asked Dr Seo (JHU) about pediatric Wegs docs a couple weeks ago. He made several comments which I posted here:
http://www.wegeners-granulomatosis.c...estions-2.html

He mentioned a ped rheumy at CC but it was a different one. I'm overjoyed that you got to see Dr Spalding!

[whatthewhat]

We are new to this world, but my daughter's diagnosis and treatment are from the pediatric rheum team of Children's Hospital Los Angeles. They know their stuff.

[mishb]

I'm happy she is receiving great treatment wtw

How has she been doing these last few weeks?

[whatthewhat]

I'm happy she is receiving great treatment wtw

How has she been doing these last few weeks?

Thanks, Michelle - she is continuing to improve. She hasn't had a superbig sinus crust for almost a week. Her last Rituximab infusion (the 10th, I think) went very smoothly, and her weekly Methotrexate doses have also gone smoothly (no immediate side effects.) Also, her nightmares have not reappeared since her evening Prednisone dose was decreased; I don't know for sure that's related, but I'll take what I can get.

She's still dealing with redness where the worst of the sores were, but we are hoping with Vitamin E & time they will continue to fade. And of course she is still very weak. Yesterday I asked her to turn off some water for me, and reflexively she sort of sprang to do it, and I don't think her legs supported the landing and she fell. (It's hard to remember there's a whole new body there sometimes.) On the other hand, yesterday she walked a half mile in the morning, and a little over a mile in the evening (her first mile in the new normal!) and continues to do her physical therapy strengthening exercises as well as the pt for the neurapathy in her foot.

Her concentration seems to be holding steady - not what it was, but good enough to work on schoolwork again. And I think she is beginning to work with her appetite instead of having it run away with her (she is able to make healthier and for her, more normal food choices now.) All this exercise and normal routines and healthier eating I think is all going towards her spirits which are in general very very good. (The worst these days is frustration with the effects of Prednisone on her appearance, along with sadness about her soccer weaknesses.) She and I sat down and went through the folder the Rheum team gave us with diagnosis, so she learned about the disease more fully - although I did steer her away from the meds handouts. Those side effects are still a lot for me to process, and I want to be more settled with them before I talk it over with her.

So, all in all, things are going very well. She'll see her doc in a couple of weeks, and that will be another big step in the new normal - it will be her first visit to the clinic that's she'll be working with.

One of the best things to happen so far is that she kicked a soccer ball last Sunday, just gently, back and forth with one of her brothers and her dad. She wasn't holding onto anything for balance, either. She enjoyed being outside in the cool evening shade, and they had a good time laughing together. If I compare it to what she was doing with a ball 6 months ago, I am heartbroken, but if I compare it to what she could do two months ago I am on my knees in gratitude. I guess I prefer the latter.

I hope this finds you well, too. The only person I know IRL with a WG connection is my friend who lives in Syndey currently; her MIL has it. Funny there's a few Australians on the forum

[whatthewhat]

Here is the primary link to the specialists we are involved with: Pediatric Rheumatology | Rheumatoid Arthritis | Lupus | Airway Disorders - Childrens Hospital Los Angeles

When my daughter was in the hospital the docs said she was their 3rd WG / PGA diagnosis in 2 months, and that there was another WG patient at the hospital at the same time in fact. I think someone also told me they have 53 or 58 WG / PGA patients in their clinic. Considering how rare this disease is for children, I am very grateful to have access to a team (docs and resident docs, nurses, and social workers) that has seen the disease before, multiple times.