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Hello Param!

I can understand the denial. Even after my daughter's diagnosis, it took me months to accept the fact that she didn't have H1N1 flu or something else. I just knew the doctors had...

My 16 yr old daughter has been on Cellcept for a year and 1/2. We've used both brand name and generic. (Our doctor said there was no difference.) She has tolerated both well with no difference in...

We found an amazing pediatric ENT and rheumatologist at Cleveland Clinic who see my daughter (16yrs old). Dr. Krakovitz is the ENT and Dr. Stephen Spalding is the rheumatologist. They both...

Rini - my daughter also had a hole in her lung and a chest tube from complications with WG. (She was 14yrs old when diagnosed over a year ago.) Reading your post about clamping the chest tube sure...

That is wonderful. I'm so happy to hear this. Best wishes to your dad and your family!!! :hug3: I know your whole family must be relieved that your dad is going home from such a long scary hospital...

Watersedge - I am so sorry about your dad. I also understand your need to figure out where and when it started. I've done the same thing for my daughter. At some point I realized there were no...

For all you Canadians - we're going to venture into Canada after we visit the Cleveland Clinic this summer. My daughters are very excited! We applied for our passports a few weeks ago. Do you have...

I was also a worried parent and watched her every breath for awhile but she didn't have any problems during her transition. She was more thrilled to be off the CTX because it caused her hair to be...

I'm not Jack but I can tell you that my daughter switched from CTX to Cellcept a year ago and had her first flare a few weeks ago. It was a slow process over the past year. She actually feels good...

Welcome Lauren - what a beautiful picture in your profile!!
You definitely had a worse case scenario with WG. I'm glad they finally diagnosed you before it was too late. How scary! My daughter...

Theresa - how are they treating Justin's hemosiderin-laden macrophages? My daughter had a bronchoscopy last week and the lab results are showing the same thing. I remembered your question from a...

[QUOTE=Daggar;38363]Sorry Phil... don't mean to "stomp" on your manhood .... Holly wants the "local" so she can watch it being done!!!

Daggar - your humor makes me LOL. Holly is one tough...

My daughter has 4 huge stretch marks across her back from her high doses of prednisone. They are about 6 inches long each and an inch wide and started out dark red. They look like huge claw marks on...

B- blood type for my daughter.

They come in packets like little alcohol pads and they're called adhesive removers. They're oily and smell like oranges. They work miracles. We got a box of them from the dr when we had to change...

Ouch!! Perfect time to ask for that raise after she's ripped your skin off!

My daughter wouldn't let any nurses or doctors take tape off her without the adhesive remover that comes in the...

I think caregivers have the same questions as WG patients. Why is this happening? What can I do to fix it? (That's a parent thing!) What does it mean when that hurts? How long should we let that...

Can you give me the site for the Parents of Weggies? I've tried finding it everywhere and my computer just doesn't see it. (Or maybe it's operator ignorance!!)

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...

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...

So happy to hear about Josh's transplant. Can't wait to hear his success story when it's all over! I need to have my daughter look him up on Facebook so she can chat with him while he's recovering....

Theresa,

My daughter is 15 yrs old and has been taking cellcept 1000mg AM and PM since June. So far she hasn't had any problems with it. She had 3 months of IV cytoxan in the hospital and we...

OK, I actually cried when I read this. Breaks my heart for Carter. Definitely write a letter with all the details and I'd even attach pictures and tell them how disappointed you are in the Disney...

Speaking of aspergillus - my daughter is being treated for it in her lungs. She had many chest tubes back in Dec/Jan because of holes in her lungs (start of our WG diagnosis) that allowed...

Palmyra, this made me laugh. How did an intelligent doctor sneak into our little hillbilly state? He must've made a wrong turn at St.Louis and went south instead of north! :wub:

Actually we...