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I'm glad she got in. Do you know if they will let you be there? Or do you plan on going in the evenings? Grace was young so I had to be near (actually I would have been anyway).

Grace also went to an impatient rehab. She actually ended up in a wheelchair and bedridden for months. I get the tired feeling, Kim. I was there also. But the pain program was the best and its now the same doc that heads her team. He is the one the dx EDS. They sadly see allot of patients...

I have to share a funny! Grace and I were in Wal-Mart. We were passing thru the aisle that had the laxatives:rolleyes: An older couple was arguing over which stool softness the husband had used last. So Grace:yfaint: Takes it upon herself to walk over and told the man about a wonderful...

Lol. If you could guarantee a picture. I go all out and give you the tierra that Grace got from Cinderella's castle. It'll go viral .:ylol:

Lol, lol, lol I have an IV pole at home. Would your son like it? It has cut out of a paper castle at top and princess stickers stuck over the pole. I'm sure i can find the fake ivy that used to wind around it. It'll cute in his dorm.:ylol: Good grief. How did the poor nurse think this...

I'm so sorry to hear the updated. I hope you get answers soon!

Sorry to hear this Kim. Hopefully they can ease her pain. Grace just started pain management again. Hold on there. Your all in my prayers.

Migraines That's what she's dx with now. So now we add more meds and a specialist.

Thanks Maya, I figure that's the next step tomorrow.

I brought this thread back because Grace had an mri of her neck and TMJ joints. Her docs were wondering if her arthritis was causing the now migraines or maybe her EdS or probably both. Her results came back and her rheumatologist will call tomorrow to discuss it. They do feel its not jia...

Same here. Not to give if fever was over an 100.0. I hope he feels better soon.

My girl has had her gtube for 5 years. It's been so long ago I barley remember her surgery. It's been great for her. Maya basically said it all (thank you:D ) Be prepared for messes at first. It happens and it's best to have a sense of humor because you'll go nuts with the cleaning bill...

Hi and welcome. I'm so sorry to hear about your child. It's so hard in the beginning. My Grace was dx at 3 but is 8 now. Remicade had been the closest drug that gave my child any quality of life. My child has ibd and juvenile arthritis. When she was dx the gi said his main goal was to keep...

Kim, she's been on allergy meds for years. Zertec woresults best for Grace but over the years we've tried different ones. Thanks

Their is a plan b but we've seen great progress with Remicade. I believe she was almost in remission before the insurance withheld it for 3 months.:ymad: I'd assume a neuro is in her future. Her Pain Doc is the head of a large pediatric rehabilitation center and is quite controlling and...

Her jia has never controlled. No neurologist yet. No did said shying yet about going to one Her pain doc is the one dealing with the med side of things. This is just do new for her and sudden. Edit: Never type a message in the wee hours of the morning when your half awake. Lol

:dance:Rheumatologist approved the mri for the jaw also. Maybe they've learned to just give me what I want and I'll go away. :rof: Just kidding, her rheumatologist is amazing. :) We're waiting for her pain doc to call back. I want to stop her Topamax because it's not helping much with her...

Grace also had hers checked every four weeks. That's just crazy they won't cover it.

Thanks Maya They tried everything on my jaw before the big surgery but nothing helped until they realigned it. I had 8 minor surgeries before hand. Now it's much better. I hope it goes well for your girl. I contacted her rheumatologist about this issue. Waiting to hear back. Since there are...

Awesome!