Newly Diagnosed Daughter

Hi! We too are newly diagnosed and I just posted in the Juvenile Scleroderma section (mostly because there wasn't ANY discussion there at all yet).
http://www.inspire.com/groups/scleroderma-foundation/discussion/newly-diagn osed-morphea-linear-scleroderma/

My daughter is 10 but she had her first symptoms of the rash at 7.
Im still confused as what having this means for our situation and how much of her current JRA is really Scleroderma or what to expect from here.
-Jyn

*Edited to Add: After digging a little further, her symptoms look very much like Linear atrophoderma of Moulin. I certainly have a million questions for her Ped. Dermatologist at OHSU in a few weeks.

Edited June 15, 2009 at 11:41 pm

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My friend Cheryl has a 19 year old daughter who was diagnosed with Scleroderma at age 17. She is now in remission. If you want to contact her, send me an e-mail at cubbymikey@aol.com. Put Scleroderma in the heading so it does not go to spam.

Also, another lady on here under MARIASMOM has a 14 year old who has it. Go to members and u will find her.

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I am new to the site too. My daughter Cassandra was diagnosed 18 months ago with Systemic Scleroderma. It took months and multiple doctors to get to the correct diagnoses. She had lost most of her range of motion in all of her joints except shoulders and hips. We were thankful that it started at her lower extremities and worked its way up. Originally she had been placed on 60 mg Predisone which only caused pain and the terrible steroid side effects. A new young doctor at her regular pediatricians office got us down the road that eventually got her weaned off the steroids and on methotraxate. She has been steadily improving and we are hopeful that it is retreating into remission. Please feel free to contact us. My email is laurenmaniak@hotmail.com. ♥

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Oh, I hated Prednisone... Abbie was on that when she was almost 2 and she acted like she was possessed...
The Methotrexate did very little for her... but Enbrel was wonderful.

We're starting her back on Enbrel this week and I just made an appointment with a pediatric dermatologist at OHSU (Oregon Health Science University) for the end of this month to get my questions the size of Niagra Falls answered. :)

Really have no idea where things are going to go from here, but knowing is half the battle, right?
-Jyn

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MY DAUGHTER WAS 23 WHEN WE FOUND OUT.IM SO SORRY TO HEAR THAT YOUR DAUGHTER HAS THIS TO,SHE IS SO YOUNG.FOR US EVERY DAY WAS A LEARNING EXPERIANCE FOR US.MAKE SURE YOU HAVE A GOOD DOCTOR FOR HER,WE WENT THROUGH SO MANY.GOOD LUCK AND YALL OUR IN OUR PRAYERS.

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