My great niece 8 years old..has SD!

[nhnancy]

We are just in the beginning stages of her diagnosis/treatment. She is in NH, yes 8 years old. Her Mom wanted some insight from me..we may have our DNA looked at! I think I will tell her of this board, after we have a/some person to person meetings. What books do you recommend? I told her to start a binder for test results so the docs have all up to date stuff . I mentioned AP, may go to her rheumy..imagine SD .in the same family! Maybe a genetic
link can be found!..will keep you all in the loop. She is Jazzy (Jazmyn). my nephews daughter. Her mom is Michelle. Pray that my experiences will help this baby out...her lungs, kidneys, heart seem to be fine. I will know more when I see her..
Nancy

[jeffn]

What are her symptoms? Are they thinking morphea or something else? That is awful. I was 55 when my SD went nuts and when I did the inevitable research and found out that young people get it I rationalized that at 55 I'd had a pretty good run if you will. What can you say about a child developing SD at such an early age. Sounds like her mom has a good handle on things and with your help and experience with SD that has to helpful for them. Her family won't feel quite so alone.

Mom might want to read Scammel's Scleroderma book. I think that is the only SD book I ever read all the rest of my info was from reading on the net. Info on the net, like books or any source of info for that matter, some of it is good and some is not so good and alarming as you know. Help them though this.

[nhnancy]

hi Jeff, as far as I know she had thickened areas on her legs,ankles, feet! Mom told me its starting on her back, her hands are puffy and curling, we will be getting together soon. As far as I know the local rheumy put her on Methotrx. She has appts (childrens in Boston). They told Mom its NOT the localized kind.

[jeffn]

I read somewhere recently that a hospital in Boston was using mino as a treatment for morphea (if that is what or part of what she has). Interestingly it was the dermatology dept not the rheumies because they think that the SD the skin thickening is a result of long term infection. I think it was Boston Children's. I know a doc there I'll try to find out if it is Boston Children's. I guess morphea is dealt with in the dermatology dept not by rhumies. Interesting

[nhnancy]

Hi Jeff, Thanks for replying ! I only know that with my SD, I got these red, raised blotchy areas all over my legs, they are not really red or raised anymore, more, they are dry brownish red areas now. They seem to be going away. The doctors didnt know what they were one said morphea, the others said it was from vericosaties (?)...So I elevated my legs as much as possible and used aveeno. Its the derma , in scleroderma...but we know. SSD, it what most of us have. ...thanks again,..this forum is like a ghost town, now...

[grammie]

Boy, that is a tough one!

[nhnancy]

Hi everyone. I just wanted to post an update on my niece. She went
into Boston yesterday. The doctors at Children's have decided to admit her
for five days next week . She will have an agressive course of pulsed steroids and methotrexate.
She has brown morphea all over, though she has been told its SS, they are unsure whether its a severe case of morphea, which is localized SD. I am sure they will run her through the gamit while she us there. Mom is going to stay with her. Her hands are curled somewhat and she has limited mobility in her ankles. She complains that her food gets/feels stuck sometimes. Here is a page with the treatment www.prsresource.com/treatments/Evaluation_of_methotrexate_Nov2006[1].pdf

I have spent a lot of time with them, taking them out to suppers, the zoo in York Beach and bought them some school things, so that the parents can take her to PT 3-4 times a week, in a heated pool. They said the warm water will be beneficial to her joints.

I am sure they will do so e next week, too!
I hope everyone is enjoying the summer, and your lives to a fault! ;D
love,
Nancy

[jeffn]

Hope it all goes for your niece. From what I hear they are pretty sharp over there at Children's. All the best - please keep us posted.