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skin changes

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Hi Again

Ok, I have a ton of questions, I have been reading a lot of the older posts to try and gather info....my son, age 12, is going to the doctors next week for the swelling (I posted about heat issues). I know there are a lot of medications out there that are used, but wonder if anyone here has a child using any or if they started as a child on medications...so worried about the side effects etc..


Also, our son has 48xxyy, and right now has normal hormones, however most young men start to stale in puberty and have to go on hormones..wondering it this will affect the medications that they will be using to treat?


I was reading the posts on skin changes, is it true that the skin can get worse then better? Does this happen to everyone? Is there hope for him to stop this phase? His fingers and hands are really red and shiny, stiff, especially in the mornings; also same with the feet, they get bright red and stiff, he says they always feel tight.


He also says his belly itches, but he has a g-tube also, and it gets sore and itchy sometimes...we use cortisone cream and the itch goes away...


Thanks for listening as I try and sort through things and help make the right choices for him....


On a final note, they told us that increasing omega 3 would be worth a try? Anyone try this?



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Hi Kelly,


We have a number of members with children who have scleroderma and you've already met Margaret. Hopefully some of the others will see your post and chime in. We also have a great young lady, Emmi (Epasen), who is a real inspiration. Here is a link to her blog Living With Sclero.


Have you looked at the section on Juvenile Scleroderma on the main ISN website? That might help you with the list of questions for the doctors. I know you must have a million, I would.


There seems to be a 'natural history' in scleroderma where affected skin does soften after a period of time. I think most sources would say the first five years are the worst and then things can often improve. It's tough to wait when it is your child, though.


I hope your upcoming doctors' appointments are productive and they can come up with a really good treatment plan.


Best wishes,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Kelly


I know people with scleroderma who have had skin softening and indeed I have had areas of softening myself. It is possible but impossible to say whether it will happen in any particular case but hopefully any skin involvement your son may have will soften in time.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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