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Diffuse Systemic Scleroderma In Children


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#1 coxsg1

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Posted 15 November 2009 - 10:42 AM

Within the last 3 months my Grandaughter (who is 6 years old ) has been diagnosed with diffused systemic scleroderma.

If there is anyone out there that can share their experiences with Diet and do's and don'ts, I would greatly appreciate the info.

She has just started her Meds within the last week.

#2 Jeannie McClelland

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Posted 15 November 2009 - 12:12 PM

Welcome to the Forum. I'm very sorry your grandaughter has been diagnosed with scleroderma. It must be very hard for you and your family. I hope we can help you good information and support. I know we have at least two mothers of children with autoimmune diseases on the Forum and hopefully one of them will respond to your post.

When a child is diagnosed with scleroderma, no matter what kind, it's called Childhood or Juvenile Scleroderma (clicking on the link will take you to the relevant section). And here's the link to Diet which gives a lot of tips.

I don't have any experience with a child with scleroderma, but I would think it might be helpful to talk to a psychologist or socialogist who could give you suggestions on how to make your granddaughter's life as normal as possible and how to help her deal with the emotional side of her illness.

I wish you and her the best of luck,


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#3 Amanda Thorpe

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Posted 15 November 2009 - 12:13 PM

Hello Coxsg1

Welcome to the forum although I am really sorry it's because your young granddaughter has diffuse systemic sclerosis. It's hard enough getting a scleroderma diagnosis as an adult, I can't imagine how hard ot must be for a child (and the parents/grandparents) to be given such a diagnosis.

There is no specific diet to follow with scleroderma ans I have taken the following extract from our diet & scleroderma page:

Systemic scleroderma patients should always consult their doctor(s), especially their rheumatologist, before using any vitamin or herbal remedies or making any significant changes in their diet.

In general, most doctors recommend that scleroderma patients follow a normal, well-balanced diet , without the addition of any herbs, vitamins, or minerals. Do not cut out any food groups from your diet, nor go on any "cleansing" diets, since this may accelerate the disease process


It seems following normal, balanced diet is going to be best for your granddaughter.

I hope this helps and take care.
Amanda Thorpe
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#4 Margaret

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Posted 16 November 2009 - 01:34 AM

Hi ,

I have a son who was diagnosed at 18 years old with UCTD. He's doing well on Plquenil and we haven't considered any diet changes since his esophagus/swollowing isn't bothering him anymore. Six years old is so young.....I hope the meds work well for her.

Take care, Everyone.
Margaret

#5 Shelley Ensz

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Posted 16 November 2009 - 04:16 AM

Hi Coxsg1,

Welcome to Sclero Forums! I'm sorry your granddaughter has scleroderma and send my best wishes to all of you.

As it happens, the most important thing of all is to make sure that she is seeing a top juvenile scleroderma expert, for the most accurate diagnosis and treatment. Diffuse scleroderma is the worst form of scleroderma, and very unusual in children; much more commonly they have what is called localized scleroderma (morphea or linear) which typically affects the skin only, and not the internal organs. See Types of Scleroderma. I just mention that because sometimes the exact type of scleroderma is misdiagnosed by non-experts in the field, and the experts are few and far between. But it makes an enormous difference as to her prognosis and treatment.

Is she being seen at a scleroderma expert center yet (I hope)?
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.