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I'm a mother with a 3 year old son that has scleroderma in the Philippines.


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#1 renvy xzaic

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Posted 27 July 2016 - 02:25 PM

Hello, I'm new here.

 

My 3 year old son has been diagnosed with scleroderma, but we still don't know what type of scleroderma it is.

 

Please help me how to treat my son well, because for now he doesn't take any medicine.

 

We are from the Philippines.



#2 Joelf

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Posted 28 July 2016 - 08:52 AM

Hi Renvy Xzaic,

 

Welcome to these forums!

 

I'm sorry that your three year old son has been diagnosed with scleroderma, which must be very worrying for you.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, but I'm afraid that we do not have details of any specialists in the Philipines. However, it would be beneficial for you to try and see the very best rheumatologist you can find, especially one that specialises in Juvenile Scleroderma to give your son the best treatment possible. This may necessitate you having to travel to find a suitable doctor.

 

Kind regards,


Jo Frowde
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#3 renvy xzaic

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Posted 28 July 2016 - 07:05 PM

Thank you for the fast reply.

 

We have done the skin biopsy already but we don't still get the result as we don't have enough money. We are poor only and we can't provide the mostly need of our son.

 

I'm just worrying because sometimes my son said that his knee is aching. How can I help him? Does he have a right food diet so his scleroderma won't get worse? Does it give a chance to be back in normal? Because I'm afraid that it will last until he gets old.

 

Please help me to treat him well.

 

Thank you



#4 Joelf

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Posted 29 July 2016 - 03:31 AM

Hi Renvy Xzaic,

 

I can understand your concern over your son's symptoms, as scleroderma can cause pain in the joints. Unfortunately, I think the only way you can obtain treatment for your son is to try and find a good rheumatologist to advise you, as per my previous post. At present there is no cure for scleroderma so any treatment tends to be focused on treating the specific symptoms, as they manifest themselves.

 

We do have a medical page on Diet and Systemic Scleroderma, which I hope you'll find helpful and informative.

 

Kind regards,


Jo Frowde
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#5 Shelley Ensz

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Posted 29 July 2016 - 07:27 AM

Hi Renvy,

 

Welcome to Sclero forums.  I'm sorry your son has scleroderma and send my best wishes to you.

 

As it happens, when children are affected by scleroderma, it is usually the localized form, such as morphea or linear scleroderma. These types usually affect only the skin (and not the internal organs, like the systemic type of scleroderma can.)

 

There are no dietary treatments for scleroderma. Morphea is now considered to be very treatable, and UVA1 phototherapy is now usually the recommended first line of treatment.  See our resources on Morphea Scleroderma.  Often, morphea spots will fade on their own in three to five years, even without any treatment. However, when the lesions are over a joint, they can impair the growth of the limb, so it is important to get treatment.

 

UVA1 is a concentrated form of light. It is a lot like a suntanning booth, and the equipment is often found in large dermatology offices.

 

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Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#6 renvy xzaic

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Posted 29 July 2016 - 03:47 PM

Thank you, Miss Joelf. Okay I will read the diet and systematic scleroderma. I hope I can find some food diets.

#7 renvy xzaic

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Posted 29 July 2016 - 03:50 PM

Hello Miss Shelley Ensz,

Thank you for the information. It is such a relief that I know that it will fade. Right now the skin of my son is starting to soften. I feed him vegetables only and drink a lot of milk.

#8 Shelley Ensz

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Posted 29 July 2016 - 03:52 PM

Hi Renvy,

 

Please note that the resources that Jo pointed out to you are for systemic scleroderma and diet. There are no diet recommendations for morphea (or, the localized forms of scleroderma which include morphea, linear and en coup de sabre).

 

We strongly suggest that you consult a dermatologist, because morphea is quite treatable, particularly with phototherapy (which is like a sun tanning booth).

 

There's no food that will make a difference for morphea, other than the usual well-balanced diet that doesn't eliminate any major food groups (for good health in general) or whatever his doctor recommends in his particular situation.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#9 renvy xzaic

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Posted 29 July 2016 - 03:52 PM

On March 2016 the whole skin of his body is thickening, but thank goodness, it is starting to soften.



#10 Shelley Ensz

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Posted 29 July 2016 - 04:05 PM

Renvy, this is difficult, because of course, we are not doctors and cannot diagnose or, certainly, treat anything simply via the internet. It is very important to consult a doctor who can tell you exactly what type of scleroderma your son has. It is most likely morphea, simply because that is most common in children, but it is worrisome that you say the skin over his whole body was thickening, which would more likely be systemic.

 

We do not recommend any severe diet restrictions (such as eating only vegetables) for anyone with scleroderma, and particularly not for a young, growing child, because regardless of type of scleroderma, he will need a full selection of nutrients for his immune system to function properly.  I hope that you can find some medical advice and follow it.  Even if you can only find a local rheumatologist to help, or find the biopsy results, that would be a step forward.

 

You may be able to figure out what type he most likely has, and thus what doctor to see, by looking at the videos on our main site about the various types of scleroderma. For example, morphea occurs in colored spots; linear causes an indented line of skin; and with systemic there is no color change, but simply a hardening that occurs on both sides of the body at once, usually starting in the fingertips and going upwards from there.

 

If he has colored spots of hardened skin, then it is likely morphea; and that is the kind that UVA1 phototherapy is particularly good to treat.  See Scleroderma Videos now.

 

Please remember, we are not doctors. This information is only to help you find the best local doctor to help care for your son.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#11 renvy xzaic

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Posted 02 August 2016 - 05:02 AM

Hello again,

Thank you Ms Shelley. Okay, I will visit scleroderma videos.

We will see dermatologist and rheumatologist for my son, if we have enough money..

Thank you for the more information about the foods..

#12 Shelley Ensz

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Posted 02 August 2016 - 10:47 AM

Hi Renvy,

 

Thanks for your post. Have you had a chance to look at the scleroderma videos yet?

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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