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Limited Scleroderma in 13 year old son


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#1 mis3hijos

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Posted 05 December 2012 - 12:17 PM

My son was diagnosed with limited/linear scleroderma on Oct. 2012. He has finished 7 weeks of prednisone/methotrexate infusions and has 5 more to go. He is scheduled to continue with weekly methotrexate injections for a year. Needless to say, we have been overwhelmed with questions and looking for any possible option that will help him. His Sclerodema is also named en coupe de cabre. It is affecting the right side of his face and a lesion on the top of his skull. He has shown improvement with the 7 infusions thus far. I am concerned about long term side effects of methotrexate for a year.

Questions: 1) Are there other therapies I should look into? He is bothered by the lesions (they are very slight and most people do not know about them unless I tell them).

2) Will he continue to have flare up throughout his life and will they become worse? (He has Raynaud's, cold hands and feet) Does not have any joint pain.)

Thank You,

#2 Joelf

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Posted 05 December 2012 - 02:35 PM

Hi Mis3hijos,

Welcome to these forums!

I'm sorry to hear that your son has been diagnosed with linear and en coup de sabre Scleroderma.

To help answer to your questions, I've included a link to our medical page on LinearTreatments which I hope will give you some more information. We also have a thread on En Coup De Sabre which I hope you'll find interesting.

I'm afraid I have no actual medical training but it is possible that your son could have flareups throughout his life; it is, however, difficult to speculate, as this complex disease does affect everyone differently which is why we do recommend that if possible our members consult a Scleroderma expert.

I hope that now you've found our forums you will continue to post and let us know how your son is faring.

Kind regards,

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#3 Shelley Ensz

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Posted 05 December 2012 - 03:10 PM

Hello,

Welcome to Sclero Forums! I'm sorry your son has en coup de sabre and send my best wishes to all of you. The best possible thing would be to be discussing all your treatment options with a listed juvenile scleroderma expert. The difficulty with that, though, is that they are very few and far between. However, if you don't have one already it could be worthwhile to review the lists and possibilities.

In our ISN Guide to Scleroderma Experts, which is still under development, we list scleroderma experts and indicate whether or not they treat children, and which forms of scleroderma they treat.

We also have a section on our main site for En Coup de Sabre Treatments. Unfortunately, en coup tends to be more progressive than other forms of localized scleroderma and can sometimes include complications such as brain or central nervous system (CNS) involvement, which makes it so important to have a specialist on his team who is aware of such things. You don't want to worry about such things happening, of course, but you want to be aware enough to make the connection if he ever does develop issues like that.

You'll see there some case reports on phototherapy treatment. There is more on that in the Morphea Treatments page. UVA1 Phototherapy is being found effective on a very wide range of autoimmune and fibrosing diseases but you would want to discuss particulars with a juvenile scleroderma expert to see if it is appropriate in your son's case.

You may also want to read about disproven treatments so that you can sort out good advice from bad, as it is very easy for us to encounter poor medical advice for rare diseases such as scleroderma on the internet, and we focus our discussions only on reliable and proven approaches or clinical trials.

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Shelley Ensz
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#4 D. James Butler

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Posted 17 October 2013 - 08:42 AM

I am sorry to hear about your son.  I was also given this diagnosis when I was 13 years-old.  I am now 41 years-old.  I can share my experiences and history if you are interested.  I have some disfigurement as a result of the disease and some medical problems now that I believe may be related to Scleroderma.  I remember that time in my life like it was yesterday.  I was a scared kid that knew something was wrong and the physicians caring for me did not seem to have much knowledge related to the disease.  I would be happy to answer any questions that you might have; please PM me.

.Kind Regards,

D. James Butler 



#5 Shelley Ensz

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Posted 18 October 2013 - 09:33 AM

Hi James,

 

Welcome to Sclero Forums, and thank you for reaching out to Mis3hijos.  Please stick around here like glue, because the voice of experience simply can't be beat for both the patients and the parents for juvenile scleroderma.

 

Do you happen to see any of your present symptoms listed in our section on localized scleroderma or linear scleroderma?  Way back when you were first diagnosed, I believe they hadn't yet recognized any of the non-skin manifestations of the illness(es).

 

:emoticons-group-hug:


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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 Amanda Thorpe

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Posted 21 October 2013 - 12:45 PM

Hello Mis3hijos

 

Welcome to the forums although I am sorry it's because your son is so ill. Scleroderma is a horrible disease for sure, even the localised forms which don't affect internal organs or life expectancy can be life changing. I hope you find the support and help you need here.

 

Take care


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#7 Amanda Thorpe

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Posted 21 October 2013 - 12:47 PM

Hello James

 

Welcome to the forums and I echo Shelley's request that you hang around for awhile as your knowledge and experience is particularly helpful being as it's so rare.

 

Take care and keep posting.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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