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Osteopathic therapeutics fo scleroderma?


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#1 BlueSkies

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Posted 04 April 2009 - 02:35 PM

Hi,

I’m from Portugal and I’m new in the forum. One month ago I was faced with a diagnosis of Linear Scleroderma (localised at the left leg) for my 6 year-old son.

Since then I’m trying to collect the maximum information possible and I can say that I’ve learned a lot with this great forum.

By the way, my son has been assisted since the beginning by a very competent doctor in pediatrics , who in conjunction with all the other medical specialists, has decided the best therapy for my litte boy is systemic treatment with methotrexate, cyclosporin and some corticosteroids.

My big concern is with the possible side effects caused by those medicines in a 6 year old child.

With this concern in mind, I was advised to go to an Osteopath and I want to know if any one had tried any kind of Osteopathic therapy and what was the results.

Thanks to all of you that anonymously are helping us facing our son disease, by posting in this forum!

Filipe

#2 Jeannie McClelland

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Posted 04 April 2009 - 03:48 PM

Hi Filipe,

I am very sorry that your son and family are facing this illness. I would like to welcome you on behalf of everyone. I hope we can give you information, emotional support and friendship.

Did you know we have a Portuguese version of the website? We also have a list of EUSTAR - European Scleroderma Treatment and Research Affiliated Centers and if you scroll down the page, you will find the centers in Portugal.

I have never tried osteopathic therapies myself but an internist who is a D.O. (doctor of osteopathy) might be able to offer some additional advice on you son's treatment. They are fully licensed medical doctors in the USA, but have additional training in how to also use more natural healing modalities.

I wish your son all the best,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
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International Scleroderma Network

#3 Snowbird

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Posted 05 April 2009 - 10:40 AM

Hi BlueSkies

I'm sorry to hear about your sons diagnosis and I'm sure you'll stay on top of things. You're right -- you've come to the right place for information here. It sounds like he is receiving great care from his doctor which is good news. Sorry I can't help as I don't have any knowledge on Osteopath care -- just wanted to say welcome to you and your family as well.
Sending good wishes your way!

#4 Shelley Ensz

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Posted 06 April 2009 - 03:11 AM

Dear Filipe,

I'm very sorry your son has linear scleroderma. It is extremely important to consult and follow a scleroderma expert's advice for his proper care, since linear scleroderma can cause lifelong disfigurement and disability, and it is much easier to prevent it's worsening than to heal any damage that has accrued.

I think the whole world of osteopaths, in fact, I seek my primary care from osteopathic Internists. They have full "regular" medical school training plus additional schooling in natural therapies. Thus, sometimes my doctor is able to advise me on natural therapies that might be just as effective as mainstream therapies. And some osteopaths routinely do osteopathic manipulations. But, although as a general group they are wonderful, osteopaths are not miracle workers and they do not possess any secret cures for any forms of scleroderma, either localized or systemic.

An osteopath could be added to your son's medical team as an adjunct, similar to physical therapy, which is very often helpful (and sometimes a necessity) for linear scleroderma. However, this would *not* under any circumstances replace his medication therapy. An osteopath might also be helpful in recommending ways to make his medication routine more bearable, such as ideas for dealing with nausea, fatigue or other side effects of the medication.

I know it is difficult to bear up under the treatments your son needs right now, but it is very important to do your utmost to prevent worsening of his condition, and it sounds like you are following the latest and best recommendations for treating his illness. Please give him and yourself an extra hug, just from me.
Warm Hugs,

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

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