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Just SO many questions!

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#1 lcdavison



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Posted 12 October 2010 - 06:47 AM

My 13-year old son was just diagnosed with scleroderma. As of now, he just has manifestations on his skin - his arms are tight, as well as a portion of his legs, and the tight, hard skin has affected the movement in his hands. He has some arthritis in the hands and we're doing physical therapy for that. It actually seems to be loosening up some. His doctor has prescribed Prednisone (down to 5mg/day) and Methotrexate (.6cc once a week). They both seem to be helping, too; but, they are not anything I want him taking long-term. So far, no internal organ involvement is suspected. He has no pain, no Raynaud's, no GI problems...nothing but the stiffness. Anyone else like this?

#2 Jeannie McClelland

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Posted 12 October 2010 - 07:53 AM

Hi LC,

Welcome to the Forum. What a shame about your son, I'm really sorry he has scleroderma. It must be hard for you and the rest of your family. We have a good section on Juvenile Scleroderma that you might want to read to maybe answer some of many questions a new diagnosis brings. We have several parents of children with scleroderma and hopefully some of them will see your post and chime in.

I hope you continue to see improvement in your son's skin involvement and he does well. Keep posting and let us know how he and you are getting on.

Best wishes,
Jeannie McClelland
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#3 Amanda Thorpe

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Posted 12 October 2010 - 10:56 AM

Hello LC

Welcome to the forum although I am sorry it's because of your son's diagnosis.

I'm on methotrexate 15mg once a week and have tolerated it very well so far. As there is no cure for scleroderma the next best thing is to treat symptoms as they come along, if they come along.

It's great that your son only has skin involvement and he may never have more than that. For some people scleroderma never becomes anything more than an annoyance making little impact on their lives.

Take care and keep posting.
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#4 debonair susie

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Posted 12 October 2010 - 11:52 AM

Hi lc, as with Jeannie and Amanda, it's difficult enough when we see new members coming on...who are adults. Yet, when a child is diagnosed as your son has been, we so hope that a cure comes to be...sooner than ever. However, for now, there are treatments that are very good.

I know of PUVA treatment, as I was once getting that...only for my Psoriasis.
I have heard great things about PUVA treatments.

Like Amanda, I also was treated with Methotrexate, which was also for my Psoriasis treatment. However, I have no knowlege as to the longevity of treatment with/for a child of his age. I was screened via lab (blood) draws more often at the onset of treatment, than the latter (years:13, to be exact).
My hope is that treatments can be discovered that are less wearing...on all of our bodies.

I,too, encourage you to post often to let us know how your son is doing, as well as with his treatment.
I also want to welcome you and am very glad you posted!

Soft Hugs for you and your son.
Special Hugs,

Susie Kraft
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#5 Margaret


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Posted 12 October 2010 - 02:16 PM

Hi LC ,

Welcome to the forums. I am Mom to a son who was diagnosed at age 18 (now 22 years old) with sine Scleroderma, and later, switched to UCTD. Unlike your son, my kid had all internal involvement and no skin issues. His started with the esophageal dismotility, restrictive lung issues, loss of vocal cords, 20 lb. weight loss, and positive blood work, etc. It wasn't until last winter that he showed signs of Raynaud's and SICCA (dry eyes and dry mouth). He was started on Plaquenil nine months after the initial diagnosis and, within 3 months, his esophagus was working, voice was back, breathing was normal, and he was doing okay. My son also got something called autoimmune induced depression, so please, watch out for that. The same autoimmune problems attacking the body can also affect the brain chemicals.

This is a fantastic group of people who held my hand and walked with me through the first year of his diagnosis. If you even have any questions, they are the ones to ask.

Take care, Everyone.

#6 Shelley Ensz

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Posted 12 October 2010 - 03:21 PM

Hello LC,

I also want to welcome you to Sclero Forums. I'm sorry your son has scleroderma. The single most important thing you can do for him is to get him in to see a listed scleroderma expert, before any additional problems are encountered. Scleroderma is a rare disease, the systemic variety is uncommon in children and when it does occur, it is essential to get the very best care. Most local rheumatologists only encounter one case in a lifetime. Thus they are prone to treat it like any other rheumatic disease, but scleroderma is very unique and for example, prednisone can sometimes worsen the illness and in general they say to avoid it in more than 10mg for longer than 2 weeks, because of this. (See Prednisone Warnings for Scleroderma.) Thankfully, your son is on a lower dose now.

Please see what you can do to get your son in to a juvenile scleroderma expert. They are very few and far between, difficult to find, and it can sometimes take months on end to get in for a first appointment.
Warm Hugs,

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

#7 Joelf


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Posted 13 October 2010 - 04:40 AM

Hello LC

A warm welcome to this helpful and friendly forum; :bye: I'm very sorry to hear that your son has Scleroderma.

The physical therapy and low dose of Prednisolone should be able to help with the stiffness in his hands. I have been taking Prednisolone and Azathioprine (which is also an immune suppressant like Methotrexate) so I am on a similar medication to your son. I found that the combination of those drugs helped with the stiffness and pain in my joints (I also have lung involvement and Raynaud's) so hopefully your son will soon feel a lot better.

I look forward to reading your posts and hearing how your son is faring. :)
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#8 lcdavison



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Posted 14 October 2010 - 03:43 PM

I am so grateful to hear from all of you. I have started a journal of what my son is dealing with as his doctor seems to think he's a somewhat unique case. Hopefully, my little man will be okay and his experience can help others. We will keep you all posted. Thanks again!