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Morphea In Children

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#1 Carolynv


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Posted 15 March 2007 - 03:33 PM

Hi all! This is my first post.... my beautiful little 4yr old son has recently been diagnosed with morphea. Seems to be a mixture of one large oval shaped plaque (which he has had for 2 years, but was misdiagnosed!) and now at least 20 irregular shaped dark brown patches spreading from behind his ear, under his jawline up to his eye. It is rapidly taking over the left side of his face and I am not happy to just apply Diprosone as each new patch appears. Has anyone had a young child on the methotrexate, or any other treatment that has worked?? I have read the side effects and they sound horrible, but does anyone know if the side effects are common? The fact that it is on his face is of great concern, as I don't want it to keep getting worse and for him to have self-esteem issues because of it. Maybe putting up with side effects for a while is better than a lifetime of teasing! If there's anyone in a similar situation, I would love to hear from you. There doesn't seem to be alot of info on it in Australia. Thank you so much! Carolyn

#2 Jordan's Mommy

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Posted 15 March 2007 - 07:15 PM

Hi Carolyn,

My 6 year old daughter had brownish speckled spots appear on her left shoulder a few months before her 5th birthday. I thought it was from the sun, and let it go for a few months. On her 5th birthday, the discoloration turned to a bruised appearance and shot all the way down the left side of her arm and into 2 of her fingers. Her pediatrician referred us to a dermatologist (after taking x-rays, doing an ultrasound, etc), but he thought it was a late onset birthmark. That didn't sit well with me, and I asked for a second opinion. The 2nd dermatologist. suggested morphea/linear scleroderma, and gave me the name of a board certified pediatric dermatologist (there are only about 100 or so of them in the U.S.), but my insurance refused to cover the visit--instead referring me out to two other doctors, including a rheumatologist at a very well known children's hospital a mile from my home. I paid for the visit to the ped. dermatologist myself, and he confirmed the diagnosis, as did the rheumatologist. Somewhat jointly, they agreed on a low dose of prednisone (which just made my daughter giddy and hungry) and Plaquenil to control the spread and slow down my daughter's immune system. I was terrified of the side effects of Plaquenil, but other than a little hair thinning, she has done great with it, and her morphea/scleroderma has not spread at all. All of her labs/bloodwork, pfts have been normal. She has been off the prednisone for about a year now, and just stopped taking naproxen to control inflammation, which was only a minor issue for her.
Anyway, her rheumatologist wanted to begin with methotrexate, but after I read the literature, I just couldn't do it. I know it seems to be the preferred choice among doctors, but I really think her case is mild. Forbid it that her disease spreads, as then I will have to re-evaluate methotrexate. My daughter's rheumatologist swears that they have many, many children on it, and that the dosing is about 1/10 of what they give cancer patients. There is another memeber on this site whose daughter has been on methotrexate for a while with no side effects, too. You can also email Dr. Thomas Lehman, a pediatric scleroderma specialist in New York, and he will briefly answers your questions about methotrexate. His public email is [email protected] I am so sorry that your son has this illness, but I hope that you have caught it in time to prevent any more spreading.



#3 Sweet


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Posted 16 March 2007 - 05:51 AM

Hi Carolyn,

Welcome to the Sclero Forums, but I'm sure sorry it's due to your son being ill. You will find a lot of really good information here, a group of great people to help you through this and a lot of answers I hope. I want to give you a link to review on morphea and treatment in the event you haven't read it yet.

We look forward to hearing more from you.

Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 Carolynv


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Posted 18 March 2007 - 01:16 AM

Thank you so much for your replies. It's wonderful to receive support from people who are struggling themselves with the various forms of this disease. I will be asking the dermatologist about the other medications your daughter has tried, Jennifer. Like you, putting my son on methotrexate scares the life out of me.

I feel like I have to push my dermatologist to do more as the morphea is spreading every week... but he seems reluctant to try anything other than the steroid creams. Am I right in thinking the earlier we aggressively treat this, the more chance there is of stopping or at least slowing it down??? I don't want to put my son at risk, but I'm also trying to think of how this will affect him when he's old enough to realise that his face is a bit different to the other kids. Kids can be cruel to someone who looks that little bit different......

Thanks again for the support!