Morphea In Children
Posted 15 March 2007 - 03:33 PM
Posted 15 March 2007 - 07:15 PM
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.
Posted 16 March 2007 - 05:51 AM
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.
Posted 18 March 2007 - 01:16 AM
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!