A definition of Juvenile Scleroderma in simple, easy to understand language
 

My Child's Skin Won't Heal
Written by Thomas J.A. Lehman, M.D.
Chief, Pediatric Rheumatologist
New York, NY
2003

Thickened skin which heals poorly and often becomes painfully sore and ulcerated is a common problem for children with both localized and systemic scleroderma. Skin sores may not be as serious as internal organ involvement, but as a day-to-day problem that limits a child’s quality of life they are a major issue. Often the painful skin lesions are the most important complaint families have when they first come to my office with a diagnosis of scleroderma. Fortunately there are many things we can do to make the skin lesions better.

Of course the most important thing is to make the scleroderma itself better. In my hands methotrexate injections are usually very successful at causing the skin to soften and the lesions to heal. However, this is a slow process and healing of all the skin sores often requires several months of treatment. What are we going to do in the mean time???

Definite answers are surprisingly hard to come by. However, there are a large number of “old wives’ tales” and tricks of the trade which help. The first and most important thing is to keep any area of skin breakdown clean and free of infection. Bactroban (2% topical mupirocin) is often very helpful in preventing and treating minor skin infections. If the lesion is mostly closed and doesn’t look infected ordinary A & D ointment which is used for diaper rash can also be very helpful. In a large study of skin ulcers caused by other conditions (this test wasn’t done on children with scleroderma) A & D ointment turned out to be far more effective than a new drug that was being developed.

Some children have small ulcers over the elbows, knees, or ankles that just seem to be hurting all the time. Often these keep getting ‘bumped’ and cause so much pain that the children just don’t want to do anything. Topical anesthetic creams such as EMLA and ELA MAX make the skin numb. They only work for an hour or so, but they can be a big help if the pain is really bothersome.

Many longer term agents have been used to soften the skin. A few doctors recommend topical steroids, but most avoid them. Topical steroids will lead to softening, but long term use damages the skin and causes more problems later on. Newer anti-inflammatory agents such as tacrolimus topical (Protopic) may be safer, but there isn’t a lot of experience with their use for children with scleroderma yet. Many of my families swear by cocoa butter and/or vitamin E oil. No definite proof that it works, but it seems to.

Ultraviolet light has been effective in the hands of some investigators, but may be associated with further skin damage if used too often. Another interesting agent is calcipotrene topical (Dovonex). This is a vitamin D cream used to treat psoriasis. It may cause local irritation and it’s very expensive, but it seems to work. Again excessive use of this cream can damage the skin.

In my practice I concentrate on the basics. The most important thing is to control the scleroderma and soften all of the skin. Most often full dose methotrexate will do that over a period of three to six months. During the time I’m waiting for the methotrexate to provide relief I like to use the safest agents I can. Bactroban will control most minor skin infections (oral antibiotics are necessary for any serious infection). A&D ointment, cocoa butter and vitamin E oil seem to help with local softening. I use the topical anesthetic creams for brief relief of small sores that ‘really really hurt.’ Children who do not respond to these agents need to be managed in conjunction with an expert dermatologist. I’ve also found it useful to work with the specialists in burn care and wound healing. They often have good ideas that help for the sores due to scleroderma as well.

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.


For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
24 Hour Support Line: 1-866-338-5892 (toll-free)

Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

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