I wonder if anyone in this discussion forum has a teenage boy with JDM.

Thouh my son is very good about taking his medication and monthly infusions, he is somewhat in denial about there being anything terribly wrong.

Luckily we were able to have him diagnosed relatively early and he has regained his strength in a short period of time. His skin is still pretty awful and he now has acne from the prednisone.

I can imagine your terror as you are going through this. i will try to help a little.

Has Steph been diagnosed with JDM?
Where do you live? Is there a good teaching hospital nearby?
Have you consulted a Pediatric Rheumatologist?

Steph's numbers do seem very high, but that is probably because she has gone for so long without a dignosis and treatment. It is extremely important to be with a doctor who is familiar with this disease. Many will not recognize the symptoms or know which markers to test for in a blood test. It is essential to be with a rheumatologist and i believe a pediatric rheumatologist at that. Dhildren experience this disease differently than adults.

When m son was admitted to the hospital n MRI was performed to confirm the diagnosis and to determine the extent of the damage. It is a painless procedure and replaces painful muscle biopsies, etc.

Different physicians treat this disease in somewhat different ways. Statistically, the most effective treatment seems to be what is called an aggressive treatment.

For example: 2 or 3 days on IV in the hospital for a combination of prednisone and gamma globuline (and perhaps methotrexate?.)

After the Hospital, oral prednisone, 6 days folic acid and 1 day methotrexate.

Monthly Gamma Globulin IVIG. Because Gamma Globuline is so expensive, many physicians do not use it. However, if you have health insurance coverage, this is no longer considered experimental with this disease and many plans do cover it. The doctor has to call the insurance carrier.

There is a reat deal of information on the internet about the disease, but before I go further in recommending any, it would be helpful to hear from you with more details and answers to the questions I have asked.

Ralph Becker, who mnanages this board, has written a beautifl and informative diary of his daughter's journey through dermatomyositis called, "Julia's Diary". You can download it.

Another site for you to look at is the Myositis Association of America. Check their website.

Myositis Associationof America
755 Cantrell Avenue., Suite C
Harrisonburg, VA 22801

Phone: (540) 433-7686
email: maa@myositis.org
www.mysoitis.org

So sorry about your son.I'm the one with PM and my son helps me a lot.He has been so good.

I can only speak for me but denial seems to be the first reaction.You do not see yourself as ill.You almost feel guilty,like it's a weakness in you.We would like to be perceived as normal,without a big fuss made.I suspect teenagers would feel this even more.They want to fit in and not feel different at that age.

I'm happy to hear he has regained his strength.There are some teenagers on here but your right about most of them being girls but that may be because the boys don't like to talk as much.

You sound like a very caring Mom,so he is already lucky.You need support to,so come here anytime.We will try and help even, if it's just listening.

I LOVE YOU, JAN !!!