juvenille dermatomyositis - Myositis Message Board

serinity · 09-24-2005, 08:15 PM

Anyone with a child that has dermatomyositis?

serinity · 10-28-2005, 10:24 AM

My daughter was diagnosed in August of 1996 with JDM.She has been in remission for 6 years.She is now 13.She was 4 at diagnosis.It changed our life , there were a lot of ups and downs.Like you we were devastated everything changed and my poor helpless daughter this wasnt her fault or ours.I kept asking myself why why her.I will never forget how helpless I felt.At that time her and only a few others had this in the whole state of Florida.It was scary.My daughter was started immediatley on solumedrol IV.Within a couple of weeks she was getting her strength back,but we were far from being done with this disease.I planted myself at the library, internet and anywhere else I could find info on dematomyositis. With the high dose steroids there came problems.She was emotional, she got huge,she grew hair everywhere,then she started getting fractures,apparentley the steroids softened her bones up so it started out with a hairline fracture in her knee from just being a kid and running around and then a couple of weeks later she had back pain.She started kindergarten wearing a backbrace.The steroids also caused high blood pressure .She was started on rocaltrol wich is a calcium supplement for her bones.She developed a kidney stone from the build up of calcium in her kidneys.I took her for a second opinion but we ended up staying with our doctor and he took her off of steroids because of the problems and we started her on methotrexate(which is a drug for cancer)but the benefit of this drug outweighed the risks of not being on it.They also added naprosen for her arthritis symptoms.She did good and everything was looking up.We slowly took her off all meds and shes been in remission ever since.She now is so atheletic you would never know she had this disease.She still goes in once a year for bloodwork and a checkup.She has however been comlaining of arthritis like symptoms lately and she goes back to the specialist in November.Im praying its just growing pains but I always wonder in the back of my mind if it will come back,the doctor said there was a very slim chance it would.Anyways Im sorry for ramblin on I just wanted to let you know it isnt the end of the world,there is remission and when children are diagnsed with this , it usually does go into remission and you will have your happy healthy daughter back.

ShannonNoel · 09-15-2006, 03:35 PM

I don't have a child with Dermatomyositis but I was one.
Dx at age 6. Tons of Cortisone, tests, PT, a 6-week stay in hospital, etc. Remission at age 8. I am now 37 and it has not come back though I do still have weaker muslces than the norm and have some RA symptoms that are most likely the leftover result of the DM.

kiwi girl · 09-29-2006, 01:25 AM

Hi Serinity
I have a Daughter who became very ill in April last year, she was rushed to the Hosiptal with a CK of 16,000 and a rash and unlarged liver and in alot of pain in the legs and back. They told us it was the above. She has been pushed from pillow the post ever since.
In New Zealand there are only 5 other kids with this, so the Specialists don't know what to do. She has had 3 and now has a Nuero.
Her Ck has been high over the past year with all the other symptoms. 4 months ago she had a EMG which without doubt that the muscles are dying in her body. 1 month ago she had a Biopsy and we are still waiting for results. She is a teenager and has been unable to go to school for most of this year. It breaks my heart to watch her suffer like this.
Please contact me if you want to know anything else.
Julie

serinity · 11-30-2006, 04:38 PM

kiwi girl
can you tell me what the doctors are treating her with?when my daughter was diagnosed they treated her with solumedrol iv every other day and then started her on oral prednisone.