It is so rare, information is hard to come by. I thought I would put her diary on the Internet in hopes of getting more information and also, to let other parents, facing this same nightmare, know that they are not alone.
The first months of the diary may be hard to read. It brings tears to my eyes and I wrote it and lived it. But, trust me, there are joyful tears in the months to come. We have been blessed, for God is taking care of our baby.
We hope that the information is helpful to each of you. The diary is our personal experience and doesn't necessarily apply to everyone. However, if you share the diary with someone else that has been diagnosed with JDMS or is the parent of a child with JDMS, please encourage them to read the whole diary or at least through December 1998.
I just recently found a forum that can connect us and may help answer many questions. You may want to check it out. Message Board for Myositis
We truely appreciate the prayers and kind words from everyone. We especially thank the doctors, nurses, physical therapist and school personnel for taking the time to seek information to help our children. We will continue to pray for everyone affected by JDMS.
There are fewer cases of juvenile polymyositis (JPM), inclusion body myositis (JIBM) and other clinical forms of myositis reported. The JDM rash precedes muscle weakness greater than 50% of the time. In both cases,(JPM and JDM) muscle weakness usually develops over a period of months, weeks or days. The weakness being proximal (closest to and within the trunk of the body) primarily involves neck, hip, trunk and shoulder muscles, but may also include distal muscles.
Dysphagia (difficulty swallowing), dysphonia (hoarseness), abdominal pain and arthritis can also occur with this disorder. Muscle pain is seen in approximately 50% of children with myositis.
Corticosteroids are effective in the majority of patients and remission with complete withdrawal of medication can be anticipated in a large percentage of patients. Patients with severe weakness may need longer periods of treatment. For those patients who experience dose-limiting side effects of corticosteroids or are unresponsive, there are other treatments available, including intravenous immune globulin infusions.
It is important to diagnose these patients and start treatment as soon as possible. The parents and the doctor of a child with myositis will also want to consider a rehabilitation program with a team of professional experts in this field.