JDMS is a rare autoimmune disease. It usually occurs in children 8-9 years old. Amanda is only 3 years old!! In JDMS the immune system is attacking the blood vessels, leading to the inflammation (called vasculitis) of blood vessels and muscles. Some of the common symptoms of JDMS is muscle weakness, skin rash, fever and fatigue. Other symptoms not so common are arthritis, vasculitis ulcers and slowed growth.
Amanda's symptoms are: rash on the face (prinarily the eyelids), knees, elbows, and knuckles; unable to walk since New Years Eve due to muscle weakness; inflammed muscles and joints (arthritis); fever; and fatigue.
Looking back, Amanda's first symptoms showed up in late October. She developed her rashes and it wasn't until the middle of December that the muscle weakness showed. She was diagnosed after going to a Pediatric Rheumetologist on Thursday, January 25, 2002. Her current medication is a high dose of Prednisone which is a corticosteroid. There is a 50/50 chance that she will have to go into the hospital within the next week to receive medication intravenously.
There is a long road to recovery (18 months to 2 years). In a month we will start Physical Therapy so the Amanda can regain the full use of her muscles. She will be on Prednisone for most of the next two years.
We will continue to update you on any changes to Amanda's sickness.
Thank You for your concern, thoughts and prayers!!
