Shelby's JDMS Journal of Events
March 2000 to present

Week 3

Week of 3/20/00 : Shelby is continually tired, weak, and now has a rash on her hands. Her knuckles are red and bumpy, but she says they don't hurt. We continue to use OTC lotions for the rash.  Later on this week we notice a rash on her knees and inside thighs. The rash on her fingers/hands is worsening.

Friday 3/24/00 : We are scheduled to have a moving sale tomorrow and to move tomorrow afternoon and Sunday. I took Shelby to the Dr. after school. Dr. R. sees Shelby and examines her rash, most of which wasn't present when he saw her on 3/9. He consults with Dr. B. I explained to the doctors that Shelby's day to day routine is changing due to the fact that she's weak and tired. She has trouble buckling her seat belt, bending over to tie her shoes, getting in and out of the car, and especially climbing stairs. Dr. B. calls a pediatrics doctor in Lincoln, Dr. F. Dr. F wants to see Shelby tonight at St. Elizabeth's hospital in Lincoln, NE. We take our son to our daytime babysitter's house and drive the 70 miles to St. Elizabeth's. We see Dr. F and she does some strength tests with Shelby. She has her sit on the floor and try to get up without using her hands. Shelby struggled but she managed to do it. Dr. F wants to take more blood tests as well as set up a consult with a dermatologist. Due to the fact that it's a Friday night, she recommends we check Shelby in to the hospital overnight so the tests can be expedited quickly and a consult can be arranged. If we don't check her in, it could be Monday before a dermo. can see her. We decide that dad will stay with Shelby and mom will drive back home to make further arrangements.

Shelby spent the night at the hospital. In the morning they took an EKG and more blood tests. The dermo. consult see Shelby in the afternoon. Dr. F. wants him to do a skin biopsy to rule out some things. Dr. F. told us she has a feeling that Shelby has dermatomyositis but gave us little information about it (including the spelling. My sister and a doctor friend figured it out and looked it up online). We were pretty scared (at least I was)...not knowing is torture.

Dr. L., the dermatologist, examined Shelby. He took a skin biopsy from her inside right thigh. The shot that he gave her made a bubble under the skin, and was painful. All we heard from Shelby was a small whimper. Then he took two small cylindrical pieces of skin out of her leg. Shelby watched the entire process and didn't even flinch. Both the doctor and the nurse commented on how brave she was! I was getting squeamish myself, but Shelby handled it like a champ. Dr. L. agrees that it looks like JDMS. Dr. L. gave us some prescription cream for the skin biopsy site and also a tube of cream for her rash.

Dr. F. tells us that she has scheduled an appointment for us at Omaha Children's Hospital. We are supposed to drive up there on Monday to see Dr. J, who is a rheumatic and immunology specialist. She tells us we should plan to be there 24-48 hours.

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Page created 04/06/2000 last updated 06/19/2001.