Apr 2005 | May 2005 | Jun 2005
Several migraines and trouble with vision. Teacher noticed he had problem sitting on floor. Charlie said he had "growing pains." Complaining of pain, crying, but cheered easily.
January 6, 2005
Noticeable change. Unable to get shoes on. Sluggish in morning and trouble getting pants on.
January 7, 2005
Difficulty with shoes and pants. Complaining of growing pains and stiffness.
January 8-9, 2005
At his dad's house. He noticed fingernails and pain. Again thought to be growing pains.
January 10, 2005
Big change in stiffness. I had to dress him and put shoes on. Charlie could not get up stairs on schoolbus. Called Dr. L's officeand they made appointment. Brian took him to appointment where they did blood work. His PE teacher sent a note home regarding her concerns.
January 12, 2005
Left for Florida trip with family. Charlie struggled walking through airports. Used wheelchair on last leg through airports.
January 12-16, 2005
Noticeable decline in walking and climbing stairs. Mood is poor. Not having fun like normal with swimming, going to beach, or normal kid things.
January 14, 2005
Dr. L called us in Florida with his report. Abnormal CK levels but not too concerned at this point. Prescribed 10 mg prednisone.
January 17-23, 2005
I am out of town. Charlie's grandparents are staying with him. Docto had prescribed 10mg prednisone for 7 days, then 5 mg for next 7days. Charlie was still declining. Had to be carried by his grandparents up stairs and onto bus. School dismissed him from PE and recess. Had several falls at school and at home. When I got home saw big change! Something is very wrong!
January 25, 2005
Went back to Dr. L. More blood work done and told him he was much worse. He gave me his diagnosis of polymyositis...hopefully "acute." I began researching on-line. Dr. L's nurse is setting up an appointment with a pediatric rheumatoligist in the area. I reasearch myositis from this moment night and day for next two days.
January 27, 2005
No word yet from Dr. L's office regarding an appointment, so I had Charlie's labs faxed to me and took to my pediatrician for her input. Dr. M speculates MD and upped prednisone to 20 mg. Meanwhile, I sent an e-mail to Children's Memorial Hospital in Chicago following a referral from The Myositis Association to see Dr. Pachman if possible.
January 28, 2005
Conchita from Children's Memorial called and asked if I had any medical information I could send. I faxed her two sets of labs from January 10 and January 25 with the elevated CKT levels. After receiving the faxes, she called back. Dr. Pachman had accepted Charlie and set him up for an appointment for next Wednesday, February 2. I am so thankful that someone is paying attention to my son, his sudden decline, and my cry for help!
January 30, 2005
The 20 mg of prednisone has really helped as he has climbed the stairs for the first time in two weeks. He still has a lot of pain...but some relief is there.
January 31 and February 1, 2005
Needs help to get on the bus...still supporting him outside, still falls easily. Crying at night in pain and exhausted. He still does stairs slowly on his own