Apr 2005 | May 2005 | Jun 2005
The Big Day...our appointment with Dr. Pachman. They took pictures of his hands. Physical therapist and occupational therapist evaluated him. Dr. Pachman walks in with diagnosis of juvenile dermatomyositis (JDM). Full history and exam was given. Solu-medrol IV started at hospital. 15 vials of blood were taken. Spent night hotel.
February 3, 2005
Back to Children's Memorial in the morning. IV treatment given again. Dexta test also done. Going home with order for home health care nurse to give a treatment on Friday. Port left in right hand.
February 4, 2005
Home health care nurse here for third IV treatment and she removed port. Order for two treatments per week of Solu-Medrol 100 mg. Next appointment set for February 23rd at Children's Memorial.
February 6, 2005
Very puffy and flushed face. Unable to climb stairs. Had a bad fall Saturday night. States "I feel like I'm going to fall." Flat affect and sad mood even with other kids. He complains of lots of pain. Seems bad today.
February 8, 2005
Home health care nurse out to do a new port and IV treatment. Used numbing cream, but worked on him for one hour to get a needle in arm and blew three vessels. Never did get IV. Nurse called Children's Memorial...Dr. Miller on call. (Stop and call Dr. Pachmanin morning for orders.) Charlie was traumatized...very upset. Gave 10 mg pill. No change in his physical status tonight since three weeks ago now. Worried about how I'll get his next IV treatments.
February 8-9, 2005
All night he has flu symptoms...fever, vomiting, and dry heaves. Vomited until 8:00 am on February 9 and became lethargic. Called Children's Hospital about symptoms. and to report no IV received the night before. Sent to OSF emergency room. Saline IV started immediately and he was admitted for further tests and evaluation. ER doctor called Dr. L and Dr. Pachman regarding admission and for guidance.
February 9, 2005
Pediatrician at Children's Hospital at OSF questioned meningitis because of neck weakness and back pain. Decided not to do test as symptoms mimic JDM. Staff was educated on JDM by Dr. Pachman, the internet, and myself. No one here seems to understand this disease and/or what to do. Thank God for Dr. Pachman.
February 10, 2005
Continued on IV hydration. Doctors decided to put in a MediPort. This will enable blood work and IV treatments to be less painful. Port went in well. He woke up and was in a lot of pain. Doctors keeping him one more night to monitor him. Sore throat and coughing from intubation during surgery.
February 11, 2005
We went home! He will be off school all next week to rest. Dr. Getz came to say he would would help locally for treatments. CK labs way down...so the current treatment is working...needs to continue treatments as ordered by Dr. Pachman.