Friday, November 28, 2003
Muscle Biopsy Results Recap
So, after Danilo's biopsy a few months ago, a pathologist at Children's Hospital looked at it and said it was abnormal. Then, the tissue was sent to an out-of-state lab for more in depth testing. After inquiring as to the results, Dr. Niparko left me a message last Friday saying the "respiratory chain enzymes" were "all normal." She still maintains that Danilo has mitochondrial disease and says he probably has DNA mitochondrial disease. (Don't ask me what the difference was between DNA mitochondrial disease and what this last test was looking for; I have no idea) Niparko said she was checking the results with another pathologist.
Checked back with Niparko's assistant, Ginger, on Tuesday. Ginger reports that Niparko is consulting with pathologist, Dr. Sarnat, in two weeks. So, Danilo is supposed to have an appointment with Niparko the week of Dec. 15th.
Ginger says she can send Danilo's file to another doctor free of charge, but if we want a personal copy it costs $30. I will give them Dr. Pranzatelli's address next week.
By the way, Liz Tate at the OMS clinic advised us against Danilo having any vaccinations, including flu shots, if he does have OMS. (I guess vaccinations kickstart the immune system) I think we all noticed Danilo was doing a lot better a few weeks ago, but his pediatrician talked Oge into giving Danilo a TB test. Danilo's condition seems to have deteriorated lately. We wonder if these two things are related. Will have to look up TB tests on the web.
Checked back with Niparko's assistant, Ginger, on Tuesday. Ginger reports that Niparko is consulting with pathologist, Dr. Sarnat, in two weeks. So, Danilo is supposed to have an appointment with Niparko the week of Dec. 15th.
Ginger says she can send Danilo's file to another doctor free of charge, but if we want a personal copy it costs $30. I will give them Dr. Pranzatelli's address next week.
By the way, Liz Tate at the OMS clinic advised us against Danilo having any vaccinations, including flu shots, if he does have OMS. (I guess vaccinations kickstart the immune system) I think we all noticed Danilo was doing a lot better a few weeks ago, but his pediatrician talked Oge into giving Danilo a TB test. Danilo's condition seems to have deteriorated lately. We wonder if these two things are related. Will have to look up TB tests on the web.
Friday, November 21, 2003
guess what?
The mitochondrial testing came out "normal". Mun can post more detailed info because she is in charge of speaking with the neurologist these days. But this is good and is exactly the news I needed to get me hopeful about the trip to Chicago.
Wednesday, November 19, 2003
Last night Danilo fell of the bed and split his lip. He had to get 3 stitches, but he is ok.
His birthday will be Saturday and I'm planning a dinner outing.
We are scheduled to meet the OMS doctors in Springfield, IL on January 21st.
His birthday will be Saturday and I'm planning a dinner outing.
We are scheduled to meet the OMS doctors in Springfield, IL on January 21st.
Tuesday, November 04, 2003
I just spoke with the assistant principal of Shenandoah St. School. She says I can sit in on the interviews for Danilo's TSA. I forget exactly what that stands for, but it is the person who will be taking care of him when he is at school. I think that soothes some of my nightmares about him going off to school and being left on the curb by the bus driver in front of the school.
