Today we went to see an orthopedic Dr in Atlanta who specializes in CP. I brought some of the test results with me (the basic genetic tests, the report from the spinal MRI, etc.) and he looked at them and at Eve. I also gave him the timeline I had written out about what has been done, and when. After listening to our story, he said that he got much more from what we said than from looking at Eve. Because we have seen regression, he doesn't think it is CP. He thinks that we don't need to go to CHOP (which we are going to ...it's all set and we are looking forward to it), but since we already have plane tickets, etc, he said it won't hurt, but they will probably say the same thing. I'll get back to that in a minute. This Dr. (Schmitz) said that we are doing all the right things to find a diagnosis and the next step would be a muscle biopsy (which we are still trying to coordinate - back to that, too). He said it might be Spinal Muscle Atrophy, but told me not to look it up and get scared - there are many types of SMA. He wants to see Eve in 6 months.
So, as Jim and I drove home we talked about it. He said that you never learn anything from one source, so it is still good that we are going to CHOP - even if they tell us the same thing. By the way, we'll be staying with my parents for almost a week and are very much looking forward to the visit to them and CHOP.
As for the biopsy and genetic testing: I have left 3 messages with Dr. Shoffner's office and they have yet to call me back. I am very frustrated by this. I am trying to complete the paperwork and have 2 simple questions. I will try calling again tomorrow morning and if I don't get through, I will call the neurologist and see if his office can get through for me. Who knows, maybe the one doc will tell the other that his office staff stink. I really want to get this done before the first of the year when our deductibles get rolled back.
2 comments:
Duchess, I must have missed it earlier in your blogs, but can you tell me what CHOP is? I'm sorry, but I think I missed it. I believe that you and Jim need some huge, huge hugs and piles of kisses. I am sure that Eve gets a large slice of hugs and kissed, but you guys need them too. We love you and miss you, Cheers, Queen K
CHOP is Children's Hospital Of Philadelphia. It's the number 1 children's hospital in the nation. We know someone who works there and she pulled some strings to get us an appt in the Cerebral Palsey clinic.
We love and miss you, too!
Duchess
Post a Comment