Wednesday, September 8, 2010

Little bit of news

I spoke with neuro's office this afternoon. I left a few messages for him yesterday so he called me back. Only a few of the results we are waiting on are in so he wasn't able to tell me much. From just a couple test, he said that Ryder's thyroid and cholesterol are good. That outruled an cholesterol enzyme deficiancy. He said his liver enzyme was slightly high. He will be meeting with a team of pediatric neurologist on Monday (13th) and bring Ryder's scans to discuss. I am happy that several awesome neuro's are working together. I have heard A LOT of wonderful things about Barrows. Neuro was interested in learning more about Ryder's cousin's illness, thinking there may be a possible connection. His cousin has dermatomycitis. Neuro said he wanted to also consider Kearns-Sayre disorder (after learning about his cousin)which also causes nystagmus and is a white brain matter disorder. However, after researching it, I don't believe the symptoms fit Ryder. Kearns-Sayre disorder doesn't have treatments or a better outcome I don't mind ruling that out! Other than that, the doctor expects the test to take up to 6 more weeks:( I am not a patient waiter!!!!!! I asked how I can speed things up and he said there is no way. These lab test take time for cultures to grow....blah blah blah:)