Tuesday, November 6, 2007

Second Series of Tests

Last week the girls visited the geneticist to have the last series of test ran for Rett Syndrome. They only drew blood from Bree to save money since the test is so expensive ($2700.00 before insurance). It is assumed that if the test comes back positive on Bree it will for Paige as well. This test will be looking for a mutation of the CDKL5 gene. This particular gene mutation is linked specifically to Atypical Rett Syndrome. The test will be performed at Baylor University in Houston, Texas and will take 4 weeks to receive the results. We pray everyday that the results are negative and our daughter will have as normal of a life as possible. If this test comes back negative their neurologist would like us to take them to Shands Hospital in Gainsville for additional test. Yet again, more waiting and seeing!!!

1 comment:

jotcr2 said...

HI, I read on the IS group that the tests came back negative. That is good. One of Sheena's friends in her EI playgroup is being tested for Rhett's. They are still waiting. I think the idea that walking is out of the question would be very daunting.