I belong to an online support group for Tuberous Sclerosis. I felt that even if Austin doesn't have TS, they have the most experience with Vigabatrin. In talking with one of the members, she felt the Director of Clinical Projects at the TS Alliance may be of some help.
The Director called me yesterday. She is going to try and help me find another place for the ERG testing...though neither of us is hopeful. It appears there is only one ophthalmologist in all of the northeast that does this test for pediatric patients.
Also, she is going to forward the genetics information onto a research at UT Houston and another researcher at University of London. Both these women are working on compiling databases of known mutations.
I'll keep you posted on anything useful we find out.
To Rachel- none of the info is reportable. Thanks for your help!
About Me
- JSmith5780
- I am a wife and mom of 3 little boys. My oldest is 6 and had Infantile Spasms and clonic seizures. His seizures are currently controlled by Vigabatrin, a non-FDA approved drug. My twins are 5. One is a typical, energetic little boy and the other has been diagnosed with Asperger's, an Autism Spectrum Disorder. This blog tells of our everyday lives and our struggles to get the best care and services for our boys. I also work full-time as a contract Materials Engineer.
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