GABRG2 GENE MUTATION - EPILEPSY

HELP HELP HELP! My daughter will be 5 January 10th. On January 3, 2011 just shy of her first birthday she had her first tonic clonic. The initial ones were diagnosed as Febrile but now considered just tonic clonic as she had a "temp" of 100.4-101.9 for those initial seizures but never an ongoing fever or illness occurred. She since went onto have true tonic clonics without "fever", Focal seizures, Photosensitive seizures, Absence seizures and Myoclonic jerks or possibly Nocturnal seizures in her sleep. She has had 7 EEG's of varying length. 3 of them have been Abnormal including a 48 hour EEG as recent as February. Her most recent 24 hour EEG was normal. The issue is finding a Neuro to help her. That takes the genetics part of this seriously. That believes EEG's are not the end all be all of diagnostic tools. That they can occur without the EEG detecting them. We are near Columbia, MO. I have had her all over the state to get help. Any leads, directions anyone who knows anything about genetics, especially GABRG2. Looking for other families that may have the same mutation. I also have it as does my dad we have learned thru all of this.