myoclonic seizures

[teachermommy]

I am a mother of a 16 month old baby girl named Samantha. She is currently being treated for Tonic Myoclonic seizures that we have been unsuccessful in controlling or finding a cause
for. Her seizures started over the holidays of the '06-'07 season. The seizures occur in her sleep or shortly upon wakening.They start with her full body tightening (tonic phase), then as she
relaxes the myoclonic seizures begin. She has any where from 15 - 30 in the
cluster. We do have this video taped, so the doctor has been able to
observe it. She has had a CAT scan, three EEG's, an MRI, genetic
screenings (including MECP2), and a lumbar puncture, which all came back
negative or normal. In the beginning she was diagnosed with Benign Myoclonic
Epilepsy of Infancy, but because of developmental delays, they
began running more tests. She does not use her hands well, but is
slowly making progress in this area. Her eye contact varies. Some days she
seems to engage more, then other days she may only make eye contact
once or twice. It appears that the longer she goes between seizures, the
better her social interaction is. She started pushing up to sitting on
her own the beginning of January (at 15 months). We are currently being
treated at Texas Children's Hospital in Houston, TX, under the care of the top epilepsy doctor with the Blue Bird Clinic. We are very happy with him, but do not want to leave any stones unturned. He felt sure that the 3rd EEG, which was done nine months into having seizures, would surely
tell us something. This was not the case. He said her EEG was normal, not just normal, but SO NORMAL. He says she does not fit anything, and he is at the point of scratching his head. Basically the only thing he knows to do at this point is try to control the seizures. She was first put on Keppra, but this was unsuccessful, and it caused her to be very drugged and zoned out. We are currently on 200mg of Zonisimide, and that has her seizure clusters about 3 or four days apart. I am sure we will be raising her medicine again soon. I know that sometimes fresh eyes can look at things differently, or experience may allow someone to have another answer. I thank you for your help and your time. I am only a mom trying to find out what is best for my baby.