My son Jayden started having seizure at 2 1/2 months. At first the doctors didn't believe me that he had a seizure. I took him to the ER and the doc said that babies don't seize the way I described and told me to go home and if it happened again to come back. At that moment he started seizing right in front of them and they took action quick. That Doc walked out of the room afterwards and never came back. Jayden was admitted at the local hospital given phenobarb and sent home.

Three days later I noticed Jayden turning blue. I stimulated him by rubbing his chest and he finally started breathing. At first I thought I was seeing things. Then he did it again and this time my Mom saw too and again we were back at the ER. This time a different doc believed me and admitted him. Two days later he did it again and within hours a helicopter was there to pick him up and take him to Children's Hospital, Madera CA. We stayed there for 5 weeks with no real answers as to why this was happening. After numerous tests: MRI's, CT scan, blood work, metabolic testing, there were still no answers. He left that hospital without seizure control and still not enough to stop the seizures.

Eleven days later after being home the next real big seizure hit and he was sent to UCSF. There he spent 6 weeks and still had no answers. He has been on Tegretol, Trileptal, Phenobarbatal, and the Ketogenic Diet. None of which helped.

Jayden is now 10 months and old and currently takes Topomax, Keppra, and Tranxene. His seizures on average last 20 minutes and take anywhere from 30 to 50 mg of diastat to stop. His neurologist says she doesn't know any child that takes that much diastat to stop a seizure. Developmentally Jayden is behind in everything except social skills. We are blessed because Jayden is such an easy going kid. Happy all the time despite what he has to go through. He also has chorea movements which are uncontrolled movements usually in his limbs and sometimes in his face. He tends to keep his arms back when laying on his tummy, he doesn't reach and grab things but we are hopeful he will because he continues to slowly make progress. I have never met anyone who has epilepsy and the movement disorder. Nor have I heard of anyone who's child started seizing as young as mine and has a success story. Jayden is now being considered for resective brain surgery. They have never found anything in the MRI yet but we are waiting for authorization for a MRI with a stronger magnet. Neuro is hopeful that they will find a malformation and be able to remove it. This is so scary to me to let my son have surgery with no guarantee in the results. It is very hard to watch him and know that he should be doing more than he is. We have 3 other kids at home. We are blessed to have such loving and supportive friends and family.