My daughter is 3 years old and had her first seizure when she was 9 months old which was diagnosed as a febrile convulsion. After that her seizures continued as febrile and afebrile seizures in spite of receiving antiepileptic drugs (Phenobarbital, Primidone, Valproate, Levetiracetam, Carbamazepine, Ethosuximide). Now, seizures happen as staring spell and she is not responsive. She currently takes Ethosuximide 500 mg/day, Zonisamide 200 mg/day, Clobazam 15 mg/day.
Her neurologic examination is normal as well as her brain MRI, but EKGs show rare paroxysmal discharges. Her last three episodes of afebrile seizures took way longer than before, the first two she had seizure for more than one hour despite the administration of 10 mg Diazepam rectal gel followed by another dose of 5 mg. She was taken to the hospital and then was transferred to ICU. The last time, the seizure took about two hours after both administration of Diazepam rectal gel and she was taken to the hospital and had respiratory problems and the hospital inserted a tube to her lung to provide relief.
We have tried different doctors and are trying to find a better solution to manage her episodes but we had no luck so far and the seizures are becoming longer and more scary every time. We have been to pediatrician neurologists in Iran and Spain and are trying to consult with epilepsy centers across the world to find a solution and a drug that can help manage her seizures. Any help and guidance would be appreciated, we are really in desperate need of better alternatives.