Hello everyone! My son is 10 years now, he has had his first tonic- clonic seizure when he was 4 years old it happened only once but age 5 the seizures escalated 3-4 seizures daily. He got the diagnosis and we tested different epilepsy medications prescribed by his doctor like lamotrogin, kepra, topimax ( i live in Europe now I don’t know what these medications are called in US.) and more but unfortunately nothing worked instead seizures increased. More seriously his behavior has changed completely. He became aggressive started to hit kids lost concentration couldn’t sit still in one place etc. The doctors prescribed to him to Frisium age 6 which he takes it together with ospolot now. Nothing has improved every year is health is getting worse. Now he has 2-5 tonic-clonic seizures 98% of time during sleep. Each seizures lasts 3-4 minutes. He got diagnosed to have intellectual disability age 7. Last year he got a new diagnose as autism which was shocking to our family. Now two school assistants can hardly keep him during school time. He hits staff, hurts himself can not find a simple address if he is left alone. He is not afraid of cars passing by if you won't stop him he is going for the cars to get hit. meanwhile if you leave the balcony door open he does not hesitate to jump over and hurt himself. Now epilepsy is not our only concern but we are struggling a single dag to get through it without any injury to him or people around him. The only thing the doctors here are doing is changing his medication, taking EEgs but at the end of the day the kid's health is getting worse day by day and we get no where.
I can't travel to US I have a job here.
Any advice is highly appreciated. You can even send me emails with more information etc.