I am new here. My name is Lee Ann and our son has NFD. He just got out of the hospital and was in the PEDS. Intensive care unit for uncontrolled seizures until when we left Monday and came home. he had about 50 some seizures which was really horrific for him to go through' they were all grand mal. they have died down to over half to about 1 or 2 a day. but still happen daily. on some of the events he pees himself, can not walk, can not talk and now server stomach spams. which he screams out in sheer agony until it subsides. The school had to say he could no longer attend and now we home school him. He is on a anxiety med. it has horribly affected his quality of life and has a impact on our whole family as well. he does see a med psychiatrist (hate it when he says they are fake seizures , it really hurts me and makes me upset ) and a psychologist who has yelled at him once for starting to go into one. he is 15 years old and does not have any friends only online which does give some social interaction. He does get sad at times and I do try to encourage him and that there is always hope. We are now trying to find someone in the US that does treat this disorder. IF ANYONE HAS ANY SUGGESTIONS FOR A SPECIALST WHO TREATS THE DISODER,PLEASE LET ME KNOW. Also any other suggestions you have would be so appreciated . Oh, after his seizures he fills horrible for the rest of the day and we have to do his school work around how he feels. I will lift all NFD brothers and sisters up in prayers that one day we will not be judged but treated as a whole person and not stigmatized. below our kitties Smokey who is gray and Chester . whenever Caleb has a seizure he never leaves him the rest of the day. stuck on him like glue. Amazing how our animals are so loving when they know we are sick. Chat at you soon.