Sedawson74

I really feel for you. I have no questions, just support. I lost my son at 5 1/2 yrs old and it is the worst experience ever. After three yrs i still awaken in the middle of the night sobbing. Truly, if you need to talk, or type, let me know. Things will never be the same, and they shouldn't be. As you already know, normal ceases to exist after an event like this.

it is. I always enjoy hearing things like this about the keto diet. Its very regimented, but it certainly seems to have its benefits. At the point it we were at, we grasping at the air, hoping something clicked. One neurologist actually hadn't heard of it. Anyhow, thanks for your thoughts.

I asked them way to many times about it. In the end we tried to introduce lipids homeopathically, that worked for 2 months, then the massive spike in activity. So yeah, it was jacked up.

Wow, i am sorry to hear that. We were accused of a lot of garbage as well. Went to Wal-Mart on one occasion and had security called on me, because some half wit of a woman thought i was abusing him. He was really prone to tantrums, i mean violent tantrums. He broke my nose twice. My sons Dr. actually threatened to take our son away from us on numerous occasions. Its interesting how a 5 yr old can teach so many people so many things. Anyhow, its nice to know that there are others out there. If you ever have the need for an ear, you know where i am. Thanks again.

I hope you continue to have a seizure free life. You are seizure free right? Its interesting they went the route of the ketogenic diet, my son was diagnosed at 7 months with idiopathic infantile spasms. He passed away when he was 5 in 2009. It was a text book case. He presented with jack-knife seizures only once or twice a day, but after three days of observation they told us he was having hundreds a day. The adamantly refused to put him on the ketogenic diet, instead going with the ACTH and trileptal. All in all, his meds were close to 900 bucks a month. Have there ever been developmental delays? Or any autism like issues? One more for you, did your parents ever tell of the issues they may have encountered with hospital staff or others?