I want my Jordan back

Jordan is still having daily seizures & needing some sort of medicine to stop them. He has brief moments where he is awake & alert but only for an hour or so at a time. I feel these seizures are taking his life away. The seizures them self make him tired & I know he is angry & frustrated about them. Occasionally he tries to calm himself & make flinching & twitching go away. He gets a facial expression that looks grumpy & if he allows himself to show or feel any excitement, it sets him off into big flinching episodes (myoclonus seizure) followed by twitching,& sometimes shaking & eye darting (cluster seizure)

The epilepsy doctors office called back, increased his topomax again and said to only give the Klonopin & Diastat for the bigger seizures. All 3 medicines increase tiredness. I inquired about the Ketogenic diet. The doctor had brought this up at his last appointment & will have the nutritionist at his Sept. 5th apt. to hopefully set it up. I am hoping & praying, this will help to relieve him not only of his seizures, but also some of these medicines he has to take therapeutically. My baby is drugged. It sounds harsh but that is the point this has all come to.


I want my Jordan back. He has been withdrawing, not as interested in play & sleeps most of the day. When he does play those small glimpses of the lively happy boy he used to be are very short lived. He does not bat at toys or grab objects in his hand anymore. He does react to Justice & me & his puppies & of course the key words McDonalds. He just isn't himself. I am hurting for him & I know this situation is very hard on him. I just don't know what to do anymore.