Evan has been on the diet for a little over a month now. WOW! I swear it feels longer though!!! He has been doing fairly well on it and so far, no major side effects. About 2 weeks into the diet we decided to wean Keppra because Ronnie and I could no longer handle his behavior. He went 3 weeks without any seizures, but about a week into the wean we started seeing some breakthrough ones.( 3 seizures to be exact) We also decided to taper up his lamictal, but the wean was faster than the tapering. Once he was on the higher dose of lamictal we stopped seeing seizures (for now, anway) and it has been 2 weeks since his last seizure.
Evan had his first keto clinic today and everything went fairly well. He did awesome at his appointment. Ever since the start of this nightmare with epilepsy back in December, he has been horrible at doctor visits and hospital stays, but today he did fairly well. The only thing he hated was the labs that had to be done. My poor little guy :( We have decided to go up on his ratio to 3.5:1 and increase his calories from 1160 a day to 1300. So, we are pretty happy about that and hopefully the increase in calories will help with the "hunger".
The only thing that made my heart sink was hearing for the first time that Evan is definetly delayed in his expressive speech. Something I just knew for the longest time, but never could get a doctor to agree with me on , and to be honest it did NOT feel good to be right this time. I just wish that I would have fought harder for the and maybe he wouldn't be as delayed. Anyway, while we were at the hospital this morning, the doctor gave me the number to the speech pathology department and I stopped in and filled out paperwork and he has an evaluation . So glad I called when we were waiting for Evan to be called back for lab work because if I wouldn't have called when I did, we would have had to wait until almost January to get him an appoinment!!!
I was talking with a friend today and venting out my frustrations. I love my son with all my heart and he is definetly one of the best things that has ever happened to me, but part of me is angry that we have to deal with this demon called epilepsy. I keep finding myself asking "why"..why is this happening to my son?? My friend then reminded me that God does not give you anything more than you can handle and that God chose me to be his mother because he knows I will watch out and take care of my special little boy. I am really not trying to drown my self in "self pity" but who really wants there to be something wrong with thier child??
I want the best for my son and I am going to do everything in my power to make sure his life is the best one possible. I am going to fight for him and I am going to make sure I do everything possible to help him through his struggles. Evan deserves that...and I am going to make sure he knows he can be anything he sets his mind to be..