Good News! August 14th

When we were in Seattle, we found out that Ammon was finally approved to start the Ketogenic Diet. We were so excited, we have been waiting months for this news. It is a low carb, strict diet that helps control seizures. The medication that he is currently on just wasn't working anymore and he started to have more little jerks all day long. We discussed this with our doctor in Feb. and started doing blood tests to see if his body could handle it. They kept showing unfavorable results and so every few weeks he would get poked, wait for the doctors answer, etc. I started giving up and taking a break from the blood tests and started worrying maybe there was something more wrong with him that we were unaware of. Well out of the blue we heard the good news that a few doctors consulted together and thought he would do okay. We went into Primary Children's on Aug. 1st, to start the diet. He had to be monitored to avoid hypoglycemia, hypoketosis, or some other problems. His body reacted the way it should and his seizures have already decreased. It is so nice to see his alertness coming back and not have jerks all the time. He was doing good and his energy were improving. Then he started crying more than normal like he was in pain. It got worse and worse. I started to make the rounds of doctors to see if they could find something wrong. I have never had to go to the doctor just because he was crying-although I have wanted to many times. Well we have done blood work, xrays, exams, changed his new formula slightly and he shows improvement at times, but after a day like today I'm frustrated and still at a loss of what to do. He seems to do better right before bed and then sleeps through the night, so we aren't totally worn out, thank goodness. He started kindergarten, but we have yet to make it through a whole week. I have really enjoyed going to his classroom. The teachers and aids are wonderful. He couldn't be in better hands. All the other students have multiple disabilities and yet you hear stories being read, songs sung, comforting words, the whole day. The first day we only made it about 15-20 min before Ammon started crying/yelling too much. The teachers didn't seemed too concerned though and just said "Everyone has bad days Ammon, it's ok." Well I knew it probably wouldn't stop, so we left. Car rides are one of the only things that soothe him, so I don't mind driving these days. So the good is that our seizures have almost gone away, but crying out for about 30% of the day is not a happy Ammon.