We went up to Floating for James' 1 month follow up appointment with neurology. We met with both his dietician and his new epileptologist. They were both quite pleased with Jamie's progress. His seizures are far more controlled than just a month ago and his developmental progress is astounding! "Astounding" is my word for it - not the medical experts. I don't think anyone gets quite as excited as the parents. :-) If he remains seizure free for another 6 - 8 weeks we'll start stepping off the Lorazepam. Then, after 6 months we can start stepping off his other seizure medications. This will be a very slow process as to not shock his system. Children with seizures are so sensitive to even the slightest change. James used to have a seizure every time his feet touched the warm bath water. Yup. Something that seems that insignificant to you or me can completely throw a wrench into the delicate world that is his nervous system.
The only bad news was regarding his most recent lab work. Apparently, his cholesterol and triglycerides were through the roof!! I'm not exaggerating. A healthy range for triglycerides is 75-100, James was at 1280! I didn't trade in seizures for an unexpected heart attack! Good lord! So, we left with a new script for repeat lab work - this time fasting. Nobody told me to have James fast last time. Once the new results are in we'll discuss further changes in the diet. We may have to switch from heavy cream back to soy milk - which will change EVERYTHING. but, there's no saturated fat. We'll see. I'm not going to worry until we get the new results.
To be continued...
No comments:
Post a Comment