Jayden Meets New Doc

On October 30th Jayden met the new Eptologist at UCSF. His name is Dr. Sullivan and he comes to us all the way from Philadelphia Children's Hospital, which is one of my pics for another opinion. I was very happy to meet him and even happier that he had some ideas of new things for us to try. His first idea was to try to give Jayden an oral steroid called Prednisone. You have probably heard of this steroid, typically it is used for breathing problems. In Jayden's case we are using it to help his brain. In some cases they have used this drug to kind of "re-boot" the brain of a child like Jayden. In extremely wonderful cases during the course of a one month trial they see huge gains in the child. Unfortunately this wasn't the case in Jayden. The steroid was nice because his breathing was great for a month (no wheezing) and he seemed stronger. He was holding his head up very well and seemed to work harder when trying to establish head control. But since it wasn't a good enough result we were forced to take him off. This drug has horrible side effects and it just wasn't worth any risk to Jayden's otherwise perfect health. After the one month trial we were off to SF for another EEG to test the findings. It was then decided in November to start a new trial on another drug. This time it was B6 which has no side effects. We scheduled another EEG to see if it was improved at all. This EEG won't be done until the beginning of January. I am excited to try this new drug.