Starting a Blog

Hello Friends,
Chris and I have been blessed with many people asking about Cutter and wanting updates, so I thought a blog might be the best way to communicate with everyone. As everyone already knows, Cutter was diagnosed in January with epilepsy. He was put on medication and was seizure-free for three weeks. Then in February the seizures started again, and this time we are having a hard time controlling them. He was put on two different medications, neither of which have stopped the seizures entirely.

This past Tuesday we met with Cutter's pediatric neurologist again and talked about other options. He told us that he thinks Cutter has a rare form of infantile spasms. Regular infantile spasms show an irregular EEG and other clinical symptoms that Cutter does not have. The type that Cutter is having is structural and only pertains to the left side of his body (because the initial problem is on the right side of his brain). Unfortunately, until a child has tried different medications for a length of time and been unsuccessful with them, this is not something that can be diagnosed right away. He was hoping that they could be controlled with simple medications and simple dosages, and that has just not been the case. Therefore, the aggressive approach is to put Cutter on steroids. No doctors like having to give steroids but sometimes it is necessary. The steroids are not the total solution to the problem, however. They are being used to stop the seizures, and his regular medication is supposed to kick in and keep them at bay. He is trying him on the steroids for a two week period. During this two week period Cutter will be pretty much quarantined. This drug will make his immune system very weak. He can't be exposed to any kind of environment that could possibly give him an infection. With this type of steroid it would be hard to tell if he was sick because it masks the normal symptoms of an infection such as running a fever. Dr. H. was very adamant about us taking these precautionary measures to ensure that Cutter stays healthy. Therefore, I will be out of work for the next couple of weeks to make sure that I don't bring something home to him. Also, he can't be in the sunlight. :(

So...we should start to see some results soon from the steroid. We go back to the doctor in two weeks to have another EEG. If the results are good and his seizures have stopped, then he will slowly wean him off the steroids. We have not discussed what will happen if the steroid doesn't work. He wants us to solely concentrate on this part of the treatment.

We GREATLY appreciate all of your support, concern, and prayers. We will definitely keep you updated! Let me know if you have any questions!

Love,
Ashley