Jenelle's Journey

Jenelle got home today from CHOC and is doing much better. She did test positive for the Roto Virus which we understand is very contagious. Symptoms include vomiting, high fever and the runs, all of which she had... and since last night, Jack has had the high fever and runs as well.

As mentioned, we took advantage of Jenelle's hospital stay and ran lots of tests. Dr. Phillips introduced us to a new doctor on staff who is a Metabolic Specialist and Genetic Doctor. I've forgotten his name, but I'm told he is World Famous. We met with him on Monday evening and he asked us a lot of questions, then wrote many test requests for Jenelle. He agrees with Dr. Phillips in that her problem is most likely metabolic. He also told us that some metabolic problems can be treated, but there are some that cannot. The "silver lining" if anything in all this is that you get better metabolic test results when the child is ill.

Jenelle's latest EEG showed that she is still having Infantile Spasm like seizures, but also Myoclonic type seizures of which there are more. So, the Vigabatrin is not working and I spoke to UCLA this morning and they instructed us to wean her off of it completely. Dr. Phillips started her on a new drug called Topomax which may help the Myoclonic type seizures. Jenelle still has 2 months to go until she can even start preliminary testing for UCLA's Ketogenic Diet Program, but she may be able to start the diet in as soon as 2 to 3 weeks at CHOC. So, we'll most likely stay at CHOC.

Jenelle started to try to hold her bottle again last night and tonight - a sign I knew that she was getting better.