Jenelle's Journey

I spoke to Dr. Phillips today, and I informed him of our appointment with Dr. Shields at UCLA next Thursday. Upon hearing this, Dr. Phillips said that he wants us to wait on treatment until we see Dr. Shields, and at the very latest, check Jenelle into CHOC on Friday the 26th to begin treatment. Dr. Phillips said that Dr. Shields is one of the top 5 Pediatric Neurologist in the country, and probably the best of everyone in regards to Infantile Spasms. He was very excited, and wanted to hear what Dr. Shields recommends. Dr. Phillips also told us that Jenelle's case is so interesting, he would have no problems if Dr. Shields wanted to keep Jenelle at UCLA for treatment, but either way, he wants treatment to begin as quickly as possible after our consultation. This is very comforting to hear. We didn't really want the second opinion to confirm her diagnosis, but we think it will be very comforting and beneficial in helping us choose the best treatment for Jenelle.

We also spoke about the various treatment options, and he explained how we will begin the ACTH, if that is the route we choose. Most likely, Jenelle will be admitted to the hospital on Friday, September 26th, and he will start an IV first with a Vitamin B6 injection along with an EEG running. He said within an hour of the Vitamin B6, we should know whether or not Jenelle's seizures are from a Vitamin B6 deficiency, and if so, we may not need ACTH at all. This is also very encouraging. So, we are in a holding pattern until next Thursday! We plan to enjoy the weekend with Jenelle and get the home organized for this long road ahead whether or not it be UCLA or CHOC.