Another Hospital Stay Under Our Belt!

Yay, we are HOME!!!

This morning was super busy. Dr. Tye and his fantastic nurse, Joann, stopped by.  He just wanted to see us again and go over everything we talked about last night just to make sure we understood everything.  After they came by Dr. Morton and Dr. G made their way to us. Not sure if we have talked about Dr. G before but she is doing her fellowship under Dr. M and she is AWESOME! She has such an amazing way of explaining things in "mom terms."

Dr. M discussed the new medicine they started C on today. This medicine has a BIG RISK of SERIOUS RASH if the dose is too high too quick so they have to go low and slow with the dosing in order to help prevent it.   It will take about 2-3 months before C will get to a therapeutic level which is when we can determine if it is working. This will be the last medication we try before discussing surgery.

Dr. M and Dr. G said that they (along with Dr. Tye) want to give this about 3-4 months before we decide on surgery. Dr. M is very much a risks/benefits guy, As we said earlier, he does not want to put Charlie Claire on a medication that has side effects 24 hours a day for episodes that only add up to about 3 minutes of her day. In his words "the treatment can't be worse than the disease." The reason they are comfortable waiting 3-4 months...these episodes are not having any impact on the rest of her brain. Even when the episode is happening the rest CC's EEG is completely normal.  If these episodes were affecting the rest of her brain then their game plan would be different but that isn't the case.

Dr. M and Dr. G really want to get Charlie Claire off phenobarb because of the effects it has on cognitive thinking so over the next couple of months we are going to be tapering that while increasing the new medication.

While we are hoping this new medication is the answer it is hard for us to get our hopes up too high since Charlie Claire has never responded completely to any meds in the past. It is comforting to know that we have an answer to why these episodes are occurring and to have to a game plan in place - if you know me, you know I am a game plan girl! It is also comforting to know that these episodes are not harming CC or her development. So, while I am not the most patient person I am comfortable and confident with the plan we have set in motion.

A special thank you to our sweet friend Beverly for spending the day with us on Thursday and giving us an extra hand to help with Jackson and to keep me company...it isn't always the most fun to sit in the hospital all day, it was nice to have a buddy!! Thank you so, so much!