Rett Syndrome Strikes again?

Well, here is the update I promised!

First, here is the connection we seemed to have made. In mid January, we upped Caitlyn's Zonegran to 250mg. It seems that for the first time, we got hit with a side affect. We started to notice small changes in Caitlyn. First, we noticed when we were changing her that her tail bone was sticking out. Slowly we began to notice other changes. Her pants were needing to be cinched up more, and some were falling down that hadn't been before. To someone on the outside, the changes were subtle. To her mom and dad, they were huge, and coming fast.

There were nights when we would be lucky to get enough food in her to give medications. Some mornings she wouldn't even finish one package of oatmeal. It was a struggle, and became a fight to feed her sometimes. We would even make 3 different dinners, thinking maybe she didn't want what we had fixed...Our life was revolving around food...

Last week we headed to the Nuerologist for a check up. The last time she was there was December 1st. They weighed her, and she was down a full kilo. (that is 2.2 lbs) He decided to add Depakote to her med list, as it is supposed to be a appetite stimulant. Once we get to a comfortable level on the Depakote, we will taper off on the Zonegran. He said he'd rather her be middle of the line on two different meds, instead of topped out on the Zonegran.

So this appointment came in the middle of a nasty cold that hit our house. This cold had Caitlyn not eating at all on some days. She would get in these coughing fits that would make her start vomiting. It was horrible! Then I hear she has indeed lost weight...grr..So, I scheduled an appointment to meet with her Ped. and discuss our options. (we also saw another doctor in the clinic last week, and started breathing treatments for Caitlyn's cold. That got her eating again and gave her a bit more energy)

Today was our appointment with the ped. Let me just say, my daughter's pediatrician is the most amazing person in the whole world! He really cares! And to top it all off, he has an adult son with Cerebral Palsy. (I'll tell you a bit more about that in a second) So we discussed everything. He seems to think the Depakote will help a ton! I sure hope so! In the mean time, we will be seeing a nutritionist, and having a swallow study done. We don't expect the swallow study to show anything more than immature chewing, but want to cover everything.

So, we nervously brought up the g-tube issue at our appointment. We talked about how we can sit for 1/2 an hour and get very little in her! He shared with us some of his own experiences. How they look back at pictures of his son and his face with no meat on it...How he remembers trying to feed him with a syringe, fighting with each spoonful. He said he has never spoken to a family that regretted their decision, but that most said they wished they would have done it sooner. He said we will go with our plan for the next few months, and if in the end we haven't seen progress, we can honestly say we tried everything we could. It does feel wonderful to know that he completely supports us, and we support us if we decide that a g-tube is what Caitlyn needs. It doesn't make that decision any easier, but for now we will just keep an eye on her, and add butter and cheese to EVERYTHING that we can.

It is wonderful knowing we have the support. I will update as things change. Right now, my "skinny mini" (as we like to call her) is 38 lbs and 3ft 10.75 inches tall. Her BMI isn't as low as first thought, but it is lower than it was, and below that magical 5%. Please pray for her weight gain, and the sanity of mom and dad during meal time struggles!