If I don't blog about it, did it really happen?

That seems to be my train of thought lately...If I don't type it out on my blog, there is a small part of me that can pretend it didn't really happen. For this update, I have to go back in time to the week of Thanks Giving. The Tuesday before Thanks Giving, Caitlyn's wonderful daddy got up with her at 12am. They stayed up so Caitlyn could go in for her sleep deprived EEG. (Have you ever done this? hahaha...not fun!) The next day the nurse called me. She started out asking how Caitlyn was doing, which made me a little nervous. She informed me that the blood results they had recieved the week before from the ped. left them a little worried. I guess her Zonisamide (the seizure med she is on) level was 32 in May, and dropped to 23 in November. This is the level of that medication in her blood. I told the nurse that she was doing ok. That we had seen a couple of seizures here and there in the couple of months prior, but nothing to big. (or so we thought...keep reading)

So in the first week of December Eric took Caitlyn in for her Neuro appointment. The doctor was comfortable with her current dosage, as long as we weren't seeing a significant increase. He did recommend starting her on MCT oil, but my research left me wondering if the potential side effects of weight loss and stomach issues would really be worth it. I found nothing supporting MCT oil on its own. I did find that it is used with a modified KETO diet, but we wont go there with Caitlyn.

We started to see an increase around Christmas time, but Caitlyn also had a sinus infection, so we were waiting and watching. They kind of taper off..(again...or so we thought) Then last week, she had one while napping at school. I called the nurse. And while I was waiting to hear back, I spoke to a couple of friends whos kiddo's also have seizures. I started to talk about Caitlyn's funny grunting in her sleep, and going into her room to see her shaking. There is so much talk about the startle motor issues that kids with Rett Syndrome have, I guess we just never brought this to our neuro's attention. This is something Caitlyn has done for several months. My friends and the nurse confirmed what I think that deep down I already knew. These seizures at night last about 1-1 1/2 minutes. The nurse said they will be worse when she is first falling asleep or waking up. This gives me just enough peace to sleep a little...

So the meds have been increased to 250mg's once daily. I think this may be the highest we can go on this med. The idea of adding another medication is terrifying. You see, we have been so blessed to not have any side effects...

In other news, I have been appointed to the Washington State ARC board! This is an exciting new adventure for me. I hoping that this will help me do everything that I can in my role as Regional Rep for IRSF

To all the other families out there dealing with seizures tonight...Together we will make it through.