Well a lot has happened, yet at the same time not alot. We finally had our meeting with the Dr. It went well, but since then has been frustrating. Zoey's seizures have gotten worse. Not as bad as the beggining, but instead of 1-2 episodes its more like 3-4. After meeting with the Dr. We decided that a change of meds was in order. Vigabitrin has run its course with no real success and there isn't any point in continuing with it. We will now try ACTH. It's a strong steroid which means I will be going back to cranky, swollen, high blood pressure checks baby. Plus a new fun bonus of giving injections twice a day! All my schooling is coming into play at least!
Once that was decided, it was just about getting the meds. That is a big deal apparently. My insurance likes to complicate things a bit so almost 3 weeks later we still have none of the new meds. Lots of phone calls and complaining and its not really gotten anywhere. Hopefully next week will be the week?
We also talked to our Dr. About getting another MRI done. I have a couple reasons for wanting this. After talking to many families I have found that despite the Dr.s protocol of doing one MRI to diagnose and then wait until the age of 2 to do another one, a lot of things get missed. We also had a family going through the same thing and they had another MRI and found out their baby had a blood clot in his brain. Not something that should be overlooked either! I have never been comfortable with waiting until zoey was 2 or even 1, but when I found out about the blood clot we scheduled immediately.
After a long day at PMCH, we got results. No blood clots, but there is some deep tissue injuries. That can happen for 3 reasons. 1. The seizures are creating the damage. 2. Injury at birth ( which we don't think it is because her last MRI was fine). 3. A metabolic disease. She was origionally tested for some diseases, but they cant cover all of them so it was just the most common ones. Now we will be going in again on Friday for more blood work to get more info if it is a disease. I asked the Dr. About long term effects, and there shouldn't be any problems. So until we know if it is a metabolic disease we treat with ACTH and see what happens.
Onto happy news. Zoey rolls over on one side all the time and on her tummy she will push up on her hands. Her little legs kick and she is starting to try and get her legs up under her. We are now working on getting her rolling on her weak side and also to get her sitting up. She is still a social little thing and would much rather look at faces and people than toys! Hopefully soon things will get resolved!
