The title of this post pretty much says it all. Tomorrow is Ayva's follow-up EEG and it will probably be her last day on a full dose of ACTH. While I am thankful that we decided to give ACTH to her, the side effects have been catching up to her. The poor baby is angry ALL the time, she can't sleep, she is STARVING (which was the least bothersome since she needs to gain weight), her blood pressure is on the edge of being high and the injections themselves are leaving little bruises all over her little legs. Seizure wise, she has gotten a lot better. She is no longer having clusters of seizures all day and all night. She has 1-3 singles "spasms" a day now and they usually occur in the morning before she has had any of her medicine.
I am so nervous about the results tomorrow. I don't know if I can take anymore discouraging news. I just feel so bad for her- trying to learn something all day, only to have it taken away more swiftly than the split second the seizure comes and goes. It's not fair. For 10 months she has fought this battle and she is still in this "limbo" state as I call it. It.s like she's in there, but the seizures make it virtually impossible to do anything. She can't hold her head up, or sit, or feed herself, or anything. It's just about the worst thing a mother can see her child go through. It's kind of like she's trapped in her own body and for all I know she is scared, or sad, or frustrated. Maybe she's in there asking me WHY? Why once she works on something all day does it get taken away again...
All day my thoughts are consumed by this terrible condition. Every.single.thing. all day long makes me think of it in some way or another. Like last Thursday- Justin and I went to Target. We were just walking through the toy section and I saw a cute, girly play kitchen. I opened my mouth to say, "Oh, I can't wait until the girls would like to play with something like this!", but I stopped myself because they may never get/want to play with something like that. Ayva especially. These seizures could leave her with severe disabilities. I also was reading a newsletter about the community classes that were being offered this summer and thought of when I was a kid, and I took a dance class. I wanted SO badly for my girls to be able to take a dance class....but they may never get to. Every little thing brings me back to how unfair and depressing this whole thing is.
What is even more depressing than that is the fact that nothing seems to be working for Ayva. We got extremely lucky with Anna. The first medicine we tried did the trick and she hasn't had another seizure since August of 2008 *knock on wood*. But with her identical sister, who has all the same things as she does, all of the medicines have not worked for her. I know that they are two different people, but I just wish it would work the same, you know? Ayva has been on Prednisolone, Felbatol, Clonapin, Vigabatrin, Topamax and now ACTH. For the past 2 months she has been on Topamax, Vigabatrin AND ACTH all together! I thought for sure if they didn't work alone, the combination of the three would make them go away! But that would be too easy, wouldn't it? And nothing is ever easy.
So I don't know where our next step is going to be, but I can honestly say I am scared about it. I think, and I don't know for sure, that our next step would be to go on the Ketogenic diet. I don't know a whole lot about it, but what I do know is that it is a very strict diet, and that it may not work no matter how hard we try. The Keto diet is a very strict diet where Ayva would have to eat certian things and NOTHING that wasn't allowed. She would have to eat every bite of every meal and Ayva is just not a kid who would do that. She isn't the pickiest out of the three, but she isn't the greatest eater either. The nutritionist at the hospital said that she would probably have to get a G-tube so that what she doesn't eat would still get in her tummy one way or another. I SO do not want her to have a G-tube and am trying to avoid that if possible.
So tomorrow is a very scary day for me, not knowing which path we are on, or where that path is leading us.
So, all-in-all....Seizures Suck.