Tuesday, May 11, 2010
Reagan FINALLY slept last night. Of course it was after another double dose of Ativan at 10:20pm but she didn't fall asleep til almost 1am! It was painful...she'd doze off in my arms and then two seconds later startle herself awake...she did this over and over and over again. I've never seen a child fight sleep so much! I definitely think it's a matter of her brain not allowing her to sleep. That's why soothing mechanisms have never helped her. If we could identify what exactly it is, that would be great, but knowing how little is known about neurology I doubt that will ever happen. Meanwhile I think we HAVE to find some sort of sedating medication than can help her to sleep when she gets like this. I'm not sure if the Ativan really did anything...it did take two double doses and it was hours later before we saw any improvement. We just need something that we can give her when she gets like this to help her rest. If she was an average child staying up like this would be alarming...but having mitochondrial disorder (which is supposed to make you tire out more quickly) this is even more alarming...and potentially harmful to her. We spoke with her neurologist about this today and he seems to think we need to give Clonidine another shot...only at a higher dose. I don't know, we just need something, anything that works! He also thinks we could try to decrease some of the meds she is on. Of course he doesn't want us to touch the Banzel but he thinks the Klonopin might be a good place to start (since she's already on such a low dose). Mike thinks that maybe all the meds she's taking are making her a little coo coo and that's part of the reason she gets like this. Who knows. No one knows and that includes the doctors. We did find out the results of Reagan's shorter EEG last Friday. She only had one head twitch the entire time (go figure) but the neurologist went back over the data and said it does not appear to be a seizure...just a movement or a twitch. Overall her EEG looks better than previous ones although there are still spike and slow waves present. We are super shocked that these are not seizures. I won't be completely at ease until we get the results back from the 23hr EEG...whenever that may be. Reagan slept til 12pm today (a whopping 11hrs) but woke up still on the wrong side of the bed. She continues to be super tense and is still crying off and on. She screamed and cried the entire time in the car...but when we got home she had a huge leaky dirty diaper...so maybe her tummy was hurting her. Who knows. You can tell she's still tired. She's got the sleepy eyes. I'm hoping she'll sleep tonight...not sure if we should try the Clonidine or not. We'll see.