Seizures and not seizures

Rett Syndrome is so maddeningly stupid that I just can't get over it sometimes. Things had been going really well with Lu since getting her feeding tube, so I suppose we were due for something to change, and change it did. About a month or so ago Lu started having some episodes that really looked like seizures, for the most part. I have some excellent videos, but have decided to just explain them and not show Lu in such a vulnerable state to the whole world. 

The most severe form of these episodes includes her arms and legs suddenly stiffening, her arms slowly going out to the sides and raising into the air, and then being followed by uncontrollable shaking. During the shaking her eyes are huge, her pupils are dilated, her face is pale and splotchy, and she is not breathing. They last much less than a minute, more between 30 and 45 seconds. These shaking spells are happening approximately once a day. Sometimes there's no shaking in a day, and sometimes it happens more than once in a day. Then, all throughout the day, Lu is also having very brief spells with just the stiffening and arm raising, but no shaking.

So, off we went to the third extended EEG if Lucy's lifetime. This time was relatively painless since these are occurring so often, we only had to spend one night in the hospital, and found out they are not seizures. Yes, it is great news. We don't have to give her a medication that might make her groggy, and we don't have to worry that they won't respond to medication and damage will be caused to her brain. However, 80% of all people with Rett will experience at least one seizure in their lifetime. Yes, maybe Lucy will be in that lucky 20%, but I'm just not holding my breath. We haven't missed out on any of the other big symptoms of Rett, and I just don't feel it's realistic to assume that we will miss out on seizures. I hope we do...more than anything else, oh I hope we do. They terrify me. People die from them. 

Plus, since they are not seizures, there is nothing we can do, that we know of right now, to help these spells. When she just raises her arms and goes stiff for a few seconds, I don't get too worked up, and it doesn't really disrupt her life. But, the "shakers" as we have started to refer to them, are utterly heartbreaking. Lu looks scared and confused, and I can't help her. We can just hold her hand, and smile and tell her it's okay, it'll be over soon. We will see Dr. Sasha at the end of the month, and she may or may not have any other thoughts on what they could be. But, chances are that since they are not seizures they are just another thing that Rett Syndrome is doing to Lucy's body, and we just have to let it happen and get used to it, like tooth grinding, breath holding, and hand flapping. It just is what it is I guess. 

Rett Syndrome is the pits...

Here is Lu covered in electrodes...and still smiling.

And then look what the electrodes did to her skin. She has/had big scabs all over her head. It makes my stomach sick that she has to go through these things.