Post surgery Avacake has to rely heavily on her chair for the next month. She is still seizing at least a couple hundred times per week and we are only starting the new medication tomorrow. It will be a fourth line of treatment again. We always try to avoid a fourth line. When you are on more than three Anti-Epileptic Drugs your chances of being one of the patients that succumb to epilepsy via SUDEP (sudden unexplained death in epilepsy patients) go up exponentially. We always try to avoid this. However, Avagrace's absance seizures are back with a vengeance. I mean she literally has them several times an hour and it is so frustrating for her.
Imagine that every day you walk around with a remote control that someone with you holds. On it is a pause button that will not only silence and freeze you to the world that is actively going on, but it will be un announced and it will last for a few seconds to a few minutes. Approximately 8-30 times an hour (or more). That is what life is like for Avacake.
Mix that in with moments where portions of her body do their own thing. Like her hand clamping into a shadow duck puppet shape and not releasing even if her other hand trys to help it. Or when her lips cheeks, neck muscles,chin, and side or sides of her neck start to tremble as if she were shivering. Yet it is only these areas, nowhere else. Then there are those times that her legs or arms will stiffen straight out and be immovable.
Or one of the worst type of seizrue for Avagrace (because it is painful and she is conscious during its entirety) is when she has what is called "abdominal epilepsy." This is also the hardest one for emergency techs, nurses, and some doctors to understand or believe as seizure activity. It is basically when her brain is seizing specifically in her stomach/digestive tract area of the brain. It causes extreme pain as her muscles are flexing and therefore squeezing as tight as possible. This is one of her most frequent seizure types and is in fact one that can go status and has caused cardiac arrest. If we administer rescue meds right away we can usually stop it effectively. However, sometimes it is hard to tell if it is a seizure or a normal tummy ache until it really gets going and causes such intense pain that Avagrace is doubled over and unable to focus on anything else.
There is also seizures (gelastic) that Miss Avacake has that make her burst into tears or have uncontrollable laughter for no apparent reason. She also has ones that appear as if her body is hiccuping (myoclonic) or her arms just jump into the air. She has these every single night without fail. Another type that Avacake is aware is when her eyes move back and forth very quickly and yet she is completely conscious and aware of it. She will say that she "just had an eye seizure." These are rather creepy.
With over 40 types of seizures and Avagrace having so many different and rare seizure types I could go on. If you are interested in knowing more just leave a comment down below. But for the purpose of today's blog I am going to get back to the topic at hand. :-)
When we took the Vagus Nerve Stimulator out it was for two primary reasons and many secondary ones. We knew that this would not have any affect in decreasing seizures and that it would likely increase them (because even though the VNS caused a lot of negative reactions in Avagrace it did help in many ways). So for now we try the last few FDA approved anti-epileptic drugs (we have tried so many and so many combinations of them that we are very limited on our options at this point). We pray that this country will make the miracles in Colorado available to the rest of its citizens (google charlottes web, or medical MMJ in Colorado for children with epilepsy). We plan for the possibility of dividing our children between Brendan and I so that he can stay here where the Air Force has stationed him and I can move to Colorado with Avagrace to try Medical Marijuana. We consider allowing surgeons to remove a portion of our daughters brain. We share our story in hopes of educating the public so that epilepsy will receive more funding and more awareness so that one day a cure can be found. And of course, we Pray!