Kate had another episode yesterday- the first in 4 months. I wouldn't say that this was her worst episode, but it was the longest, lasting from 2:45am until 7:30. Last night she had her first dose of Periactin (I hope I spelled that right), and it seemed to work since Kate was fine this morning and had no vomiting.
This whole thing continues to confuse me. I did find a pretty helpful description of CVS HERE, if you want to read about it. I liked that it talked about how hard this can be on the families, in many different ways, as well as on the patient. It is a lot more than just throwing up. With every episode, Jake and I get discouraged all over again. I guess we are hoping that, somehow, it will just go away and the episodes will stop. Which might happen someday, but who knows when.
I found a support group for CVS on facebook, that I hope will be of some help to us on this journey. Although reading through some of the posts makes me scared. It appears that Kate's CVS is pretty mild compared to what many many people deal with. So, I am thankful for that, but scared that Kate's could get much worse.
I might be getting ahead of myself a bit, as we are still in the midst of testing and figuring out what Kate's blood work results mean. It appears to be CVS, but I guess there is a chance it is something else. Hopefully that blood work will give us a clue.
Kate goes in to her neurologist in November for a follow-up, where I am sure I will have lots of questions to ask. She then has her appointment at the neuro-metabolic clinic at Children's in Boston in December (yes, that was the soonest she could get in). Honestly, I do not really know what is going to happen at that appointment. I am hoping they will be able to tell us what Kate's blood work means and where we should go from there.
For now, we wait. And track her episodes. And pray for answers, patience, and peace.
|She is pretty proud that she can ride all by herself now :)|