Monday, May 18, 2009

The Never Ending Low

The last couple weeks have been so weird. Alex has been in such an extreme low it's unbelievable. She has lost 10 pounds, she has no appetite, the acne is gone, and other symptoms are going as well, but she feels AWFUL. This is what I expect after the BLA, not before. She has been taking whopping doses of hydro ( 5mg at a time, but up to 30 or 35mg in a day) just to keep from vomiting and shaking. Along with feeling physically awful she seems to be in a really major depression. I just don't know what to think. I'm theorizing that her pituitary has completely quit making ACTH on it's own, it's gone to sleep as the tumor has taken over it's job. The problem with that is that when the tumor cycles off her pituitary isn't "waking back up" to fill in the gap anymore. After the BLA she is supposed to live on 25mg. of hydro a day, so I really don't get why she needs more than that now. Hopefully things cycle again soon and change. this isn't a fun place to be.

1 comment:

  1. Rene - I'm sorry to hear that Alex is having a difficult time. Just when you think you start to understand Cushing's, it does something to throw you for a loop again.
    Your children are lucky to have a mom who is dedicated to their well-being.
    Each day is a new day and some are better than others. Keep going & stay strong because those good days will be here again.