Tuesday, January 10, 2012

More problems with her legs and feet.

We know something is going on that is causing A to have problems after sleeping, mostly with her hands and feet. But several times now we've had episodes where she can't use her legs at all... and I finally caught it on video this morning.

In the first video, she wants to come crawl to me but she can't move her legs well enough, so she just picks at them and cries.


Finally, in the second video, a few minutes later she scooches over to me dragging one leg underneath her. She normally crawls up on all fours very stable and fast.

My biggest concern right now is that she's been having some sort of permanent damage to her hands from it. She still can use her thumb independently but the rest of her hand is not communicating well with her brain. She cannot push buttons or isolate any of her fingers. They are swollen, discolored and limp alot of the time. I thought maybe they were just falling asleep but now she's not regaining the use of her hands very much at all.

You can see here how much her index and middle fingers are starting to grow sideways and hang off her hand. You can also tell how the purple discoloration is only in certain parts of her hand.
You can almost see a straight line separating where her ankle and foot are a normal color and where the purple begins.


  1. You don't know me but I'm from bbc November 2010 and May 2012. This must be so heartbreaking for you! Poor thing can't even crawl to you when she wants. :( I pray every night that you can get some answers!

  2. I'm so sorry that your daughter is having trouble. Have you looked into Raynauds syndrome. It can happen as a secondary to another disease process, but will show some of the features that you are seeing with Addison's hands and feet.

  3. Awe, I hate how upset she is that she can't crawl! Praying for you guys.