Wednesday, April 3, 2013

the new "white pill"

Keira started taking an extremely high dose of prednisone just days after the surgery to have her cancer removed.  

That was in October 2010. 

Monday, April 1st was Keira's last dose of prednisone.  We've been trying to wean her off this miracle steroid for 2 1/2 years.  Although we are very thankful that the prednisone was able to help suppress the antibodies that were attacking her brain, long term side-effects for these steroids, especially in a little person, are not good.  We worry about her developing cataracts, osteopenia, and loss of vertical growth to name a few.  

It's crazy to think that she's been taking daily medication for more than half of her little life!  I've tried all the pills and liquid medications that we subject her to and they are pretty bad.  

She NEVER complains.  

Every morning when Keira wakes up she comes out in her pj's, grabs her cup of syringes and takes her medication.  Every evening at dinner, same thing.  I was a little nervous about the change from prednisone to hydrcortisone, especially since this one is a white pill we have to crush and mix with yogurt, but no complaints.  

The hydrocortisone is going to be a daily steroid supplement until we can confirm that her remaining adrenal gland is once again producing steroids on its own.  I have no idea how long that will take or how they will be able to confirm that she's making her own steroids, but the doctors have reassured us that this steroid is minimal in comparison to what she has been taking and is most closely a match for what our bodies make on their own.

It's a little scary to think that we are done with the prednisone.  Keira's body responded well to it and it did what it was suppose to....  but now if she has OMS symptoms we will be in uncharted territory as the doctors do not want to go back to that drug.  We will continue to think positive thoughts that Keira's body is ready for this next step and that the dex pulses alone can suppress her OMS.