Monday, August 1, 2011

The List

We have been on a roll, with one thing after another for several months now. We started synthroid, growth hormone, ear tubes, endless doctors's exhausting! Everything we are doing for Pnut is working and all the stress leading up to each test, appointment or procedure pays off ten-fold. However, the other day Jason said to me he feels like we are constantly checking things off "the list" and our list seems never ending. 
Ella checking things off her grocery list!

Once the ear tube surgery was scheduled, the hope and expectation (for me anyway) was that things were finally slowing down. Then we got the call from our endocrinologist just before her surgery. The blood work that Ella had done in early July shows that her cortisol levels are low. Cortisol is commonly known as "the fight or flight" hormone. It helps our bodies fight stress....everything from a common cold to a traumatic injury. Ella's levels came back at 2.5 (normal range is above 4). For this reason, she had to have a hydrocortisone shot prior to surgery. This ensures that her body has enough cortisol. It was a crucial precaution because a person can not live without enough cortisol. Ella's apparent deficiency is due to the hypopituitarism.

A synthetic form of cortisol is available. It comes in a pill form and would go along with the hormone replacement therapy that Ella is already on. The issue with cortisol replacement is that once you start this therapy, it can not be stopped. As soon as you give the body the synthetic version, the body stops producing the hormone all together. We have known since Ella's initial diagnosis that we would constantly be monitoring all of her hormone levels and cortisol has always been on the radar for our doctors, however even Dr. Gleason (pediatric endocrinologist) felt we wouldn't be going down this road just yet. It's not a bad thing, just one of the unknowns we will continuously battle.

On Tuesday morning, we will head to Albany Med (again) for an ACTH stimulation test. It takes about two hours and requires several blood draws. This will help us determine if Ella's cortisol is low or if the first results were a circumstance of when the blood was drawn. Cortisol levels fluctuate throughout the day. We have checked cortisol several times when Ella has had a nasty virus, etc and everything has been fine. Jason and I are hopeful that things will be fine this time as well. The longer we can hold off on cortisol replacement, the better.

We are confident that the doctors will help us make the best decision possible for Ella. We'll check another thing off the list....and stay optimistic that the list takes a break for a while! I hope that Ella has little memory of any of these tests and doctors visits. She is such a happy kid and takes everything so well. We are so lucky and learn new strength from her every day!
Who needs toys when you can have fun with pot holders!

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