How Did We Get Here? June's Story, Part III (By Whitney)

Part III: August 2010- June, 14 months.

I went to get June from her crib one morning. I picked her up and smelled bad breath. Uh-oh...we know what that led to last time! But that must have been just a fluke, that wouldn't happen again.

June was fine all day and spent a few hours with close family friends while Tony and I attended a wedding reception that evening. We picked her up and on the drive home, we could hear her breathing. She sounded a little stuffy, but did not worry too much about it.

The next morning, June had a full-blown cold. Heavy, labored breathing, congestion, and mild fever. A temperature of 101-102 did not mean a lot to us because we had already been in the 104s! She was very clingy and seemed weak, but I thought, "well of course she is weak, she is sick." I called the nurse to ask what we could give June for a cold, and she gave us the typical instructions: humidifier, tylenol, liquids, etc. She asked me to describe June's behavior. She paused, then said, "It is okay for a baby to have a cold. It is okay for a baby to have a mild fever...but she shouldn't be weak." Meanwhile, I'm whispering to Tony..."I don't know, do you think she is weak??" I had mentioned that we were waiting for the test results on Addison's, but remember-I had not read about Addison's at this point, so I had no idea what it was. Based on what had happened in February, the nurse said she would feel better if we took June to the ER at Children's Hospital. I hung up the phone and sighed in disbelief. I couldn't believe we were taking June to the ER for a cold!

When we got to the ER all I could think was, "Oh geez, they think I am that parent! Here we are with a child with a cold...wasting their time...they think I am overreacting..." I admit, I felt a little embarrassed. With the help of the tylenol, June's fever had even come down to 99! Grrreeeatt...even the nurses think I am being ridiculous!

Pre-cortisol

When our ER doctor came to see us, I know he was thinking the same thing I was! He was oh-so-casual and hooked June up to an IV to hydrate her and said we would soon be taking her home. He left (probably rolling his eyes and wondering why we were taking up space in the ER). When he came back to check on June, I said, "I don't know if this has anything to do with it, but she is being tested for Addison's." Well, well, well...did HIS attitude change! He paused and said, "I'll be right back."

The doctor came back in, sat on the bed, and was much friendlier with us. He said he had spoken with Endocrinology (we were due to see them the following week) and that he would be admitting June.

We got the diagnosis the following morning. The endocrinologist overseeing our case was wonderful and really stressed the importance of understanding what all of this meant. She said that most likely, the February episode had been an Addisonian Crisis, and she was amazed that June had bounced back from it so well. She was also amazed at how well June had been ever since. Her cortisol level was below 1! Her ACTH was a whopping 3,006. And we would later find out that her aldosterone level was undetectable.

Post-cortisol

Just a month earlier, I had felt so silly asking our pediatrician about June's skin tone. In the hospital, our doctor looked me in the eye and said, "You asking about her skin saved her life." That statement took my breath away, and only at that moment did I finally understand what this all meant. I also tearfully thanked June's pediatrician for taking me seriously. He could have easily blown me off and said, "It's the middle of summer, you just got back from Phoenix, let's check her this winter." Everyone in the hospital told us how lucky we were, and now knowing more about this disease, I would have to say I agree.