4 + 2 = 1: Cortisol Test

Part of septo-optic displaysia is cortisol dysfunction. Cortisol is needed for a body to know to kick into gear if it gets sick or stressed. That is a verrrrry simple definition. You need to have a score of 18 in order to be deemed "safe." Asher's scored a 7 on his test. That is in the dangerous zone. Once again Dr's were kind and 2 days later, Asher was scheduled to undergo a lengthy test to see how his body reacts to having his pituitary and adrenal glands tricked into making cortisol. The test would take 3hrs and involve Asher not eating or drinking (2 of his favorites) from midnight to about noon. If you know Asher, you understand what a challenge this was going to be.... But since this is a life-threatening concern, it was top priority.

I got to take him for this test- up to this point, Al had taken him for most of the testing. We arrived at the Children's Hospital at 8:00am and checked in. We were sent to the 4th floor where we had to wait for almost 2 hours to actually start his test. It was a small room with 4 armchairs. There were 2 other kids there- each having a test that Asher will probably have to have- growth hormone and glucose. Asher was sweet and happy despite being incredibly thirsty- which is a part of another disorder he has. The best part- the window in the room overlooked a major bus stop for the local medical college- lots of busses coming and going- and a construction site! This little boy was thrilled!

When it was finally his turn- at 9:45am- he gave one little simper when the port was placed in his hand. That was it. The test involved taking lots of blood- over 5 vials worth- over the span of 3 hours. He was given medications to see if his pituitary gland would create cortisol and then if his adrenal glands would respond. He did great. Watching out the window, watching the movie Shaggy Dog, working on his ABC puzzle, and eventually napping, helped pass the time. He was such an amazing little man! I enjoyed getting to just snuggle and comfort him- and he loved being the center of attention! Once the test was over, he drank 32oz of water- yes, 32oz- and peed very little of it out- and enjoyed his snack. When we got home, he passed out and took a 2hr nap- poor little guy!

We actually got results later in the day- which I need to discuss further with the Endocrinologist. She said the good news is that he is no longer considered cortisol deficient- his baseline went from a 7 to an 11. I'm not sure how that is still deemed "safe" and she said he needed to be an 18! 11 and 18 are not the same. Even our Pediatrician is still concerned. Evidentially what is "normal" can change.... At least it seems like it's good news- that his body does respond appropriately to being sick. It still means we have to monitor him- he can get very sick, very quickly.

The next test should be the growth hormone- which will be just like the cortisol one, but longer.... We are thankful for the kind and compassionate doctors and nurses who continue to make Asher a priority- the people who were with us during the cortisol had waited 2months for their appointment and we waited 4 days!