Dylan
Introduction
This is the next of a series of vignettes about young people with adrenal insufficiency (AI) who experience unrecognized or unacknowledged symptoms of low cortisol — and the results of ignoring them. Our goal is to help you identify your/your loved ones’ signs of low cortisol and recognize situations that may deplete cortisol levels, so you may adjust routines and avoid serious health risks. In the rush of daily life, especially when we’re off of our usual schedule, it’s easy to lose track of time and miss an all-important dose of our medication. The consequences of missing a dose, however, can be serious. At best, we feel really, really lousy, and it takes a day or several to get back to our baseline. At worst, we could end up in a life-threatening adrenal crisis and be unable to advocate for ourselves. To prevent serious ramifications from missing a dose, it is important to be attuned to what our particular low cortisol symptoms are, be they foggy thinking, muscle and joint pain, clumsiness, or some combination. If symptoms start to appear, it’s time to ask: did I miss a dose, or might I need a small booster dose?
– By Susan Majka, NADF Secretary
Dylan’s Story
“This Christmas is going to suck!” fifteen-year-old Dylan said to her fourteen-year-old sister Maura. “I can’t believe we have to spend it in Colorado just because Dad has custody for this holiday.” Maura teared up and added, “And Mom is going to stay home all by herself. That just isn’t fair. I know Dad’s new wife is going to try to be all cuddly, and I hate her so much!”
Dylan was even more upset because she wasn’t going to be able to see her boyfriend of six months for the whole two weeks of vacation.
Dylan had been diagnosed with Addison’s disease nine months earlier, and her mother had helped her learn how to manage her medication, how to recognize when her cortisol was low, and when she would need to inject Solu-Cortef. Maura sat in on these sessions, and even practiced mixing and drawing up the medication. As she drove the girls to the airport, their mother reviewed all the signs and symptoms of low cortisol, how much to increase the dose, and when to use the emergency injection.
The girls had to change planes in Chicago, and their flight was delayed. At one point, it appeared that they might be stranded overnight, but an airline employee made sure they were on the last flight to Denver. When they landed, they spotted their father and his new wife, Ava, with their arms around each other. At one point, their father nuzzled Ava’s neck. “Yuk! I think I’m going to puke!” Dylan muttered.
The girls were sullen and quiet on the ride to their father’s house. Once they got to the room they would share for the visit, Dylan said she was not feeling well and needed to lie down.
Neither girl remembered that in the confusion over the flight delay and time change, Dylan had forgotten to take her cortisol. Maura left Dylan lying down and went out to try to be sociable with her new stepmother. Two hours later, when Ava went to wake Dylan for dinner, Dylan was achy, confused, and unsteady, and she began throwing up. “Oh, great,” Ava exclaimed. “Now we’re all going to be sick for the next two weeks. Thanks a lot for bringing the stomach flu into the house.”
Fortunately, Maura recognized Dylan’s symptoms as pre-crisis, and she gave her a shot of Solu-Cortef. Ava was so freaked out at having watched the whole episode that she insisted their father send them back home immediately. Their father refused to put Dylan on a plane so soon after her incident, so Ava stayed with her sister for a few days while the girls spent time with their father. However, the girls were back with their mother in time for Christmas Eve, and a Merry Christmas was had by all.
Questions
How many cortisol-consuming stress events can you recognize in this scenario?
[ANSWER:] Being upset at having to spend Christmas with the new stepmother; having to be away from the boyfriend for two weeks; traveling; nearly having to spend the night in the airport; missing a dose; experiencing a time change; seeing the father being affectionate with the stepmother.
How many symptoms of low cortisol can you identify in this scenario?
[ANSWER:] Feeling lousy, achiness, nausea and vomiting, fatigue, confusion, unsteadiness.
What actions might Dylan, Maura, or their mother have taken when she prepared for the trip?
[ANSWER:] Set an alarm on her watch to remind her to take her medication; increased her dosage of medication in anticipation of the stress of traveling.
What could Dylan have done to prevent some of these cortisol sapping events?
[ANSWER:] As stated in answer 3, increasing her dose in response to stress might have helped, as well as remembering to take her scheduled dose.
What did Dylan, Maura, and their mother do right?
[ANSWER:] They learned the signs of low cortisol; they optimized the usual timing of Dylan’s medication; they practiced mixing and drawing up the emergency Solu-Cortef; Maura kept her head, recognized the impending adrenal crisis, and administered the injection properly and timely.