Today was our much anticipated endocrinology consultation!
KayTar was looking fabulous, as usual.
When we got on the elevator up from the parking garage, we walked into a cloud of men's cologne. Very stinky cologne, according to KayTar. She grabbed her nose and exclaimed, "Ooooh, something STINKY is in HERE!" I tried to shush her, but she continued to lament the odor until the man left the elevator on the ground floor. We continued upwards, exited that elevator, and walked down the hall to the next elevators we needed. While we walked, I told KayTar that the smell was probably someone's cologne and instead of shouting about it, she should just try not to sniff it, quietly. The doors opened and Stinky Man was standing there. Uh oh! We got on the elevator and KayTar exclaimed, "Ugh! This elevator stinks, too!!" Whoops, so much for that conversation we just had! I wonder if Stinky Man took the not-so-subtle hint. ;)
The actual appointment went great. KayTar is such an old pro at specialist visit, I never have a rough time with her. She's well behaved, patient, and loves the opportunity to talk to the doctor. The only time she gets a little bored is when I'm talking and she doesn't get a turn for a while. The girl looooves an audience. Her height is 41.89 inches, and she weighs 38.36 pounds, according to their scale. The endocrinologist agrees that we're on to something. She was impressed by my record keeping (they asked us to check KayTar's glucose each morning and prior to every meal, and I've been tracking that and her intake religiously for a few weeks) and now we get to give it a rest. Hooray! We'll continue to check her glucose when her she gets sick or shows hypoglycemic symptoms, but we don't have to follow it quite so closely.
The plan is this:
First, they have to rule out adrenal insufficiency. They don't expect it to BE adrenal insufficiency, but it is the first thing they need to rule out. On the 21st, she has to have an adrenal stimulation test. Also, until then we have to treat her like she has it, so I had to be trained to give her an IM injection of Solu-Cortef, which we have to keep on hand in case she becomes unresponsive. It is all precautionary and they feel like it is a non-issue. She did say that KayTar's long term use of Qvar (inhaled corticosteroid for asthma prevention) is a risk factor, though, but it only causes adrenal insuffiency very, VERY rarely.
Second, I have to make KayTar an appointment with a new geneticist (at our same clinic) who specializes in hypoglycemia, so she can be worked up for genetic causes, such as the glycogen storage diseases (especially type 0).
Third, it looks like she'll need to do an inpatient fast, which sounds like LOADS of fun. No food or drink (other than water) for as long as it takes for her to become hypoglycemic, so they can take blood for all the labs they need from her when she is symptomatic. It could be 12, 18, as many as 24-36 hours in some cases. I'm pretty sure KayTar will be on the early end of that scale, but when she starts to feel hypoglycemic, she gets panicky and DEMANDS Pediasure or another form of energy. She gets shaky and shouts, "I need energy! Get me energy now!" Of course, this doesn't happen when she is sick and slips into hypoglycemia...but when she's healthy she recognizes that sensation. I don't look forward to denying her that when she is in a panic, but we do want to diagnose this and treat her appropriately.
After all of that, if it is all normal, we'll come out when a diagnosis of ketotic hypoglycemia, if nothing else. It is a diagnosis of exclusion, so first we have to do the excluding. If we find an answer along the way, that would be mighty fine, too.