Rain can be a great thing. It keeps our grass green, it’s an Italian shower for cars, and it serves as an excellent excuse as to why we can’t take the kids to the zoo. But as we know, even too much of a good thing can turn ugly (much like my humidity averse hair). So why when it rains, must it always pour? Where are all the metaphoric sun showers at?
On January 6th, Rylie’s 8th birthday, Dylan and I had a follow-up appointment with his sleep doctor to review the results of his latest and greatest sleep study. This was his fourth polysomnogram within a year, so these follow-up appointments had become rather routine. To the doctor’s credit and as a testament to his professionalism, he always meticulously deciphered the results of the report for me, carefully decoding the technical jargon. Fortunately, I am now fluent in sleep so minimal translation is required.
As per usual, I expected to be bombarded with a laundry list of sleep irregularities, all of which are, unsurprisingly, indicative of narcolepsy and rarely shed any new light on his condition. Despite my sadistic tendencies, subjecting my four-year-old son to medical testing is not something I take pleasure in. Dylan’s former treating physicians seemed to subscribe to the Department of Redundancy Department methodology of medicine, repeatedly ordering tests only to confirm what we already knew – Dylan has narcolepsy. But Dylan’s current doctor I have the utmost respect for, so when he suggested another sleep study to see if the antidepressant meds were working as they should, to suppress REM sleep, I acquiesced and informed Mr. Bear he would be having another slumber party at the sleep clinic with Dylan. So I patiently sat through the follow-up appointment, only really half-listening much like I do when Mr. Bear complains about the rising cost of a bag of chips, a conversation we’ve had too many times, waiting to hear the same usual issues about Dylan’s poor nighttime sleep. I was also distracted by Dylan’s exceedingly gentle bashing of the nesting dolls the good doctor let him play with and wondering why he decided to crouch on the floor to play with them. So I’m sure you can imagine my dumbfounded shock when I heard the doctor say “it appears that in addition to narcolepsy and cataplexy, Dylan also has sleep apnea and periodic limb movement” immediately followed by Dylan declaring “Mommy, I pooed.” Not knowing which news to address first and forgetting my filter at the door, all I could think to say was “SHIT!” which, conveniently, killed two birds with one stone.
The Calm after the Storm
After I cleaned up Dylan, his doctor explained that although we’ve recently added additional meds to help with his nighttime sleep, his apnea and constant leg movements were essentially competing against the meds and waking him up almost every two minutes. Clearly, restful sleep will forever elude this boy.
Sleep apnea, in young kids, is usually attributed to enlarged tonsils and/or adenoids. Given that Dylan already had these vexatious glands removed at the age of three, in what can only be described as the most traumatic experience of my entire life, we have to investigate the possibility that they have grown back. I kid you not. As ridiculous as it sounds, it does happen and in fact, part of my own tonsils have re-grown, making this even more of a realistic possibility for my youngest cub. We are now waiting for an appointment with Dylan’s ENT (you know how much I love waiting for doctor appointments) to see if the adenoids have grown back, requiring surgery, or if his apnea can be treated with a nasal steroid spray. More drugs for my little druggie.
As for the periodic limb movement, that’s likely either a symptom of the Prozac (his most effective medication to date) or a symptom of low iron or both. After an enjoyable trip to the blood clinic, with absolutely no crying whatsoever, it was confirmed that Dylan was indeed low in iron. Cue intensive iron therapy for the next month (and accompanying constipation).
It seems we are now back at the beginning. If you’ve been following D’s journey through my blog, you’ll know that back in the summer of 2014, when we were first trying to figure out what was causing Dylan’s excessive daytime sleepiness, doctors initially assumed it was low iron. When we got his iron levels up and he was still chronically sleepy, doctors removed his tonsils and adenoids assuming they were causing sleep apnea. Of course, as we now know, neither of these assumptions were correct, instantly bringing to mind the proverbial “you know what happens when you assume.“