The truth about sleep studies in children with Down syndrome
When your child’s sleep study technician waves goodbye with tears in his eyes at 4 a.m., your gut tells you the night’s work will not unveil the Holy Grail of why your child has sleep issues.
The night began with a lie. Three-year-old Charlie and I arrived at the sleep center at 7 p.m. and were greeted by our friendly sleep tech, Simon.
In my mind, Simon has become the ninja of all sleep studies — that is not the lie part.
The lie came when Simon said remorsefully, “I’m apologizing in advance, because this will be the worst night of sleep you ever get.”
Lies! All lies!
The truth is that as the parent accompanying your child to a sleep study, you will get no sleep. None, people. Not a blink. My overall advice is to nap during the day (yes, that makes me chuckle, too) and settle in for a night of too much caffeine, too much bad cable television and maybe, if you’re lucky, a couple of chapters under your belt from that book you never have time to read.
My son Charlie has Down syndrome. General guidelines state all children with Down syndrome should have a sleep study by the time they are 4 years old.
So, we went all in. The smartest decision I made was to give Charlie a buzz cut hours before the sleep study. While he hated the loud sound of the clippers, the payoff was not having to spend hours trying to get goop out of his hair at 4 a.m. (which is the time we arrived back home).
I don’t share my story to scare you. I hope it can help other parents, and I hope you'll share your own experiences or ask questions in the comments section below.
Lesson: Boring is good
I learned quickly that the evening needed to hold no excitement whatsoever to ensure my cherub would fall into a deep and peaceful-enough sleep to allow the technician to glean enough data.
When I say, “no excitement,” I mean no matter what happens or what snacks he says he has, do not — I repeat, do not — let the Daddy into the room when the child is moments away from real sleep.
Don’t do it.
I did it, and that was at 8 p.m. Charlie finally fell asleep closer to 11 p.m. So, what have we learned here? Mommy: Boring and conducive to sleep. Daddy: Exciting and not conducive to sleep.
Our ninja and the Kardashians
From there, the night was a series of ninja moves and block-and-tackle follow-up moves. Simon was the ninja, stealing silently into the room (which really was like a Holiday Inn without the sleeping part) to attach electrodes after Charlie fell asleep. One. At. A. Time. OK, sometimes two or three. It was a tedious process but an effective one, because Simon managed to attach all necessary electrodes — including the sensor that goes directly under the child’s nose — without waking up the victim... I mean, patient.
Truth: You will have a moment of, “Dear God, what am I doing to my child?” It’s OK. Step away from the crib/bed and get more coffee.
Sidebar tip: Note the sleep techs’ refrigerator contents — they are masters of coffee paraphernalia and I am now hooked on Coffee-mate Italian Sweet Crème.
Between cups of Italian Sweet Crème — I mean, coffee — I did a lot of hovering. I hovered over Simon, who hovered over Charlie, ready to swoop in and calm an awakened child. Now and then, he would stir and sleepily brush at the electrodes and wires. I tried to comfort him and rock him, keeping his hands away from the web. It wasn’t easy but I was successful.
Deep asleep, then wide awake
Or rather, I was successful until I trusted the words, “deep sleep.” When Simon trotted back to tell me Charlie had entered the sleep cycle that was deepest, I silently cheered and pranced to the empty room across the hall, where I spent 20 minutes posting dramatic testimonials on Facebook and watching something on TV involving a Kardashian.
And then it happened — screams, sheer terror and a little boy who was more than done. As I held him and tried to console him, Charlie clawed at the web of wires around him, tangling his limbs and the wires beyond repair.
I don’t remember an official “OK, we’re done here” decision, I just remember looking at Simon and saying. “OK.” Nothing more was needed and he carefully and gently removed the electrodes as Charlie began to calm somewhat, still looking wildly around the room as if to say, “OMG, the aliens got me.”
Second smart move
It was not my proudest moment as a mother, but I knew we had acted in our son's best interest. We were home and on the couch watching the Wiggles by 4 a.m. Thankfully, my husband stayed home with our daughter and was able to get up with the kids as I collapsed and slept the morning away.
The second smartest decision I ever made — I scheduled the sleep study for a Friday night. No, it's not the height of excitement, but having your spouse home on Saturday to cover is awesome.
Was it worth it?
When we received results of the sleep study, we were amazed to discover Simon had culled enough data to determine Charlie has neither sleep apnea nor periodic limb movement disorder. Phew.
Our sleep specialist offered to repeat the study to learn more. We politely declined, for now.
Deferring to ENTs
In fact, not all physicians feel a sleep study is automatically warranted. One physician asked to remain anonymous because of a policy against speaking to media without prior authorization. This individual said the prominent practice convened its pulmonologists, ear, nose and throat (ENT) doctors, and geneticists to discuss the specific recommendation that every child with Down syndrome has a sleep study by 4 years old.
"We ultimately left the ordering and follow-up of a sleep study to the ENTs," the medical professional shared, citing the following reasons:
- Results of sleep studies are often "borderline," making a next-step decision difficult.
- If study results are abnormal and CPAP is recommended, it’s often difficult for the child to wear the CPAP mask throughout the night.
- If study results are abnormal and surgery is recommended (i.e., removal of tonsils or adenoids, or both), the ENT doctor would perform the procedure.
"Rather than have all children with Down syndrome undergo a sleep study, we felt it would be best for it to be done on an individual basis, mostly based on the patient’s sleep history and symptoms (e.g., activity level, snoring, apnea, restlessness) and physical exam (e.g., tonsils, airway issues).
"We certainly understand the importance of the sleep study and feel that for most patients a sleep study will be performed, but [we] are not certain it is necessary for all patients."
Tamara’s son is 4 1/2 years old. Several months ago, she and her husband received the results of their son’s sleep study. "We found out [he] has mild apnea and it occurs when he is in his deepest sleep. So I guess it makes sense that he is waking up around 3 a.m. and calling for me."
She says she now elevates her son’s bed not because she’s necessarily sure it’s helping, but “it makes me feel better to try anything and everything!”
The sleep study also showed her son has periodic limb movement disorder.
"That we knew," she says. "If you have ever slept in the same bed as this child there is no doubt in your mind that he has some form of restless leg! It is a constant flurry of limbs!"
He has begun treatment with a drug called gabapentin, which Tamara says "seems to help calm him. It doesn't put him to sleep or keep him asleep but it helps with the thrashing! And hey, we take what we can get right?"
Remember Terri from our first article on sleep studies? Her daughter does not have apnea but likely has Periodic Limb Movement Disorder, which is characterized by more than four movement-related awakenings during an hour of sleep.
While iron supplements sometimes can help, they can take several months to take effect. At the time of our first article, Terri was waiting to see if the iron supplements work on the condition.
Today, she says, "I'm not sure if they ever did. I haven't seen a marked improvement in her energy levels, although, she recently has decided weekend naps are a no-go." Their next step may be a follow-up with her daughter’s sleep specialist.
While these are just a few real-world experiences and results, don't give up — and always communicate your concerns with your child's pediatrician. Sometimes, the trick is to just keep trying.