Preparing for a Sleep Study

Having children changed me in many of the same ways that motherhood has changed you; things which used to be a high priority (like a daily shower) seemed to find a lower priority level when parenting tasks took precedent. Contrary to the myth that parenting a child with special needs takes a special parent, I believe it is far less complicated than that; parenting a child with special needs just takes a parent. We all have our own talents and weaknesses, and through motherhood, those gifts are magnified and we figure out how to make the best with what we have.

The face of medicine and technology is changing at such a rapid rate that it can cause your head to spin – but with the assistance from the Down Syndrome Guild of Kansas City and our group of doctors at our local pediatric office, I have confidence that I will catch most of the medical recommendations for a child with Down syndrome.  A couple of years ago, the American Academy of Pediatrics issued a new guideline about sleep studies – it now reads:

“Discuss symptoms of obstructive sleep apnea, including heavy breathing, snoring, restless sleep, uncommon sleep positions, frequent night awakening, daytime sleepiness, apneic pauses, and behavior problems, that could be associated with poor sleep at each well-child visit. There is poor correlation between parent report and polysomnogram results.33,72Therefore, referral to a pediatric sleep laboratory for a sleep study or polysomnogram for all children with Down syndrome by 4 years of age is recommended. Refer to a physician with expertise in pediatric sleep any child with signs or symptoms of obstructive sleep apnea or abnormal sleep-study results. Discuss obesity as a risk factor for sleep apnea.34 It is recognized that access to a pediatric sleep laboratory or specialist may be limited for some populations and geographic areas” (Health Supervision for Children with Down syndrome, 2001).

My girls were older than the recommended age four baseline, but we talked with our doctors and ultimately decided it was the right path for us to take. If you find yourself preparing your child for a sleep study, here are a few of the things that were especially helpful to know: (Note: with regard to sleep studies, Children’s Mercy South is the hospital I am familiar with.)

Sarah R 020414First, prepare yourself:

  1. We had a preliminary appointment with a nurse practitioner from the sleep lab. During this visit, general inventory is taken; it was at this appointment that we officially decided to have the sleep study completed.
  2. You will be asked to keep a two-week sleep diary: the hardest part in a busy household, figuring out how long it takes your child to go to sleep.
  3. Your check-in time is dependent on bedtime (about 1 1/2-2 hours before bedtime).
  4. It will take 1-1 1/2 hours to get all the wires on. Abigail decided she looked like a ‘princess robot’ with all the wires she was wearing.
  5. Lights out for the child also means lights out for the parent who is staying with the child. There is a lobby available to use if you aren’t ready for bed when it’s lights out.
  6. You might want to plan to get a nap, an extra cup of coffee, or a quick jog the following day – whatever your preferred method of re-energizing since your sleep will probably be broken. I am a pretty heavy sleeper, but found myself waking and worrying that I was interfering (umm … embarrassing snoring) with the sleep study (though they did their best to reassure me that I was not).

Next, prepare your child (as best you can):

  1. As I said, my children were older, so putting on the wires was not a difficult task for them. We brought a new movie, though the conflict of ‘screen time’ before bedtime had passed through my head. Any favorite or preferred activity your child can do while sitting in a chair is great! The sleep techs answered all the girls’ questions about which wire went where and involved them in the process.
  2. Children’s Mercy has great resources with pictures and videos that you can preview with your child. We talked about staying at “Hospital Hotel” to reduce the fear.
  3. Children are allowed to wear their favorite pajamas and bring their own pillows and a special blanket or toy to the sleep study.
  4. Have a breakfast plan and make it special. In the morning, there will be a bit of time spent un-wiring your child and the glue they use to make the wires stay put is really sticky stuff; we chose to use the showers in the room so we were street-ready when we left the hospital.

When you are finished, it will take a few weeks to get your results since there are several thousand pieces of paper to analyze; unfortunately, the sleep techs won’t be able to tell you a whole lot about the night. Know that the waiting will be hard. If you suspect your child has obstructive sleep apnea, don’t wait to start that conversation with your child’s doctor. Of all of the procedures my children have encountered, this procedure was lengthy but perhaps the most enjoyable one. For more information, I encourage you to check out the Children’s Mercy Sleep program or talk to your child’s doctor.

Sarah Rotert
I grew up in Liberty, just a few blocks off from the square. After a brief stint at Iowa State University, hubby and I returned to the Northland in KC to welcome our twin girls into the world. Soon after we were parents to 2, we were parents to 3. And after a bit of a hiatus, we returned to infant hood with the birth of our 4th child. As our twin daughters have special needs, I changed my course of study and earned an A.S. in Sign Language Interpreting. We used American Sign Language as our primary communication for the first 2 years of their lives. Over the last 9 years since becoming a mom, I've learned (and am still learning) about childhood advocacy, living on budget, baby wearing, cloth diapering, figuring out how to plan/shop/execute yummy/kid-friendly/healthy meals. While we've been life long KC residents, we are continuously in awe of what this city has to offer.