Obstructive sleep apnea or OSA, is a common medical issue especially in kids born with Down Syndrome. Given this, at some point many of us will have to take our children for a sleep study. Max has had to do two sleep studies so far. 

Any medical procedure can cause anxiety for children…and Mom too! This one can be especially difficult because it involves spending the night somewhere strange and unknown. Plus, your child feels fine! They don’t feel sick so it can be hard for them to understand why they have to go to a hospital or sleep center to get a test done!

Luckily, there are things you can do to help make the sleep study as pleasant as possible. First though, let’s understand a little bit more about sleep apnea. 

What Is Obstructive Sleep Apnea?

According to the Mayo Clinic, obstructive sleep apnea (OSA) occurs when the throat muscles relax and block the airway. This happens off and on many times during sleep causing people with OSA to repeatedly stop and start breathing while sleeping. 

Signs and symptoms of OSA once again, according to the Mayo Clinic are snoring, observed episodes of stopped breathing while your child is sleeping, mood changes in your child, high blood pressure, trouble focusing, excessive daytime sleepiness, waking up in the middle of the night gasping/choking, morning headaches, or waking up with a dry mouth/sore throat. 

One thing the Mayo Clinic doesn’t list but I do know about are weird sleeping positions. These include sleeping sitting up, sleeping folded over, or with the head/neck tilted WAY back. As I said, Max has sleep apnea and he’d scare the you know what out of me when I would walk into his room expecting him to be laying in bed sleeping and instead he’s sitting there!

Why Are People With Down Syndrome Prone To Have Obstructive Sleep Apnea?

I always knew kids with Down Syndrome are much more prone to have OSA but I was surprised to learn how much more! According to the National Down Syndrome Society, studies suggest 53-76% of children with Down Syndrome have sleep apnea compared to 1-4% of the rest of the population. 

Wowza!

The reason for this is multifactorial and may be due to the following according to NDSS…

• Facial structure differences

• Narrow airway in the nose and throat

• Low muscle tone

• Poor coordination of airway movements

• Obesity

Is it just me or does low muscle tone seem to impact so much for our kids! Speech, their ability to sit/stand/walk/run, their ability to write/type, and now this!

Aiy aiy aiy! 

What Is A Sleep Study?

Using the Mayo Clinic again as a source, a sleep study, also known as a polysomnography, is a test used to diagnose sleep disorders. It records your brain waves, the oxygen level in your blood, measures eye and leg movements, and records your heart rate and breathing during sleep. A sleep study is used to diagnose OSA and it can also be used to adjust treatment for OSA. 

What Is The Treatment For Obstructive Sleep Apnea aka OSA?

The National Down Syndrome Society does a really nice job laying out the potential treatment for obstructive sleep apnea. Previously, the two main treatments were removal of tonsils and adenoids and then CPAP/BiPAP use. 

Taken from the NDSS website...

CPAP: A machine that delivers a steady stream of oxygenated air through a flexible tube to a mask sealed around a person’s nose and mouth. The airstream pushes against any obstructions, maintaining an open airway for breathing. CPAP machines are primarily used to treat OSA. 

BiPAP: A machine that delivers a stream of oxygenated air at two pressures: an inhale pressure and an exhale pressure. It is used for individuals who cannot tolerate CPAP machines and to treat central sleep apnea.

Max had his tonsils and adenoids removed at a very young age. He was 2 years old. Now as a teenager Max’s OSA is being treated by a CPAP machine. 

A relatively new but seemingly promising treatment is hypoglossal nerve stimulation. This is where a medical device is implanted and electrically stimulates tongue movement while breathing. 

Tips From A Mom To Prepare For Your Child’s Sleep Study

Ok so now that we have a bit of a background on what OSA is and why people with Down Syndrome are prone to it, what a sleep study is, and treatment options for OSA let’s move on to tips to prepare for a sleep study. 

If you have a child with Down Syndrome you’re more than likely going to have to do a sleep study at some point and will want to know these tips!

Sleep Study Mom Tip #1 Leading up to the sleep study, talk about it and make it sound fun.

Start talking about the sleep study about 4-6 weeks prior. Mark it on the calendar with your child and present it as an adventure where you’re going to go sleep somewhere else. Tell your child it’s an adventure just the two of you are going to do together or whomever is going to be with your child…maybe Dad is going to go!

Sleep Study Mom Tip #2 Read a social story and/or watch videos in preparation.

Start reading a social story together or watching videos on YouTube so your child knows what to expect. Tell your child you have to learn about the adventure you’re going to go on. I would start reading the social story or watching the videos once a week 4-6 weeks prior to the day, then twice a week about 2-3 weeks prior, then every night the week leading up to it. Boston Children’s Hospital has a social story you can use.

There are also several videos available to watch on YouTube. Here are two to consider.

Sleep Studies for kids at The Children’s Hospital of Philadelphia

What to Expect at Your Pediatric Sleep Center Appointment at St. Louis Children’s Hospital

Sleep Study Mom Tip #3  Pretend to put on electrodes and sensors.

After reading the social story or watching a video about the sleep study, have your child practice by putting stickers on their head, their legs, and wrap tape around their finger. You could wrap an ace bandage around their chest too, obviously do not wrap it around tightly. If this is too hard for your child starting out then have your child put stickers and tape on a favorite stuffed animal.

Sleep Study Mom Tip #4 Pack your bag together. 

Have your child help back the bag or bags you’re going to take to the sleep study. It’s part of getting ready for the adventure! You could even create a checklist and have your child check off the item as it’s packed so they feel really involved. 

Sleep Study Mom Tip #5 Follow your child’s regular bedtime routine as much as possible.

Bedtime routines are important. As we start to do our regular bedtime routine it’s sending messages to our brain that it’s getting close to bed and we’re going to be sleeping soon. Keeping to your child’s routine as much as you can is key. 

Sleep Study Mom Tip #6 Bring snacks and drinks.

If your child is used to having a bedtime snack or glass of milk before bed you’re definitely going to want to bring these things. Most sleep centers do have a fridge to keep things cold as well as a microwave to heat things up if needed. You should check with the center though before the study. 

Sleep Study Mom Tip #7 Bring your child’s favorite stuffed animal/lovie.

This one is very important. Do NOT forget your child’s favorite lovie or stuffed animal that they sleep with every night.  The point of a sleep study is for your child to sleep and if you’ve forgotten their favorite lovie, instead of sleeping they’re going to be melting down! 

Sleep Study Mom Tip #8 Bring a toothbrush, toothpaste, wash cloth etc.

This goes back to the concept of sticking to the bedtime routine as much as possible. For most kids part of the bedtime routine is going to be brushing their teeth. I also bring a washcloth to wash my own face before bed.

Sleep Study Mom Tip #9 Bring any evening medications.

I know this seems like a no-brainer but it’s one of those things that can be overlooked when you’re stressed and running around trying to get things together. Don’t forget to bring yours or your child’s evening medications.

Sleep Study Mom Tip #10 Bring a night light and/or sound machine.

If your child sleeps with a night light or sound machine be sure to bring it and use it.  

Sleep Study Mom Tip #11 Bring a weighted blanket.

Many kids use a weighted blanket at night. If your kid is one of them, bring it. 

Sleep Study Mom Tip #12 Bring an I-pad/tablet.

Max struggles when they’re putting all the sensors on him so we use the I-pad as a distraction. Phones would work too.

Sleep Study Mom Tip #12 Bring a book to read.

Bring a book to read before bed to help your child fall asleep. Let your child pick out which book or books they would like to bring. 

Sleep Study Mom Tip #13 Have your child shower/take a bath before the study and don’t put lotion on.

Have your child take their bath or shower before you head over for the sleep study. Don’t put lotion on though because sensors may not stick as well. 

Sleep Study Mom Tip #14 Keep napping to a minimum the day of the sleep study

You want your child tired for the sleep study. If they take two naps a day try to skip the afternoon nap. If they only take one nap a day, keep it short.

Sleep Study Mom Tip #15 Do not let your child have caffeine the day of the sleep study.

In order to make sure they’re as tired as possible and will sleep for the study, do not let your child have caffeine the day of the sleep study. Remember, chocolate has caffeine in it. 

Sleep Study Mom Tip #16 If your child may wet the bed be sure to let the sleep tech know. 

Many kids may wet the bed. If this is a concern let the sleep tech know so they can put an extra layer of protection down. 

Sleep Study Mom Tip #17 Bring a pillow and blanket for yourself. 

Every sleep center is different but the sleep center we went to had a hard chair that pulled out into a bed for the parent. There wasn’t a sheet, blanket, or pillow in sight. I brought a comfy blanket and my own pillow. 

Sleep Study Mom Tip #18 Be prepared not to sleep.

As a parent, be prepared not to sleep. If you’re a working parent, plan on taking the day off after a sleep study. The pull out chair I had to sleep on was not comfortable. The sleep tech had to come in a few times to adjust things on Max while he was sleeping which woke me up and then we were up at 5 am to head home. I took the day off of work because I was exhausted. 

Sleep Study Mom Tip #19 Bring a reward board.

You know your child best and if you think putting on the sensors and electrodes is going to be a struggle then bring the reward board along with a reward. We did this for Max’s first sleep study when he was younger. While it was not a fun experience, having the reward board AND the I-pad for distraction made it do-able. 

For Max’s second sleep study when he was older we didn’t need the reward board, just his phone for a distraction. 

Sleep Study Mom Tip #20  Avoid caffeine for yourself the day of the study.

I’ve already told you to be prepared to not sleep during your child’s sleep study. If you want to sleep a little bit then I would advise you to avoid drinking caffeine yourself. If you have a morning coffee/pop/tea then perhaps don’t drink caffeine after noon that day. 

Sleep Study Mom Tips #21 Bring diapers and wipes. 

If your child isn’t potty trained don’t forget the diapers and wipes! If your child may have an accident since this can be a stressful situation then be prepared with extra clothing, underwear and wipes!

So there you have it Mama Bears! My tips and tricks to help you and your child prepare for a sleep study. 

Of note, a parent does have to be present at the sleep study the entire time. You are allowed to leave the room for a little bit to look at your phone etc as they discourage any electronics in the room once the sleep study has started.  

Also, you are NOT allowed to sleep in the bed with your child. You can snuggle them initially to help them fall asleep but once they’re asleep you have to exit the bed. 

Hey Mama Bear, if you found this post helpful then you may want to check out…

5 Tips To Get The Most Out Of Your Child’s Medical Appointment

6 Brain Differences In Your Child With Down Syndrome And How It Impacts Behavior

Dandelion Tribe Takeaway: Obstructive sleep apnea or OSA, is a common medical issue especially in kids born with Down Syndrome. At some point, most of our kids will need a sleep study. A sleep study can be tough but these tips are sure to help!

Mama Bear Share: Has your child had a sleep study? What tips do you have?