Sleep Study – The consultation

Today, we had Nicholas’s sleep study consultation via telehealth. I was supposed to be in person which is why I took the day off, but I was afraid my laryngitis would scare them into turning us away, so we played it safe.

If I was going to take an entire day off, drive 45 minutes to the doctor, I certainly did not want to be turned away just because I sound like “uncle mommy” as my husband calls me now.

I set us up in front of the picture window so that the doctor could get a good look at Nicholas, got some blocks out to entertain him, and waited.

Waiting for our sleep study consultation!

Why schedule a sleep study consultation?

He doesn’t seem tired when he is learning, but I have gotten the occasional picture of him sleeping at school…

I scheduled this appointment months and months ago because during the winter when Nicholas is always congested, I was worried about his breathing.

Our rooms are across the hall from each other, and sometimes his snoring is just so loud. Sometimes, I would hear him gasping for breath and it would remind me of going to the movie theatre with my dad who has sleep apnea.

Then, I noticed that one of the other families we follow was taking their child with Down syndrome to have his sleep study done. I thought that perhaps it was time to get the ball rolling on ours. I knew some basic statistics about children with Down syndrome and sleep apnea and knew that we would likely be scheduled for one anyway.

If a child has sleep apnea, they don’t get a good night’s sleep which can make them tired during the day. I’m a teacher, so I know that a tired kid will struggle to learn as compared to a rested one.

I don’t want Nicholas to waste these two years of preschool waiting for nap time! This is our opportunity to level the playing field for public school!

Also, not to be selfish, but I knew that it would help my sleep as well! Moms, be real. If it sounds like your child is struggling to breathe, are you getting a wink of sleep that night?

No. No you are not.

What is Sleep Apnea?

When you stop breathing during the night for what could be a multitude of reasons, you have sleep apnea. Many people don’t even know that they have it until they share a bed with someone who points it out to them.

The National Down Syndrome Society (NDSS) has some statistics about sleep apnea and Down syndrome. The one that stuck out to me the most was that 60% of people with Down syndrome have an abnormal sleep study by the time they are 3.5-4 years old, and the occurrence of sleep apnea increases over time.

Nicholas is 3.5 years old. Time to get a good look.

If you want to get more information about sleep apnea and Down syndrome, here’s the link to the NDSS website page on the subject.

What happens at the consultation?

I spent about a half hour speaking with the doctor. I started by admitting that I’s almost cancelled this meeting all together.

For the last month or so, Nicholas has been sleeping like a perfect and quiet angel. I thought maybe that he just had a rough patch a few years ago and maybe it wouldn’t happen again. However, we have been on the list for a consultation for MONTHS, and I didn’t want to give up my spot.

Just so that you can be prepared for your child’s consultation, here are all of the questions that I can remember answering.

  • What is his sleep schedule?
  • Does he nap?
  • Does he snore?
  • Is his snoring loud and does it happen every night?
  • Is he tired throughout the day?
  • Does he take or is he allergic to any medications?
  • Does he have Mosaic Down syndrome?
  • Does he have bronchitis frequently?
  • Is he often sick?
  • Does he struggle to eat without choking?

So, do we need a sleep study or not?

The doctor, upon first look, doesn’t believe the Nicholas has sleep apnea. He did schedule us for a sleep study anyway.

He told me that he was happy I hadn’t canceled because this sleep study could reveal a lot of things to us. One of those things is that he may need his tonsils out.

He asked to see down Nicholas’s throat, which was a real struggle let me tell you.

I put him in a chair and faced him toward the window. The app that the doctors use wouldn’t allow the camera to flip, so I had to have it in selfie mode while trying to point it down his throat.

I kept asking him to say AHHHH because he likes working on his vowel sounds with me, but he was not opening his mouth wide enough. Then, I knew what I had to ask him.

Where is your tongue, Nicholas?

He stuck his tongue out as far as he could so that he could point to it. I took the opportunity to put the selfie camera as close as I could get it. I knew I had succeeded when I heard:

That was a good one, and yes, those look like some large tonsils.

I will be interested to know what else the study can uncover. I am waiting for an email that will contain our appointment time as well as tips on how to prepare. Let me know how you prepared for yours in the comments!

I will keep you posted throughout the journey!

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I was shocked as a new mom to find out that my son has Down Syndrome. I had no idea that my life would be changed for the better! Now, I am using my passion for writing to spread awareness and acceptance for people with Down syndrome.

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