Monday, October 3, 2016

Down syndrome and Obstructive Sleep Apnea

Obstructive sleep apnea is a common problem with Down syndrome, and one we are fully aware of in my house. defines obstructive sleep apnea (OSA) as a, "Condition in which breathing stops involuntarily for brief periods of time during sleep. Normally, air flows smoothly from the mouth and nose into the lungs at all times. Periods when breathing stops are called apnea or apneic episodes. In OSA, the normal flow of air is repeatedly stopped throughout the night. The flow of air stops because airway space in the area of the throat is too narrow."

Individuals with Down syndrome have low muscle tone, which means the muscles in the mouth and upper airway are more floppy. An enlarged tongue and smaller airways all also factors for these individuals when it comes to sleep apnea. For this reason, sleep studies are often recommended for individuals with Down syndrome, especially if there are any concerns. You can learn more about this topic on the NDSS website.  

Here's our story:

Jaycee was diagnosed with obstructive sleep apnea when she was 3 years. At the time, her cardiologist was concerned that her pulmonary pressures were higher than expected. This could have been caused by her congenital heart defects or obstructive sleep apnea. A sleep study was then performed to make sure further heart testing would not be needed. That first sleep study was not fun, but that story is for another time.

Jaycee was diagnosed with OSA after that first sleep study. Her tonsils and adenoids were huge, so the diagnosis was no big surprise. She underwent surgery to remove the tissue. A sleep study was repeated weeks after the surgery to make sure her OSA was "treated" with the removal of her tonsils and adenoids. To my surprise, she still had OSA.

Jaycee hooked up for a sleep study

When she was 3 years, 10 months old, we started trying c-pap with Jaycee. She is now 10 years old and has progressed to needing a bi-pap. Today, Jaycee tolerates her mask and machine well. But, it was a very long road to get to this point. It took trying multiple masks, changing from c-pap to bi-pap, and simple maturation to get her to wear her mask and keep it on all night long. I feel for any family who is trying to get their small child to tolerate wearing a c-pap. It is very challenging!

With Jaycee wearing this mask for 7 years now, it has become our norm. She treats her mask and hose almost like a teddy bear; it is just a part of her nighttime routine. That being said, the bi-pap has created some issues in Jaycee's life.

Here's a few ways OSA and bi-pap use has impacted us:

-There are no spontaneous sleepovers. If you are at grandma's house late in the night, you cannot all of a sudden decide to let your child spend the night. There isn't an extra bi-pap laying around their house for her.

-If your child wants to spend the night somewhere, the temporary caregiver must be trained on how to use the bi-pap. Honestly, who wants to do this!? Apparently just my mom, since that's the only person who has let her spend the night.

-When you travel overnight, you have to pack the machine up in a little bag. You also have to make sure you have distilled water to put into it if you use a humidifier.

-What about date nights for the parents? Well, the date must end early before your child goes to sleep unless your sitter is trained on the machine. This is the reason why my husband and I mostly have lunch or afternoon dates, which are still quite rare.

-There is no more of your child cuddling in bed with you and sleeping there a few hours. They can't because if they do, they won't be able to breathe safely.

-Mom (or sometimes dad) cannot go to bed until the child is on their bi-pap and fast asleep. There's no more coming in late and everyone settling into bed at the same time at my house. You have to help your child get her mask on. Jaycee goes to sleep much faster now. When she younger though, I would sometimes be waiting her out for an hour to get her mask on properly. I'm glad those days are behind us.

-You have to make space in your child's bedroom for the bi-pap. Since it uses water, the space has to be "safe" from falls. We have always put Jaycee's bi-pap in a drawer of some sort to keep it contained and secure. In hotels, we generally put in on a chair and stack pillows around the machine to keep it from crashing into the floor when she moves all over the bed at night.

Jaycee's bi-pap secure in a drawer

-You have to clean the parts weekly and remember when it's time to reorder new parts. That's a job that falls to me.

-You must memorize your child's bi-pap settings or write them down and carry it with you. If your child is in the hospital, you will have to know this information. I can't remember the numbers, so I keep this on her health history sheet that stays in my purse.

Obstructive sleep apnea is something that many families must deal with, ours included. Some adjustments must be made, but thankfully there are treatments to help with this condition. Every parent with a child with Down syndrome needs to understand the risk factors, signs of OSA, and discuss any concerns they have with their doctor.

This post is for Down syndrome Awareness Month where bloggers write for all 31 days of October for Trisomy 21. I am part of this 31 for 21 challenge. During the month of October, the NDSS asks that we celebrate people with Down syndrome and make others aware of abilities and accomplishments. Individuals with Down syndrome have abilities that need to be celebrated!

No comments:

Post a Comment

submit to reddit