Sunday, May 15, 2011

Surviving a sleep study

This is a definition of sleep apnea that I found here:, on Wikipedia: a sleep disorder characterized by abnormal pauses in breathing or instances of abnormally low breathing, during sleep. Each pause in breathing, called an apnea, can last from a few seconds to minutes, and may occur 5 to 30 times or more an hour.[1] Similarly, each abnormally low breathing event is called a hypopnea. Sleep apnea is diagnosed with an overnight sleep test called a polysomnogram, or "sleep study".

It is hard to say how many people with DS are affected by sleep apnea - in the research I have done, I have found statistics anywhere from 45 to  over 90 %.

There are 2 kinds of sleep studies - a level 2 which in my daughter's case involved hooking up about 30 wires all over her body, & a overnight pulse oximetry test which involves only a few wires.

Sleep studies are no fun.  My daughter has had a few, but thankfully only one level 2 sleep study.  Here are some of the things that were helpful for us:

1. 2 piece, footed pajamas to make it easier to get all of the wires in place.

2. A stretchy hat  to put in place over the  wires on her head.

3. Stretchy socks to go over her feet & any wires that are attached.

4. Favorite portable DVD player & DVDs, even if you don't have a portable DVD player, bring some DVDs anyways in case they have one there, books, iPad or similar if you have such a thing, or anything else that  will distract her.

5. Favorite quiet toys or books

6. One thing that really helps my daughter is to explain the procedure beforehand, even for kids who are quite young and may not understand it all, because often our kids understand more than we think they do, & it can't hurt to try.  I have even found photographs & made them into a little book for my dd to explain medical procedures to my daughter.

7. Favorite snacks - several different ones,  & ones that take a while to eat - this is a great time waster as much as anything. I tried to make sure dd was a little on the hungry side when we started attaching wires.

My daughter has not had to have very many procedures such as this done, but I am very fortunate that somehow she always seems to come through with great behavior when it is really needed.  She has been really good for all of her sleep studies & so patient & tolerant about hooking up all of the wires.

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