I Was Surprised by the Results of My Son’s Sleep Study

It's not the news columnist Keara Engle was hoping for

Keara Engle avatar

by Keara Engle |

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My 4-year-old son, Cayden, completed a sleep study in October. We’ve been waiting for his pulmonary specialist to call with the results, and we finally received them.

While we didn’t get the news we were hoping for, I’m relieved that we were able to complete the study in a timely manner and see what’s going on while he sleeps.

Typically Cayden uses a BiPAP machine every night due to his weakened diaphragm, a common symptom of Pompe disease. I can’t imagine having to sleep with a mask on to help me breathe, but Cayden has gotten used to it as he’s been using the machine since he was just 10 months old.

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When the doctor called with the results, he said that Cayden would have to continue using his BiPAP. Although we were hopeful that he’d no longer need it, that’s not the case quite yet.

During the sleep study, Cayden tried sleeping without the BiPAP. The results showed that he had 58 obstructive sleep apnea events, which occur when the airway is blocked or obstructed. The events primarily occurred during REM sleep, a stage of sleep characterized by rapid eye movements and more dreaming. This was crazy to hear because Cayden only got 18 total minutes of REM sleep without the BiPAP. During these episodes, his oxygen would drop, waking him up a bit.

He also experienced a few episodes of central sleep apnea. This type of sleep apnea is a little scarier because it results from the brain not sending the correct signals to the muscles that help you breathe during sleep. Thankfully these episodes didn’t cause a significant decrease in Cayden’s oxygen saturation, which was reassuring.

His longest respiratory event lasted 25 seconds and caused his oxygen saturation to drop to 94%. The lowest his oxygen saturation dropped was 89%, and this episode lasted for nine seconds.

Due to all the sleep apnea events, doctors decided to place Cayden on his BiPAP machine about halfway through the sleep study. He showed improvements with the BiPAP and had fewer events.

These results were a bit shocking. I don’t want anything to happen to Cayden while he sleeps, so I’m glad his pulmonary doctor stays on top of things. I feel terrible that Cayden experiences so many episodes of sleep apnea and oxygen desaturation. It makes me grateful for the BiPAP. Now I’m in no rush to get rid of it!

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


Connie W Santroch avatar

Connie W Santroch

My granddaughter with Pompe was diagnosed with severe Sleep Apnea, the first Pompe symptom of her illness. Then my daughter brought her to a Pediatric Pulmonologist who said you can't apply an adult sleep test to an infant (the first sleep test was at only 6 months old, then redone at about 12 months old). So the Pediatric pulmonologist said to bring her back (a long 5 -hour drive for my daughter 1-way) and do a sleep study where they specialized in giving babies and toddlers and children sleep tests. In the sleep study, she wore a cap with wires and sensors inside the cap, instead of the adult sleep study where she had sensors and wires directly attached to her head. That sleep study showed she had no sleep apnea at all! My daughter and her husband were thrilled to get this news. I hope your child's sleep study was administered by a pediatric or infant pulmonologist, and not given an adult sleep study.

Keara Engle avatar

Keara Engle

Hello Connie, thank you for reading and sharing your story about your granddaughter. That's insane that the results differed so much. I am glad to hear that she does not have sleep apnea in the end. My son's sleep study was administered at a children's hospital, a very well-known one actually. He does have pretty severe sleep apnea. I notice when he takes a nap without his BiPAP that his breathing isn't as great. Thank you for the concerns and advice though, and I hope your granddaughter is doing well! :)


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