Thursday, May 9, 2013

PWS Awareness Day #9: Sleep apnea

Dean doesn't get a rest from PWS, so neither does awareness...

Obstructive and central sleep apnea plague many people with PWS and untreated sleep apnea is often the cause of (or part of the cause of) death in PWS. Obstructive sleep apnea (OSA) is simply that, when there is an obstruction in a person's airway that impedes breathing while sleeping. This is common in PWS because of low muscle tone (there it is again) and often, obesity. Central apnea (CSA) is when the part of the brain responsible for controlling respiration does not work properly during sleep and the person stops breathing intermittently.

With either type, people with apnea stop breathing as many as 100 times in an hour. Yes, you read that correctly. Sleep studies are done to assess a variety of parameters during sleep, including sleep apnea.

Both kinds of apnea are often associated with drops in oxygen saturation, and apnea is linked to greater stress put on the heart and lungs, all of which have long-term health repercussions (especially if untreated). Other effects of apnea include daytime sleepiness, attention problems, and irritability. Treatment for OSA usually involves removal of the tonsils and adenoids, and if that does not alleviate the OSA, treatment with a CPAP or BiPAP machine is needed during sleep. These machines force pressurized air in the person's nose to keep their airway open. For CSA, the treatment is often supplemental oxygen during sleep and/or CPAP.

For Dean and our family, this has been one of the most troubling aspects of PWS. Dean has had I think 11 sleep studies (I've lost track) and has had/has both CSA and OSA. Currently, he is on BiPAP each night to treat the residual mild/moderate OSA that persisted even after a tonsillectomy/adenoidectomy. Before the surgery, Dean was having drops in his oxygen levels each night down in the 80s and even the low 70s. :( We are grateful that that is no longer happening right now, but that could always change. Even though apnea is often associated with obesity, Dean is long and lean and still has it anyway.

As you can imagine, a 4-year-old is not thrilled about sleeping with the BiPAP mask on, so he takes it off repeatedly every single night. We are exhausted. The machine makes it difficult to travel and to get a babysitter who is ok with handling the machine so we can go out overnight for dinner. We are very grateful to have found a few babysitters who will deal with the BiPAP and also my mom, who is comfortable using one. Thank goodness! And Dean really is a champ, even with taking it off, to tolerate it as much as he does. And I think he still looks so cute even with his mask on. :)

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