Saturday, May 11, 2013

PWS Awareness Day #11: Excessive Daytime Sleepiness

People with PWS suffer from abnormal sleep/wake cycles, and this includes excessive daytime sleepiness (EDS). Children with PWS tend to need naps longer than typical kids do, and this can greatly affect performance in school, therapy, and other activities. People with PWS often fall asleep during mealtimes, especially as young children. As treatment, a variety of supplements, such as CoQ10, B vitamins, and L-carnitine can be given to increase energy throughout the day. Also, the drug Provigil (generic is Modafinil) is being used increasingly to combat EDS and increase focus to improve performance at school, therapy, and other activities.

EDS has definitely been something we have dealt with with Dean. He often falls asleep during mealtimes, which most people think is cute or funny, but it gets difficult to feed someone who is sleeping all the time. Dean is on multiple supplements to help his energy, which seem to work a bit. Modafinil has been honestly kind of life-changing for Dean, as before taking it, he had a really hard time in school and therapy. Since being on modafinil, he has a good day almost every day. He still sleeps a bit during meals and even for very short times in the car, but modafinil has really helped his quality of life. He was the youngest patient thus far to start on it, just before three years of age. When it comes to a rare disease like PWS, you have to be willing sometimes to take calculated risks and try something to improve quality of life. We are happy that this worked out for him!

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