PWS Awareness 2014 : Day 15

PWS Awareness 2014 : Day 15 {narcolepsy and seizures}

A few months after being diagnosed with Prader-Willi Syndrome in 2011, Siena was also diagnosed with partial complex epilepsy. At the time she would have episodes that looked very much like seizures, but when given EEGs, even an ambulatory EEG, no seizure like activity was ever found. Siena’s neurologist recommended we start a therapeutic dose of seizure medication to see if it helped…. the episodes would come and go, and we still were not sure if it was seizures. Upon contacting PWS specialist/endocrinologist #ourhero, Dr. Jennifer Miller, she explained to us that it was very probable that Siena was instead suffering from narcolepsy, which is a common symptom of PWS. Because Siena had already began seizure medication, she had to be seizure free for 2 years before she could be weened from the medication…. mind you, we were never sure that she was having them in the first place.

To make a long story short, we came to find out this past winter, after a multiple sleep latency test that Siena does indeed have narcolepsy and not partial complex epilepsy. She was also diagnosed with cataplexy, which we mostly notice when Siena laughs very hard. Since then we have been able to ween her from seizure medication and are now focusing on treatment for the excessive daytime sleepiness – which consists of scheduled naps, and eventually medication. Oddly enough, one of the biggest triggers for the sleepiness is while Siena is eating. We have dubbed this “sleep eating” in our home. Because I would like to help fellow PWS families detect the difference between seizures and narcolepsy, please let us know if you would like more info or would like to view any of the videos we have taken of Siena during these “episodes”….  Dr. Miller recently used one of our “sleep eating” videos at a PWS conference in hopes to educate parents and doctors as well. Please don’t hesitate to ask!! xo


4 thoughts on “PWS Awareness 2014 : Day 15

  1. Hi there! My daughter, Naomi, was born February 2010 and was diagnosed with PWS last October (long story as to why that took so long – argh). She reminds me so much of your Siena, and actually has a big sister named Sienna. She too has the “sleep eating” – it’s crazy to watch her. Her eyes roll back in her head and she slowly chews and manages to get it down. The moment she’s done eating she snaps back to “normal” and goes about her day. So crazy! Would love to chat with you more about this, and other PWS stuff, if you don’t mind. Maybe by email? Thanks for your blog – it’s been very helpful these past few months. -Jen

  2. Hello, just reading your blog and see so many similarities with my daughter Kennedy. She was born in September 2009 and was just diagnosed with PWS a few months ago. She was just diagnosed with cataplexy today and when really tired will eat with her eyes closed and fall asleep. Just wondering if we could touch base so you could send us some info on what treatments or things you are doing to help. Look forward to hearing from you. – Jessica

    • Hi there!! I am so sorry I never responded!!!! Hope you are all doing well!!!!! Feel free to reach out anytime!!

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