Tag: Medical

Holidays and PWS Food Security

Food Security: Planning for the Holidays, Family Gatherings and Parties Holidays, family gatherings, parties and FOOD go hand in hand. With thoughtful planning and proactive preparation, these events can be successful, healthy experiences for everyone. It’s important that everyone is prepared and knows the game plan. Without a plan, the person with PWS may experience...

At Home Resources for Families

Stuck inside your home and need things to do? We’ve put together a list of resources to help you out at home! ✅  Easy Peasy All-in-One Homeschooling – complete or partial free curriculum for all ages and stages https://allinonehomeschool.com/ ✅ Khan Academy – education for everyone, math, science, etc https://www.khanacademy.org/ ✅ Spelling City https://www.spellingcity.com/ ✅ Scripture Typer and Bible...

National Nutrition Month

National Nutrition Month – March 2020 By: Stacy Ward, Director of Family/Medical Support & Special Projects   March is National Nutrition Month. A month when the Academy of Nutrition and Dietetics encourages people to focus on making informed nutrition decisions, and good eating and physical activity habits. Parents and families of loved ones diagnosed with...

Narcolepsy as a Characteristic of Prader-Willi Syndrome

Althea Shelton, MD and Jessica Duis, MD, MS Use of growth hormone requires a baseline sleep study prior to use and one at 8-10 weeks after initiation. Beyond this, when we see a child or adult in clinic who is having excessive daytime sleepiness and/or worsening behavioral concerns among other symptoms (e.g., headaches or bedwetting),...

NUTRITION and HEALTHY LIVING

By: Stacy Ward, Director of Family/Medical Support & Special Projects   Parents and families of loved ones diagnosed with Prader-Willi syndrome have an array of concerns as their children move through life. By far one of their greatest struggles and worries is adequate nutrition and healthy living. PWSA (USA)’s Family and Medical Support counselors receive...

Tips for Better Sleep

Quality sleep is vital to our physical and mental health, as well as our emotional wellbeing. Yet, many of us struggle to get a good night sleep on a regular basis. Now, imagine if you were rarely able to get a good night’s rest and the impact that accumulated “sleep deficit” would eventually have on...

Advocating for your child in the ER

A Mother’s Experience By Katie Moureau My son Cade is three years old; and has been on oxygen since he was 4 months old. This year started out with a bang!  One early winter morning, Cade’s pulse ox started beeping.  By 5am it was alarming frequently as he was unable to maintain his oxygen levels...

TOO DARN HOT!

by Kathy Clark, Medical Coordinator Body temperature regulation is a challenge for people with PWS. They can easily become overheated, especially during infancy and childhood. Here are some great ideas to help you be safe when the thermometer rises. Outdoor activities should be planned for the cooler mornings, rather than sunny afternoons or the heat...

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