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The Safety and Efficacy of Growth Hormone (GH) Treatment in Infants with PWS; Findings from Current Research

by Mary S. Burr DNP, CPNP There is very little scientific evidence regarding the effects of early treatment with Growth Hormone (GH) in infants with PWS. Most of the information we have is anecdotal or reported case by case. The aim of this article is to review the evidence available regarding the effectiveness and safety […]

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A Comprehensive Overview of GI Issues in Prader-Willi Syndrome

Ann Scheimann, M.D., M.B.A. Dr. Scheimann is a Gastroenterologist and expert on PWS. Ann is a PWSA (USA) medical consultant on PWS Gastrointestinal (GI) issues. The prevalence of GI issues in persons with PWS of all ages is quite high.  In addition to early feeding difficulties, reflux and aspiration symptoms are frequent problems in infancy.  […]

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Summer Fun

Whether it’s 90 degrees and humid or 70 degrees and cloudy, summer is just around the corner. That means it’s time to prepare and plan your summer fun! For individuals with Prader-Willi syndrome, summer fun must include plans for heat precaution as they often have difficulty regulating body temperature and can overheat easily. Here are some […]

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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), […]

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Bringing Hope: A Mother’s Perspective

By Kristi Rickenbach, mother to Justice age 15 with PWS, board member, PWSA (USA)   “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” ~ Helen Keller   There are things that happen in our lives that we have no control over- things we wish we could change. […]

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PWS Awareness Month – Week 3

Not on social media?  No problem!  PWSA (USA)’s daily PWS Awareness Month posts are available right here for you to access anytime.   Day 20 Hypogonadism (a condition in which the testicles are not working the way they should) and cryptorchidism (undescended testes) are both common newborn males with PWS and can lead to delayed […]

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Exercise and Behavior

You’ve heard exercise is good for physical health, but did you know research also shows exercise is beneficial to mental health and mood? According to the Mayo Clinic, physicalactivity stimulates endorphins in the brain that elevate mood and encourage relaxation. Exercise can fend off depression and anxiety in individuals with PWS and can even combat […]

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PWS Awareness Month Week 2 Mini Blog – Positive Behavioral Support

So far, we have looked at some of the many reasons negative behaviors occur, as well as behavior management techniques helpful with individual with Prader-Willi syndrome. Positive Behavioral Supportis another essential tool for caregivers. Positive behavioral support can help decrease tantrums, reduce perseverative and OCD like behaviors, and increase cooperation and effective transitions through activities. […]

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