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PRADER WILLI SYNDROME

K&A Nutrition specializes in providing medical nutrition therapy for individuals diagnosed with Prader-Willi syndrome. We have registered dietitians who specialize in Prader-Willi nutrition. Our goal is to help the individual with Prader-Willi syndrome achieve balance and normalcy. We also work closely with family members and staff to develop strategies that can help them achieve goals. Our dietitians can provide education to help family members and care-takers understand the unique characteristics that are essential in caring for or working with an individual with Prader-Wilil syndrome. Our Registered Dietitians can provide menus, available with recipes and purchasing guides catered to each individual's needs.

 

For each home we provide:

  • 3 - 4 Week, detailed menus with recipe guidelines

  • Grocery shopping advice

  • Prader-Willie Expectations for clients, home, and house staff

  • Out-to-Eat menus and meal plans in various caloric values

  • Holiday and Party menus with recipe guidelines

  • Low calorie dessert recipes and food recipes provided outside of menus

 

Our goal with Prader-Willi clients is to make their lives and the lives of their family members as normal as possible. We believe we can help our Prader-Willi clients maintain balance and a healthy weight, while still being able to experience things like going out to eat, going to school, or going to work everyday.

What is Prader-Willi Syndrome?

Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex it results from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. Prevalence estimates have ranged from 1:8,000 to 1:25,000 with the most likely figure being 1:15,000.  PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage ("thriving too well"), has a typical onset between the ages of two and five, but can be later. The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues.  To learn more, visit the Prader-Willi Syndrome Association website.

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