PWS Awareness Month – Week 3

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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 puberty and infertility. A study that looked at the long-term effects of orchidopexy (corrective surgery for undescended testicles) in children with PWS found the surgery to be only minimally successful, therefore parents will want to carefully consider the risks verses benefits of this treatment option.


Day 21

The “Normal” body temperature in individuals with PWS can vary significantly from one person to the next. It is important to know your loved one’s usual “healthy” temperature which can be established by monitoring his or her temperature under different circumstances and at different times. In addition, individuals with PWS can easily become too hot or too cold meaning keeping comfortable might require wearing clothing in layers to allow for easy adjustments.


Day 22

A 2018 research study found children and adolescents with PWS experienced reduced salivary secretion, increased salivary viscosity, and mouth breathing. Investigators recommended that individuals with PWS have dental care focused on the prevention and treatment of tooth wear and gingivitis and limiting the negative influence of reduced saliva. Salivary secretion stimulation can be improved by the application of topical fluoride treatments and chewing sugar-free gum containing xylitol and CPP-ACP.


Day 23

Some clinicians suggest growth hormone (GH) therapy is contraindicated in the presence of scoliosis. However, a multicenter randomized controlled trial found no difference in onset or curve progression between children undergoing GH treatment and those children not on GH. In fact, some children treated with GH experienced less severe scoliosis suggesting a protective effect of GH treatment.


Day 24

Skin picking is a common behavior seen in people with Prader-Willi syndrome (PWS). Intensity and duration vary from person to person and each episode might be different. For some, stress is a contributing factor to an individual’s tendency to engage in skin picking. If the source of stress can be removed, skin picking should also reduce. Remember, though, that skin picking can become habitual and repetitive meaning it might take time to cease altogether. Refer to Medical A-Z on the PWSA (USA) website for ways to prevent and control skin picking behaviors.


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