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Category: Ask Nurse Lynn

photo of Nurse Lynn, the advice nurse for Prader-Willi syndrome with the title of Osteoporosis, Calcium, and Vitamin D

Ask Nurse Lynn: Osteoporosis, Calcium, Vitamin D

Question: Female, 42 years old, UPD subtype My question is about treatment for osteoporosis. My sister, to my knowledge, has never had any hormone replacement. She is obese, BMI 38, and the only abnormal lab done by her gynecologist was testosterone, which was “below the technical range of the assay.” Her vitamin D levels are...

photo of Nurse Lynn promoting an article on hCG and hypogonadism for boys with Prader-Willi syndrome (PWS)

Ask Nurse Lynn: hCG and Hypogonadism

Question: Male, 8 months old, unknown subtype We want to give hCG injections to our son, not just to avoid the surgery but for future benefits as well. His endocrinologist and urologist refused to give hCG, even after requesting so many times. I’m from the UK, and the NHS (National Health Service) have stopped giving...

genetics and weight gain for Prader-Willi syndrome (PWS)

Ask Nurse Lynn: Genetics and Weight Gain

Question: Female, 7 years old, Unknown deletion Does the identification of PWS by genetic testing PWS give conclusive results? In other words, your child either has or doesn’t have PWS? Does a child with PWS gain weight event if her caloric intake is restricted? Would a “less than normal” caloric intake still result in weight...

Ask Nurse Lynn: Fevers with PWS

Question: Female, 2 years old, unknown subtype My daughter has had a very high fever for the last two days. There are lots of viral things going around here so I am thinking that it is that. Is it normal that kids with PWS get fevers? I have read before that usually they don’t break...

Ask Nurse Lynn: Skin Picking Strategies

Question: Female, 42 years old, Deletion My daughter is a severe picker, wondering if you have any advice that would help? Nurse Lynn’s Response: Skin picking is a common and challenging behavior in individuals with PWS. Here are some strategies that might help a sample sensory plan is also included. Environmental & Behavioral Strategies 1....

Graphic of Nurse Lynn with the headline Food Seeking Behaviors in relation to Prader-Willi syndrome (PWS)

Ask Nurse Lynn: Food-Seeking Behaviors

Question: Female, 23 years old, UPD subtype My 23-year-old daughter with UPD is just now developing some food-foraging behaviors. I am assuming this is not uncommon, but I am just wondering if this is typical to start at this age. We have never locked our cabinets because we never had to, so I am wondering...

Graphic with Nuse Lynn to promote article about Growth Hormone Levels in individuals with Prader-Willi Syndrome (PWS)

Ask Nurse Lynn: Growth Hormone Levels

Question: Male, 4 years old, unknown subtype What if the growth hormone levels are high? Does my son still need to be on growth hormone? Nurse Lynn’s Response: Growth hormone therapy is a cornerstone of treatment for individuals with PWS. It helps promote growth, improve body composition, enhance muscle tone, and support overall metabolic and...

Ask Nurse Lynn: Respiratory Infections

Question: Male, 7 months old, unknown subtype He has a cough, congestion, and I have the humidifier with Vicks vaporizer going and been using the nose sucker by Frida to help clear his airway. But I’m so worried at night especially knowing now he has sleep apnea. He’s having a hard time breathing. I really...

Ask Nurse Lynn Infant Growth PWSA USA

Ask Nurse Lynn: Infant Growth

Question: Female, 5 months old, Deletion subtype My baby is 5 months old. The growing is not fast, 5 month looks like 2 months.What do I do? Nurse Lynn’s Response: I’m sorry to hear about your concerns regarding your baby’s growth, here are some suggestions: Consult with a Pediatric Endocrinologist: Schedule regular check-ups to monitor...

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