Question: Female, 61 years old, Deletion subtype Are there any proven drugs to help with skin picking? My daughter stopped skin picking when she was about 12 and in the past year, she has started again. She cannot seem to stop. I have talked to all of her doctors about it and no one seems...

Question: Male, 27 years old, Deletion subtype What would a critically hazardous weight be for someone with PWS that’s height is 4’11”? Also, what is considered a good range for their blood sugar levels in PWS with diabetes? Nurse Lynn’s Response: When caring for someone with PWS, it’s important to remember that body weight alone...

Question: Female, 6 years old, UPD subtype We have seen a lot of information about PWS patients with UPD having a higher risk of developing psychosis typically by age 20. We have recently put our daughter into a mental health/behavioral therapy program where she will meet with a therapist once a month. This way as...

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...

Question: Female, 22 years old, unknown subtype Hello, my daughter has severe rectal picking issues to the point she is anemic. Got it under control in June 2023. Latest labs show anemia Ferritin at 6 Iron total at 13 hemoglobin at 11.2…doc said increase iron supplement to 325mg. My concern is it’s a new doc...

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...

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...

Question: Male, 18 years old, UPD subtype My son struggles with psychosis/schizophrenia for 1.5 yrs. None of the antipsychotics applied reduced the symptoms. He is in a miserable situation. The doctors want to use Clozapine as last resource. Is this a drug used frequently in people with PWS and psychosis? Do you have any suggestions...

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...

Question: Female, 7 years old, unknown subtype My granddaughter’s weight is out of control. I want help with exercise and eating and helping her lose weight ….and tips on helping her in the situations she lives. Nurse Lynn’s Response: Managing weight in a child with PWS can be challenging, but with the right strategies, you...

Question: Male, 38 years old, Unknown Subtype I am an LPN. We currently have an individual with PWS, we are running into several problems, one of the biggest being hygiene. This individual refuses to shower, averaging about 1 weekly. He has a very large, growing rash across his abdominal folds. While we are here to...

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....

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...

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...

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...

Question: Female, 37 years old, Deletion subtype I have Prader-Willi syndrome and wanted to know what is the correct machine use for obstructive sleep apnea in people like me. I currently have a CPAP machine and just recently had a sleep study done. The doctor said I have the wrong machine and need a BiPAP...

Question: Male, 20 years old, UPD Our son, 20 years old, UPD, since his childhood presented one of the characteristics of the Syndrome: SKIN PICK. We have treated him with multiple creams and therapeutic aids. But now, he started with the ANAL skin pick, and it is being very difficult for us to handle these...

Question: Female, 1 month old, unknown subtype My baby is 1 month old, and the diagnosis showed Prader-Willi. I want to ask if there are people with mild symptoms and also if there are people who are independent. Can a person be diagnosed with Prader Willi but live a normal life? Nurse Lynn Response: Thank...

Question: Male, 6 years old, Deletion subtype Understanding my son would have a speech impairment and rarely made sounds as a baby we took the chance with ASL, American Sign Language, as a tool to teach him expressive language. Early on when he was physically able to start making signs, we saw that our son...

Question: Female, 40 years old, unknown subtype My sister has digestive episodes (severe constipation and now vomiting which she didn’t do as child) which usually result in vasovagal episodes and her complaining of side and chest pain. Nothing hospitals can do but how should my parents better manage her diet? Nurse Lynn’s Response: Digestive issues,...

Question: Female, 32 years old, Deletion subtype Is there any promise in trying Wegovy for weight loss? If so, what would be the side effects we would need to look out for? Nurse Lynn’s Response: There is interest in exploring GLP-1 medications like Wegovy for weight loss in individuals with PWS, but there are significant...

Question: Male, 7 months old, UPD subtype We’re currently living in Dubai & doctors have very minimal experience with PWS cases. My son started GH last September at a 0.15mg, increased the dosage to 0.2mg where IGF-1 levels was 75 & after the 3rd sleep study the endocrinologist said it was safe to increase it...

Question: Male, 19 years old, Deletion subtype My son is on Sertraline (Zoloft) and has been on quite a low dose, so under 25 mg for quite a while, in November we put his dose up by 2ml every week so now he is on 50 mg, one pill in the morning and one at...