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...
Category: Ask Nurse Lynn
Ask Nurse Lynn: Anemia and Iron Supplementation
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...
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...
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: Treatment-Resistant Psychosis and Clozapine
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...
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: Maintaining a Healthy Lifestyle
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...
Ask Nurse Lynn: Hygiene Concerns and Solutions
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...
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....
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...
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: Machines for Sleep Apnea
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...
Ask Nurse Lynn: Interventions for Rectal Picking
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...
Ask Nurse Lynn: Expectations with PWS
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...
Ask Nurse Lynn: Memory, Confabulation, and Aging in PWS
Question: Female, 58 years old, Deletion subtype My daughter will be 58 on Jan. 14, 2025. I am interested in any information on older PWS persons. She lives in Canada. We have no APWSA anymore. She seems to be having issues with memory, confabulation, and possibly early dementia. Is this normal? Nurse Lynn’s Response: Memory...
Ask Nurse Lynn: Using Sign Language
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...
Ask Nurse Lynn: Digestion and Vasovagal Episodes
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,...
Ask Nurse Lynn: GLP-1 Medications and PWS
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...
Ask Nurse Lynn: Growth Hormone Dosage
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...
Ask Nurse Lynn: Determining Appropriate Setraline Dose
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...
Ask Nurse Lynn: Managing Food-Related Behaviors
Question: Male, 9 years old, Deletion subtype My son is 9 years old and weighs 130-135 pounds. He eats every 10 minutes. Then throws up and eats some more. We are seriously running out of food cause he eats so much and we don’t have enough food for everyone. How can we better control his...
Ask Nurse Lynn: Late Diagnosis and Newborn Screening
Question: Female, 3.5 years old, UPD subtype Hello, I’m from Ontario Canada. We just received a diagnosis a couple of weeks ago. I see most of the children on this support group are being diagnosed within weeks of birth. Is PWS routine testing with your newborn screen? Just curious as I knew something was wrong...
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...