Question: Female, 69 years old, unknown subtype I am guardian for my sister who will be 69! It’s been a rough road for my parents since there was little knowledge about PWS. She currently lives with a SLP caregiver and they are a Godsend. While she has a host of typical PW physical challenges, the...

Question: Female, 22 years old, Deletion subtype My daughter is not sleeping…day or night. She sleeps maybe 2 hours at night and no naps. That means I don’t sleep. We have tried OTC and Ambien, and they don’t work. We need help, I am emotionally and physically exhausted. I will reach out to her psychiatrist...

Question: Male, 43 years old, Deletion subtype Our 43-year-old PWS son has become addicted to nicotine which has become more important than food. He knows he will be fed but we restrict his access to vaping (his favorite) which leads him to all kinds of ways of getting it out of our control. So far,...

Question: Male, 23 years old, unknown subtype I have PWS. I’m 23, 5’7″. I do not have diabetes, but my grandfather and dad do. I was wondering what my blood sugar should be every day. I just got a glucose monitor so I want to make sure I’m doing good. I do workout every single...

Question: Female, 18 months old, UPD subtype My 18 month old daughter with PWS will be going in for tonsil shaving / possible adenoid removal in 2 weeks and this will be her first time under anesthesia for a procedure. The ENT performing the procedure is knowledgeable about PWS as he belongs to our PWS...

Question: Female, 67 years old, Deletion subtype My sister with PWS (very high functioning) is scheduled for her first colonoscopy. It is just routine and there is no family history of colorectal cancer. Is this procedure absolutely necessary? Any additional advice or recommendations if the procedure is necessary. Nurse Lynn’s Response: Routine colon cancer screening...

Question: Female, 54 years old, unknown subtype My sister was recently in the hospital for CHF, low O2 and heart rate, and an obstruction in her stomach. She was placed on a NG tube for several days to allow her stomach to decompress. She is now at a rehab center. She is battling huge blisters...

Question: Male, 17 years old, Deletion Subtype Nurse Lynn,Can rectum picking be a genetic condition?I’m aware of three instances of unusual behavior involving the rectum. Nurse Lynn’s Response: Rectal picking in individuals with PWS is not considered genetic in the traditional sense, meaning it is not directly caused by inherited genes specific to that behavior....

Question: Male, 36 years old, Deletion It was suggested to me by a doctor (not a PWS specialist) that those with PWS are deficient in the hormone leptin, and that replacing it could be an alternative way of helping with hyperphagia. Have you heard of leptin supplement as a treatment for hyperphagia? Nurse Lynn’s Response:...

Question: Female, 40 years old, unknown subtype My daughter’s GP, and she herself, want to try Mounjaro injections for 6 months. She will be closely monitored by her nurse, her GP, her care team and family. She currently does not appear to have issues with gastroparesis but I want to prevent them by changing her...

Question: Male, 15 months old, UPD subtype My son has esotropia and amblyopia primarily affecting his right eye but intermittently seen in his left eye as well. Surgical correction has been discussed and currently we have been instructed to patch his dominant eye (left) for two hours daily. We would like to pursue the interventions...

Question: Female, 60 years old, Unknown Subtype My sister is on hospice with cardiomyopathy. She has been prescribed morphine for pain, but it seems to be making it worse. She appears to be having symptoms of toxicity at a very low dose. She often reacts differently to medications and I’m wondering what we can give...

Question: Female, 31 years old, UPD subtype Do people with PWS age at an accelerated rate compared to those who do not have this syndrome? My 31 year old daughter was just diagnosed with arthritis in her knee. As I look back on her health history, I can see how many of her conditions are...

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...