Question: Female, 18 years old, Deletion subtype If my child becomes constipated, can we use Miralax to help it to flow better? Nurse Lynn’s Response: Constipation is very common in adults with PWS because of slower gut movement, low muscle tone, and limited activity. Managing it usually takes a mix of daily habits and medications....

Question: Male, 17 years old, unknown subtype What are your thoughts on Risperidone? My son has been on Abilify for over 3 years but is now starting to become more agitated as time goes on. The Doctor is suggesting Risperidone to help his extreme impulsive outburst about very small things that he is dealing with....

Question: Female, 40 years old, deletion subtype Can a woman with PWS have a baby? Nurse Lynn’s Response: Most women with PWS cannot have babies because their bodies don’t make enough of the hormones needed for regular periods and pregnancy. But there have been a few rare cases where women with PWS have gotten pregnant...

Question: Male, 40 years old, Deletion subtype My son turned 40 in Dec 2025. I feel his memory is getting shorter. Forgetting a lot. Also, talking to himself. He never really did this, but it seems to be doing it a lot lately. Is this normal for adults. We are going to his primary soon....

Question: Male, 18 years old, Deletion subtype My son has low testosterone and is seeing an endocrinologist tomorrow to possibly start increasing this hormone. Is there anything I should look out for? He is at a good weight but has low energy. The primary doctor believes it could be because of the low testosterone. Any...

Question: Female, 13 years old, Deletion subtype My daughter started the estradiol patch about 4 months ago. She hasn’t really gained much weight or gotten bigger, but she is getting stretch marks across her butt and her upper thighs. Is this common with estrogen spikes or does it have something to do with PWS? Is...

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...