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...

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...

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...

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...

Question: Female, 66 years old, unknown subtype My sister has been on 5mg Lorazepam 2 times a day for anxiety for ten years. Since this drug was added to her regimen her behaviors have been manageable with few periods of aggression. In the past she has been extremely out of control, even to the point...

Question: Female, 22 years old, Deletion subtype My daughter is 22 and has hit 375lb. I feel helpless. She is diabetic and we have struggled to get it under control. She has been on Ozempic for a few years now and has not lost any weight, but her sugars levels have come down some. Should...

Question: Male, 5 weeks old, Deletion Our baby was diagnosed with Prader-Willi Syndrome at 3 weeks old. He is 5 weeks old, in the NICU. My family has been reading about how important growth hormone treatment is. We want to get our baby started on it but not sure if he is too little. Should...

Question: Male, 15 years old, unknown subtype Hi there, Nurse Lynn. I have to ask this question; my son is 15 and he is constantly masturbating! I mean, I know teenage boys do this. It just seems an extreme. Should I be worried? Nurse Lynn’s Response: Obsessive-compulsive-like tendencies are common in individuals with PWS. These...

Question: Female, 40 years old, Deletion subtype My daughter had 2 seizures 15 years ago. The doctor wants to now take her off all preventive meds. How do we know if the meds are preventing seizures? She is scheduled for a 3-day EEG next week and has reduced her meds by 50%. We have lost...

Question: Female, 38 years old, Deletion subtype Our daughter has significant dental issues and needs to have multiple procedures. The dentist has recommended that we tackle the issues all at once in a hospital setting with anesthesia. I am immediately concerned by all the possible complications but also recognize the need to try and save...

Question:  Male, 35 years old, Deletion subtype My son has been on the same meds for 25 years through the PWS institute in PA years ago: Trileptal 300mg x 2 a day and lithium 150mg x 2 a day. About a year ago he started having more aggression and more outbursts, so his doctor started...

Question: Female, 22 years-old, Deletion Does the association have a letter or document of some type that could be given to a doctor in an emergency situation, in order to give them a quick understanding of PWS and the potential medical impacts? Perhaps it could even be attached to a PWS patient’s medical record so...

Question: Male, 25 years old, Deletion subtype Our son has gained 45 lbs. in the last two years since living on his own (now 220 lbs.). He is independent and successfully holds down a job and has an apartment. Two questions: 1. We recently read that the average age of death is still 30 years...

Question: Female, 62 years old, unknown subtype My sister has PWS. We live in Quebec Canada. There is so little information about how people with PWS age. We have reduced her meds recently due to aging (Bupropion by half and she is now taking Lorazepam to handle side effects). She takes medicine due to pre-diabetes....

Question: Male, 47 years old, Deletion My son was diagnosed with S.I.R.S after a fall sent him to the hospital with chest pain. His white blood count was very elevated. I know P/W kids get lots of weird diagnosis but how common is this one? Systemic inflammatory response syndrome is a mouthful. Nurse Lynn’s Response:...

Question:  Female, 22 years-old, Unknown subtype I’m concerned about gastroparesis. I give my daughter one stool softener a day. Ok with her doc. She does not empty her stomach without picking at her bottom to stimulate. How do I address this issue? Nurse Lynn’s Response: This is actually very common for our individuals to rectal...

Question: Female, 6 months old, UPD My 6mo old tested positive for a UTI today (culture result: Klebsiella pneumoniae). She has no other symptoms besides occasional foul-smelling urine. One concern is the duration that the infection has gone untreated. I first noticed her urine about 2 weeks ago but second guessed for a while until...

Question: Male, 33 years-old, Deletion My son is mostly behaving, and he is not aggressive. However lately he gets up in the morning upset, anxious, and wants more food. For the rest of the day, he is OK. He used to take Cipralex. He does not want to take it anymore. Not that I have...

Question: Female, 40 years-old, Deletion Not every time, but a lot of the time, my daughter will feel like she needs help with her bowel movements, and she feels the need to reach in her rectum to complete the movement. She knows this is not good but worries that if she doesn’t it will come...

Question: Male, 25-years-old, unknown subtype Son, aged 25, was previously taking Propranol for blood pressure and anxiety. We were noticing increased anxiety and PCP just switched him to Lisinopril and Venlafax ER 75. Are these 2 meds found to be safe for patients with PWS?? Nurse Lynn’s Response: Unfortunately, your question is more complicated than...

Question: Female, 17years-old, UPD 2 Questions for you: It’s about myself for my knowledge of my condition. How many times out of ten do people with my disability start their period by themselves? And if they don’t start on their own after you take medicine to induce it, will they start on their own the...

Question: Male, 3 years-old, Deletion Our son gets a rash every single time he has a fever. This started this year, and he has now been sick three times. Is this common for PWS children? He also turns red and appears to have a rash with warmer baths, but the redness subsides after about an...

Question: Male, 29 years-old, UPD My son is currently on oxygen and is having several health issues.Our biggest concern is weight loss and finding a Dr in Florida who can help him as an adult with PWS. Nurse Lynn’s Response: Here is a general rule of thumb for weight loss for our folks: To maintain...