Question: Male, 14 years old, UPD subtype We’re looking for resources/guidance on supporting our son as we also move toward separation/divorce and separate households. Thank you! Nurse Lynn’s Response: Separation or divorce is hard for any family, but when you’re parenting a child with special needs, it adds layers of emotional, logistical, and medical complexity...

Question: Female, 2.5 years old, unknown subtype Hello my daughter keeps having recurrent UTIs. She is scheduled for a test in February which involves pushing iodine through a catheter and watching on an ultrasound to see how everything is functioning. Is there anything else I should let the urologist know pertaining to pws? Thank you!...

Question: Female, 29 years old, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have...

Question: Male, 29 years old, unknown subtype Is it normal for people with this eat then vomit violently? We don’t know much about this, just that he has it!  Nurse Lynn’s Response: Violent vomiting is not normal for someone with PWS, and it should always be taken seriously. In fact, people with PWS usually do...

Question: Female, 19 years old, unknown subtype I have PWS and I’m wondering if I can have kids of my own. Nurse Lynn’s Response: Yes, it is possible, but it is rare. Most girls and women with PWS have a condition called hypogonadism. This means your body may not make the hormones needed for normal...

Question: Male, 1 year old, imprinting subtype 1 year old, non-deletion imprinting center defect- he has been having “episodes”. He will be playing and then lose all muscle control. Head bobbing, falls over, almost like a little drunk person. Which is not normal, he has extremely good muscle control, always on the move and in...

Question: Male, 26 years old, deletion subtype My son has struggled with severe behavioral outbursts now at a rate of about 3-4 times a year, where bystanders will call police and he will either be arrested or brought to psych eval. Always calms down, is sent home. Had been on risperidone at increasing amounts as...

Question: Female, 5 months old, UPD subtype We are looking for guidance on supplements for infants with Prader-Willi syndrome, particularly for brain development. Our daughter is 5 months, and we are beginning conversations about whether supplements may be appropriate for her at this stage. We understand that Dr. Miller has published general supplement recommendations for...

Question: Male, 20 years old, deletion subtype My son had a seizure last Saturday where he lost consciousness and was stiff in his body, he then jolted awake and went on to have full body jerking for 7-8 seconds. The whole seizure lasted under 2 minutes, but he took around an hour to be fully...

Question: Female, 23 years old, deletion subtype Are there any disassociation or dissociative disorders in Prader- Willi? Is disassociation part of PWS? Nurse Lynn’s Response: Dissociation or a dissociative disorder is not considered a core or defining part of PWS. Experts who study PWS, including those summarized in the IPWSO Mental Health Network Report (June...

Question: Male, 38 years old, deletion subtype We are working with our son’s group home to help monitor his food intake. Is there a standard reduction in listed serving sizes we can recommend for them to follow to help staff with his meals? Nurse Lynn’s Response: I’m glad to hear that you’re working together with...

Question: Male, 2.5 years old, deletion subtype What are the implications for low cortisol levels in toddler boys with deletion subtype (type 2)? We’ve noticed some more fatigue and he sleeps longer during the night. What can and should be done about it? Our pediatrician ran a blood panel and cortisol came back at 3.7...

Question: Female, 25 years old, deletion subtype My daughter is 234.8 pounds but prior to the year before she was 185 pounds. I didn’t change her diet, but when she fractured her ankle, it took a year for her to heal but it is still tender to walk on it. In that time, she still...

Question: Male, 6 years old, deletion subtype My son is 6 and has PWS and autism. He has struggled with staying sleep for quite some time now. No problem falling asleep, but he consistently wakes up between 12:30-1:30am every night and will sometimes stay awake for 1-2 hours before trying to go back to sleep,...

Question: Female, 50 years old, Deletion subtype Hi there. My sister is 50 and lives in a group home. In the last year, she has started to have extreme behavior that she hasn’t had before. She runs away from her home, screams aggressively, tears up her belongings, etc. I’m very concerned because I’m afraid the...

Question: Female, 2 years old, Deletion subtype Our 2-year-old daughter is having her tonsils and adenoids removed. This will be her 5th surgery. What are some things we need to mention to our medical team to help make sure her care is up to par with our PWS concerns? Nurse Lynn’s Response: Because your daughter...

Question: Female, 12 years old, unknown deletion My daughter has been getting a temperature on and off during the day and night, but otherwise she seems fine. Could this be an issue with regulating her body temperature? If so, how is something like this treated, and what type of doctor should we see? Nurse Lynn’s...

Question: Male, 34 years old, UPD subtype Our son has never taken GH. One day, his endocrinologist noticed he had high hemoglobin levels, the highest being 18. Because of this, doctor referred him to a hematology specialist. Doctors checked his lungs, kidneys, and liver, and everything was fine. Seeing that everything was okay, they are...

Question: Male, 22 years old, unknown subtype I am again trying to get my son on an adult maintenance dose of growth hormone. He now has only Medicaid insurance. What testing should I expect them to require for prior authorization? Will this testing be appropriate for assessing PWS need for growth hormone administration? Does the...

Question: Female, 15 years old, Deletion subtype Vivimos en Riohacha, La Guajira Colombia. Mi hija tiene escoliosis por lo que se indica hacerle cirugía quiero saber los riesgos que está cirugía puede ocasionar. Gracias por la atención y apoyo. I live in Riohacha, La Guajira, Colombia. My daughter has scoliosis, and surgery has been recommended...

Question: Female, 30 years old, UPD subtype Should a person with PWS use the same BMI ranges as someone without PWS? We are trying to figure out a good goal weight range for my loved one. Currently, her BMI is around 20 – which her PCP says is normal. Is this a good measurement to...

Question: Male, 22 years old, Deletion subtype My son was diagnosed with Prader Willi when he was born. I’m in a position whether I should place him in a group home where he can get help. He’s currently living at home & it’ s getting out of control with his weight gain & diabetes. Please...

Question: Female, 11 years old, UPD subtype My daughter deals with some measure of skin picking, but it has improved over time and it’s the least of our battles to fight or worry about at this moment. I need help knowing how to talk about this behavior with the other adults in her life, as...

Question: Male, 32 years old, Deletion subtype My son has been taking testosterone for 18 years, but his LH blood test is 1.1 low. Is it normal for him? Nurse Lynn’s Response: People with PWS often have something called hypogonadism. That means the part of the brain (hypothalamus) and the glands that control hormones (pituitary...