Question: Female, 21, Deletion My daughter with PWS (deletion) is wondering how common it is for females to be told by an endocrinologist to take estrogen and progesterone for the rest of their lives. She has already developed a blood clot (now resolved) and was told by another doctor that hormonal therapy could be a...

Question: Male, 17, Deletion How can I address my son’s behavior? Lately he gets mad and starts throwing things around, the more I ask him to stop the angrier he gets. If I ground him, he does exactly the opposite of what I ask him to do. Also, at school, teachers have told me should...

Question: Male, 16, UPD:  My son has had issues with bowel movements and constipation his entire life. He spends long amounts of time in the bathroom and tells me that he feels like there was more that needed to come out, but he can’t get it out. A few times lately there has been blood...

Question: Male, Newborn, Subtype Unknown How soon should a person who has been diagnosed with PWS start hormone therapy (specifically HGH)? Nurse Lynn’s Response: A child can be assessed for growth hormone treatment at any age. Clinical experience suggests that Growth Hormone treatment can be beneficial for an individual with PWS as early as 2-3...

Question: Male, 11, Deletion My grandson has behavioral issues, and we try to help as much as possible when he is over. He is on medication, but his behavior seems worse at times. For instance, when he gets mad because he can’t get what he wants, especially in a store, will sit down and cry...

Question Female, 15, Deletion: Do you happen to know of any standard of care as far as hormone support or instigating a menstrual cycle in females with PWS? Is there any harm in waiting to initiate a cycle? I know a lot of women and girls with PWS never start their period without medical intervention,...

Question: Female, 18, deletion, Arkansas: She has diabetes, one kidney does 25%, now even more increased anxiety. The first time we are trying anything for anxiety. The Dr is giving her Lexapro- the generic. Is there a certain one recommended? Also, is there a buildup or psychosis danger? Nurse Lynn’s Response: Thank you for your...

Question: We have a 40 year old son. He’s 5’6” and weighs 140. In 2006 he was at his maximum weight of 170. That year he moved into a community living arrangement with 2 other PWS individuals. He lost 35 pounds and had maintained that weight until recently. We’ve had to move him from the...