Category: Ask Nurse Lynn

Ask Nurse Lynn: Procreation and Genetics in PWS

Question: Female, 34, Deletion My daughter continues to wonder how/why some ladies with PWS have been able to conceive, give birth. As a teenager, an ultrasound determined that she had “follicles”, but she’s not ever menstruated. She continues to want to investigate the possibility of becoming pregnant. We’ve explained that this is highly unlikely, but...

Ask Nurse Lynn: G-Tubes for Infants

Question: Female, 5 months, Deletion Have you seen an increase in infants being denied a G-tube? Our pediatrician recommended us for one after we’ve had a lot of trouble with the NG tube and put in the referral, but the surgeon said there’s a new study showing a 37% risk of complications and denied us...

Ask Nurse Lynn – When to Start Growth Hormone

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...

Medical graphics with title of "Temperature Abnormalities" in people with Prader-Willi Syndrome

Ask Nurse Lynn: Temperature Abnormalities

Question:  Female, 5, Deletion: What temps would you write in an IEP for kids to stay indoors? Example below 40 and higher than 80? What wording would you recommend? Nurse Lynn’s Response: The degree and severity of temperature abnormalities can vary from person to person. In short, I wouldn’t write down exact temperatures.  I would use...

Medical graphic for weight loss medications for Prader-Willi Syndrome

Ask Nurse Lynn: Weight Loss Medications

Question: Male, 33, Deletion How much promise would a weekly injection of Ozempic or Trulicity have on my son for weight loss? Nurse Lynn’s Response: Thank you for your question. From the limited research on the PWS population and the use of GLP-1 medications, they do show some success in glycemic control but do not...

Medical graphic for article on Anxiety and SSRIs for Prader-Willi Syndrome

Ask Nurse Lynn: Anxiety and SSRIs

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...

Maintaining Goal Weight

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...

Ask Nurse Lynn: Cataplexy

Question: My daughter is 12 (deletion). She was never officially diagnosed with cataplexy, but when she was younger there were obvious moments of cataplexy like behavior (usually if she was tired and laughing.) Is it necessary to get an official diagnosis of cataplexy, if so, how is that done, and is it something that people...

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