Question: Male, 38 years old, Unknown Subtype I am an LPN. We currently have an individual with PWS, we are running into several problems, one of the biggest being hygiene. This individual refuses to shower, averaging about 1 weekly. He has a very large, growing rash across his abdominal folds. While we are here to...
Question: Female, 42 years old, Deletion My daughter is a severe picker, wondering if you have any advice that would help? Nurse Lynn’s Response: Skin picking is a common and challenging behavior in individuals with PWS. Here are some strategies that might help a sample sensory plan is also included. Environmental & Behavioral Strategies 1....
Question: Female, 23 years old, UPD subtype My 23-year-old daughter with UPD is just now developing some food-foraging behaviors. I am assuming this is not uncommon, but I am just wondering if this is typical to start at this age. We have never locked our cabinets because we never had to, so I am wondering...
Question: Male, 4 years old, unknown subtype What if the growth hormone levels are high? Does my son still need to be on growth hormone? Nurse Lynn’s Response: Growth hormone therapy is a cornerstone of treatment for individuals with PWS. It helps promote growth, improve body composition, enhance muscle tone, and support overall metabolic and...
Question: Male, 7 months old, unknown subtype He has a cough, congestion, and I have the humidifier with Vicks vaporizer going and been using the nose sucker by Frida to help clear his airway. But I’m so worried at night especially knowing now he has sleep apnea. He’s having a hard time breathing. I really...
Question: Female, 37 years old, Deletion subtype I have Prader-Willi syndrome and wanted to know what is the correct machine use for obstructive sleep apnea in people like me. I currently have a CPAP machine and just recently had a sleep study done. The doctor said I have the wrong machine and need a BiPAP...
Question: Male, 20 years old, UPD Our son, 20 years old, UPD, since his childhood presented one of the characteristics of the Syndrome: SKIN PICK. We have treated him with multiple creams and therapeutic aids. But now, he started with the ANAL skin pick, and it is being very difficult for us to handle these...
Question: Female, 1 month old, unknown subtype My baby is 1 month old, and the diagnosis showed Prader-Willi. I want to ask if there are people with mild symptoms and also if there are people who are independent. Can a person be diagnosed with Prader Willi but live a normal life? Nurse Lynn Response: Thank...
Question: Female, 58 years old, Deletion subtype My daughter will be 58 on Jan. 14, 2025. I am interested in any information on older PWS persons. She lives in Canada. We have no APWSA anymore. She seems to be having issues with memory, confabulation, and possibly early dementia. Is this normal? Nurse Lynn’s Response: Memory...
Question: Male, 6 years old, Deletion subtype Understanding my son would have a speech impairment and rarely made sounds as a baby we took the chance with ASL, American Sign Language, as a tool to teach him expressive language. Early on when he was physically able to start making signs, we saw that our son...
Question: Female, 40 years old, unknown subtype My sister has digestive episodes (severe constipation and now vomiting which she didn’t do as child) which usually result in vasovagal episodes and her complaining of side and chest pain. Nothing hospitals can do but how should my parents better manage her diet? Nurse Lynn’s Response: Digestive issues,...
Question: Female, 32 years old, Deletion subtype Is there any promise in trying Wegovy for weight loss? If so, what would be the side effects we would need to look out for? Nurse Lynn’s Response: There is interest in exploring GLP-1 medications like Wegovy for weight loss in individuals with PWS, but there are significant...
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...
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Over the years, as a special-needs parent navigating the Special Education system for Sophie, Jennifer became interested in learning as much as possible about that process. She began by attending PWSA (USA)’s first Wyatt Special Education Advocacy Training in March of 2013, and went on to complete a rigorous 9-month Special Education Advocacy Training course with the Council of Parent Advocates and Attorneys in May of 2015. This included successfully completing an advocacy internship with PWSA (USA). Jennifer is referred school cases by PWSA (USA)’s Family Support Counselors, and then works closely with parents and schools to review education records, assess the child’s situation at school, provide further information about how the syndrome affects the school experience, and, as needed, create improved IEPs and behavioral plans. Jennifer was excited to take on this role of helping parents in the PWS community to work collaboratively with school professionals and parents to create positive, effective learning environments for children with PWS across the country. Jennifer is a graduate of the WSEAT program.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Past president of the Education Law Association and co-chair of the Pennsylvania special education appeals panel from 1990 to 2007, he is the author of the CEC monograph The Legal Meaning of Specific Learning Disability; the more recently published books, A Digest of Supreme Court Decisions Affecting Education and Student Teaching and the Law; and the two-volume reference Section 504, the ADA and theSchools, now in its fourth edition. In 2012, he received Research into Practice Award from the American Educational Research Association (AERA) and the Excellence in Research Award from AERA’s Division A (Administration, Organization & Leadership). In 2013, he received the University Council for Educational Administration’s Edwin Bridges award for significant contributions to the preparation and development of school leaders. In 2016, he received the Education Law Association’s Steven S. Goldberg Award for Distinguished Scholarship in Education Law, and in 2017 he received the Council for Exceptional Children’s Special Education Research Award. Note:Perry’s website is perryzirkel.com
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
She obtained her PhD from Capella University in Education focusing her research on Prader-Willi Syndrome. Dr. McTighe is also a graduate of the William & Mary Law School’s Institute for Special Education Advocacy. Dr. McTighe is currently the chair of the Special Education Advisory Board for the Prader-Willi Syndrome Association-(USA). Amy is the Chair of PWSA (USA)’s Special Education Advisory Board.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Staci Zimmerman has lived in Denver, CO for the past 17 years. She lives with her husband and 5 year old daughter. Staci attended The University of Kansas, with a B.A in sociology and an M.ed in Special Education, with an emphasis in Autism Spectrum Disorder. Staci enjoys teaching fitness classes, and keeping a healthy, active lifestyle in Colorado.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.
Before founding SDLC, Jim was the Executive Director of Advocacy, Inc., the Texas Protection and Advocacy program from 1989-2001. During that period, he managed the growth of the program from 34 staff to a staff of 94 and from a centralized operation with one office to a regionalized operation with eleven offices spread across Texas.
From 1981-1989, Jim worked for the Advocacy Center for the Elderly and Disabled (Louisiana’s Protection and Advocacy program) as its Legal Director. From 1979 to 1981 Jim worked as a staff attorney for the Louisiana Center for the Public Interest.
Jim graduated from Tulane University School of Law in 1977, and has a BA in Accounting & Economics from the University of Puget Sound.
Jim is the author of publications and training materials on the IDEA, the ADA, and Section 504, including: Keeping Students with Disabilities in School: Legal Strategies and Effective Educational Practices for Preventing the Suspension of Students with Disabilities – A Resource Manual (2014); Stopping the Schoolhouse to Jailhouse Pipeline by Enforcing Federal Special Education Laws (2006), co–authored with Rhonda Brownstein from the Southern Poverty Law Center.
Jim has served as lead or co-counsel in several major IDEA actions in Texas, Louisiana, and Mississippi on behalf of thousands of students with disabilities, including Angel G. v. Texas Education Agency; Luke S. v. Louisiana Department of Education and Mattie T. v. Mississippi Department of Education. The past decade, he also filed and favorably settled five systemic administrative complaints in Louisiana, Mississippi, and Florida. These systemic complaints were filed under IDEA’s state complaint procedures.
Jim has also made over two hundred presentations at statewide, regional and national conferences on IDEA, Section 504, and ADA issues. The past four years he has also served as one of the faculty members at William and Mary Law School’s week long Institute on Special Education Advocacy.
