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...
Question: Female, 22 years old, Deletion subtype My daughter weighs 90kg and is physically active. What’s the average life expectancy? She doesn’t have high blood pressure yet but when would I know if she is going to get high blood pressure? Nurse Lynn’s Response: High blood pressure can result from several factors, including genetics, obesity,...
Question: Female, 65 years old, Deletion subtype My sister lives with caregivers in Alberta. She turned 65 this year, and over the last few years she has developed a number of health issues. Due to balance issues, she has been using a walker for the last couple of years. It is hard to find any...
Question: Male, 6 years old, UPD subtype I am in Ireland. I am really concerned that my child is not receiving proper dose of GH. He has been on 0.6mg for over 2 years now and his weight is increasing he’s above 99 centile now and I am really stressed because of it. Ireland is...
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
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.
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.
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.
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.
