Question: Female, 22 years-old, Unknown subtype I’m concerned about gastroparesis. I give my daughter one stool softener a day. Ok with her doc. She does not empty her stomach without picking at her bottom to stimulate. How do I address this issue? Nurse Lynn’s Response: This is actually very common for our individuals to rectal...
Question: Female, 6 months old, UPD My 6mo old tested positive for a UTI today (culture result: Klebsiella pneumoniae). She has no other symptoms besides occasional foul-smelling urine. One concern is the duration that the infection has gone untreated. I first noticed her urine about 2 weeks ago but second guessed for a while until...
Question: Male, 33 years-old, Deletion My son is mostly behaving, and he is not aggressive. However lately he gets up in the morning upset, anxious, and wants more food. For the rest of the day, he is OK. He used to take Cipralex. He does not want to take it anymore. Not that I have...
Question: Female, 40 years-old, Deletion Not every time, but a lot of the time, my daughter will feel like she needs help with her bowel movements, and she feels the need to reach in her rectum to complete the movement. She knows this is not good but worries that if she doesn’t it will come...
Question: Male, 25-years-old, unknown subtype Son, aged 25, was previously taking Propranol for blood pressure and anxiety. We were noticing increased anxiety and PCP just switched him to Lisinopril and Venlafax ER 75. Are these 2 meds found to be safe for patients with PWS?? Nurse Lynn’s Response: Unfortunately, your question is more complicated than...
Question: Female, 17years-old, UPD 2 Questions for you: It’s about myself for my knowledge of my condition. How many times out of ten do people with my disability start their period by themselves? And if they don’t start on their own after you take medicine to induce it, will they start on their own the...
Question: Male, 3 years-old, Deletion Our son gets a rash every single time he has a fever. This started this year, and he has now been sick three times. Is this common for PWS children? He also turns red and appears to have a rash with warmer baths, but the redness subsides after about an...
Question: Male, 29 years-old, UPD My son is currently on oxygen and is having several health issues.Our biggest concern is weight loss and finding a Dr in Florida who can help him as an adult with PWS. Nurse Lynn’s Response: Here is a general rule of thumb for weight loss for our folks: To maintain...
Question: Female, 35 years-old, Deletion For quite a while now, my daughter has occasional spells of burping and complaints about pain in her lower abdominal region. We have been to the Gastro doctor, and my daughter was put on Famotidine and Omeprazole. At this time, she is only on Famotidine, because it didn’t seem like...
Question: Male, 2.5, UPD My son has had a decrease in appetite (eats breakfast and lunch but not dinner) but has been drinking regularly the past two days. His BMs are a lighter brown/tan/beige color, and he has had smelly gas. His stomach at night looks slightly distended but is gone by morning. The stomach...
Question: Male, 41, Deletion Our son is getting a new housemate, male, age 43, also has PWS. He’s getting testosterone injections biweekly. No doctor has ever suggested that to us for our son. What are the benefits and what are the concerns of testosterone injections in adult male PWS individuals? Thank you! Nurse Lynn’s Response...
Question: Female, 33, Deletion My daughter went through several programs of weight loss in Pittsburgh. Their program saved her life. They don’t offer that program anymore. Are there any other programs that can help us with her weight? She’s very heavy again. When Covid hit, it got out of control again and I feel like...
Question: Male, 38, Deletion I have a question about what I think is confabulation. My son occasionally says things that are just not true, and I don’t really know how to respond. I don’t want to argue with him, but I do want him to know that what he said is wrong. The first time...
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: 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...
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...
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, 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...
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: 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...
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.
