Your young child suddenly wants to eat everything in sight. All day. Every day. What’s going on?
This constant craving for food can signal Prader-Willi syndrome (PWS). This rare genetic condition starts from problems with a single pair of chromosomes. And it can change how your child’s body turns food into energy (metabolism). PWS can make them feel incessantly hungry to the point of overeating. A lifelong condition, Prader-Willi syndrome also affects brain development and can have other symptoms and complications, too.
Learning your child has this genetic condition can be overwhelming. Cleveland Clinic Children’s expert healthcare providers understand this. Our team knows you probably have a lot of questions about treatment and your child’s future. We listen to your concerns, get the answers you need and care for your child with compassionate, expert treatment.
When your child comes to Cleveland Clinic Children’s for treatment, they’re in good, caring hands. We’ll treat them as if they’re one of our own. And we’ll help you understand how PWS affects them — and your family. We’re here to listen and care for all of you.
Our experienced pediatric team diagnoses, treats and manages complex genetic conditions like Prader-Willi syndrome. We make sure your child gets the most compassionate and personalized care. Meet our team.
Prader-Willi syndrome affects many things in your child’s body. Their care team will have skilled pediatric providers from different specialties working together to plan and manage their care. As your child grows up, we’ll help them smoothly move to care with adult providers at Cleveland Clinic.
Our team dives deeply into finding new and better treatments and tools through clinical research and drug trials. We often do this through clinical studies, which gives your child access to therapies not widely available. Ask your child’s care team if they qualify for any active studies.
When you have questions about your child’s health and want a quick check-in with their provider, why not try a virtual visit? They’ll get the same one-on-one care without leaving home.
Cleveland Clinic Children’s is a trusted healthcare leader. We’re recognized throughout the U.S. for our expertise and care.
Prader-Willi syndrome starts from a random genetic change (mutation). It happens in a specific chromosome — chromosome 15. Most people have two copies of this chromosome — one from each biological parent. But a mutation can cause problems with this pair of chromosomes. One might not work. Or it might be missing entirely. And when that happens, the genes in the chromosome can’t tell the body how it’s supposed to work.
When your child has PWS, their metabolism takes the hit. As babies, they may struggle to eat. But as they grow, they may want to eat everything they see. This usually happens between ages 2 and 6. And it can increase their risk of having obesity, diabetes and other health conditions with their endocrine system and hormones. You may also notice signs like:
When you come to your child’s first appointment, you’ll want to be prepared to answer questions about their symptoms, eating habits and behavior like:
During this visit, their provider will do a physical exam to look for physical signs of PWS or similar conditions. And they’ll order a genetic blood test to help confirm a diagnosis.
Diagnosing and managing Prader-Willi syndrome takes the expertise of providers from different specialties. Your child’s care team may have:
Our healthcare providers see patients at convenient locations throughout Northeast Ohio.
Your child’s personalized treatment plan will focus on managing PWS symptoms and avoiding complications.
For babies who struggle with feeding, we may recommend using special bottle nipples to help them get enough nutrition. For children who eat too much, we can help you manage what they eat with a nutritious, low-calorie diet plan.
Your child’s care team may prescribe medications to increase certain hormones affected by PWS. What they’ll take depends on whether they're a boy or girl. Your provider will talk about the medication options with your family.
We may also recommend that your child see physical, occupational and speech-language therapists to help with delays. You’ll also likely meet with a dietitian who’ll work with you to plan meals that can help manage your child’s eating. We also offer mental health counseling for you and your child if needed.
Because PWS is a lifelong condition, you and your child will always manage it. But you don’t have to do it alone. Cleveland Clinic Children’s has the personalized support and care you need. And when your child outgrows pediatric providers, we’ll help them move into adult care at Cleveland Clinic. You can rest easy knowing they’re in good hands every step of the way.
Getting an appointment with one of our Prader-Willi syndrome experts is easy. We’ll help your child get the care they need.
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