Medically reviewed by Jonathan B. Jassey, DO
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- Having a child with Prader-Willi syndrome (PWS) can affect the whole family and requires significant life changes.
- There are practical ways to support a child with PWS that everyone can help with.
- Avoid singling out your child with PWS by making regular exercise, consistent schedules, nutritious meals, and shared activities a normal part of your family culture.
On top of physical and mental challenges, Prader-Willi syndrome (PWS) can cause behavioral issues like compulsive behaviors and difficulty controlling emotions. These symptoms can be challenging for everyone involved, including parents and siblings. There are changes your family can make to help your child with PWS thrive while also improving everyone's quality of life.
1. Store All Household Food Securely
Why you should do it: Starting in early childhood, kids with PWS usually have an uncontrollable appetite, a symptom called hyperphagia. Their brain doesn’t send “fullness” cues after eating, so they may compulsively overeat, fixate on meals and snacks, or aggressively seek out food. This type of compulsive eating can quickly lead to obesity, negative behaviors around food, and even dangers like choking or suffocation (if your child eats too much too quickly).
How to do it: One of the most important changes you can make at home for a child with PWS is to eliminate free access to food. This is called creating a “food-safe environment.” It often requires a combination of the following:
- Consolidate all household food to one general area of the house (no storing snacks in individual bedrooms, for example).
- Keep all food storage units locked, including refrigerators, cabinets, and pantries.
- Remove all communal sources of food, like candy dishes.
Why it can be a challenge: Taking these steps can make you feel like you’re being mean or unfair to your child with PWS, but it’s important for you and your family to understand that PWS makes it impossible for a person to control their own food intake, sometimes to the point of illness or harm. They need you to help them by reducing their access to food and ability to eat.
2. Stick to Regular Food Routines
Why you should do it: Kids with hyperphagia often experience anxiety around mealtimes. They may wonder when they’ll be able to eat again, if they’ll get enough to eat, or if they’ll be able to control how much they consume. They may also experience feelings of guilt or shame if they aren’t supervised during a meal and then overeat.
How to do it: To help reduce anxiety or negative thinking about food, set clear mealtimes for your family, plan out meals in advance, and stick to these daily routines. Knowing when the next meal or snack is coming and what will be served can help kids with PWS generally feel more secure around food. It’s also helpful if everyone in the family eats together at the same set times so your child with PWS doesn’t have to watch other family members eat when they aren’t allowed to.
3. Make Daily Physical Activity a Family Goal
Why you should do it: Because of their extreme hunger, kids with PWS are at a high risk for obesity. In fact, around 40% of children with PWS have obesity. It’s vital that children with PWS get regular exercise to help manage their weight—ideally, around 30 minutes of physical activity at least five days per week. This can be challenging for kids with PWS, especially if they feel like they’re being singled out.
How to do it: Make physical activity part of your whole family’s lifestyle. Go on nightly walks together after dinner, sign siblings up for the same dance class, or create monthly physical fitness challenges tied to special rewards, like a movie night or new video game. Remember that physical activity doesn’t only mean running on a treadmill or playing a sport. Any movement, even if it’s vacuuming or raking leaves, counts toward your daily goal. As a bonus, regular exercise is good for caregiver mental health, too.
4. Make Plenty of Low-Calorie Foods Available
Why you should do it: Your child with PWS may want to eat significantly more than their siblings, but PWS typically causes low muscle mass and lower metabolism, both of which require a much lower caloric intake than normal. The combination of an impossible-to-satisfy appetite and low caloric needs can contribute to obesity and obesity-related health problems.
How to do it: Experts often advise parents of children with PWS to implement a calorie-restricted diet that still provides many of the vitamins and minerals their growing child needs to be healthy. It helps to keep your home well-stocked with nutrient-dense foods that are low in fat, sugar, and refined carbohydrates. Focus on complex carbohydrates, protein, and healthy fats while avoiding processed, sugary foods. These types of foods—part of a typical Mediterranean diet—are generally healthy for everyone, so other family members can benefit from the diet.
Some ideal foods to keep on hand include:
- Non-starchy vegetables like broccoli and carrots
- Complex carbs like whole-grain crackers, oats, and brown rice
- Dairy with protein, like cottage cheese and Greek yogurt
- Lean protein like chicken and turkey
- Eggs, avocado, and tofu
- Lower-sugar fruits like melon and berries
- Nuts and legumes, including beans and almonds
5. Follow a Consistent Daily Schedule
Why you should do it: PWS can influence children's behavior and emotional well-being. Kids with PWS often have temper tantrums, mood swings, and anxiety. They may become overly rigid, struggling to deviate from the usual schedule or plan. Some kids with PWS also have obsessive-compulsive behaviors, including skin picking.
How to do it: While a consistent schedule won’t solve all of these problems, it can give kids with PWS the predictability they need to feel comfortable and secure in their day-to-day lives. Make sure the daily schedule includes mealtimes to help lower food anxiety. If your child with PWS (or your whole family) needs more help creating and sticking to a consistent schedule, consider posting a visual schedule around the house that includes meals as well as chores, morning and evening routines, and other activities like homework or sports.
6. Participate in Food-Free Family Activities
Why you should do it: Another way to help manage extreme hunger or behavioral problems in kids with PWS is to keep them engaged in activities such as hobbies, sports, and crafts. This also helps everyone in the family remember that your child is more than their diagnosis—they’re a whole person with talents, skills, and interests.
How to do it: While spending time together as a family can benefit all of you, it’s best to choose activities that don’t involve food. When food is around, a child with PWS can have a difficult time thinking about anything else—they may focus entirely on food, try to obtain large amounts of food, feel anxious, or display challenging behaviors in response to the presence of food. Instead of going to restaurants, picnics, barbeques, or other places where eating is the main activity, choose activities where there is little or no food available, like zoos, museums, parks or gardens, beaches, and hiking trails. This way, your child with PWS can focus only on having fun with their family.
How To Foster a Supportive Family Culture
Having a child with PWS in the family can be challenging for everyone. Research has shown that kids with PWS have a lower quality of life than kids without it, and levels of stress, anxiety, and depression are often significantly high in parents and siblings of kids with PWS. That’s not to say that all families with a child with PWS are unhappy—just that they may need to work harder to create and maintain a harmonious family culture. Here are a few ways you can start:
- Talk openly and honestly about PWS in age-appropriate ways with all family members.
- Give siblings one-on-one time with parents as well as plenty of time to explore their own interests and passions.
- Have whole-family hobbies or activities that encourage deep bonds between siblings.
- Involve all family members, including your child with PWS, in household chores and responsibilities.
- Enlist outside help from extended family, friends, or community members to help limit caregiver burnout.
- Invite siblings’ friends and peers to sit down with your family and learn more about PWS.
- Attend family therapy or a family support group for people with PWS.
