101 Prader-Willi Syndrome Tips
101 Prader-Willi Syndrome tips provides you with an effective approach to dealing with PWS. Read tips provided by parents of children with PWS, ‘recommend’ your favourite tips and implement the top recommended tips. If you have your own tip that you would like to see listed on this page, please email us with your name and the tip at pwstips@fpwr.ca
Have fun!
| Title | Tip | Vote |
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Anticipation Causes Problems
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Do not tell your child about events before they happen – the anticipation is too great. |
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Out of Sight
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Keep food out of sight. Out of sight, out of mind. |
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Growth Hormone
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Start early and advocate for access to growth hormone. |
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Never Reward with Food
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Never reward with food. |
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Exercise
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Keep exercise a big part of every day. |
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Food as a reward
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Never ever reward or punish with food! |
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Sleep Apnea
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Check you child’s breathing at night to ensure that they don’t have sleep apnea. Ask your doctor for a sleep study (even if you don’t want to pursue GH treatment). |
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See You In The Morning
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When Lauren was little (3 years old) she would often get up at night – sometimes to wander, sometimes to try to come in our bed. What we did – that was a HUGE success- was…We bought an alarm clock (that plays music – could even be a radio station). Since Lauren was, at that time, getting up around 4:00 in the morning, the first night we used it we set it for 3:00 a.m. – yup 3 a.m.! We then said to Lauren, “See you in the morning when the music comes on”. The music woke her up and she came in with us. Over the next two weeks we kept setting it a half hour later (every few days). Each night we would say the same thing, “See you in the morning when the music comes on”. After two weeks she never got up before 7:00 a.m. Although we no longer use the alarm clock, to this day, when we say good night, we always say the same thing, “See you in the…” |
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Cooking Healthy
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Improve your own eating behaviour and choose healthy foods. Change one thing at a time to eliminate frustration and learn how to cook healthy by reducing sugar and salt. |
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Be Consistent
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Be consistent with daily rules, routine and structure. This reduces stress in your child and makes home life happier. This is our number one ‘life rule’ to live by. Being consistent still allows for vacations and special events, but allows the child to know what is expected of him or her. |
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Take Things Day By Day
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We take things day by day. Always remembering to enjoy our girls and have fun letting them be kids. |
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Lead by Example
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Knowing early on that food may be an issue. Lead by example, eat healthy and watch your portions. |
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Prader-Willi Syndrome Conferences
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Go to Prader-Willi Syndrome conferences with your child with PWS. It is amazing being among people who truly understand you and your child. It is a level of support you will not experience elsewhere. |
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Recognize Siblings
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Recognize and honour the empathy and understanding given by the siblings of people with Prader-Willi Syndrome. |
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Start Early
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Have your child involved in OT, PT, and speech therapy as soon as possible. |
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Tell Your Family
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Tell all of your family members as soon as possible so they can help out. |
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Eat with Supervision
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Please do not allow her to eat without supervision, or leave her alone with food. This is a medical issue, not a behavioral one. |
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Celebrate your Child’s Successes
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Be happy of your child’s successes and encourage them a lot. It will make them perform more. |
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Keep a Regular Schedule
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Keep things on a regular schedule. Bedtime, mealtime, and any snacking. |
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Drink Water
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Encourage your child to drink water. Tell them that they can not start dinner until they have had one cup of water. Or before giving them juice, tell them they must drink water first. |
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Easter Tips
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For Easter, give gifts of movies or summer fun toys instead of chocolate. Egg hunts can be fun and food-free! |
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It’s Over When It’s Over
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Never bring up an issue when it is over. |
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Plan Meals in Advance
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Plan meals in advance. |
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Engage in Sports
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Play some sport with your child. Even if your child can’t participate fully, he will enjoy it and it will give him the love of sports. |
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Listen to Your Child
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Listen to your child even if they talk a lot. Listen to what your child has to say. |
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Treat your Child as Normal
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Treat your child as a normal child he will perform at his own rhythm |
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Praise Desirable Behaviour
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Again, when Lauren was around 3 years old she would often take her seatbelt off when we were driving – sometimes for the attention it got her, sometimes because she was mad, sometimes to tick us off!!! We tried overpowering her to hold it in place, having an adult in the back seat with her etc… but what we realized was she was getting LOTS of attention for a behavior that was undesirable. So, what we did was…. We put Lauren into her car seat(seatbelt on) – backed down the driveway – then back up the driveway – got out- praised her for keeping her seatbelt on – gave her HUGE amounts of attention – went in the house, read her favorite book etc.. The next day we drove to the end of the street and back – again praise and attention when we got back. We continued – each day a little farther – within a week we had it conquered! |
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Contact Other Families
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Educate yourself about what to expect throughout the years. Contact with other families is probably the best form of insight. |
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Small Plates
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Use small plates and divide meal up so there is room for seconds. |
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Do the Best You Can
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Being the parent of a child with special needs does not come with an instruction manual or a crystal ball. There are going to be times when you don’t know what is actually going to be the best for your child. Don’t be too hard on yourself. Do the best you can do with the information you currently have, and let your higher power look after the rest. |
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Lock Your Cupboards
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Lock your cupboards early in life so your child will accept it. |
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Physicians and Dietitians
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Make sure you have a good physician and dietitian who are willing to learn about Prader Willi Syndrome. |
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Physical Activity
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Look for ways to engage in physical activity without calling it exercise. |
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Keep Routine the Same
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Keep routine the same |
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Never Raise Your Voice
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Never raise our voice – it just makes the argument worse. You have to keep calm – even when you want to SCREAM! |
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Use IF/Then Statements
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If Lauren is exhibiting an undesirable behavior, we don’t ask her to stop; we tell her what we would like to see. Example: If Laruen is picking we might say, “If your hands stay down, the t.v. gets to stay on.” Or “If you can speak in a quiet voice then you get to stay in the room.” We can these “If/Then” statements. If she doesn’t comply we ALWAYS say “I see you’ve chosen for…. (in the cases given, the t.v. to go off” or to leave the room”) |
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Participate in Playgroups
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Have children involved with playgroups, and getting time with children their own age. It helps to push them in meeting their milestones. |
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Find Funding
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Look into all possible funding that your child may benefit from, every little bit helps. |
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Lots of Praise
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Give lots of praise and excitement for every new accomplishment, no matter how small. |
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Build a Network
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Build a network of support for youself, as well as for your child. |
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Cut Up Food
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Cut up food so it looks like more and encourage your child to eat slowly. |
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Locking Food
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When the time is right for your family, lock any access to food. It will reduce anxiety and stress. |
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Telling Time
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Teach your child how to tell time at an early age, then allocate specific times for meals and snacks – our children love to stick to the schedule, therefore, you may minimize complaints of hunger. |
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Fat Free
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Just because a package says low fat or fat free…read it closely…watch for high sodium and sugar grams. |
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Push Your Child
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Push your child to grow and do and learn and be. Encourage her to do her best. Acknowledge effort, energy and fun, not results. |
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Your Team Includes Extended Family
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Make sure your extended family has a good understanding of Prader-Willi Syndrome and its related challenges. |
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Change One Things At A Time
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Change one thing at a time on your way to eating healthy ( eliminate fast food, reduce salt, reduce sugar, …). |
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Listen to your Heart
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Listen to your heart and follow your instincts. Don’t always simply follow doctors orders. Make our own opinions about the new prader-willi syndome information. |
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Sing to your Children
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Sing songs to your children, it will catch their attention |
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Stimulate your Child
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Stimulate your child all the time |
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Provide Specific Instructions
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When asking Lauren to do a task it must be specific. “Clean up your room, please!” is too general. Instead we say, “Lauren, please put your clothes in the dirty clothes basket, and make your bed.” Lauren knows exactly what is expected of her and willingly complies! |
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Keep Active
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Keep the whole family active, from skating and sliding in the winter, to hiking and swimming in the summer. |
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Baby Signs
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Learn baby signs. It has really helped us communicate with our girls early on. |
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Get Involved
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Get involved in your local and national PWS organizations. They offer the most current information, and can be a great source of support and fellowship. |
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Sleep Study
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Ask about a sleep study. There are many sleep issues other than sleep apnea that may be present in children and adults with PWS. |
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Watching Food Waste
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Always be mindful of where you keep your composts, recycling and garbage. |
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Never Say No
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Try to never say ‘no’ when asked for something to eat. Even if you just offer a pickle or veggies, they feel in control and less anxious. |
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Teachers can be Great Allies
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Teachers can be great allies in keeping your child with Prader-Willi Syndrome safe and successful in school, but you’ll need to make sure they have all the knowledge they need to help. Use these suggestions to create an information packet to bring educators up to speed. |
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Happy Parents
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Happy parents help make happy children. So… you’ve got a child with special needs. You do not have to be Super Mom or Super Dad every minute of every day. Take some time for yourself for your needs, hobbies and sanity (especially you moms who are usually too busy looking after everyone else). |
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Listen
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Be willing to listen, and really HEAR, even if you have to give a time limit. |
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Understanding Prader-Willi Syndrome
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Make sure you have a good understanding of Prader-Willi Syndrome. |
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Lots of Love
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Make sure everything is done with lots of love! |
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Be a Clown
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Be a clown for your kid it will amuse him even if he doesn’t respond he will enjoy it |
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Preinstruct!!!!
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Preinstruct, preinstruct, preinstruct!!!! |
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Eat Slowly
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When Lauren was two, she would eat quite quickly – so- we would pull her chair back from the table, verbally tell her to eat slowly, wait for a bit, then push her back in. In no time at all, all we would need to say to her was “If you eat slowly, you get to stay at the table” and she would slow down. Now it isn’t an issue. |
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Get a File at the Hospital
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After speaking to nurse after nurse and doctor after doctor in the emergency room – answering all the same questions, “No, she is not vomiting. No, she does not present a fever. No, she does not have any pain there…” We now have a file at the hospital so that if we need to go to the emergency room to be seen by a doctor all we have to do is go to the front desk, have them pull up our file, which sends us right up to the pediatrics floor to be seen by a pediatric doctor (they all know us now). No more waiting in line in emerg – answering questions that don’t apply. |
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Don’t Forget the Compost
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When Lauren was 4 she had e-coli 157. We discovered that she probably got it from eating something out of the compost. Don’t forget about composts in the backyard….. |
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Praise Specific Actions
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When praising Lauren for a job well done we don’t say, “Good job”, or “Well done!”-we specifically label what we are pleased with, “I like the way you put your coat on the hook – way to go!” |
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Our Children’s Potential
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Think, plan and act from the conviction that every child has the potential, the need and the right to grow up and move away from home (with appropriate supports to ensure health, safety and happiness). |
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Be a Team
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Invest energy, time and love into your relationship with your spouse or partner. |
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Ask for Help!
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It took me a long time to learn this, but it’s okay. |
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Special Occasions
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On special occasions, (e.g. Halloween) substitute food treats with fun treats. Give ten neighbours fun craft-type dollar store items to give your child instead of candy. |
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Introducing Food
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Try not to introduce a food that you may plan to take away at an older age. |
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Participate in Special Snacks
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Let your child participate in special snacks related to birthday parties/school activities. It’s easy to make up the extra calories over a few days. People don’t like to feel segregated. |
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Frozen Snacks
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Freeze 0% fat-free yogurt for a cool snack like ice cream. |
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Annual Development Assessments
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Make sure your child receives annual developmental assessment to ensure that you get a developmental snapshot of their progress. |
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Medic
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Request a physical therapist with experience with Medic training. |
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Gross Motor Skills
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Access special needs programs for gross motor skill development. |
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Food Suppliments
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Supplement your child’s food with EFA, CoQ10, L-Carnitine, Vitamin B12, Creatine, Vitamins and Probiotics. Do your research and monitor the body blood levels where possible. Some supplements might do more harm if excess amount build up in the body. |
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Love Your Child
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Love your child for who she is and encourage her in the activities and hobbies she enjoys, and not the activities at which you wish she excelled. Now, exercise is a whole other matter. Exercise is essential, no matter how exhausting an difficult it is. |
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Red/Yellow/Green Diet
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Use the Red/Yellow/Green diet. It is a diet plan that is easy for everyone to understand. We have found it essential in helping Kate understand her condition and what it is she needs to do to remain healthy. Kate wouldn’t be as slim and healthy as she is now without having followed this diet. |
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Social Interaction
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Give lots of opportunities for social interaction. |
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Acting out Scenes
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We have worked on “sessions” with Lauren since she was three years old. First we identify a skill we want Lauren to learn – example – not eat food that is found on the ground. We would then have sisters/brothers act out exaggerated scenes for Lauren to observe. i.e.: “Yuck, look at this raisin on the floor. It is dirty. I am going to put it in the garbage. It is full of germs.” Each day Lauren would observe one or two of these sessions. It could be done by siblings, friends, kids at school etc. |
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Daily Physical Activity
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Make daily physical activity a part of your family’s culture. |
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Red-Yellow-Green Food Plan
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Start early using the principles of the Red-Yellow-Green food plan. |
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All your Children are Special
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Remember to focus on the needs and the specialness of your other children. |
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Separate Pantry
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Make a separate room off the kitchen for a large pantry that holds your fridge, freezer and all food items. |
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Menu Planning
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Teach your child early how to menu-plan, grocery shop and cook so they can learn how to be responsible with food and learn about healthy eating. |
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Heavy Objects
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Encourage your child to lift heavy objects and engage in resistance exercises. |
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Daycare
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Place your toddler in a daycare that will challenge him/her and push them to meet developmental milestones. |
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Bactroban Ointment
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We have recently learned about Bactroban ointment. Kate has occasional problems with skin picking. Recently, she had a sore on her face that she had trouble leaving alone. It was in an area we couldn’t cover with a bandage, but we were treating it with Polysporin ointment. After battling the sore for weeks, we learned about Bactroban ointment. We got a prescription from Kate’s doctor and the sore was healed within days. We found putting the cream on at night most beneficial and found a huge difference in the sore each morning. I can’t believe we didn’t know about Bactroban before now! |
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Inclusion
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Make your child feel included in all family activities. |
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Yoga Ball
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Buy a big Yoga ball for home exercise |
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Physiotherapy
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Start Physio as early as possible |
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Add Food Concerns to your Child’s IEP
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Add something like “Mark’s parents must be informed at least 24 hours in advance of any event involving food; parents must be notified immediately if Riden eats any food that was not sent from home.” Teachers won’t always read all the PWS info you give them, but they do usually review the IEP, and it gives you solid footing when there’s conflict to say “As it states in his IEP, ….” |