Prader Willi Nutrition Advice

[MaiaRhysMommy]

Hi, ladies.  I'm hoping the colelctive knowledge here can help me out.  I have a friend whose 5 year old has just been diagnosed with Prader Willi disease.  One of the characteristics of the disease is an inability to feel full and to overeat, therefore having a propensity towards obesity.

The recommended diet is a low-cal, low-fat, low-sugar diet.  My friend has come to me and asked for help, because, as she stated this morning, they've been eating crap for years. 

Everything in me screams out against giving this child a low fat diet.  It seems like very little research into the benefits of good fats has been done in conjunction with this disease.

Does anyone hear know anything about it, or have seen recommendations to the contrary?

My ideas so far I've given her are to give her DD fresh fruits and veggies for snacks, period.  I don't think she's ready to go totally against processed food.. they eat fast food a lot.

Would you, in my shoes, give her some easy, healthy meals and help her learn to cook them, or go along and help her with the recommended diet?

[blessedwithboys]

I watched a show on the Health channel about PW a few months ago.  From what they showed, folks with PW will do anything and everything to get at food.  One mom had to padlock her fridge closed and her son still cried all day for food.  Another mama lost her son when his friends accidentally let him cash his paycheck and the young man literally ate himself to death.  A few weeks later, I saw a family with a dd with PW in McD's.  The girl was beyond obese, she actually looked distorted by fat (beyond the characteristic PW facial features).  It was so sad to see how much food she was being allowed to eat.  :(

If I was your friend, I would keep NO JUNK at all in the house, except under lock and key.  I would maybe try to plan 3 super healthy (yes, including healthy fats! The brain still needs fat to develop properly.) meals daily and then leave out low calorie snacks so that the child could indulge in the constant eating but not become unhealthy in the process.  Fruits, veggies, and maybe ice-pops made from water lightly flavored with fresh squeezed juice.  No cookies, crackers, etc, except maybe tiny bits of sprouted flour products.

But I don't know too much about this condition except what I learned from a one hour show, so take my opinion FWIW.

[MaiaRhysMommy]

Thanks. I appreciate your opinion.  I think that ice pops are a great idea!! And I feel reassured that you agree about the needs of fat for the brain development.

[bremen]

i lived in a group home setting with a woman with prader-willi.

locking all food was a necessity. she would eat flour out of the bag if it was left out. she would eat a can of old grease on the back of the stove.

she really could not help eating so much. she jsut never felt full.

one of the hardest things for people with p-w is that they are smaller, with lower energy, and require less calories than typical people.

imagine always feeling starving, and being told that you had to eat less than those around you.

i am not really sure about the needs for a small child's diet, but for adults, low fat low sugar was important.

people with p-w have different metabolism than typical people. they lose less energy, and metabolise slow. high fiber low fat is the best way to keep their bodies running.

[nandu]

Hi, I am new here.  My son is 5 years old and has Prader-Willi Syndrome.  There is currently no cure for the insatiable hunger, but the outlook now is much much better than it used to be.  You are right, healthier food is essential.  People with PWS require less calories than typical children/adults.  Therefore, their calories must be nutrient rich.  You had some great suggestions already.  My son does not eat low fat.  He eats good fats (low saturated fat oils, avocados, nuts, etc)  We try to do less carbs (some parents do grain free with a great deal of success) and only whole grains, high protein with plenty of vegetables and fruits.  He never has any sugary desserts.  Routines are incredibly important.  Eating at certain times.  Clear away after.  When they know that there is no possibility of more food, they are able to focus on other things.  Locking food may be very important.  I have heard many kids thank their parents when this is done.  But each child is different.  They all get the insatiable hunger, but the drive is much stronger in some children than others.  My child was diagnosed at 9 weeks old.  I can only imagine the difficulty in changing eating habits later on.  Go slowly if they must.  But keep going.  But a healthier diet, exercise and routines will save her daughter.  Fruits and veggies are a great place to start.  Having protein is also good (greek yogurt, cheese, nuts, eggs).  It is a bit more filling.   But definitely with portion control. I would also consult with an endocrinologist and ask about getting growth hormone.  Find one that is knowledgeable and willing.  This will help develop muscle mass and has many additional benefits (only along with diet restrictions).  My son is thin and healthy.  Because of everything we do.  All the best to your friend.  It is not easy.

For more information contact PWSA USA.  They are a huge support organization and can help with any questions.

Feel free to ask me anything you like,

Rhea

[blessedwithboys]

Welcome to MDC Rhea!