jesland,
I agree with you. Sometimes you can use food as a reward. Jeremy would always has seconds at dinner. The seconds he got were part of his calorie count for that meal. He got the same amount just not all at once.
I also agree that seeking alternative treaments is an option. We even tried some before he was diagnosed. However, I think that there are many proven methods on how to manage a child with Prader Willi (PWS). Parents of a child with PWS should be getting their information from the National Prader WIlli Syndrome Association or the Local/State PWS associations and not from this message board.
What is disagree with are Jaclyn's statments "Reward your daughter by feeding her. My professional advice is that she always have a cold bottle of water (so she feels full) or milk and a box of a dozen popsicles a day is not going to hurt her. Tell her she can have unsalted homemade potatoe cubes but ask her if she first will drink a full cup of kool-aid and then ask her if she wants another, before she can have the potatoes. Something where you used healthy foods to reward her. Plan ahead that you will have to feed her veggies and sandwich halves 12 times a day. "
"she always have a cold bottle of water" most people with PWS do not like plain water and won't drink it.
"or milk and a box of a dozen popsicles a day is not going to hurt her" popsicles are no more than frozen sugar water that are full of calories and even 0% fat milk is 90 calories per cup.
"unsalted homemade potatoe cubes but ask her if she first will drink a full cup of kool-aid " I don't know how many calories are in the potatoe cubes but the kool-aid is more than likely sweetend with sugar adding to the daily calories count. It won't take long before 800-1200 calories are wasted in junk. A PWS diet is anywhere from 800 to 1400 calories per day.
"Something where you used healthy foods to reward her. Plan ahead that you will have to feed her veggies and sandwich halves 12 times a day. " This is just foolish, even healthy foods that exceed daily calorie count are bad. It is better to start a PWS child out giving them rewards for their good behavior that are not food related. We went to Jeremy's school every year and had all of his teachers agree to provide him with rewards that were not food related and we did the same at home. It can be done and it will work.
A PWS child must be on a strict calorie limited diet. Any food the child has outside of their meal plan (breakfast, snack, lunch, snack, dinner) must be offset at another meal for its calorie content.
Even ZERO calorie foods are risky (they may contain up to 5 calories by FDA definition). A PWS child that binge eats on anything including zero calorie food can risk a serious medical emergency called "GI perforation" that can lead to death, more information is available at: http://www.pwsausa.org/syndrome/acute_gastrointestinal_episodes.htm
Get the acurate information from the professionals. Go to the PWS web site: www.pwsausa.org
Pete
(Original Air Date: 11/03/05) What if you were so obsessed with eating that it almost killed you, or craving food so badly that you yelled, kicked and screamed when you couldn't get enough. Nichelle's 6-year-old daughter has Prader-Willi Syndrome and constantly wants to eat. She once threw a fit so loud, the neighbors called the police. Can Nichelle learn to control her own temper when her daughter has a tantrum? Then, Dr. Phil follows up with Kathy, an anorexic whose condition was so severe, she weighed only 68 pounds. She spent three months in treatment, but her struggle is not over yet. Can her family learn the difference between supporting her and enabling her? Talk about the show here.
