I need to address the Prader Willi Syndrome issue.
Yes, there are many who are out there with PWS, but the management would be the same thing. Who buys the food to allow this to happen. Just cause the 'mom might want to eat' what she deemed the child could not have--sorry, I would absolutely have to slap her on that one.
My little brother was born with Prader Willi in 1958. Heaven knows it was not on the medical books at that time. But he received a close DX a few months down the road. Mom saw a program on TV and thought--that looks like Alan. So doctors checked things out and wow--said we were dealing with a cerebral palsy child. Well, at least we know what we were dealing with. His true DX came about age 13. Symptoms are so close that it takes a chomosome testing to verify the difference at young ages.
"It is estimated that one in 12,000 to 15,000 people has PWS. Although considered a "rare" disorder, Prader-Willi syndrome is one of the most common conditions seen in genetics clinics and is the most common genetic cause of obesity that has been identified. PWS is found in people of both sexes and all races."
But of dx of CP did not hurt my brother, we did the OT/PT, did not make him special BUT made him one of us. He had mild retardation as well. Who knows, maybe that was part of the birth process, etc where that developed. All PWs do not show mild retardation. Some show an autistic side, again, we don't know how much is evolved. Each PW has their own unique set of characteristics that come with the story. He had a memory to be challenged, never forgot anyone he ever met, reminded me of RAINMAN movie.
We got him moved from SD to MN into a waivered group home which then led to his own house with a house mom and 3 other guys to share it. 24 hour coverage is necessary as well as nutrition education for all, but esp the PW. Food is kept up and away. Alan was the only PW in his house, but he respected the others. He had part of buying and cooking the meals, knowing what he was allowed to eat, also knowing what he WANTED to eat.
One thing with PW, too many people think they are doing a favor by slipping the child the cookie, etc. Although it changed with times, it still happens. Someone undermines the program. Yes, one slip up DOES count.
A PW's food pyramid is built differently than a normal person. The metabolism is not the same. They can function on about half the calories and still gain weight so it is important the the food bulk is there, just not the calories and carbs. A PW must always have their food regulated. Choices are given, but within a realm of reason.
My brother seems stuck in puberty into his 40s and so the doctors decided to add some hormones that he missed through his teen years. I did not like this at all, I was not his guardian, Mom was. We won't know but Alan died Aug 2007 of a quickly onset of cancers. Lung, lymph nodes, liver, colon. My brother was monthly medically looked at by some medical care. You'd think someone would have caught this. He was put on a diabetic diet counting carbs and this was really working as his diet control. Until he started complaining about being cold all the time, so they went in. Within a week, we had the full dxes and 7 weeks later, we had his funeral.
What I am grateful for is the fact the doctors and social workers looked at my brother and explained things to him, he looked at them, asked questions about surgery, being cured, and then told them he wanted no treatment. This was most difficult on my (elderly) parents and his house mother of 10 years. But we believe the words were the Lord's, not Alan's and there were indeed plans for Alan. For 49 1/2 years he was ours, and the Lord took him home. We went to hospice immediately to make sure all was fine as we could make it. He asked not to be moved to the hospital for any reason. We met all of his wishes as he asked for them. The hardest was when Alan turned down food. Any food. That was 2 weeks prior to his death. He would ask for fresh caught fish to be fixed, we did it. Anything. But his greatest wish was to have the same 50th birthday party he had attended for each of his sisters (3). So we planned the biggest and best party with family, friends, staff. He ordered what he wanted to eat, did not touch a bite. He was surrounded by us all, he smiled and took it all in. He died 2 weeks later. This is it in a nutshell, but he filled our lives with so much love and memories. We took the best care of him all his life. We gave him opportunities to live away from home to have his own life. He was a sibling in all sense of the word. An equal.
Now that we know more about PW, it can be dxed faster and more accurate. But the families have to follow through with the care required. Not all obese children have PW, but all PWs were obese children.
No matter which, they are our future. Obesity is not just a child's disease, but it will shorten their lives if we don't take care of it.
Schools reducing required gym time, recess time, budget cuts, families depending on quick fast drive through meals instead of spending a litle time reading labels, buy the healthier foods. I grow alot in my garden. My granddaughters and I often "eat breakfast" in the garden--take a basket and graze. Teaching proper nutrition is one thing, you must follow through with it. If it is not healthy, do not buy it or allow it in the house. You may crave what you see on TV or magazine/cook book, but that will pass.
Thank you for listening. Alan's sister
(Original Air Date: 11/18/08) Dieters know how hard it is to shed five or 10 pounds. What do you do when you need to lose 100 pounds … and you’re just 10 years old? Dr. Phil talks to parents who say they can’t get their child to stop eating, and they fear this food addiction could turn deadly. Luz’s daughter, Kayla, is just 5 years old, but she already tips the scales at 113 pounds. Luz says her child throws temper tantrums when she doesn’t eat, and she once screamed so loudly for junk food, her neighbors called the police! Does Kayla have an eating disorder, or is Luz enabling her? Dr. Jim Sears, co-host of the hit show The Doctors, gives this mom a wake-up call. Then, Stephanie says her 3-year-old daughter, SaJatta, is addicted to sausage and grits. The toddler weighs 88 pounds and gets winded just walking up the stairs in her house. SaJatta’s grandmother, Mary, says the little girl is spoiled, and she doesn’t know how to say no to her. What do the results from SaJatta's blood work reveal? Can the family conquer her obesity? Plus, Mary says her daughter, Brittany, was an active child until she broke her ankle five years ago. Now at age 10, Brittany weighs 190 pounds, and her folks say she’s turned into a couch potato. How can Mary and her husband, Roger, motivate the child to lose weight? Fitness trainer Robert Reames has a surprise for the family! Talk about the show here.
