There is new breakthrough research on the science of satiety, or the feeling of fullness at the end of a meal, the feeling you are no longer hungry. These principles will also be helpful even for those with PWS. Although each individual has a different abililty to feel satisfied, we want to do all we can to give everyone the optimum pleasurable eating experience with the least feeling of deprivation that we can manage.
For any given level of calories, some foods will have a small effect on satisfaction or fullness, others a large one. Our bodies have systems that signal fullness, and a vegetarian diet that includes high-volume, high fiber plant foods activate the most signals of satisfaction. A vegan diet is especially high in fiber which is very satisfying as well as healthy. Meat has no fiber, but plant food proteins are high in fiber as well as very low in fat.
It is interesting to note that the increased bulk provided by the large amount of bulky and high fiber foods in a vegan diet may cause a normal child to feel full before they have consumed enough calories. Of course, for children with PWS this is helpful in aiding in a feeling of satisfaction. (If there is a concern about reduced caloire intake for normal children in the family, include some refined grained products and peeled, cooked vegetables to reduce the bulkiness of meals. Nuts and seed butters, avocados, dried fruits, and added fats (e.g., vegetable oils) can provide additional concentrated calories without bulk.)
It is particularly important to encourage individuals with PWS to eat as slowly as possible. Thorough chewing not only increases the nutritional value of the food, but aids in the sense of satisfaction in eating. Try playing a game with a reward or small prize for finishing eating within a certain (slower) time frame. Begin with making the time frame short and gradually lengthen it. You may start by having the person imitate you taking bites and chewing at your speed. Start by only doing one or two bites like this and gradually increasing the number of slow eating bites. Don’t rush this learning process, make it playful or a game, and if the person becomes anxious trying to eat slowly, stop.
Below is the sequence of events which contributes to a feeling of fullness. Vegan soup is an ideal food for activating these mechanisms so I have used this food as an example. On a high fiber vegan diet, Ann always experiences a short term feeling of fullness that occasionally will last for one or two hours.
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A vegan soup, hearty but not heavy, is filling, gives pleasure to the tongue and mouth and nose, delivers a visual message to the brain that a large amount of satisfying food is about to be eaten. Although for folks with PWS it may not signal that they have had enough to eat it will help to activate a series of biological and psychological signals that will contribute to a greater feeling of satisfaction.
A low calorie high volume soup evokes a psychological as well as physiological sense of fullness in just about every way a food can. When you start a meal with a bowl of soup, you see a reasonable portion in front of you. This visual clue leads you to think of it as satisfying.
Research has shown that the more sensory stimulation you get from a food, the more satisfying it is. We need a certain amount of chewing, savoring, smelling, tasting, and swallowing to feel satisfaction.
With your first sip you experience pleasant aromas, the taste of sweet and sour and bitter and salty on your tongue, the warmth as you swallow.
As you swallow spoonful after spoonful of the soup, it moves down your throat into your stomach where its big volume fills up your stomach. It activates the stomach’s ‘stretch receptors,’ sending some satiety messages to the brain - even for people with PWS. The more food the more of these messages get conveyed. Even when the calories are low, if you consume a big weight of food, your stomach still has to do the same amount of work, and it takes the same amount of time.
As the soup empties from your stomach satiety hormones are released into the blood, which help us feel full. If you eat your soup with high fiber whole grains and vegetables, it will leave the stomach slowly. As the soup is digested, some of its calories are converted into blood sugar (glucose) which causes insulin levels to rise, and those also provide the body with signals about how much food has been eaten.
Homemade soup is easy to make, but canned and paper cup soups are options, especially for the first course of a meal or snacks. Check the labels carefully as the calorie count and amount of fat and salt varies even in soups that say low calorie.
Please send me suggestions of foods that you have found to be especially satisfying for the PWS person you care for. Also ideas for helping individuals eat slowly.
HOW TO ~
CREATE A 'BOOKLET' ABOUT
YOUR CHILD'S PERSONAL NEEDS
TO HELP OTHERS GIVE
CONSISTENT QUALITY OF CARE
If you would like detailed examples of how it can be filled out, please email me. Please send me suggestions for other formats and what else you might include! I use a 3 ring single essay binder with a clear cover.
CONTENTS: (I also include page numbers)
1. Introduction - (A photo of person
and a paragraph about them)
2. Overview of (Name) - (A page or two of history, current interests and activities, etc.)
Definition of PWS - (One page explanation)
3. Care and Action Plan - (Sample format below)
4. Personal Note -(Family members, primary care givers, and type of support and availability, etc. More photos)
CARE AND ACTION PLAN ~ Prader-Willi Syndrome
Name:
Date Revised:
(Note: 'Behaviors' are specific things that the PWS child or adult says or does. 'Care' is the 'why' so others understand the cause. 'Action' is what to do to help and support.)
CHRONIC FEELING OF HUNGER
Behavior
Care
Action
EMOTIONAL INSTABILITY
Behavior
Care
Action
HOARDING OF POSSESSIONS
Behaviors
Care
Action
LOW ENERGY, SLEEPINESS
Behavior
Care
Action
PERSEVERATION
Behavior
Care
Action
SKIN PICKING
Behavior
Care
Action
DIFFICULTY WITH UNEXPECTED CHANGES
Behavior
Care
Action
Behaviorally difficult children and adolescents are frequently poorly understood and standard approaches to treatment often do not satisfactorily address their needs (and often worsen their difficulties). Standard approaches typically conceive difficult behavior as willful and goal-oriented, suggest that inept parenting practices are the primary factor giving rise to such behavior, and rely heavily on use of reward and punishment programs to induce greater compliance with adult directives.
The CPS model – which was first explained in the book, The Explosive Child – proposes that difficult behavior should be understood and handled in the same manner as other recognized learning disabilities. In other words, difficult children and adolescents lack some crucial cognitive and emotional skills essential to handling frustration and mastering situations requiring flexibility and adaptability. The guiding philosophy of CPS is – “Children do well if they can.” Naturally, if a child is lacking crucial cognitive skills, the goal of intervention is to teach those skills. CPS helps difficult children and their adult caretakers learn to work toward mutually satisfactory solutions to problems, which increases flexibility and frustration tolerance. Research has shown that CPS is a highly effective model of care and is of significant value in reducing physical restraint.
There is a vital need for more humane treatment and enlightened understanding of difficult children (and children in general). This need has led to the creation of the CPS INSTITUTE, based in the Department of Psychiatry at Massachusetts General Hospital in Boston.
