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Feed it with Protein and Fat

Kian is 4 and he is under the weather. He is recovering from a GI problem (diarrhea) and his nose is running. He had a decent night’s sleep last night, but is coming off of a couple of night’s of poor sleep (due to GI problems).

He always starts his morning at 6 AM by crawling into bed with us, eating a handful of walnuts and watching Word World (pretty cool show!). He finishes his handful of walnuts and that is that.

A few days ago, he finished his walnuts and said he was really hungry. I knew he had been struggling with his GI problem and was likely having trouble absorbing the nutrients he needed and so I went downstairs and brought up a half cup of walnuts which he ate. He then proceeded to eat his full breakfast at 7:30 plus more almonds.

Today he ate his handful of walnuts and said he was really hungry. Today I was lazy and didn’t want to get out of bed and I accused him of messing with me and told him to wait until 7:30 for his breakfast.

He spent from 7:00 to 7:30 screaming at me and his sisters. Screaming about everything. Real temper-tantrum stuff. Kian is normally the sweetest boy you can imagine. Me, in my haze, I accused him of misbehaving and told him to cool it. Thank goodness I didn’t do anything more harsh.

I made his breakfast. At 7:45 he had half of a fried egg in him. I swear he visibly changed. His shoulders relaxed, he smiled and he was my little boy again.

When he came home from school, we discussed it. I told him that I would try and do a much better job of listening to him and asked him to try and do a really good job of listening to his body and using different words to describe whether he wants to eat something or whether he is really hungry.

I keep worrying that our kids are having bizarre behaviors because they are honest-to-goodness starving and their brain is kicking out wild stuff in an attempt to survive.

Note that Kian's BMI is in the 25th percentile (he is tall and slim and active).

Hunger as Part of a Growing Phase?

I am realizing that Kian is atypical for PWS and that what I notice about him may or may not be relevant to other kids. I do not know if it is because we are lucky or because of things that we have done (probably both). Here are my observations of Kian and interpretations of my observations.

I believe that Kian has regular growth spurts just like other kids. He goes through periods where he is barely interested in foods and periods when he wants to eat a lot. When he wants to eat a lot (as happened last fall) it as if his body doesn’t know how to use the extra calories. My girls have always eaten a lot, gotten taller, and then slowly filled out. You know how some kids fill out and then get taller? Well, Kian seems to be sort of an extreme version of filling out and then getting taller.

I decided not to limit his food during this growth phase (age 5). Instead, I just was very careful to give him lots of protein and good fat. I made sure that he could satisfy his hunger with that so he was not tempted to eat carbs. This odd-looking growth phase lasted for about 4 months and it was scary. I was afraid it was the beginning of the end. One night he ate a pound of ground beef. But, I stayed the course and did not restrict calories. I did limit snacks and implemented the family rule that a snack is a snack and a meal is a meal. This helped me to focus him on sitting down and eating meals as opposed to loading calories mindlessly while running around. Kian gained weight. He was 5 years old and he went from 48 pounds to 53 pounds in the course of 4 months. It was scary, but I just hung on. I put a lid on carbohydrates, kept him active, and limited snacks to celery, a hard boiled egg, or a few almonds. Meals were virtually unlimited affairs of protein and vegetables.

Then, after 4 months, he stopped gaining weight. And we measured him and he had grown half an inch. And, he lost interest in food. And, he started losing weight. Eight months after the beginning of the weight gain, he was back down to 48 pounds and had grown another half inch. And, he was stronger, and smarter, and more muscular.

So, in retrospect, he looked like my daughter when she went through a growth spurt. The slip of a girl could eat a whole pound of steak in one sitting. Or a whole can of salmon with mayonnaise or 4 hard boiled eggs or ¼ cup of peanut butter and she would circle back around an hour later for fruit, a smoothie, something sweet, or all three. We don’t have excess carbs around the house and so she turned to protein and ate and ate. She was about 6 years old at the time. And, she shot up. She stayed skinny and is only now (at 9) starting to fill out a bit, but she had a huge feeding frenzy. Now she is filling out a bit and she hardly eats anything.

I think that the metabolism of growing kids is mysterious. If your kids are healthy and thin and you provide them with unlimited healthy food options then there is rarely a need to think about it at all.

But, heaven forbid you have a kid with PWS, then you second guess every bite and every pound and every meal of apparent gluttony. I work hard to be peaceful and be in the moment with my little boy and not project a horrible future on his every action and choice. This is a big lesson for me. I have made some progress and he provides me with many opportunities every day to perfect my understanding.

I would add one other thing and that is that when Kian has a higher carb day, the next day he is hungrier than usual and craves carbs. While I notice the same thing for myself and my girls, it is quite pronounced with Kian. When I look at it through my fearful PWS eyes, it looks like THE HUNGER. It goes away, though, if I focus him on protein and vegetables. I point out to him that it can’t be hunger since he can have all of the protein and vegetables that he wants to eat.

Linda Gourash

Notes from 2005 PWSAUSA notes from talk by Linda Gourash, "Lack of Satiety: It's not Just About Food."

She proposed a shift in the paradigm from thinking of the kids as always hungry to thinking that they are not sated. She described the study results that showed that when put in front of a buffet when "hungry," they start out eating slowly (more slowly than hungry obese people) but eat for much longer and never really slow down in their eating (as opposed to obese people).

Also, satiety circuits in the human body are much more redundant than hunger circuits suggesting that satiety is more important.

She suggests that an unknown neural defect translates into lack of food satiety and possibly other excessive behaviors.

The OCD like traits may then add to the food problem.

She believes that hunger signals are also blunted because: - infants with PWS are disinterested in food and cry very little - anorexia with excessive weight loss has been observed in PWS patients - persons with PWS may go to bed without eating something for days in association with anger, stubbornness, depression, or psychotic illness - families report success in sustaining patients on controlled 800 calorie diets

She recommends giving the child a lot of food to eat (plated for a meal) but focus on bulk foods and green foods. Supply condiments in packages (like at fast food places) to avoid negotiations

She notes that people with PWS also ingest non-nutritive things in excess: - overuse of non-nutritive beverages (diet sodas) - overuse of tobacco (smokeless and nonsmokeless)

Other excessive noningestive behaviors that are analogous to "lack of satiety" - collecting excessive numbers of ______ (CD's stuffed animals, etc.)

Physical signs of impaired feedback in PWS - altered pain awareness (many examples) - skin picking (lack of response to pain, lack of disgust) - BM smearing/rectal picking (lack of disgust) - incontinence (bedwetting when awake - lack of discomfort/disgust) - diminished sensitivity to increased carbon dioxide and decreased oxygen - diminished shame and modesty

She proposes that they have relative insensitivity to both hunger signals as well as satiety signals.

Thus the drive to eat would not be related to OCD, but rather to limited feedback.

She would like to see a de-emphasis of the hunger paradigm.

She proposes behavior management in the form of continuous external feedback.

And then she stopped.... Just like that!

Actually, now I understand that if you want to know more about how to address this issue with a child who has PWS, you nave to pay the National PWS group <>. They will sell you a DVD. I have bought one and it is backordered. WHen I get it, I will try and take the time to summarize here.

Practical Advice

First, take a deep breath and try to get your composure. She will "feed" off of your anxiety and become more upset. It will help her if she can sense your quiet resolve and know that she doesn't have the heavy responsibility of being able to change your behavior with hers. If I were you, I'd set up a routine for eating and try to stick to it. (You can relax this later.) You mantra has to be something like this...I can't feed her enough to make her happy, but I can feed her enough to keep her healthy. As long as you have a balanced, nutrient dense diet in place, you know she is not technically deprived. With meals and snacks spaced so that she doesn't go without food for more than 2 1/2-3 hours, her blood sugar should be stable. I would start to add flax meal to something at most meals because we have found that it helps. Start with 1 teaspoon 2X/day mixed in applesauce or yougurt, or sprinkle it in her cereal. It's both an EFA and extra fiber and often helps with satiety. Another thing I'd do is spice up her food. You don't have to burn her mouth out, but slowly increase the kick so that it is more likely to register in her brain that she has eaten. Think curry, cumin, cinnamon, as well as the more heat-producing spices. I'd also recommend as much organic, and as little processed, food as possible. Knowing that she has enough good food for her body to function, we move on from there.

She's upset. She's hungry and uncomfortable. You've already identified one very helpful hint...keep her occupied. Boredom is not your friend. This is very important and what you do during this time is also important. Have her involved in activities that are calming, activities that require jumping, pushing, pulling, swinging, anything that increases input, deep pressure input. Children with PWS seem to need more input from everything. Not only do these types of activities burn off calories, but they go a long way toward calming that central nervous system that is on the edge.

Another important factor is sometimes the hardest. How we structure our lives and our priorities has a lot to do with our children's sense of calm. It is essential that we look at our schedules and our commitments and see what can be eliminated. It's sounds like a no-brainer, but it's a battle I face all the time and it takes constant monitoring. If our lives and schedules are strained, then our children, especially those with PWS, will be too. If we look at the most likely battle times, it's often when we're rushed and trying to get out the door. I know it could be said that the same is true of typical families, but, as we know, everything with PWS is intensified and that makes all the difference. So, looking carefully at what in our lives is essential, and what can be given up, is key to a smoother flow. And a smoother flow to our lives helps support our children with PWS who tend to be a little more fragile, more sensitive to our stress as well as their own.

Therapy...I would run, not walk, to my OT and find out if she/he is trained in the Wilbarger protocol (brushing w/strong sensory diet) and in listening programs. We have talked about this before and if you don't have the information I sent you, I will put it together again. These types of programs work on calming and organization and can be very helpful.

Finally, I'd try to stay as close to her as I could through the hard times. It's critical for her to know that even when she is out of control, that you are in control and not going to leave her. It's less important what we say than what we do. We sometimes try to talk our children out of their discomfort, usually trying to convince them that it's not real. To them, it is real, and our denying that just adds to their frustration. When she's upset, hold her if you can, sometimes the tighter the better (that input thing again, deep pressure being calming). If not stay near so that she has your presence to help her calm.

Sensory stimulation for hunger

I know this is hard. I'd give anything to make it go away for you and all of us. What I decided long ago with Erin was that I couldn't feed her enough to make her happy so I vowed to feed her enough to keep her healthy. Then, I've tried to fill her up with other things--good experiences, fun memories, and meaningful relationships. Keeping busy with these things at least distracts from hunger.

Another thing that I believe really helped Erin early on was a strong program of sensory integration. Filling her body with sensation with everything from massage to heavy lifting to trampoline and so forth helps keep her "full." The Wilbarger protocol of "brush and pump" helped by inputting sensation in a very intense way.

Finally, and I know you do this very well, is keep pumping that child full of love. A diet full of all the hugging and cuddling and kissing possible helps strengthen the spirit (yours and his) for those rough times.


Copyright © 2006 Cell Press. All rights reserved. Cell Metabolism, Vol 4, 223-233, September 2006

Article Critical role for peptide YY in protein-mediated satiation and body-weight regulation Rachel L. Batterham,1, Helen Heffron,1 Saloni Kapoor,1 Joanna E. Chivers,1 Keval Chandarana,1 Herbert Herzog,2 Carel W. Le Roux,3 E. Louise Thomas,4 Jimmy D. Bell,4 and Dominic J. Withers1


Dietary protein enhances satiety and promotes weight loss, but the mechanisms by which appetite is affected remain unclear. We investigated the role of gut hormones, key regulators of ingestive behavior, in mediating the satiating effects of different macronutrients. In normal-weight and obese human subjects, high-protein intake induced the greatest release of the anorectic hormone peptide YY (PYY) and the most pronounced satiety. Long-term augmentation of dietary protein in mice increased plasma PYY levels, decreased food intake, and reduced adiposity. To directly determine the role of PYY in mediating the satiating effects of protein, we generated Pyy null mice, which were selectively resistant to the satiating and weight-reducing effects of protein and developed marked obesity that was reversed by exogenous PYY treatment. Our findings suggest that modulating the release of endogenous satiety factors, such as PYY, through alteration of specific diet constituents could provide a rational therapy for obesity.