Feeding problems plague the life of the PWS child and family. During the first year it is important to do everything possible to ensure that the child has adequate calories to ensure growth and especially brain growth. After that, the whole family must follow a healthy eating plan that promotes physical and mental health for all involved. A pediatric nutritionist can be incredibly helpful in designing such a plan.
Some parents have had good success keeping their own growth charts for their PWS children. You can download the exact ones your doctor uses from the Centers for Disease Control.
There are different charts for boys and girls; so make sure you get the right one. You'll want weight-for-age, length-for-age, and weight-for-length. You can also get head circumference-for-age.
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Avoid Catch-up Growth
Very interesting abstract on catch-up growth. It really emphasizes that we should do everything we can to keep our babies on the normal growth curve that first year of life so that they don't experience the typical PWS rebound/catch-up during the second year of life.
International Journal of Obesity (2006) 30, S23–S35. doi:10.1038/sj.ijo.0803516
The thrifty 'catch-up fat' phenotype: its impact on insulin sensitivity during growth trajectories to obesity and metabolic syndrome
A G Dulloo1, J Jacquet2, J Seydoux2 and J-P Montani1 1Division of Physiology, Department of Medicine, University of Fribourg, Switzerland 2Faculty of Medicine, University of Geneva, Switzerland
Correspondence: Dr AG Dulloo, Division of Physiology, Department of Medicine, University of Fribourg, Rue du Musée 5, CH-1700 Fribourg, Switzerland. E-mail: email@example.com Top of page Abstract
The analyses of large epidemiological databases have suggested that infants and children who show catch-up growth, or adiposity rebound at a younger age, are predisposed to the development of obesity, type 2 diabetes and cardiovascular diseases later in life. The pathophysiological mechanisms by which these growth trajectories confer increased risks for these diseases are obscure, but there is compelling evidence that the dynamic process of catch-up growth per se, which often overlaps with adiposity rebound at a younger age, is characterized by hyperinsulinemia and by a disproportionately higher rate in the recovery of body fat than lean tissue (i.e. preferential 'catch-up fat'). This paper first focuses upon the almost ubiquitous nature of this preferential 'catch-up fat' phenotype across the life cycle as a risk factor for obesity and insulin-related complications – not only in infants and children who experienced catch-up growth after earlier fetal or neonatal growth retardation, or after preterm birth, but also in adults who show weight recovery after substantial weight loss owing to famine, disease-cachexia or periodic dieting. It subsequently reviews the evidence indicating that such preferential catch-up fat is primarily driven by energy conservation (thrifty) mechanisms operating via suppressed thermogenesis, with glucose thus spared from oxidation in skeletal muscle being directed towards de novo lipogenesis and storage in white adipose tissue. A molecular–physiological framework is presented which integrates emerging insights into the mechanisms by which this thrifty 'catch-up fat' phenotype crosslinks with early development of insulin and leptin resistance. In the complex interactions between genetic constitution of the individual, programming earlier in life, and a subsequent lifestyle of energy dense foods and low physical activity, this thrifty 'catch-up fat' phenotype – which probably evolved to increase survival capacity in a hunter–gatherer lifestyle of periodic food shortages – is a central event in growth trajectories to obesity and to diseases that cluster into the insulin resistance (metabolic) syndrome.
Question: Should I keep using the NG tube (which seems like I am rewarding his behavior) or should I push the bottle and keep going for 1 hour (risking that he starts really hating feeding time)?
Answer: The biggest thing that I would say is that you are not rewarding or punishing behavior with the NG tube. You are helping him to survive. I don't think that you can modify a baby's behavior at this age with rewards and punishment. I think that they are just figuring out what living out of the womb is all about and for these little folks it is a tough lesson.
Can you cut the nipple? If your son is ok at coordinating swallowing, you may be able to cut the nipple and that will help the flow so that he doesn't have to suck as hard.
One thing that we did is monkey around with changing the ng tube. The next time that you have to change the ng tube, take it out right after feeding him. Then let him try to go the next couple of feedings just by mouth. The killer feedings are the ones at night, but still it may be worth a try. Our baby seemed to do much better at eating when he didn't have to work around the ng tube. He spent a couple of days off of it during a one week period and then he seemed to be doing well enough that we decided to commit the hours to helping him make it through the night without the ng tube. He did it and we kept going knowing that at any point we could put it back in if he (or we) needed the extra help.
I believe that our baby has very little sense of his tummy. He doesn't really know when he is hungry and he doesn't really know when he is full and he doesn't really know how to suck and so he gets no pleasure from sucking. Consequently, there is very little reward in eating for him. If this is the case for most PWS babies, then no wonder they don't spend their precious energy eating. That said, more recently, he has shown some indication that he knows a little hunger; however once that hunger is cut with say, 2 ozs of formula, then he loses interest rapidly...
Our speech therapist told us that we do need to be concerned about oral aversion. It didn't happen with us, but it is probably good that you are aware of the potential.
On the issue of drinking out of a cup due to aspiration, my son had to use Thick-it until almost 2 years old. It is great because you can mix it as thick or thin as you like and it supposedly doesn't change the taste. We were able to get rid of the feeding tube at one year by using this. It is a powder you just mix into any liquid or food to get the desired consistency. It comes in a can about the size of a can of formula for about 8 dollars I believe, or they have huge cans for 20 dollars. You can get it at any drug store, insurance wouldn't cover it for us because it's not a prescription but it is worth it. You have to use a cup with a slit, not holes because it won't come out of the holes. We used the First Years cups with the clear plastic covers, they are not very expensive. I would definitely check with your doctor first, but it worked for us and relieved my anxiety.
Thickening with Chia Seed powder : 03/2019 update
This update is written by Segevs Dad. we experienced aspirations and choking as well, following this site guidelines to avoid simple carbs, we didn't choose thick-it as it is 100% carbs. We thickened the bottle with chia powder which we grinded once a week. Chia seeds contains fat, protein and dietary fiber, and low amount of carbs. It thickens the formula very well (It does take a minute for the thickening to affect)
Essential Fatty Acids
Nutrition. 1997 Nov-Dec;13(11-12):978-85. Related Articles, Links
Recent advances in the biology of n-6 fatty acids.
Galli C, Marangoni F.
Institute of Pharmacological Sciences, School of Pharmacy, University of Milano, Italy.
The intensive research carried out in the last 10 years on the unique biological functions of n-3 fatty acids (FA), has promoted comparative investigations on various aspects (metabolic, functional) of the biology of n-6 FA. The involvement of peroxisomes in fatty acid metabolism, initially described for the n-3 acids, has now been shown also for the n-6 FA (formation of 22 carbon delta 4 unsaturated FA, formation of newly identified products of beta-oxidation of arachidonic acid, AA). Additional pathways of AA conversion, beyond the classical eicosanoids, give rise to a series of biologically active products, such as the epoxides, involved in the modulation of vascular functions, through the cytochrome p450 system, and to the AA-ethanolamide, anandamide, an endogenous ligand of the cannabinoid receptors, through a phospholipase-mediated process. Finally, nonenzymatic oxidation products of AA, the isoprostanes, isomers of prostaglandins, also endowed of potent biological activities, are generated both in in vitro-induced lipid oxidation and in vivo, being considered as reliable markers of in vivo oxidative stress. As to the nutritional aspects of the n-6 FA, attention is now paid to the intake of preformed long-chain polyunsaturated FA (PUFA) in the n-6 series, mainly AA, through the diet, in analogy with the intake of the long-chain n-3 FA, in fish-eating populations. The importance of the dietary intake of preformed AA is now recognized in newborns, through maternal milk. The ranges of the intakes of AA in population groups, not currently adequately estimated, appear to be wider than generally assumed, and the elevated intakes in some population groups, in the order of several hundred milligrams per day, may be partly responsible of yet unexplored population-based differences in physiologic variables. Recent research on the functional effects of n-6 FA has confirmed their lipid-lowering effects, which can be observed also in neonates, and has shown that, in cooperation with the n-3, they directly and indirectly contribute to modulate functional parameters at the cellular level, such as receptor function, ion channels, and gene expression. From a nutritional point of view, it is clear that PUFA represent the biologically most active component of dietary fat, and the n-6 are quantitatively the most relevant fraction in our diet. In the light of the diversified activities of n-6 and n-3 PUFA, a correct balance between the various fatty acids is recommended.
Go to Healing Thresholds for an overview of essential fatty acids
See if you can get a nutritional consult in an effort to reduce calories. It should open your eyes to hidden calories. Remember these word: high fructose corn syrup. It's sugar & a cheap widely used sweetener. Avoid it at all costs. It's full of calories. Read yogurt labels. You'd be surprised how much sugar is in there. I could go on & on.
There's tons of hidden calories that can be taken out if you cook yourself rather than buy prepackaged or frozen prepared food. The only frozen foods I buy are veggies without sauces or butter, cavatelli, gnocchi, ravioli & tortellini. I simply don't have the patience to make these, but watch portions very carefully.
I find PWS parents have to learn to cook all over again if they weren't following an eating plan consisting of high fiber, low in sugar, high in veggies & fruits, full of lean protein & water!!! And with reduced metabolism, it's a double whammy to try to eat healthy & keep the calorie count down & still satisfy the child. Sounds simple, but if somebody isn't following a healthy eating plan, not a diet, it might be hard to convert. I've always had an interest in this due to heart disease in my family & diabetes as well.
Remember children are like monkeys: monkey see, monkey do. You have to set the example for Chris to follow.
I think the biggest eye opener is portion size. We are a super sized society whether we order super size at the drive in or not. Our dinner plates are larger. Meals in a restaurants are meant to serve 2. I always take home half of my entree. Most kids meals in restaurants are crap. You'd be surprised how many restaurants will substitute steamed veggies or applesauce if you ask.
Read labels. Labels. Labels. Labels. It's VERY eyeopening. Check the PWSAUSA website also. There's also some good websites like the FDA, Dole 5 a Day, American Cancer Soceity, American Diabetes Assoc, etc.
It is good to have a nutritionist on your team. I can recommend a wonderful woman named Melanie Silverman. Her web site is www.feedingphilosophies.com. She has spent a lot of time researching PWS and talking with me about it and I think she has great insights. She is based in California, but does phone consultations.
Our nutritionist recommended that I read this book and I finally did.
Your Child's Weight: Helping without Harming (Paperback) by Ellyn Satter
I have found it to be very thought-provoking. We eat three meals and two snacks. Pretty much everything is eaten at the table, with no books or tv. My oldest burns a lot of calories (gymnast) and she is allowed to have an additional snack before her later bedtime.
We never make anyone eat their food or clean their plate. We don't reward anyone with food. We celebrate good-tasting food. I cook most meals, but I cook simply: brown rice, baked salmon, salad, fruit, yogurt. I don't cook specific foods for anyone. If they don't like what I make, they can fill up on yogurt and fruit.
The hardest thing for me is that I have two older girls with fast metabolisms and one 2 year old with PWS. So far he doesn't have eating problems, but he does have a slower metabolism than the girls. I do try to slip higher calorie foods to them. For example, because he is little, I don't let him have peanut butter yet, and I give the 5 year old a lot of peanut butter for snacks. Also, I try and slip higher calorie granola bars into the older girls' lunch boxes.
We work actively with a pediatric nutritionist and I am constantly learning.
Specific Carbohydrate Diet
I posted about a month ago that we are using the specific carbohydrate diet (SCD). Several people wanted to me to keep them informed on how she is doing on it. I am now convinced that this is a much better plan for her than the regular GFCF diet. Her tummy has slimmed down, and she is very happy with the food she is eating. Here is a sample meal plan for the day:
Breakfast: sausage hard boiled egg 1/2 banana
Lunch fish zuchinni piece of bread (I make it from eggs and almond flour)
Dinner chicken sweet potatoes cucumber/tomato salad
Snacks raisins jello with small amount of apple juice and stevia
Drinks I try to follow someone's good advice to try to keep drinks down to almost no calories. I put in a VERY small amount of juice or almond milk, fill the cup with water, and put in 3 drops of stevia.
I recently added goat milk yogurt, and she loves that.
I never thought I would be able to say this, but we have entered a grace period with regards to eating. It started when ous on was approximately 1 year old and he is now 19 months old. We do not worry about his food. Of course we feed him healthy food and we do give him vitamins mixed in applesauce and sometimes that is a pain, but he self-regulates and drinks from a straw sippy cup and feeds himself with a spoon and a fork. He frequently asks for more food, but that is so he can feed it to the dogs.
He is approximately 25% for weight and 75% for height. He eats eggs and avocado and bananas and most anything else that we eat. I have no idea how long this will last. When we asked our endocrinologist (Dr. Carrel) he said that not all kids get the hyperphagia and it is possible that this phase last forever. So, we are enjoying it. Whether it lasts foreveror not, right now all is good.