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Feeding and Dietary Issues

  Abby                                                Feeding a baby with PWS during the early months can be a time consuming and worrisome issue. While not all children are severely affected by low tone and poor sucking reflex, many of us have dealt with measuring every last cc of milk and using ng or g-tubes for some amount of time. Our son’s g-tube was quite intimidating at first and we dealt with leakage and an infection at the tube site. While it took us a good month to adjust to the routine, it soon seemed as normal as changing diapers.  
    
An Occupational therapist (OT) can be very instrumental at this early stage. Massage and gentle tapping around the baby’s mouth before feeding can help ‘wake up’ those muscles and lead to more successful feedings.  Cross cutting the nipple to make a slightly larger hole, or using a special bottle called a Habermann Feeder may also be useful during this early stage. Tapping the bottom of the bottle and slowly twisting it while feeding as well as supporting the babies chin during feeding can help baby from falling asleep or losing interest. Some babies even respond to rhythmic music during feedings! The OT will help set up a successful feeding program at home if necessary.

Moving on to solid foods brought with it a ton of questions for us. Nutritionists, doctors, internet sites and books all offered different approaches to dietary management. Three points made excellent sense to us:

1.    Fat is very important in early brain development but all fats are not created equal.

2.   An early diagnosis brings with it the opportunity to develop early healthy eating habits. This didn’t necessarily mean limiting calories at this stage, but choosing carefully where these calories would be coming from.

3.   Water is important in a balanced diet once the o.k. is given by a doctor.

1.  FAT. I was sure this word was my nemesis once I learned about PWS. I was confused about how to balance my gut reaction of avoiding fatty foods with the fact that fat is essential in early brain development. Surely I wanted Nick to have every brain development advantage possible, but I was also uneducated about how to use fats to our benefit. Reading up on saturated vs. unsaturated fats and Essential Fatty Acids (EFA’s) was a huge step towards learning how to use fats to our son’s advantage.

Saturated fats are found in many processed foods as well as meat and whole dairy products. These fats are used for energy but do not aid in the functions that EFA’s do. They raise your blood cholesterol and have been linked to heart disease. On food labels these fats may be referred to as ‘hydrogenated’ or ‘partially hydrogenated’ fats. This process of hydrogenation is what changes an unsaturated fat into a saturated one, making it more difficult for the body to utilize.

Unsaturated fats come in 2 forms, monounsaturated (found in avocadoes, peanut butter and olives) and polyunsaturated (found in fatty fish like salmon, nuts and vegetable oils). Polyunsaturated fatty acids are often referred to as the ‘omega 3’s.

EFA’s. These are not made by the body and are supplied by the polyunsaturated rich fatty foods and/or through supplement capsules. They are integral in brain and central nervous system development. If you choose to discuss EFA supplementation with your doctor, reading The LCP Solution by B. Jacqueline Stordy, Ph.d. can be a good start for information. www.apraxia-kids.org also has articles and links to EFA companies. From their main page, click on ‘Resources’ and then scroll down to ‘Complimentary and Alternative therapies’ for this information. 

By focusing the fat intake of the diet largely on EFA and unsatured fat containing foods it is possible to provide the brain with that important building tool without having as negative of an effect on cholesterol and weight that a largely saturated fat diet would have. More Information.

  2.  Healthy Eating Habits:  Setting up your healthy eating routines will vary from family to family. These are some general tips that we have found helpful:  

*Smaller, more frequent meals. See the article by Abby's Dad, Jeff.

*The darker the fruit the higher the vitamin/mineral content. Fruits like berries pack a higher nutritional punch than ‘white’ fruits such as pears and apples.

*Some veggies (like potatoes) are higher in carbohydrates than others.

*Label reading: health food stores and many main stream markets now carry products made without hydrogenated oils. This can be very helpful, especially when it comes to picking ‘treats’ like cookies.

*Counting Calories: Some families take this approach to managing the overall diet of their children. Food Values of Portions Commonly Used by Jean A.T. Pennington as well as the USDA nutrient database www.nal.usda.gov/fnic/cgi-bin/nut_search.pl can be useful tools for this approach.

3.  Water. Water is an important component in a healthy diet. It aids in flushing toxins, maintaining energy, body temp regulation, cellular and brain processes. Some families have reported difficulty in encouraging their toddlers to drink water. We experienced this issue ourselves and these were some things that were helpful:

**Gently flavoring the water with mint leaves, an orange/lemon slice, or a mild non-caffinated tea.

**Using flavored water drinks such as those made by ‘Glaceau’ – 50 calories per 8 ounces (this brand does not utilize artificial sweeteners but there are other companies whose products do use artificial sweeteners and are therefore lower or no calorie).

**Stirring 2 tablespoons of yogurt into the glass of water for flavor with the added benefit of calcium and protein.

**Adding ice for both noise and a different sensation.

**Using a cool sports bottle or moms ‘grown up’ water bottle.

**Offer water often in the car when there are few distractions and the kitchen with ‘other options’ isn’t in sight.