Feeding Issues


All people with SLOS have eating issues. For some it begins at birth with the absence of a suck and/or swallow reflex which requires the placement of a g-tube in order for the children to be able to go home. For others the suck/swallow reflex is there, but is not that strong, in which case feeding is very difficult trying to get the child to take in as much nutrition as he or she needs. In more mild cases the child may nurse fairly well, but does not like the change to textured food. In all cases, feeding is a struggle especially with reflux in the mix, and generally the children are small; perhaps not even on the charts. The doctors seem happy if the children gain weight and follow the curve even if they are not on the chart. What follows here is some general information on feeding and tips and tricks parents use. A Occupational or Speech Therapist that specializes in feeding disorders can help immensely.

Calorie Intake:
As a general rule, SLOS kids require fewer calories than other kids their age. Add to that, cholesterol is more effective if it goes to the muscle instead of fat. Therefore most specialists currently recommend keeping the kids close to the 25% for weight to height. An example for a severe infant, fed by g-tube, with reflux issues, recommended intake is 85-100 calories/kilo/day with about 120cc/kilo/day of fluid. To calculate minium calories needed: Take weight in pounds and divide by 2.2 to get kilos; Then multiply by 85 (minimum calories per kilo per day) to get minimum calories your child needs per day. Keep in mind that all children are different and it is imperative to consult with the specialist.

Oral Feeding Suggestions:
There are two aspects to oral feeding; one is trying to get g-tube fed kids to eat orally, and the other is to get oral fed kids to actually eat enough to sustain themselves and grow. In the latter, getting enough calories into the kids who typically don't want to eat anything is tricky, so finding ways to add calories to foods sometimes without changing the taste is a must. One of the most common things that is done is to try and add egg yolks to foods. Recipes can also be found on this web site.

Foods to try for calories:

  • Yo Baby yogurt
  • Yoplait Custard Style Yogurts
  • Beechnut First Advantage | Is higher in cholesterol and made with dried egg.
  • Add butter, cream or sour cream
  • Use Juice instead of water to mix formula
  • Add Dark Karo Syrup to drinks or bottles
  • Cream of wheat mixed with egg
  • Cream of wheat made with butter, brown sugar and a dash of cinnamon
  • Rice cereal with fresh goat milk | Goat milk will digest in 20 minutes instead of the normal two hours
  • Egg custard (Heinz brand baby food) or instant puddings made with 1/2 cream, 1/2 milk
  • Poached eggs with bread and butter mashed together
  • Creamy soups
  • Eggnog
  • Gerber white grape juice is high in calories or juice with yogurt
  • Egg yolk, bannana and apple juice
  • Pudding with eggs
  • Pound Cake (has lots of eggs)


Additives:

  • Kaolectrolyte (Packets of Electrolytes that are mixed with 8oz water)
  • Flaxseed oil (Supposedly flaxseed lowers cholesterol, the oil version increases it)
  • Spirulena powder
  • Polycose by Ross is a calorie booster
  • Duocal
  • Scandial powder is a calorie booster
  • Carnatine - like a liquid amino acid; by Prescription
  • Microlipid | 50% fat emulsion; 4.5 cals/ml
  • Cinnamon supposedly aids digestive system


Foods to try for flavor:

  • Strong flavored foods such as salsa and chilli
  • Add flavored extracts such as cherry or lemon or jello flavoring
  • Add spices such as cinnamon
  • Mix in Chocolate sauce
  • Top meat with Ketchup or Italian Dressing
  • Pureed chili
  • Vanilla Rice Milk
  • Pureed Hotdog, instant mashed potatoes and babyfood veggies
  • Redi-Whip topping


Non-Milk Substitutions:

  • Ovaltine
  • Soy milk
  • CoffeRich non-dairy creamer
  • Tofutti ice cream substitute
  • Slimfast made with Soy


Feeding Techniques, tips and tricks:

  • Oral motor excersizes to waken mouth
  • Rub inside of mouth with toothbrush or NUK toothbrush, toothettes, etc.
  • Use vibration or battery operated toothbrush around and in mouth
  • Stroke tongue to bring it forward; use dum-dum suckers
  • Rub under chin and middle of top lip to make them swallow
  • Put fruit pieces in cheese cloth or gauze (softer than feeder)
  • Ice cube in a cloth to suck on
  • Let them stick their fingers in salt and lick it off - makes them want more liquid
  • Let them stick fingers in jello powder and lick it off
  • Hold water in a straw, put the end of the straw in their mouth and let water trickle in
  • Use cup with straw and when their mouth is on the straw, squeeze until they learn to suck
  • Use a mirror so they can watch themselves
  • Distract them with TV, music, etc.
  • Spoon liquids into the mouth - can add extracts to the water
  • Try to use rhythm from jar to mouth
  • Roll foods into balls to help them coordinate the tongue
  • Use cohesive foods (look same after chewed) so that spitting them out isn't different
  • Add crackers, cookies, pretzels to pudding or yogurt (they get soft)
  • Hook up the pump behind the chair while oral feeding so the full feeling becomes associated with eating


Feeding apparatus:

  • Haberman feeder (very good for cleft palates)
  • Gerber Nuk nipples and bottles
  • Avent variable flow nipples and bottles, and soft spout cups
  • Parent's Choice nipples and bottles (WalMart brand)
  • Baby Safe Feeder at various stores and 800/589-8895
  • Feeding Therapy items at http://www.new-vis.com


Formulas:

For those that are g-tube fed, the right formula can make all the difference in reflux and weight gain. Here is a list of formulas that families have used, with Neocate being one of the most popular.

  • Neocate or Neocate +1
  • Hypoallergenic formulas that are soy based by SHS North America 800/365-7354 available with prescription
  • Elecare
  • Enfamil
  • Next Step Toddler Soy
  • Lipil 800/LIPIL-26
  • Carnation Follow Up
  • Pediasure or Pediasure with Fiber
  • Compleat Pediatric by Novartis
  • Peptamin Jr.
  • Lacto Free
  • Nutren 1.5 or Nutren 2.0
  • Two Cal HN
  • Infantini (in the UK by Nutricia)
  • Portagen (soy based)
  • Progestimil (broken down; ie. pre-digested)
  • Isomil (soy based)
  • Alumentin


Vitamins:

  • Poly vi Sol with Iron
  • Vitamite (has milk derivative in it)


http://www.iinet.net.au/~scarffam/gtube/formula.doc
http://www.kidswithtubes.org

Our Families

Markie Noah from Fargo, North Dakota. Carson Gallagher from Ann Arbor, Michigan.Hayley Martin from Woodcroft, South Australia.Alexis "Lexi" Black from Barboursville, West Virginia.