In this 59‑minute video, Sara Parker, MA, a pediatric speech pathologist, discusses feeding techniques for children with Prader‑Willi syndrome ages 0‑2. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.
Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.
Presentation Summary With Timestamps
1:08 Sara Parker presents
ABCs of Pediatric Feeding Therapy
- Parker has been a feeding specialist with children. She lives in Monrovia, Indiana.
- She has worked in hospitals, clinics, and with families on oral motor skills.
- Has two daughters with Pierre Robin Sequence, which includes feeding difficulties, small jaw, cleft palate, and hearing loss.
- Having a medically fragile child changes everything.
- Presentation will cover Swallow Studies, Oral Motor Development, Feeding Development, and Special Dietary Needs.
2:57 Swallow Studies (VFSS)
- Swallow studies are one of the things that get children caught up in the medical system.
- Hospitals will do what is called a swallow study.
- Other names: Modified barium swallow (MBS), oral‑pharangeal motility study, videofluoroscopic swallowing function study/examination (VFSS or VFS), video radiographic swallow study, videofluorographic swallow study, three‑phase swallow study, rehabilitation swallow study, cookie studies.
- Children are in different feeder seats, sometimes parents can hold the child.
- Put barium in food or liquid to see if the baby aspirates.
- Some babies are labeled NPO, where they can’t have anything by mouth.
5:02 Why Would a Doctor Request a VFSS?
- Concern about silent aspiration (not coughing).
- Frequent coughing, choking, and/or gagging especially while eating or drinking.
- Failure to gain weight or poor weight gain.
- Respirations‑phonation is wet/gurgly before, during and/or after eating or drinking.
- Frequent irritability/refusal to take food or drink by mouth. Don’t keep up with calorie needs.
- Poor sleep habits.
- Neuromotor involvement that affects respiratory coordination, low tone, high tone, sensory‑motor activity, oral motor function, and/or postural control against gravity (floppy baby).
- Easy to catch pneumonia or other lung problems.
- Illustration of swallowing mechanism (7:20)
- Need to make sure that food or drink goes down instead of aspirating.
8:06 Primary Factors with Aspiration
- Liquid or food going into the lungs.
- Laryngeal penetration (liquid or food sneaking into then back out of the lungs).
- Preparation and control of bolus (food or liquid in mouth). Does it fall back into the throat and make them aspirate or penetrate?
- Timing of swallow—delayed trigger of swallow.
- Make sure you get enough solids and liquids in the child to determine if it is an accurate assessment of their skills. For example, 10 sips from 5 ccs does not answer the question of whether the child is aspirating when they normally take 4‑5 ounces during a feeding.
- How to control breast milk or formula is key. Might need to use a different nipple or thicken.
10:41 Barium Materials/Textures
- Barium materials available in the radiology department:
- Liquid barium—used with multi‑textures and thin or thick liquids
- Powder—used with ultra‑thin liquids and stirred into purees and soft chewy foods
- Paste—can be spread onto hard solids or mixed with soft chew (PBJ, hamburger)
- Solids—pre-made barium cookies
11:50 Types of Liquids
- Ultra‑thin liquids—breast milk, water, juice, soft drinks
- Thin liquids—milk, most formulas
- Semi‑thick liquids—½ tablespoon infant cereal (oat) to 2 oz. liquid
- Nectar thick liquid—1 tablespoon infant cereal to 2 ounces thin liquid
- Honey thick liquid—1 tablespoon infant cereal to 1 ounce of thin liquid
12:39 Types of Purees
- Thin, smooth purees
- Stage 1 (75% water) or Stage 2 (50% water)
- Baby foods (except bananas and meat)—fruits and vegetables
- Thick, smooth purees—baby food bananas and meats, puddings
- Lumpy purees—pureed baby foods, Stage 2 ½ and Stage 3 baby foods, adult applesauce
- Soft Chewy (Mechanical Soft) Foods
- Canned/cooked fruit or veggies
- Canned/cooked pasta and grain meals
- Chicken nuggets, fish sticks, tuna, salmon, egg salad, French fries, veggie tots, hash browns, hamburger
- Thick stews, casseroles or soups
- “Pancakes,” “fat bombs,” breads
- Meltable Solids—Puffs
- Break down in 1 to 3 chews
- Stick shaped: Cheeto Natural Puffs, Gerber puffs, veggie stix, Beanitos, Hippeas (some puffs are empty calories, but others are vegan and good texture)
- Small pieces—yogurt melts, puffs (star shaped, “A”‑shaped)
- Hard Solids
- Quick dissolving, dissolve with 1‑3 chews
- Graham crackers, Lorna Doone cookie, cheese puffs, puffed corn
- Chewy: requires more than 5 chews—Cheese, meats, sandwiches, fruit chews
- Hard: breaks into smaller pieces but does not dissolve
- Nuts, uncooked veggies, hard candy, Doritos, corn chips, Ruffles, most cookies, most chips/pretzels (mostly for kids more than 3 years old)
- Multi Texture Combinations (foods that separate quickly in the mouth)
- Chicken noodle soups (thin liquid)
- Meat with gravy (thin or thin liquid)
- Cookies with nuts (solid)
- Cereal with milk (thin liquid)
- Fruit cup with syrup (thin liquid)
17:32 Thickening Agents
- With infants you typically use infant cereal
- 1 tablespoon to 2 ounces of liquid (nectar consistency)
- Can also use a stage 2 puree or an infant yogurt—nectar consistency is 5 tablespoons to 2 ounces of puree
- It activates the cerebral cortex.
- If over 1 year old, can use more purees or a Thick‑It (powder additive)
- Nectar consistency with instant pudding powder —1 teaspoon powder to 2 ounces of milk
- If over 3 years, may also consider using a gel‑based product
- Swallow studies will tell you what to use
18:30 What You Need to Bring to a Swallow Study‑Feeding Equipment
- The parent will be asked to bring the utensils the child uses at home. Bring a few spoons.
- Utensils that most closely approximate these utensils are usually provided by the facility.
- Variations in the type of bottle, nipple, spoon, or other feeding device may be necessary for making treatment decisions and deciding whatever works best for the baby. Some people bring a range of options. There’s not a magic bottle that works for every kid.
- You want to avoid an overly fast flow or squeezing liquids into the mouth.
- Watch for liquid spilling from the front of the mouth.
- You want feeding systems to be efficient and safe.
- You may need to change systems as the baby develops and the anatomy changes
19:49 Radiographic Studies in General
- If you take a 1 year old in, and the study only looks at a bottle, you should also be trying a cup of some kind.
- A 1‑year‑old is growing older and a cup might help them do better.
- When bottle feeding, liquid is shot into the back of the throat
- Cup drinking: open cup, free‑flow sippy, no‑spill sippy, water/sports bottle
- Straw drinking: juice box/straw, regular straw
- Spoon feedings
- At times, may use syringes, clinical eyedroppers
22:16 Management Recommendations
- Feeding suggestions:
- Therapy recommendations: early intervention program in Indiana is called First Steps; they recommend a feeding specialist to help you out. Could be a speech therapist or an occupational therapist.
- Additional suggestions: medical team followup.
- If a swallow study is done right after birth, and the baby is aspirating, they might let you do 5‑10 ml by mouth and practice with that and put the rest into the G‑tube.
- Team should follow up again at 3‑4 months, and you might need a plan to follow up and work with their skills and see how they’re doing.
- Some kids are on oxygen, so you will have to work around that.
- Nutrition guidelines and guidelines for weight concerns: It’s difficult to find dieticians who know about working with babies that have the dietary restrictions we want.
- Holding: sometimes side-lying works, sometimes holding upright.
- Changing to different utensils can work.
- Once you get on a tube feeding schedule, you can work around that.
- If they aren’t allowed anything by mouth, they can still practice with a pacifier and you might dip that in formula or breast milk. That’s non‑nutritive, and it’s just to make sure they don’t get averse to taking food by mouth.
22: 13 Results/Recommendations
- Reminder: NPO means nothing by mouth.
- See if it is safe to give the baby tastes for practice (may need to wait for okay by doctor)
- Family will need to consider alternative forms of nutrition (NG‑tube, g‑tube)
- Consider quality of life issues; different for each baby and family
- Her daughter vomited NG‑tube out repeatedly, she and her husband had to hold her down to get it back in. Couldn’t take it and ended up going with a g‑tube.
- Also need to consider daycare services and providers if you need to go back to work. Many won’t take a baby with an NG‑tube. G‑tube is safer, but because it involves surgery, not always for babies with low tone.
23:25 Thoughts on NG and/or G‑Tubes
- Best if the baby can get some oral practice and supplement with tube feeds.
- Tubes have an impact on development of normal eating and drinking skills.
- Must maintain a medically appropriate level of oral involvement.
- Watch for reflux.
- Can be orally aversive, especially if NG is in for longer.
- NG tubes are meant to be temporary.
- Basic rule of thumb is up to 6 weeks, then transition to a g‑tube as needed
23:43 Bottle Feedings/Pacing
- Feeding is all about breathing. If you can’t breathe, you can’t feed. It’s no different than holding your breath and trying to swim across a pool.
- If you can’t coordinate it, it increases the risk of choking.
- Pacifier: Typically want it to match the shape and size of the bottle/nipple system.
- Goal is to break up the suck‑suck‑suck‑suck pattern.
- Allow 3‑5 sucks on the nipple, then stop the pattern.
- Initially, you’ll need to remove the bottle from the mouth.
- Allow 3‑5 second pause.
- Reinsert nipple and allow to latch, and again have 3‑5 sucks.
- As they get more efficient they start to pace themselves.
25:16 Things to Know about Nipples
- There are hundreds of kinds
- Goal is to elevate the lateral edges of the tongue for sucking/expression. Want the tongue to be able to cup around the nipple, and they kind of pump and come back and pull it back.
- Flatter nipples (Nuk) are sometimes harder.
- Check on straight vs. orthodontic, size (match oral cavity of infant), type of cut, and material.
- Flow rate. Might have to watch for daycare providers feeding too fast. Not good for the babies.
- Watch for liquid coming out of the mouth; it means it’s too fast and too much.
- Have to figure out how to slow it down: thicken, paste, change nipple type.
- Some families are taught to support the cheeks, or jaw, or tongue. We do not recommend.
- Most important thing is that the tongue has to shape around the nipple and has to be able to reach and pull.
- So if it’s a big hole and the tongue can’t get around it, it’s a bigger risk for choking trouble.
23:43 Positioning While Feeding
- Babies should be held while feeding, not propped.
- Keep as upright as possible, or side‑lying with good head and neck support.
- Swaddling or using onesies helps, but they need to start to learn to relax as they grow.
- Important to have a good feeder seat. Some elevate the whole body.
29:37 Introduction of Semi‑Solid and Solid Foods—Developmental Food Continuum
- Birth to 13 months—breast or bottle feeding.
- Some children with PWS can breastfeed.
- You might need to pump or supplement, but it is a possibility.
- 4‑6 months—thin baby food cereals (Stage 1 foods are cereal and breast milk or formula)
- 6‑8 months—Stage 2 baby foods. However, if the baby has been totally NPO you might do puree starting about 3 or 4 months; add meltable solids/puffs for short‑term motor practice.
- 8‑ 9 months—transitioning over to soft mashable table foods, or table food purees (safe bite‑sized pieces)
- 12 months—mixed textured foods
- 13 months—soft table foods
- 15‑18 months—hard, mechanical foods
30:30 Introducing Semi‑solid Foods
- Typically start at 4‑6 months (adjusted) or 13‑15 pounds
- Generally start with breast milk/formula and cereal, but also can do low‑calorie puree, and fortify with powder formula
- Introduction of solids is developmentally important but not nutritionally important at this age (you want them to like it, and to hold them)
31:10 Transitional Feeding Skills Developing between 4‑6 Months
- “True” sucking —moves from reflexive to active, purposeful suck.
- Tongue has a small range of up and down, forward‑back and jaw movements.
- As jaw and lip movements improve, baby is able to help get food off the spoon, but they might start gagging with new textures.
- You want them to have an open mouth when they come up to you; lip control is important, an up‑down motion, munching.
- May need breath support.
32:07 List of Low‑Carb Fruits and Vegetables
- Foods like green beans, broccoli, that you might not always find in baby food form.
- Low‑carb foods and berries are good in moderation.
- Want to help keep children healthy and maintain the right protein level
32:47 Introducing Solids
- Want to have the kid be interested in it.
- In the beginning, it’s not nutritionally important, so 1‑2 Tablespoons. If you get five bites in a little baby, it’s a good thing.
- A full jar of baby food is not a feeding; it’s about 6‑8 feedings.
- At this age, they do not need any juice or water; they’re getting fluids in breast milk or formula.
- Avoid infant feeders.
- Avoid using Karo syrup or honey.
- Babies should be held for taking liquids (bottle) and be held or in seats for solids.
- Teach your child to eat better than you do: consider the food rainbow.
34:19 Is Your Child Developmentally Ready for Semi‑solid Foods?
- Are they holding their head upright and able to maintain a semi‑reclined position?
- Can they touch, hold, and taste objects?
- Are they moving their tongue back and forth instead of just pushing it out?
- Start foods one at a time to watch for allergic reactions: rash, vomiting, diarrhea.
- American Academy of Pediatrics is recommending adding peanut butter in earlier rather than later; talk to your pediatrician about their recommendations.
34:53 Feeding the Baby
- Babies prefer breast milk, because it is sweet.
- They prefer sweet and salty foods, and may reject some bitter and sour foods.
- They tend to resist new foods. May need 10‑30 exposures to establish a new food.
- Do not add foods to the bottle. The baby needs to learn to eat with a spoon.
- Start slow, and be calm and persistent.
34:45 Spoon Feeding Tips
- Spoon feeding is important to work on oral motor skills.
- Baby should be upright or semi‑upright position.
- Child‑sized spoon is important. Flatter ones are better, metal or plastic.
- Make sure the baby opens their mouth as you present the food.
- Rest the spoon on the upper gum or the lip.
- We teach them to put their lips around the spoon and suck on it.
- Don’t just put food in their mouth; they need the exercise, practice using their mouths to take it.
- Might need to use clinical eyedroppers if they have a hard time.
- Don’t ever force it, scrape it, or press down on the tongue.
- Don’t mix it all together; teach different flavors.
37:10 Feeding Development 6‑9 Months
- They should be
- Taking the food from a spoon.
- Handling thicker and lumpier foods that may require some chewing.
- Self‑feeding with fingers or a spoon.
- Drinking from a cup, managing the bottle independently, drinking from a straw.
- Service size: 1‑2 teaspoons of 2‑3 purees.
- Start with vegetables and offer them when they are most hungry.
- “Mini meals”: 1 serving of protein, 1 serving of fruit or vegetable, meltable solids.
- Add 1 new food every 3‑4 days.
38:28 Healthy Fats for Kids
- After 8 months, add 1 tsp to 1 Tablespoon to cooking or pureeing of baby food:
- Organic coconut oil
- Organic extra virgin cold pressed unrefined olive oil
- Organic grass‑fed butter/whipped
- Chicken, beef, fish, or liver stock
- Organic coconut milk (canned)
- Whipped cream cheese
- Avocado (can start this as a first food)
39:08 Portion Sizes
- Remember: a jar is not a serving. Focus on Tablespoons.
- Approximately 1‑2 Tablespoons per year of age per serving is an advisable guideline for toddlers between years 1 and 4.
39:48 6‑9 Month Oral Feedings
- Adult does most of the feeding; baby should be picking up a couple of things, sipping from a straw, and using different foods.
- Eating thin purees.
- Stronger tongue movements to handle thicker purees.
- Munching advances to true chewing.
- Baby is exploring self‑feeding.
- Meltable solids, like Puffs, veggie sticks.
- Safe, bite‑sized pieces, like tip of adult finger.
41:08 Fat Bombs — Soft, Chewy Textures
- 3 steps for making keto fat bombs:
- 1: mix all the ingredients in a food processor or blender, melt coconut oil in the microwave or on the stove.
- 2: Form small balls or pour mixture into muffin cups or baking pan.
- 3: Refrigerate or freeze for several hours until mixture is cold. Cut into slices if you used a baking pan.
41:39 9‑12 Months: Transitioning to Table Foods
- Allow child to get messy; it’s how they learn.
- Teach them to put food pieces into a small bowl or cup on the tray.
- Model biting and chewing with back teeth.
- Work on self‑feeding, or co‑feeding where the baby takes part of the meal, and the parent takes part of it.
42:00 12‑15 Months — Tastes are Developing
- Children are easily feeding themselves, prefer finger foods over purees.
- Biting and chewing is improving with teeth.
- Drinks from a cup/straw independently. Best to be off the bottle by 12 months.
- Mimics parents’ mealtime behaviors.
- Adds language with feedings (“all done.”)
- Toddlers should start having 3 meals and 2‑3 snacks each day; don’t want them to graze throughout the day.
- Emphasize fruits and vegetables.
- Recommend they sit in a chair for safety.
- If weight is okay, transition to whole milk.
44:05 15‑18 Months Feeding Development
- Cut food into safe, bite size pieces, size of child’s pinkie fingertip.
- Encourage self‑feeding, drinking from a cup, playing with food.
- Use utensils.
44:48 Common Early Feeding Traps
- Anticipate the daily formula/milk intake will fall as food intake increases.
- Avoid “combo dinners” and baby desserts.
- Work with doctor and nutritionist to calculate calories.
- Don’t need a full jar of baby food.
- It’s normal for kids to spit stuff out, but they need to learn to eat a wide variety of foods.
- Focus on new food experiences.