Feeding Problems in Children with Disabilities

1. MORE THAN PICKY EATERS:
FEEDING PROBLEMS IN CHILDREN WITH
DISABILITIES
Cindy Zuk
Lowana Lee
Olaf Kraus de Camargo
on behalf of the EFCT (Eating and Feeding
Consult Team)
Photo by Lance Gross

3. WHAT HAPPENS INSIDE THE MOUTH?

4. OUR SENSES ARE THE CONNECTION TO THE
WORLD
BRAIN INTERACTION
WORLD
Information
Hypotheses/Theories Physical world

5. OUR SENSES ALSO INFORM US ABOUT OUR BODY AND
OUR BRAIN HELPS US UNDERSTAND WHAT IS GOING ON
BRAIN INTERACTION
BODY

10. HTTPS://WWW.FEEDINGMATTER
S.ORG
MORE FACTS
ABOUT EATING
AND FEEDING
PROBLEMS:

11. WHY WE WERE FOUNDED
A Feeding committee formed in Spring 2008 with
representation from the various teams that see only
pediatric outpatients with various developmental delays.
Prevalence of complex feeding difficulties reviewed
varied 20% to 100% from each service.
The children with “mechanical” difficulties are seen
through the Feeding and Swallowing Team and receive
videofluoroscopy and pH probes etc.
It was found that there was a gap in service for the
children who had behavioural or sensory feeding
difficulties.

12. RESULTS FROM THE COMMITTEE
Several themes emerged from the committee
related to the gaps in service:
Multi-disciplinary approach needed
Expertise needed to address both the behavioural and
sensory components of the feeding issues
Large variability in the types of cases seen
Physician support needed

13. THE PROJECT
Due to the need the Eating and Feeding Consult Team (EFCT) was
formed in January 2010
Pilot would run for 1 year (now ongoing)
Team meets once a month for 1.5 hours
Referring clinician meets with the team and recommendations are
provided
Up to 2 cases are discussed, with the opportunity to return in the
future to review recommendations and discuss any changes

14. WHO’S ON THE TEAM
Allison Poole - Behaviour Therapist
Olaf Kraus de Camargo - Dev. Paediatrician
Dana Lehman - Early Childhood Resource
Spec.
Lowana Lee - Occupational Therapist
Carole Kaufhold - Parent Therapist
Jamie Smith - Social Worker
Cindy Zuk - Speech-Language Pathologist

15. It was due to the team that we were able to recognize
conditions beyond the main complaint and make appropriate
recommendations:
Physician: able to look at medications, what was given,
should it be increased, what other types of medication
Early Childhood Resource Specialist: looks at development,
behaviour and supporting families in community programs
Behaviour Therapist: looks at behaviour and strategies to
implement
BENEFITS OF A MULTIDISCIPLINARY TEAM

16. THE PROJECT EXPANDS
In 2016 we added a clinic where the child and
their parents could come in for a “table-side”
assessment with the team.

17. REFERRALS
Internal from clinicians at RJCHC
External by medical referral to developmental
paediatrics
Referral form (clinician consult)
Intake Eating & Feeding Routines (clinic)

18. CASES SEEN BY DIAGNOSIS
30 are diagnosed with Autism Spectrum Disorder
10 have Delays in Development (i.e. Fragile X,
Down Syndrome)
6 had no official diagnosis
4 Mental health diagnosis (OCD, ADHD)
1 had a mitochondrial disorder

19. CONCERNS
43 cases listed the primary concern as limited intake of food or types of
food:
eats no fruits or veggies often reported
eats only a certain brand or food or type (only french fries from
McDonalds)
eats mostly soft foods
drinks only Pediasure®️or only juice or only water etc.
drinks only from a particular container (i.e. bottle or a particular cup or
only from a certain juice box)

20. SECONDARY CONCERNS
6 reported problems with constipation
5 were G-tube fed
4 reported difficulties with chewing
11 reported difficulties with gagging/choking
1 was anemic
1 has ongoing throat infections and 1 had chronic congestion
2 reported frequent vomiting after eating
2 reported anxiety
Of those that reported “other” as their primary concern
2 ruminated
1 improved while on wait list
2 had PICA
1 therapist did not want to complete referral

21. RECOMMENDATIONS MADE:
52 Referrals to Professionals: (Physicians, Parental
supports/workshops, Dietician)
15 Suggested Medications: (appetite suppressants/ stimulants,
constipation, reflux)
39 Environmental Changes: (use visuals for cueing, change utensils,
help with meal prep)
30 Changes to Foods: (food chaining, adding calories, increase
protein)
15 Changes to Liquids: (add water to drinks, increase/reduce intake)
18 Behavioural Changes: (increase positive/ decrease negative
reinforcement, stop force feeding)

22. CASE EXAMPLE
Darryl has always been very rigid with eating
Darryl was consuming 4-8 ounces of Pediasure Plus 3
times/day. These feeds typically took 1-2 hours each
Set routines must occur (to have his bottle, he must be
lying down in bed with the lights off, the music and fan on
etc.)
History of refusing to eat and not showing signs of hunger
or thirst
Regularly vomited
Regularly gagged when food was prepared, including
when the microwave beeped or fridge was opened

23. RECOMMENDATIONS:
Rule out underlying medical conditions: thyroid test
Clinician to gather more information about his vomiting to make sure
it is not cyclical
Start introducing new foods using the same consistency of those he
is already eating
Make changes slow and gradual- increasing first variety and then
texture
Change his Pediasure from the bottle to the sippy cup, introduce
other liquids later

24. CASE EXAMPLE
Narelle
9 years 1 month
All food needs to be blended, smooth puree
without chunks
Drinking thickened fluids from spoon- able to
take some sips from a straw, barely from a cup.
Does not seem to have a sense of smell
Very sensitive in her oral cavity- brushing her
teeth is also a struggle.
Poor oral motor skills

25. RECOMMENDATIONS
Feeding needs to be safe and not struggle to get food down
Changes to be made gradually, use preferred taste, at the
same time not to jeopardize nutritional intake.
Oral motor: hold spoon straight so she can use her lips actively
to clean food off spoon.
Food
thicker consistency, keep food separate
Use mashed soft food
Fluids
Juice thickened, smoothies
Use cup- small amounts in small cups (shot glass size)
Work on straws and cups.

26. PICKY EATERS VS PROBLEM EATERS
(ADAPTED FROM STAR CENTER)
PICKY EATERS PROBLEM EATERS
Decreased range and limited variety, has 30
or more foods in their food repertoire
Restricted range or food variety, usually eats
less than 20 foods
Food jagging but resume eating the food after
a few weeks break
Foods jagging and food not eaten again,
resulting in a further decrease of # of foods
eaten
Eat at least one food from most textural
groups (e.g. purees, proteins, fruits or
meltable foods)
Refuses entire categories of food textures or
nutrition groups
Tolerate new foods on their plate – would
touch or taste food
Cries, screams & tantrums when new foods
are presented, complete refusal
Often eat a different set of foods at mealtime;
often eats together with family
Almost always eat a different set of foods, eat
at a different time or place apart from family
Ability to learn to eat new food takes on some
steps to learn
Much harder to learn to eat new foods, takes
many more steps to learn

27. THE SOS APPROACH
Sensory Oral Sequential Feeding technique
Evidence-based
OTs and S-LPs at CDRP had been trained in this
technique
Using a sequential approach in advancing the steps
Food chaining (colors, shapes, textures, taste) also
used to expand the repertoire of food tolerated

28. GROUP CHARACTERISTICS
Visual exposure and tolerance are part of step
1 in eating
Using the sensory organs to explore the new
foods (look, smell, touch, taste)
Giving the child permission to explore and to
have control when to put into mouth
Using appropriate language to foster positive
approach to food exploration and when trying
new food
Modelling, talk through
Peers – monkeys see, monkeys do

29. REFERENCES -RESOURCES
Feeding Matters
https://www.feedingmatters.org
Star Center
http://spdstar.org/files/2011/10/PickyEaters-
ProblemFeeders.pdf
http://spdstar.org/sos-feeding-solutions/