Transcript Success of Nutrition Therapies in Developmental Disabilities

Sarah Oliver
Honors Program
Dietetics
Developmental Disabilities
 2008: 1 in 6 children in the US present with congenital developmental
disability (1).
 Approximately 15% of children in the United States in 2008 had some
form of developmental disability compared to approximately 13 % in
1997 (1).
 Includes those with severe chronic conditions secondary to impairments
in physical and/or mental status (2):
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Autism
Brain injury
Cerebral palsy
Down Syndrome
FAS
Mental retardation
Prader-Willi Syndrome
 In individuals with severe developmental disabilities, malnutrition,
growth failure , obesity, and other nutrition side effects are common
Role of Nutrition Therapy
 Individuals with disabilities and their families are constantly
searching for ways to improve quality of life
 A therapeutic approach may be more desirous than medications
to improve the manifestation of disabilities
 Nutritional therapies work in concert with all body systems and
improve overall health
 Drugs altering specific chemical reactions
 Inaccurate nutrition information is accessible through the
internet and other media outlets
 Registered dietitians (RDs) must be able to provide accurate
nutritional and lifestyle information and implement a nutrition
therapy plan
 “It is the position of the American Dietetic Association that nutrition
services provided by registered dietitians and dietetic technicians,
registered, are essential components of comprehensive care for all
people with developmental disabilities special health care needs
(2).”
Focus
 Focus: Current and proven successful nutrition
therapies in Down Syndrome, Autism, and Prader-Willi
syndrome
 Common manifestations
 Current Successful Nutrition Therapies
 RD recommendations
Down Syndrome
 Trisomy of chromosome 21 occurs
and results in an extra chromosome
in all cells of the body (2)
 Prevalence in the US is about 1 in
733 births; affecting 40,000
families (2)
 Generally individuals present with
 short stature, congenital heart
disease, mental retardation,
decreased muscle tone,
hyperflexibility of joints,
speckling of the iris, upward slant
of the eyes, picanthal folds, small
oral cavity, short and broad hands
with the single palmar crease, and
a wide gap between the first and
second toes (2)
 Appropriate nutrition therapy
should address obesity, lean body
mass, and feeding difficulties
http://www.mercatornet.com/articles/view/will_down_sy
ndrome_children_disappear
Down Syndrome and Obesity
 A high prevalence secondary to high
energy
intakes and low physical activity levels.
 Medical Nutrition Therapy
http://www.earcentergreensboro.com/medical-
education/down_syndrome/index.php
 Calorie-controlled eating plan (4).
 Height is a better indicator than weight in determining calorie
needs for children with DS. Girls with DS need approximately
14.3 kcals/cm and boys need approximately 16.1 kcals/cm
(4).
 RD can effectively design a calorie-controlled eating plan for a
patient with DS to result in weight control and reduction of
overweight or obesity.
 Fiber promotes satiety. Furthermore, adding fiber to the diet
can improve constipation (5).
Down Syndrome and Lean Body
Mass
 Increasing lean body mass is desirous
to increase energy expenditure (6)
 Medical Nutrition Therapy:
 Exercise
 Dietitian should encourage physical
activity as an alternative therapy
 Increased physical activity allows for
possible weight loss and an intake that is
less restrictive than what may usually be
recommended for an individual with DS
http://www.theupsofdowns.org/
Down Syndrome and Feeding
Difficulties
 Individuals with DS exhibit a significantly higher occurrence of
oral motor dysfunction than the average population.
 Individuals with DS commonly experience hypotonia, poor
tongue control, and open mouth posture. (7)
 Medical Nutrition Therapy
 The dietitian must educate about appropriate feeding techniques
 It is important to avoid restriction of foods more than what may
actually be necessary
 Feeding abilities vary, dietitian must assess the tolerance of each
patient
 An oral diet is almost always possible and feeding abilities will likely
improve as the patient grows, but risk of aspiration is a major cause
for worry, thus a thick liquid, pureed, or mechanical soft diet may be
prescribed
Autism Spectrum Disorder
 A group of developmental
disabilities that consist of
impaired social interaction and
communication skills (10)
 Cause is unknown but may be
related to genes involved in
synaptic nerve maturation and
results in behavior patterns that
are repetitive, restricted, and
often stereotyped
 2004: 8 in 1000 8-year-olds had
ASD ; 2008:1 in 88 children (11)
http://mediacache2.pinterest.com/upload/101823641545180544_1db
dA5OL.jpg
Autism and Vaccines
 Suggested that vaccinations are a possible
cause for ASD
 1998 Study analyzed ASD-like
symptoms experienced by
children after administration
of the MMR vaccine (12)
 A causal relationship was found
between the MMR vaccine and
ASD
 Since this study was published,
it has been refuted by many
other studies and in 2010 an
official retraction of this study
was published citing ethical
breaches (12)
 At this point in time, there is no evidence
for a causal relationship between the
MMR vaccine and the onset of ASD
 The health care professional should
encourage patients to receive vaccinations
and should iterate the importance of
vaccines and the lack of evidence of a
connection between vaccines and ASD.
http://www.cinequest.org/event_view.php?eid=363
ASD and Gluten/Casein free diets
 ASD patients often experience gastrointestinal upset and pain which is
hypothesized to be caused by gluten and casein (14)
 Some children with ASD have abnormal urinary peptides which can be linked to
casein and gluten intake thus peptides may return to normal if casein and
gluten are eliminated from the diet.
 Medical Nutrition Therapy:
 Limited research has been done which supports this form of therapy for autism
but a gluten and casein-free diet may be helpful in improving the outcomes of
the child with ASD
 Health professionals may be resistant because of fear of nutrient deficiencies but
a healthy intake can be occur on this diet
 In children following the gluten- or casein-free diets, fruit and vegetable
consumption was higher while cereal, bread, and potato consumption was lower.
No significant differences between macronutrient intake, total energy intake, or
protein intake were found between the two groups (15)
 Not enough evidence for the RD to suggest a gluten and casein-free diet for the
ASD patient, but it should not be ruled out as a treatment option. If the family
and ASD patient decides to take this route, the RD should educate and
appropriately plan a healthy diet containing gluten or casein restrictions. A
healthy diet can be achieved with these restrictions and the quality of life of the
ASD patient may be improved as a result.
ASD and multivitamins
 Improving nutrition status in any disease
state can help improve outcomes
 Medical Nutrition Therapy:
 Supplementation of vitamin B6, magnesium,
omega-3 fatty acids, melatonin, folic acid,
vitamin B12, and probiotics (16, 17)
 A dietitian cannot recommend any of these
supplementations based on scientific
evidence, but as a health professional he can
recommend a supplementation to be sure that
the patient is attaining all necessary nutrients
for optimal function.
 Physical outcomes and quality of life improve
with nutrition status
 As a health care professional, a dietitian
should recommend a multivitamin and
mineral supplement to patients with ASD in
order to improve quality of life and disability
outcomes.
http://pinterest.com/pin/26451617808
3999777/
Prader-Willi Syndrome
 Presents in 1 in 15,000 to 1 in 30,000
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individuals(18)
Caused by complicated genetic factors
and affecting many organ systems
Lack of expression of specific parentally
inherited genes on chromosome 15
Characterized by abnormalities in
neurologic, behavioral, cognitive, and
endocrine areas
Common distinctions of PWS include
failure to thrive in infancy,
hypergonadism, hyperphagia, short
stature, morbid obesity, compulsiveness,
temper tantrums, and intellectually and
developmental disability (18)
Many characteristics of a patient with
PWS are nutritionally related
http://www.theremedysite.com/eatingdisorders/bio45disordiuers/
Prader-Willi Syndrome and Failure
to Thrive
 At birth, infants with PWS present with
hypotonia, or low muscle tone which often
presents in the oral cavity resulting in poor
sucking ability (19)
 Medical Nutrition Therapy:
 Treat quickly and effectively
 Energy should be provided in a form that the
infant can access without excessive difficulty
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Modified bottles with breast milk (19)
Tube feeding is also a possible solution
 A speech pathologist should also be
consulted in order to improve speech
outcomes
 Failure to thrive in PWS can be treated as it
would in any other condition and the
experience RD can make an educated
decision in treatment.
http://delilahsjourney.blogspot.com/2009/09/praderwilli-syndrome.html
Prader-Willi Syndrome and Obesity
 Hyperphagia leads to obesity
 Complications related to obesity are the leading cause of morbidity and
mortality in patients with PWS (20) thus should be first issue addressed
 Medical Nutrition Therapy:
 Wellness approach consisting of nutrition education and increased physical
activity (22)
 Patients should be taught mindful eating habits that include slowing eating rate,
altering portion sizes, and not getting second helpings
 Must demonstrate self control in eating only during designated eating times and
in controlling portion sizes
 As a health care professional, the dietitian should educate the PWS patient on
proper eating habits and mindful eating in order to control intake and avoid
obesity
 The dietitian should encourage physical activity; although the PWS patient has a
decreased energy expenditure when active in comparison to the rest of the
population, physical activity can still be effective in combating obesity
 When obesity is prevented, other negative health outcomes can also be
prevented
Prader-Willi Syndrome and Growth
Hormone
 To combat short stature, the effects and success of growth hormone are under research(23)
 Some study results indicate a one year treatment period of growth hormone to infants with
PWS can improve mental and motor development
 GH supplementation can increase motor kill acquisition and lean body mass while decreasing
percent body fat (24)
 Medical Nutrition Therapy:
 Concerns exist with growth hormone treatment as many negative side effects are
associated with any hormone treatment.
 The dietitian should not recommend this treatment at this point
 As a health professional the dietitian should be aware of this option as health professionals
and keep up to date with the new research being published in this area.
http://www.healio.com/endocrinol
ogy/pediatric%20endocrinology/n
ews/online/%7B16D941D2-B2CD40EE-A1AE11CE1C5713BB%7D/Increasedawareness-earlier-detection-bringrelief-to-challenges-of-PraderWilli-syndrome
Overall Goals of Nutrition Therapy
 Developmental disorders of all kinds are prevalent in our
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society today and they are growing in number
The dietitian should be aware of the therapies available to
improve the outcomes and quality of life of patients with
these disorders
Dietitians can play an important role in the treatment of
these disorders as part of a interdisciplinary team and they
can offer a nutrition perspective unique to their training
and experience.
Be an encouragement to the patients and their families as
they search for answers and ways to improve their quality
of life.
AIM: Improve quality of life
References
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(1) Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R.A., Blumberg, S. J., Yeargin-Allsopp, M., Visser, S., &
Kogan, M. D. Trends in the Prevalence of Developmental Disabilities in US Children, 1997-2008.
(2) Ekvall, S. W. & Ekvall, V. K. Pediatric Nutrition in Chronic Diseases and Developmental Disorders. New
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(3) National Down Syndrome Congress. Down Syndrome. Informational Pamphlet; 2010.
(4)Mahan, L. K., Escott-Stump, S., & Raymond, J. L. Krause’s Food and the Nutrition Care Process. 13th Ed.
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