1. Nutrition and Developmental Disabilities

2. Definitions
Developmental delay: a finding 1.5 standard deviations below the age adjusted norm on a standardized test.
Age adjusted: chronological age – weeks born early. Used until 2-3 years old.
Special needs: a catch all term including children with a medical, developmental and learning diagnosis.

3. Why does nutrition matter for kids with special needs?
These are the kids at nutritional risk in this country
Complicated
Baer model
Differential development
Achieving one milestone doesn’t predict the achievement of the next
In Atlanta study, children < 3rd percentile
85% inpatients had disease or low birth weight
55% outpatients had disease or low birth weight
Sherry et al, Nutrition Research :

4. Why does nutrition matter for kids with special needs?
Increasing numbers of children are surviving
Require life long care
Children are being cared for by their families
Lack of supportive medical services
Nutrition and medical supplies
Matters to families
Notice improvements in simple things, hair, skin
Improved medication usage

5. Nutritional problems
Various studies show +70% of children with special needs require nutritional intervention.
Why so many problems?
Complex medical and therapeutic interventions.
Lots of secondary malnutrition
Doctor shopping
Lack of concern for “normal” nutrition and growth?
Can’t cure them, so …..

6. Definitions of Malnutrition
Protein Energy Malnutrition (PEM)
Primary: inadequate food intake
Secondary: result of disease
Failure to thrive (FTT)
In-organic: inadequate food intake
Organic: result of disease or disability

7. Caloric deficit = STARVATION
Etiology of FTT
Failure to thrive = long term caloric deficit
Caloric deficit = STARVATION
Primary
Lack of adequate food :STARVATION
Child abuse and/or neglect
Secondary
STARVATION because of disability or disease
Acceptable?

8. Common consequences of poor nutrition
Constipation, diarrhea: change in appetite
Immune system: infection
Drug utilization
Altered metabolism of drugs
ADHD and drugs
Long term functional changes in brain
Iron
FTT similar to language disorders Dykman: 00

9. Consequences Feeding dysfunction Fung:02 None: -1.7 z-score Mild -2.5
Moderate
Severe -1.8
Tube fed

10. Consequences
Selected factors associated with increased risk of mortality in children with CP Stauss:98
Spasticity and some self-feeding skill
Quadriplegia type CP
Severe, profound mental retardation 3.11
Fed by others, no feeding tube
Cannot lift head when lying on stomach 13.91
Feeding tube

11. Parents Perspective's Important!
More information: less stress
Associated with morning the loss of a “normal” child
Trace of guilt
Lack of support
Tube feeding
Feeding difficulties Brotherson and Kennedy

12. Nutrition Interventions
Cost effective
$1 spent on nutrition saves $20 in medical costs
Team oriented
Community based or group home
Problem based

13. Assessment of growth Length (over 24 months, Height), Weight
Use normal CDC standards; unless
Genetic difference
Lack of age appropriate mobility
Physical lack
Head circumference: often not helpful
Hydrocephalus, microcephalus
Triceps skin fold: can always store fat

14. Problem based intervention
Changes in nutrient need and changes in nutrient absorption and utilization.
Medication Nutrient interactions
Seizure meds: Vit D, Folic acid, Carnitine, bone density
Laxatives: fat soluble, K deficiency
Steroids: growth changes, bone (CA, Phos) and insulin resistance

15. Problem based intervention
Constipation: major problem
Diarrhea
Oral feeding
Delay start
Hydration problems
Behavior issues
Unidentified sensory problems
What is normal? Or is that not important?

16. Weight based interventions
A little makes a big difference!
Weight never gained may exacerbate existing problems
Weight gained may never be lost and cause new problems
Mobility and muscle tone alters calorie needs
Unexpected?

17. Weight based interventions
Disease conditions:
Bronchopulmonary dysplasia,
Cystic fibrosis
Congenital heart disease
Chronic renal failure
Sickle cell disease
Asthma
Allergies

18. Metabolic disorders Restriction of one or more dietary components
Amino acid disorders
Carbohydrate disorders
Use of special formulas: Ross Labs
VERY restricted diet
Monitor hydration, feeding problems
Illness: catabolism leads to metabolic crisis

19. Ketogenic diet for seizures
Very trendy!
Dates to 1920’s
Brain uses ketones, not glucose for energy
Used when medication fails
Ages 2-5
Cream or MCT oil diet
Generally started in major research center
Generally started in hospital

20. Ketogenic diet Initial fast to induce ketosis
4:1 - Four grams of fat for every one gram of CHO and PRO combined
Severe restriction of CHO: meds, toothpaste
Start at 75% estimated caloric needs
I gm protein/kg
Fluid restriction: 60-70cc/kg body weight
On diet for two years

21. Ketogenic diet MCT oil 9 tbsp and 1 tsp 41 grams protein 90 grams CHO
20 grams fat not MCT oil
Food:1/2 oz meat, ¼ c fruit, extra fat as mayo, whipping cream to drink

22. Alternative therapy Mega vitamin therapy Feingold diet Pica Exceed UL
Nutrient imbalance
Feingold diet
Eliminates artificial colors and salicytes
Almonds, apricots, apples, ice cream, asprin
Pica

23. Feeding disorders Cause of secondary malnutrition Anatomical
Neurological
Behavioral
Sensory
Hypersensitive: Touch of food on lips, shudder or spit
Hyposensitative: not respond to food
Environmentally sensitive

24. Interventions Positioning Texture modification Special equipment
Thick liquid
Special equipment
Parent education
Important to coordinate care with the complete team so nutritional status is not compromised.