Nutrition and Developmental Disabilities

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.

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 2000 20:1689-1696

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

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 …..

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

Etiology of FTT

Failure to thrive = long term caloric deficitCaloric deficit = STARVATION

Primary– Lack of adequate food :STARVATION– Child abuse and/or neglect

Secondary – STARVATION because of disability or disease– Acceptable?

Common consequences of poor nutrition

Constipation, diarrhea: change in appetite Immune system: infectionDrug utilization

– Altered metabolism of drugs– ADHD and drugs

Long term functional changes in brain– Iron – FTT similar to language disorders Dykman: 00

Consequences

Feeding dysfunction Fung:02

– None: -1.7 z-score– Mild -2.5 – Moderate -3.3– Severe -1.8

Tube fed

Consequences

Selected factors associated with increased risk of mortality in children with CP Stauss:98

– Spasticity and some self-feeding skill 1.00– Quadriplegia type CP 1.40– Severe, profound mental retardation 3.11– Fed by others, no feeding tube 6.18– Cannot lift head when lying on stomach 13.91– Feeding tube 23.65

Parents Perspective's

Important!– More information: less stress

Associated with morning the loss of a “normal” childTrace of guiltLack of support

– Tube feeding– Feeding difficulties Brotherson and Kennedy

Nutrition Interventions

Cost effective $1 spent on nutrition saves $20 in medical

costs Team oriented Community based or group home Problem based

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

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

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?

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?

Weight based interventions

Disease conditions:– Bronchopulmonary dysplasia, – Cystic fibrosis– Congenital heart disease– Chronic renal failure– Sickle cell disease– Asthma – Allergies

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

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

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

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

Alternative therapy

Mega vitamin therapy– Exceed UL– Nutrient imbalance

Feingold diet– Eliminates artificial colors and salicytes– Almonds, apricots, apples, ice cream, asprin

Pica

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

Interventions

Positioning Texture modification

– Thick liquid Special equipment Parent education Important to coordinate care with the

complete team so nutritional status is not compromised.