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 Differential development – model 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 deficit Caloric 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: infection Drug 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: Mild Moderate Severe Tube fed -1.7 z-score -2.5 -3.3 -1.8 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 Fed by others, no feeding tube Cannot lift head when lying on stomach Feeding tube 1.00 1.40 3.11 6.18 13.91 23.65 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 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 – – – Head circumference: often not helpful – Genetic difference Lack of age appropriate mobility Physical lack 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 – – Behavior issues – Delay start Hydration problems 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 – Start at 75% estimated caloric needs – Severe restriction of CHO: meds, toothpaste 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 – – Feingold diet – – Exceed UL Nutrient imbalance 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.