There are several barriers making it difficult for these issues to be addressed. Medical Home providers may have difficulty making time to assess and treat problems with feeding and nutrition due to increasingly hurried schedules. Families may not be covered by their insurance for consultation with nutritionists, and may not be able to afford visits on their own. In one study, approximately 40% of parents of children with moderate and severe neurological impairment considered their children to be malnourished, but more than half of these children had never been assessed for nutritional status and needs. [Sullivan: 2000]
The discussion of nutrition in a child with a chronic condition may be a sensitive topic for many families. Terms used by medical providers, such as "failure to thrive", may add to feelings of inadequacy and poor parenting. Although parents sometimes spend hours each day trying to get enough food into their children with CP or other chronic condition, many parents still have a negative reaction when questioned about underweight, especially if the possibility of a gastrostomy or nasogastric tube is raised. [Namerow: 2003] As problems with weight may challenge parents' perceptions of their effectiveness, weight gain and growth are best addressed early and routinely. Initial preventive/treatment steps should be taken in the primary care setting, with intermittent support from a nutritionist. If problems with nutrition don't respond to primary care intervention, referral to a nutrition specialist with expertise in this population is important. Depending on location, this may include developmental pediatricians and/or gastroenterologists.
Evaluation Challenges - Challenges include:
- Weight-for-height percentiles and body mass index may not be adequate to assess under-nourishment. [Fung: 2002]
- Standard measures of nutritional status, such as serum albumin and prealbumin, are not reliable in this population. Even in the face of severe chronic malnutrition, the majority of children with CP maintain normal levels of serum albumin and prealbumin.
- Parents of children with CP consistently over-record food intake when compared to actual measures of caloric intake.
- Linear growth can be difficult to assess when there are contractures, scoliosis, difficulty with standing, and/or lack of cooperation.
- Measure weight and length/height consistently and watch for trends: (weight gain, linear growth, weight loss trends with intercurrent illness)
- Measure fat stores, if you have a skinfold caliper, or refer to a nutritionist.
- Perform segmental measurements (e.g., tibial length). Extrapolating segmental measures provides a reasonable estimate of height that can be plotted on a standard growth curve. See Tools below.
- If nutritional status is deemed optimal but the child continues to have poor growth velocity, evaluate for growth hormone deficiency.
- 10-25% weight for age is acceptable in nonambulatory children.
- Use condition specific growth charts when available, e.g., Down syndrome, Cornelia de Lange syndrome, Turner syndrome, Prader-Willi syndrome (See Tools below).
- Determining energy needs may be complicated in children with cerebral palsy or other chronic condition due to decreased physical activity and decreased caloric need in some children and increased caloric need due to the presence of spasticity, constipation, drooling, and/or excessive sweating in others.
- Adolescents, particularly those with athetoid or spastic cerebral palsy may need 5000 to 6000 kcal/day to meet caloric needs.
- The multidisciplinary involvement of feeding specialists, who may be occupational or speech therapists depending on location, gastroenterology and/or pediatric surgery if there is consideration of tube placement, and nutrition is suggested.
- See Power Packing (general) and Calcium and Vitamin D for more information.
Indications for a feeding tube may include:
- Unsafe oral feeding. In some children, tube feeding may be necessary due to frequent coughing, choking, and aspiration. Even if maximum efforts are made to prevent aspiration of food and drink into the lungs (with gastrostomy tube feeding and Nissen fundoplication), oral secretions may still be aspirated;
- Severe reflux and the need for preventative surgery to prevent it (Nissen fundoplication) - a feeding tube will usually be inserted at the time of reflux surgery.
- Inefficient feeding due to oral motor dysfunction leading to prolonged labor-intensive feeding or poor weight gain. Families often don't realize how long they spend preparing food and feeding their child with a chronic condition - for children with CP and swallowing problems, estimates are 3.5 hours/day compared to 0.8 hours/day for typically developing children. Families who have opted for tube feeding often report an improved quality of life due to a reduction in feeding times, improved medication administration, and decreased worries about their child's nutrition. [Sullivan: 2004];
- Recurrent periods of dehydration or weight loss due to frequent illnesses; and
- The need for an alternate route to give medications, fluids, or an unpalatable diet (ketogenic diet formulas).
- If malnutrition is present, oral feeds, even with nutritional supplementation, are rarely enough to resolve it. Sometimes however, a period of tube feeding (nasogastric or gastrostomy tube) supplementation may allow the child to catch up to a normal weight and then continue with oral feeds alone.
- Percutaneous placement of a gastrostomy tube or gastrojejunal tube is recommended if the child will require tube feeding for more than about six weeks. These are readily removable when no longer necessary.
- The child with a temporary feeding tube can be fed by tube at night, allowing hunger and thirst to occur during the day so that oral feeding can continue. This may also be a time that oral-motor skills to improve oral feeds may be optimized, allowing a better transition back to oral feeding.
- facilitating family coping strategies
- adjusting the child's diet for optimal growth and nutrition (and prevention of obesity)
- adjusting the child's feeding schedule for optimal family/child functioning
- monitoring the feeding tube for complications (feeding intolerance, reflux with aspiration, stoma leakage etc.)
- ensuring that the family has adequate equipment for using and caring for the feeding tube
- ensuring that the family is aware of what to do if the tube dislodges
- working with the familiy to ensure adequate and safe feeding at school, childcare and respite settings
- if appropriate, helping the child and family continue to focus on advancing oral feeding by monitoring safety, prescribing oral motor therapy (if indicated), and optimizing the feeding schedule to enhance hunger during meal times
- When tube feeding is required, a nutritional consult is recommended. There is little information about nutritional needs of children with moderate and severe CP, but tube feeding with caloric guidelines for typically developing children may not be adequate.
- As noted above, children with severe disabilities may have complicated energy requirements.
- The use of formulas designed for adults, even in older children, with a set amount of nutrients per unit of energy may lead to an inadequate amount of minerals and trace elements when the child does not get a large amount of formula due to decreased energy need. Formulas designed for children such as Pediasure which has a higher ratio of micronutrients to energy units may be necessary.
- Calcium and vitamin D intake should be optimized to prevent development of osteoporosis in non-ambulatory children.
- Overweight needs to be monitored for with adjustments in formula to water intake adjusted as needed. [Sullivan: 2006]
Continuous Drip Nasogastric Feeding with Pump (Cincinnati Children's Hospital)
Instructions for parents using a continuous drip tube feeding with pump. Includes supplies, preparation, general information, and a link to instructions in Spanish.
Kids with Tubes
Information about tube-feeding from families, for families. Although the site is not updated often, the information remains valuable.
Gastrostomy Feeding by Syringe (Cincinnati Children's Hospital)
Instructions for parents on gastrostomy feeding - includes explanation, supplies, procedure and safety tips. Also available in Spanish.
G-Tube Tips (Special Child)
Parents of children with feeding tubes share problems and offer successful tips.
Down Syndrome Growth Charts
Printable growth charts for height, weight, and head circumference for children with trisomy 21. See Down syndrome (DS) Related Issues for individual charts. Use these with caution - because the measurements included children with DS whose growth was likely affected by co-morbidity (like cardiac disease) and less attentive care than is currently standard, these charts likely underestimate growth that could be expected of otherwise healthy, well-cared-for children with DS.
Publications about CdLs (CdLS Foundation)
Reported age of completion for gross motor, fine motor, personal/social, and language skills.
Turner Syndrome Growth Chart 2-19 Years ( 1.2 MB)
Printable growth chart with curves for girls with and without Turner syndrome; percentiles derived from the National Center for Health Statistics.
See all Developmental Pediatrics services providers (5) in our database.
See all Nutrition/Dietary services providers (53) in our database.
See all Pediatric Gastroenterology services providers (3) in our database.
For other services related to this condition, browse our Services categories or search our database.
Kuperminc MN, Stevenson RD.
Growth and nutrition disorders in children with cerebral palsy.
Dev Disabil Res Rev. 2008;14(2):137-46. PubMed abstract
Grammatikopoulou MG, Daskalou E, Tsigga M.
Diet, feeding practices, and anthropometry of children and adolescents with cerebral palsy and their siblings.
Nutrition. 2009;25(6):620-6. PubMed abstract
|Reviewing Author:||Catherine Jolma, MD - 11/2009|
|Content Last Updated:||12/2013|
Fung EB, Samson-Fang L, Stallings VA, Conaway M, Liptak G, Henderson RC, Worley G, O'Donnell M, Calvert R, Rosenbaum P, Chumlea
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Sullivan PB, Alder N, Bachlet AM, Grant H, Juszczak E, Henry J, Vernon-Roberts A, Warner J, Wells J.
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Sullivan PB, Juszczak E, Bachlet AM, Thomas AG, Lambert B, Vernon-Roberts A, Grant HW, Eltumi M, Alder N, Jenkinson C.
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