Nutritional
SOLUTIONS

Providing optimal nutrition to children with cerebral palsy (CP) helps improve their nutritional status and their overall general health.1

Quite often, children with CP require specific nutritional interventions. Indicators that can help you determine if the child is in need of a nutritional intervention include:2

  • No weight gain or growth
  • A deviation from an established “growth pattern”
  • Low body fat-stores with low weight in respect to height or length
  • Prolonged or stressful oral feeding
  • Signs of pulmonary aspiration or dehydration
  • Evidence of micronutrient deficiencies

Once you identify the medical need, remember that caregivers play an influential role in providing the recommended nutritional solution. In fact, children with CP are very dependent on the caregivers’ understanding and application of your recommendations.1

The more you communicate with caregivers, the higher the chances of a successful nutritional intervention.

In the following section, we will provide you with helpful information related to both the nutritional assessment and the nutritional recommendations for children with CP.

The choice of a nutritional strategy, as well as the mode of administration, depend on:2

  • The child’s nutritional status
  • The child’s nutritional requirements
  • The child’s ability to consume adequate quantities of food and fluids orally
  • The risk of pulmonary aspiration

Before recommending a nutritional strategy, nutritional requirements need to be carefully assessed. Several specialists may take part in this overall assessment to help determine the best nutritional strategy. It is critical to include dietitians and speech & language therapists as part of the team, in order to provide a complete nutritional solution.

Nutritional requirements vary depending on physical impairments, feeding difficulties, body composition and physical activity levels.2

In order to calculate the estimated requirements for energy and nutrients, it is recommended to individualise energy based on ideal body weight for chronological age (10th-25th percentile) in the malnourished child and on multiples (1.0-1.2) of the resting metabolic rate in obese children.

Anthropometric assessment is the first step needed to calculate energy requirements. Preferably, weight measurement should be obtained on a digital scale; but, if the child is unable to stand, the use of a wheel chair scale is recommended.3

The height of children younger than 2 years of age or unable to stand should be obtained through reclining length or through segmental measures.3

For body composition, the best way to estimate it is via the DXA (dual energy X-ray absorptiometry). When this is too expensive or unavailable, skin fold thickness and bioelectric impedance are suggested.3


→Take a look at our online assessment tool that can help you in the anthropometric assessment of children with CP (download the pdf version here).


It is advisable to routinely measure and monitor the weight, height and body composition of children with cerebral palsy, in order to adapt energy requirements accordingly.3

Following clinical assessment, the child’s nutritional needs should be discussed with the caregiver.

 

Caregivers may have questions or doubts about the new nutritional strategy, and it is important that you fully explain the reason(s) why their child needs special nutritional support, how to make things work and who can help.

 

Introducing thickeners or oral nutritional supplements (ONS), while ensuring adequate position and physical support during meals, is usually the first approach.2 If, despite these strategies, the child is not gaining weight, then more advanced solutions need to be considered, such as gastrostomy.

We will cover each nutritional strategy in the following sections.



References:

  1. Verall TC et al. Children with Cerebral Palsy: Caregivers' Nutrition Knowledge, Attitudes and Beliefs. Can J Diet Pract Res. 2000;61(3):128-134.
  2. Bell KL and Samson-Fang L. Nutritional management of children with cerebral palsy. Eur J Clin Nutr. 2013;67 Suppl 2:S13-6.
  3. Scarpato E et al. Nutritional assessment and intervention in children with cerebral palsy: a practical approach. Int J Food Sci Nutr. 2017;68(6):763-770.

A large number of children with cerebral palsy (CP) suffer from dysphagia, and thus cannot tolerate liquids. Thickeners can be a solution to modify the texture and to help them take in the required liquids. They are convenient and can be easily added to fluids. Juices and/or soups are examples of liquids that can be thickened. Explaining the measuring and mixing technique to caregivers is also straightforward, enabling a good adherence.


Liquids can be thickened to different consistencies, which may be described by the following terms:1

“Nectar-thick liquids” are easily pourable and have a syrup-like texture.

“Honey-thick liquids” are thicker and less easily pourable. They resemble a custard-like form of liquid.

“Pudding-thick liquids” are not pourable.

References:

  1. NHS, Appropriate prescribing of thickeners for dysphagia in adults, PrescQIPP, Bulleting 100, 2015. Available at: https://www.prescqipp.info/thickeners-for-dysphagia/send/169-thickeners-for-dysphagia/1939-bulletin-100-thickeners-for-dysphagia
Nestle Health Science

When a child is losing weight, oral nutritional supplements (ONS) may be necessary to complement his/her meals and to ensure an adequate nutrition. They are rich in micro and macronutrients, which enrich a child’s diet without the need to consume large amounts of food.

Usually, the first recommendation would be to take the ONS in addition to regular food. ONS come in different formats, such as powders, milky drinks or yogurt-like textures, and can also come in various flavours. To improve compliance, ONS can be added to recipes.

A dietician can help identify the desired quantity and type of ONS the child needs to take to complete the overall diet.

Following the introduction of ONS, an initial follow-up, after 1 to 3 months, is usually advised, except in infants and children with a very poor nutritional status, who need to have more regular short-term follow-up.

If weight gain is still inadequate, despite the introduction of ONS, tube feeding may need to be considered.1

To support caregivers and to ensure patients’ compliance, you can suggest recipes with ONS as a base that are suitable for your patient.

References:

  1. Bell KL and Samson-Fang L. Nutritional management of children with cerebral palsy. Eur J Clin Nutr. 2013;67 Suppl 2:S13-6.
Nestle Health Science
*IMPORTANT NOTICE: Breastfeeding is the best way of feeding a baby during the first months of life and is preferred whenever possible. Infant formula for special medical purposes must be used under medical supervision, after full consideration of all feeding options including breastfeeding.

Tube feeding is indicated in children with cerebral palsy (CP) who have a functional gastrointestinal tract, and it should be considered when a child is unable to meet more than 60 to 80% of his/her individual nutritional requirements for more than 10 consecutive days and when he/she takes more than 4 to 6 hours to eat per day. It is also advised in children with severe feeding and swallowing problems.1

The method of formula administration can be through continuous drip, intermittent bolus, or a combined continuous night-time and intermittent daytime bolus. Together with other professionals, you will recommend the most appropriate method based on the child’s needs.

Even if a child is not fed orally, it is important to make sure that the child is being included in family meal times.2

A child should also be given opportunities to practice oral sensory responses.2

Working closely with speech and language therapists may minimise risks associated with dysphagia.

Indications for Enteral Tube Placement
Nutritional
Meal time is extremely lengthy
Inabaity to meet daily fluid requirements
Inability to meet daily nutrient requirements by the oral route
Moderate/severe wasting (<80% weight-for-height)
Moderate/severe linear stunting (<90% height-for-age)
Neurological
Orofacial abnormalities associated with swallowing difficulties
SLT assessment indicates aspiration risk
Recurrent complications of swallowing difficulties. (aspiration. pneumonia. oesophagitis)

 

Ekvall S, Ekvall V. Nutrition Support for Children with Developmental Disabilities. In: Baker SS, Baker RD, Davis AM, eds. Pediatric Nutrition Support. Jones & Bartlett, 2007:363. Used with permission.

We encourage you to communicate with and support your patient’s caregiver, because the decision to initiate tube feeding can be very difficult for both the carers and the patient.

Your help and guidance will help them overcome obstacles. Remember that feeding and eating have a deeper meaning beyond just providing adequate nutrition.1

Tube feeding can be a temporary solution, until the child’s eating improves and weight increases, or it can be a permanent solution.


    The choice of access depends on 2 factors:

  • The expected duration of the feeding
  • The clinical status of the child

NG and NJ tube feeding

Nasogastric and Nasojejunal tube feeding.

These forms of feeding are favoured for short term use, due to tubes being easily dislodged, blocked, and causing nasopharyngeal irritations.1

In some cases, NG feeding can be used before the insertion of a gastrostomy to allow for both nutritional rehabilitation and tolerance assessment.1

On the other hand, NJ tube feeding is indicated for children with severe GORD, vomiting, and an increased risk of aspiration.

PEG and PEJ tube feeding

PEG: Percutaneous Endoscopic Gastrostomy.

This route of feeding is the preferred route when long-term tube feeding is required.

PEJ: Percutaneous Endoscopic Jejunostomy.

This route of feeding is reserved for children with severe GORD and vomiting.

There is a wide range of formulae for tube-feeding to choose from.3

Each formula is adapted to a child’s specific needs (e.g.: caloric content, fibre content, protein content, etc.), and some are even based on real food!3

→Click here to see the different types of formulae available for feeding.

References:

  1. Bell KL and Samson-Fang L. Nutritional management of children with cerebral palsy. Eur J Clin Nutr. 2013;67 Suppl 2:S13-6.
  2. Arvedson JC. Feeding children with cerebral palsy and swallowing difficulties. Eur J Clin Nutr. 2013;67 Suppl 2:S9-12.
  3. NHS, Managing Daily Life. Available at: https://www.nestlehealthscience.us/mytubefeedingkid/managing-daily-life
Nestle Health Science

There is a wide range of tube feeding formulae available for children with cerebral palsy (CP). All types of formulae promote normal growth and development; however, the choice of formula depends on the status of the child’s GI tract.

Formulae differ in calorie content, protein quantity and source, as well as in fibre content. For example, polymeric feeds are usually the first choice to be used, as they provide a complete nutrition that mimics a normal diet, while whey peptide based formulae are specific for children with emesis (vomiting) and may help in reducing episodes of diarrhoea in GI-compromised children.

This is usually because whey peptide based formulae may be easier to digest, offer an improved feeding tolerance and are suggested by the ESPGHAN for children with CP who suffer from GORD.1

Here are examples of different types of formulae:2

Standard formula:

What is it?

A standard tube feeding formula is a formula that is designed for children who have a functional GI tract and normal digestion.

What are the advantages?

  • They contain intact nutrients and mimic a typical diet.
  • Some standard formulae can be used for both tube feeding and oral feeding, and some contain added ingredients, such as fibre, to promote regular bowel movements.

Peptide based formula

What is it?

A peptide based formula contains proteins that ‘have been broken down’ into peptides to facilitate absorption and digestion in children with impaired GI function (GORD, vomiting or tolerance issues)

What are the advantages?

  • Whey* peptide based formulae are specifically designed for those who have an abnormal functioning of the GI tract. These types of formulae facilitate gastric emptying, nutrient absorption, for an enhanced energy and protein delivery, and gut function preservation, and they also ensure gastrointestinal tolerance.
  • They may reduce the number of vomiting, regurgitation and diarrhoea episodes, while supporting optimal nutrient absorption and digestion.3

*The whey is the watery part of milk that separated from the curds. The protein in cow’s milk is 20% whey protein and 80% casein protein.4

Real food formula

What is it?

A real food formula contains ingredients that are easily recognised and familiar, such as meat, milk, vegetables and fruit, along with added vitamins, minerals and other nutrients. It is specially formulated to provide all of the nutrients needed to support a child's growth and development, in a liquid form and amount the child can tolerate.

What are the advantages?

  • It meets medical needs for safety and nutrition, as well as caregivers’ aspirations to provide more real food for their children.
  • It has a consistent nutrient content, with appropriate caloric values.
  • It has the right viscosity and osmolality to prevent tube occlusion.
  • It can be used as a sole source of nutrition.
  • It can be used as part of home-made blenderised tube feeding.

A variety of ingredients, including fruits, vegetables, yogurt or cooked meats, can then be added to the mixture and blended together. The "recipe" — or the various ingredients used — should be reviewed by a registered dietician to ensure that the child's nutrient requirements are met.

We compiled some helpful recommendations that you can provide to your caregiver:


→Download the document “IJM Patient Booklet” here

We also believe that hearing the stories of how families coped with CP can help you gain a deeper understanding of what they go through.

→Click here to watch the real stories we have compiled from caregivers

 

References:

  1. Romano C et al. European Society for Paediatric Gastroenterology, Hepatology and Nutrition Guidelines for the Evaluation and Treatment of Gastrointestinal and Nutritional Complications in Children With Neurological Impairment. J Pediatr Gastroenterol Nutr. 2017;65(2):242-264.
  2. NHS, Learning About Nutrition. Available at: https://www.nestlehealthscience.us/mytubefeedingkid/learning-about-nutrition
  3. Minor G et al. Formula Switch Leads to Enteral Feeding Tolerance Improvements in Children With Developmental Delays. Glob Pediatr Health. 2016;3:2333794X16681887.
  4. Savino P. Knowledge of constituent ingredients in enteral nutrition formulas can make a difference in patient response to enteral feeding. Nutr Clin Pract 2017:884533617724759
Nestle Health Science