Thickeners can be a solution

Children with cerebral palsy (CP) who have dysphagia may have difficulty swallowing thin liquids. Drinks and other liquids may need to be thickened so they are more easily managed in the mouth and throat. Thickened beverages move more slowly and are often easier to handle in the mouth than thin liquids. This gives more time to close off the airway so the liquids can travel down the esophagus to the stomach.

Juices, milk and soups are examples of liquids that can be thickened. Your healthcare professional will recommend the amount of thickener needed to get the desired consistency for your child’s swallowing needs.

A speech-language pathologist, occupational therapist or dietitian can help determine the most appropriate consistency for your child.

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Oral nutrition supplements can be added to improve your child’s diet

There are times when the food you give your child may not be enough to meet his or her needs. Therefore, your healthcare professional may recommend oral nutrition supplements to ensure adequate nutrition for your child. If your child can take food and fluid by mouth, there are nutrition products available in different formats and flavours that can be a great solution to add energy and protein to his or her diet. If you notice that your child is losing weight, or their behaviour towards food has changed, talk to your healthcare professional.

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Tube feeding is a way of getting liquid nutrition through a tube.

Your child may need a tube feeding if he or she:

• Cannot get enough nutrition by eating or drinking by mouth; or
• Has difficulty chewing or swallowing easily or safely

To help make sure your child gets the nutrition and fluids he or she needs, your healthcare professional may suggest a tube feeding, either on its own or added to your child’s daily food and drink intake.

Tube feeding can help your child grow and develop. It is another way for your child to get the nutrition they need. With a feeding tube in place, your child can still take part in family activities like mealtimes. Having the support of your family and friends may make your child’s home tube feeding a more comfortable experience.

It is common for parents to have many questions about tube feeding, but once they see the benefits, many wish they had started sooner.

There are different locations and routes through which a feeding tube can be placed.

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Below is a brief summary of the different tube feeding routes:

Tube feeding through the nose

NASOGASTRIC OR ‘NG-TUBE’:

The feeding tube goes through the nose, down the esophagus or food tube, and ends in the stomach.

NASOJEJUNAL OR ‘NJ-TUBE’:

The feeding tube goes through the nose, down the esophagus or food tube, continues through the stomach, and ends in the small intestine.

Tube feeding through the stomach

GASTROSTOMY OR ‘G-TUBE’:

The feeding tube goes through a small opening in the skin directly into the stomach.

JEJUNOSTOMY OR ‘J-TUBE’:

The feeding tube goes through a small opening in the skin into the jejunum or small intestine.

Tube feeding can be a safe and reliable form of feeding that allows you to track the amount of food and liquids your child is receiving.

 

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There are different ways to deliver tube feedings and different types of feeding schedules, depending upon what your healthcare professional has prescribed for your child.

Nutrition can be delivered continuously or given at meal times with breaks during the day (intermittent nutrition).

Continuous nutrition can be done by gravity or using a pump.

Intermittent nutrition can be done by gravity, using a pump or using a syringe.

1. Intermittent feeding is a type of tube feeding that provides a certain amount of formula over a short amount of time (usually 30-60 minutes), and is typically provided several times per day. 
2. With a syringe: formula is poured into the syringe, then the plunger is used to push the food directly into the feeding tube.

   

It may be difficult to understand at first, but as you gain more experience, tube feeding can and will become easier. Even though your child is being tube fed, being included in family mealtimes and social events that involve food is just as important for your child as it is for you and your family. Speaking about tube feeding with your child will help alleviate any confusion and will allow your child to feel more reassured and comfortable during mealtimes.

There is also a wide range of formulas for your healthcare professional to choose from.

Formulas are developed to meet a child’s specific needs, including energy content, fibre content, as well as vitamin and mineral content.

Click on the Types Of Formulas section to better understand the different types of formulas available.

As you continue to tube feed your child at home, it’s natural to have questions, or to need some help. Your child's healthcare team can help you answer questions such as:

• What can I expect from the tube feeding experience and the different tube feeding options available?
• What type of equipment is needed and how do I set it up?
• How do I know if my child is getting enough nutrition?
• How do I know my child is having feeding intolerance?

Mealtime is an important opportunity for socializing, and a part of life that children should be involved in and enjoy from an early age. Even though your child is being tube fed, being included in family mealtime and social events that involve food is just as important for your child as it is for you and your family. Work with your healthcare professional to find a feeding schedule that works for you and your family.

For more information on tube feeding instructions, formulas, and more, visit: mytubefeeding.ca

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Which formulas are available?

A variety of formulas are available for your child. Tube feeding formulas provide the nutrients needed to support a child’s growth and development, in the form and amount that your child can tolerate. Your healthcare professional will consider your child’s nutrition requirements, feeding schedule, and your lifestyle when recommending a formula.

Tube feeding formulas are considered complete nutrition because they contain protein, carbohydrates, fat, vitamins, minerals, and water to support your child’s growth, development, and special nutrition needs.

Ask your healthcare professional about which formula is best for your child.

Here are some examples of different types of formulas:

Standard Formulas

Standard pediatric formulas are nutritionally complete and are designed for children ages 1 to 13 who have normal digestion. Some of these formulas can be used for both tube feeding and oral feeding, and some contain fibre.

There are also pediatric formulas available which contain real food ingredients such as chicken, vegetables and fruit along with added vitamins and minerals to create a nutritionally complete formula.

Semi-Elemental/Peptide-Based Formulas

Like standard formulas, semi-elemental formulas are nutritionally complete. Semi-elemental formulas are different because they contain some nutrients, like protein and fat, which are ‘broken down’ into smaller units to make them easier to digest. This is the reason these formulas are also called “peptide-based” formulas – because “peptides” is the name used to describe smaller units of protein. Some semi-elemental/peptide-based formulas can also be used for both tube feeding and oral feeding, and some contain fibre.

Specialized Formulas

Specialized formulas are available for children with particular needs such as Crohn’s disease, multiple food allergies, sensitivities or intolerances; or those with severe issues digesting fat and protein.

Modular Products

Modular products are individual nutrients that may be added to formula for children who require additional nutrition. Modular products provide extra protein, fat or calories without adding much volume to the formula itself. If modulars are needed, your healthcare professional will teach you how to use them and provide a recipe if needed.

Blenderized tube feeding

Homemade tube feedings are often referred to as blenderized diets, blended diets, or pureed foods for tube feeding diets. Blenderized tube feeding is becoming more popular as parents and caregivers want to include real food in the diet of their children on tube feedings. Many parents feel this may be healthier choice or a way to manage food intolerances.¹

Homemade tube feedings are prepared by blending foods and fluids in a high-speed blender to liquify them so they will flow through a feeding tube.

Blending foods at home takes planning and time as well as safe food handling practices. If blending food at home does not work for you, there are commercially available tube feeding formulas that contain real food that may be a great fit for you and your child.

For more information, or before starting or switching to a homemade blended formula, consult with your healthcare professional to make sure blenderized tube feeding is right for your child.

You may find hearing stories of how other families live with CP helpful.

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