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Managing daily life
WITH TUBE FEEDING

Nutrition – Tube Feeding Basics

There’s a host of who, what, when and why’s to consider when tube feeding your child.


Speaking to friends and classmates about tube feeding will help alleviate any confusion and help your child to feel more comfortable in his/her surroundings.


There will likely be bumps along the way. Understanding what they are often makes it easier to get through. The first step in managing potential tube feeding problems is to identify them. With knowledge comes greater confidence and comfort.


In this section, we will cover important tube feeding information you need to know.


You will find helpful recommendations if your child is suffering from slow gastric emptying, constipation, diarrhoea or an upset stomach, and we will also cover other conditions, such as dehydration and aspiration.


Learn also how to take care of a clogged feeding tube, as well as ways to keep a good oral and skin hygiene.


No matter the problem or need, just remember to rely on your healthcare team as much as you need to by asking questions as they arise.


Listen to what other families have to say and how they coped with CP and tube feeding real stories.

 

How to reduce gastrointestinal problems

Gastrointestinal problems are quite common in children that are tube fed. Identifying the source of the discomfort is key in finding the possible solutions.

Share your observations and concerns with your healthcare professional team before changing anything in your child’s feeding routine. Sometimes, simple measures are enough to alleviate the problem.

Gastrointestinal problems may include: slow gastric emptying, constipation, diarrhoea and an upset stomach.

What is slow gastric emptying?

Slow gastric emptying is when food and/or liquid from a previous tube feed remain in the stomach longer than normal, and may even be in the stomach at the start of the next feeding. If your child suffers from slow gastric emptying, they may spit up or vomit. If this happens often enough your child may not receive the full volume of their formula and could loose valuable nutrition.

Possible causes may include:

  • How the feed is given
  • The type of formula
  • The amount of formula being given per meal
  • The rate of feeding

Possible solutions that you can try:

  • An option is to change the amount of time between feeds. More time between feeds can give the stomach time to empty
  • Or, the rate of the feeding can be adjusted in order to provide the formula over a longer period of time
  • Some formulae have been shown to empty from the stomach more quickly than other types of formula and this may be an option that you can discuss with your doctor or dietitian

What if my child is constipated?

During tube feeding, bowel movements may be less frequent than usual. If your child is constipated, he or she may feel uncomfortable or bloated.

Possible causes may include:

  • Not enough water is being given
  • Lack of fibre, or not enough fibre, in the formula
  • Your child being unable to get enough physical activity
  • Certain medications

Possible solutions that you can try:

  • Provide additional water flushes through the feeding tube as instructed by your healthcare professional
  • Check with your doctor or dietitian to see if your child should change to a formula that contains fibre, or if you should add a fibre supplement
  • If it is permitted, and your child is able, increase your child's physical activity by doing fun activities together
  • Ask your healthcare professional to review your child's medications to see if any may be causing constipation

What to do in case of diarrhoea?

A child who is tube fed may normally have more frequent or watery stools, but if he/she is having four or more loose or watery stools a day, speak with your doctor.

Possible causes:

  • Medications
  • Rate of feeding is too fast
  • Formula may be contaminated by bacteria after opening
  • Intolerance to the formula

Possible solutions:

  • Because emotions can affect digestion, help your child to relax during feeding
  • Remove opened formulae from the refrigerator at least 30 minutes prior to feeding, allowing the formula to warm to room temperature
  • Contact your child's healthcare professional for advice on slowing the feeding rate
  • Do not use formula that has been opened and left at room temperature for longer than the manufacturer's recommendation
  • Do not use formula that has been opened and left in the refrigerator for longer than 24 hours
  • Check with your healthcare professional about changing to a formula that contains fibre, or adding a fibre supplement
  • Check with your healthcare professional to see if your child should change to a special formula that contains ingredients that are easier to digest
  • Wash your hands thoroughly before you open, or handle the formula
  • Replace the feeding container and tubing as directed by your healthcare professional

What if my child has an upset stomach?

Occasionally, your child may feel nauseous and belch or vomit if he/she has an upset stomach.

Possible causes:

  • Formula is being fed too fast
  • Formula is too cold
  • Too much formula at one feeding
  • Lying flat while taking the feeding
  • Engaging in too much activity right after feeding
  • Intolerance to the formula

Possible solutions:

  • Consult your child's healthcare professional for advice on slowing the rate of feeding
  • Do not refrigerate unopened formula
  • Make sure you are following the directions for the prescribed amount of formula and/or correct flow rate
  • Do not allow your child to lie flat during or just after a feeding. Your child should sit or lie at a 45 degree angle during the feeding and for an hour after the feeding
  • If directed by your doctor, check the residuals in your child's stomach before restarting the next feeding
  • Ask your child's doctor or dietitian to re-evaluate your child's formula. You may need to switch to a formula that has more calories in less volume or to a special formula that contains ingredients that are easier to digest and absorb

Gastrointestinal problems can be a burden, but, with the appropriate advice and recommendations, things do get better, and you will learn how to deal with the different tube feeding challenges.

 

Dehydration and aspiration are not to be taken lightly

Conditions such as dehydration and aspiration may arise with tube feeding. The causes may be directly related to tube feeding or completely unrelated. Only your healthcare professional team will be able to clearly identify these causes. Nevertheless, your close attention and your observations are a valuable asset to finding the best solution for your child.

Dehydration

Some potential early signs of dehydration include thirst and urine that is a darker yellow than usual. More serious signs could include dryness of lips, tongue and skin, and decreased urine output.

Possible causes:

  • Formula is too concentrated (contains too little water)
  • Frequent diarrhoea
  • Prolonged fever
  • Not taking enough water
  • A wound is draining large amounts of fluid
  • Sweating heavily

Possible solutions:

  • Give your child the prescribed amount of water every day before and after his/her feedings
  • If your child is experiencing fever, diarrhoea, excessive wound drainage or heavy sweating, consult your doctor to determine how much more water your child needs

Aspiration

Aspiration happens when formula enters the lungs, and usually causes coughing, gagging and difficulty breathing. Consult your doctor IMMEDIATELY if symptoms develop.

Possible causes:

  • Formula has backed up or been inhaled into your child's lungs
  • Lying flat during feeding
  • Misplaced feeding tube        

Possible solutions:

  • Check that the tube is properly positioned
  • Have your child sit or lie at a 45 degree angle during the feeding
  • Have your child remain sitting up for at least one hour after the feeding
  • If your child is feeding at night, follow the doctor's instructions for elevating the head of the bed
  • If your child feels or looks bloated, is irritable, looks uncomfortable or has been vomiting, do not begin feeding. Consult your child's doctor immediately if symptoms develop
  • If directed by your doctor, check the residuals in your child's stomach before restarting the next feeding

Dehydration and aspiration are two conditions that need to be closely monitored. If left untreated, serious health conditions may arise. Together with your healthcare team, you will help your child prevent or overcome these obstacles.

 

What to do with a clogged feeding tube?

A clogged feeding tube happens when the formula is not flowing smoothly through the tube. Possible causes could be a kink or bend in the feeding tube, or a dried formula or medication that is blocking the feeding tube.

Possible solutions:

  • Check to make sure there are no kinks or bends in the feeding tube
  • Flush the tube before and after each feeding with water (ask your child's healthcare professional how much water should be used for each flush)
  • Flush the tube with room temperature water before and after administering medications
  • If the tube is blocked, do not try to remove the blockage yourself. Consult with your doctor for directions on what to do

We advise you to consult your healthcare professional when:

  • The formula will not flow smoothly through the tube despite the fact that you have checked the tube for kinks or bends
  • Tube falls out
  • Large amounts of fluid are leaking around the tube (dressing is soaked more than once a day)
  • You see changes that may signal an infection, feeding intolerance or other health problem
  • Your child’s skin area around tube has signs of infection (reddened area, warm to touch, firm to touch, tender)
  • You notice more drainage than usual and/or drainage smells bad
  • You notice bloody or coffee-ground-coloured drainage from the tube
  • A sudden increase or decrease in the amount of drainage through the tube
  • Your child is suffering from persistent nausea and/or vomiting
  • Your child has a fever of 38 degrees Celsius or higher
  • You notice unusual and/or sudden weight loss or gain (more than 1 kilograms a day)
  • Your child is constipated (no stools for two days, or stools that are difficult to pass)
  • Your child has diarrhoea (four or more loose or watery stools a day)
  • You child’s stomach becomes bloated or distended and tight
  • Increased stomach residual

*Your team of healthcare professionals will explain and train you on how to measure stomach residual. You will need to check with your child's healthcare provider for the amount of stomach residual you should be concerned about. This amount will depend on the age and weight of your child, the total volume of formula they are getting and their feeding schedule.

 

Oral and skin health make a difference


Whether your child is receiving their feeding through a gastrostomy or jejunostomy tube, or through a nasogastric or nasojejunal tube, it's important to maintain good oral and skin health.

Mouth health:

The following steps are recommended to keep your child's mouth as clean as possible. Follow any other special instructions from your child's healthcare team.

  • Brush your child's teeth, gums and tongue at least two times a day using a soft toothbrush and toothpaste. To moisten the mouth, use an oral sponge
  • Moisten your child's lips with lip balm or a lanolin-based moisturising cream. To prevent chapping, encourage your child to avoid licking the lips if possible
  • Report bleeding or anything unusual in your child's mouth to your healthcare professional

Nose health:

If your child is taking a feeding through a nasogastric or nasojejunal tube, the tube passing through the nose may cause mild soreness or you may notice some thick, crusty mucus in the nostrils. It is important to take care of your child's nose. Follow these steps:

  • Change the tape holding the tube in place daily. When re-taping, allow some slack so that the tube does not rub against the nostrils
  • Clean the nostrils at least once a day with a soft washcloth or cotton swabs moistened with warm water
  • Remove sticky tape residue with a special adhesive remover
  • Remove crusting on the nostrils with warm water on a cotton swab
  • Apply a lip balm or lanolin-based moisturizing cream to the inside edges of the nostril
  • Report any redness, bleeding or numbness to your child's doctor

Skin health:

If your child has a gastrostomy or jejunostomy tube, taking care of the skin surrounding the feeding site is also very important.

Follow these steps:

  • Wash your hands thoroughly
  • Remove the old dressing and tape, being careful not to disturb the tube
  • Cleanse the skin around the tube daily with soap and water as directed by your child's healthcare professional
  • Remove any crusting around the tube site (use cotton swabs moistened with warm water)
  • Check the tube site every day for signs of redness, soreness, swelling or unusual drainage; report anything unusual to your child's healthcare professional
  • Dry the skin around the feeding tube site thoroughly. Healed gastrostomy or jejunostomy sites usually do not need a special dressing. If you have been told to apply a dressing, follow the instructions from your child's healthcare professional

Above all, remember that you’re doing all you can to make your child's tube feeding journey as positive and trouble-free as possible.