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Managing daily life
WITH TUBE FEEDING

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tube-feeding-basics

Feeding Intolerance & Problem Solving


When your child first starts tube feeding, it may take a few days for their body to adjust to the formula and feeding routine. But there are times when he or she simply may not tolerate the feeding formula you have been asked to use – your child may feel unwell and cannot take all of the formula each day. This can become a problem if your child is not able to get the nutrition and water needed, or if your child is having unpleasant symptoms that makes him or her feel unwell.


Feeding intolerance is often talked about by the signs or symptoms children have – which may vary from feeling full and having a swollen belly (abdomen) to vomiting or diarrhea. Being on a tube feeding does not mean that your child should feel uncomfortable during or after taking their formula.


You can use this checklist to help see if your child may be experiencing tube feeding intolerance.

→CLICK HERE TO VIEW/DOWNLOAD THE CHECKLIST image of checklist

 

Sometimes your child may experience problems when tube feeding. This section provides information about some of the more common problems, possible causes and some steps you may take. The information provided here is not intended to replace the advice or instruction of your child’s healthcare professionals, or to substitute medical care. If you have a problem, or have more questions about your child’s tube feeding, be sure to talk to your child’s healthcare professional.

NAUSEA, VOMITING, REFLUX

  • NAUSEA, VOMITING, REFLUX
  • DIARRHEA
  • BLOATING/CRAMPS/FEELING OF FULLNESS
  • CONSTIPATION
  • DEHYDRATION/THIRST
  • RAPID WEIGHT GAIN
  • LOSING WEIGHT
  • SUDDEN COUGHING/TROUBLE BREATHING
  • BLOCKED FEEDING TUBE
  • FEEDING TUBE FALLS OUT
NAUSEA, VOMITING, REFLUX

Problem

Nausea and/or Vomiting and/or Reflux (feeling like your stomach contents are coming back up into your throat)

Possible Cause

  • Feeding too quickly
  • Slow digestion in the stomach
  • Other stomach/digestive problems or illness

What to consider

  • First talk to your child’s healthcare professional on how to best manage nausea, vomiting and reflux.

They may suggest you:

  • Slow or stop the feed until your child is comfortable. If needed, delay the next feeding by 15-20 minutes and restart slowly.*
  • Slow down feed rate*
  • Sit your child upright or have him/her lie at a 45-degree angle (about the height of two pillows) during the feeding and for 30 to 60 minutes after the feeding. Do not lie flat during or just after a feeding.
  • Change to a special formula that may be easier to digest and absorb

Always speak to your child’s healthcare professional if this problem continues

Footnote:

* If you have slowed the formula flow rate this may reduce the amount of formula, water and nutrition your child is getting. Check with your child’s healthcare professional if you are not able to return to your child’s original rate after 1 or 2 days and you are unable to get the amount of formula and water indicated in your child’s feeding schedule

DIARRHEA

Problem

Diarrhea (frequent, loose, watery or liquid stools)

Possible Cause

  • Medication side effects
  • Formula is being fed too fast
  • Formula may be spoiled by bacteria
  • No fibre, or not enough fibre, in your child’s formula
  • Intolerance to the formula
  • Your child may have another illness, flu or infection
  • Your child’s feeding tube may have moved out of place

What to consider

  • First, talk to your child’s healthcare professional on how to best manage diarrhea.

They may suggest you:

  • Talk to your child’s doctor or pharmacist about your child’s medications
  • Slow down the feeding rate*
  • Change to a formula that contains fibre.
  • Change to a special formula that may be easier to digest and absorb
  • Do not use formula that has been opened and left at room temperature for longer than recommended on the formula label
  • Do not use formula that has been opened and left in the fridge for longer than 24 hours
  • Wash your hands well, and use clean supplies/equipment
  • Replace your child’s feeding container and tubing as directed by your child’s healthcare professional

Speak to your child’s healthcare professional if this problem continues for more than 2 days

Footnote:

* If you have slowed the formula flow rate this may reduce the amount of formula, water and nutrition your child is getting. Check with your child’s healthcare professional if you are not able to return to your child’s original rate after 1 or 2 days and you are unable to get the amount of formula and water indicated in your child’s feeding schedule.

BLOATING/CRAMPS/FEELING OF FULLNESS

Problem

Bloating or swollen belly/ abdomen; Stomach cramps; Feeling of fullness

Possible Cause

  • Formula is being fed too fast
  • Formula is too cold
  • Too much formula
  • Lying flat while taking the feeding
  • Exercising or too much activity right after a feeding
  • Intolerance to the formula

What to consider

  • First, talk to your child’s healthcare professional on how to best manage bloating, cramps and feeling of fullness

They may suggest you:

  • Slow down the feeding rate*
  • Make sure your child is taking the right amount of formula and/or feeding rate
  • Sit your child upright or lie at a 45-degree angle (about the height of two pillows) during the feeding and for 30 to 60 minutes after the feeding. Do not allow him or her to lie flat during or just after a feeding.
  • Switch him/her to a formula that has more calories in less volume or to a special formula that may be easier to digest and absorb.
  • Always use stored, unopened formula at room temperature for feedings. If you have opened formula in the refrigerator, remove for 30 minutes before feeding.

Footnote:

* If you have slowed the formula flow rate this may reduce the amount of formula, water and nutrition your child is getting. Check with your child’s healthcare professional if you are not able to return to your child’s original rate after 1 or 2 days and you are unable to get the amount of formula and water indicated in your child’s feeding schedule.

CONSTIPATION

Problem

Constipation (bowel movements occur less than usual or are hard, dry and painful or difficult to pass)

Possible Cause

  • You are not giving enough fluid or water
  • No fibre, or not enough fibre, in your child’s formula
  • Not enough exercise or activity
  • Medications

What to consider

  • First, talk to your child’s healthcare professional on how to best manage constipation.

They may suggest you:

  • Give more water through your child’s feeding tube if advised by your child’s healthcare professional.
  • Change to a formula that contains enough fibre
  • Help your child be more active - if this is possible
  • Talk to your child’s doctor or pharmacist about your child’s medications
DEHYDRATION/THIRST

Problem

Dehydration (the amount of water in the body has dropped below the level needed for normal body function); Passing less urine/dark yellow urine; Feeling thirsty

Possible Cause

  • You are not giving enough fluid or water
  • Illness with diarrhea, fever, heavy sweating

What to consider

  • First, talk to your child’s healthcare professional on how to best manage dehydration

They may suggest you:

  • Make sure your child is taking the right amount of water every day before and after your feedings and throughout the day
RAPID WEIGHT GAIN

Problem

Gaining weight quickly

Possible Cause

  • You may be giving too much fluid or water
  • You may be giving too much formula

What to consider

  • First, talk to your child’s healthcare professional on how to best manage weight gain

They may suggest you:

  • Make sure your child is taking the right amount of formula and water every day
LOSING WEIGHT

Problem

Losing Weight

Possible Cause

  • You may not be giving enough calories

What to consider

  • First, talk to your child’s healthcare professional on how to best manage weight loss

They may suggest you:

  • Make sure your child is taking the right amount of formula every day
SUDDEN COUGHING/TROUBLE BREATHING

Problem

Aspiration (breathing in foods or liquids into the airway or lungs);

Sudden coughing or trouble breathing during feeding or right after feeding

Possible Cause

  • Your child’s formula may be coming back up from the stomach and it could be breathed into their lungs
  • Lying flat during feeding
  • Illness such as a chest infection or pneumonia

What to consider

  • First, talk to your child’s healthcare professional on how to best manage aspiration

They may suggest you:

  • Sit your child upright or have him/her lie at a 45-degree angle (about the height of two pillows) during the feeding and for 30 to 60 minutes after the feeding. Do not allow him or her to lie flat during or just after a feeding.
  • If symptoms continue, call your child’s doctor or go to the hospital
BLOCKED FEEDING TUBE

Problem

Blocked feeding tube or formula will not run through the feeding tube

Possible Cause

  • There may be a kink or bend in your child’s feeding tube or the feeding set
  • Formula or medication may have blocked the tube

What to consider

  • First, talk to your child’s healthcare professional on how to best manage a blocked feeding tube.

They may suggest you:

  • Check the feeding tube and feeding set to make sure the tubing is not bent or kinked
  • Flush the tube with warm water before and after feeding or medications
  • Do not give pureed foods or other liquids through the tube until the blockage is cleared
  • Do not mix anything new into the formula until the blockage is cleared
  • Use only liquid or finely crushed medicine dissolved in water
  • Not try to remove the blockage yourself before consulting with your child’s healthcare professional for advice on what to do next.
FEEDING TUBE FALLS OUT

Problem

Feeding tube falls out

Possible Cause

  • Your child’s tube may have come out by accident

What to consider

  • First, talk to your child’s healthcare professional on how to best manage a tube that has fallen out

They may suggest you:

  • Cover the opening with a clean cloth or towel (if your child has a gastrostomy or jejunostomy tube which goes directly in through the skin into the stomach or small intestine)
  • Go to the nearest emergency department with your child’s feeding tube

 

Tips to help you and your child with tube feeding

Being well informed and knowing what to expect – including the fact that there can always be surprises – will help both you and your child become comfortable with tube feeding. In no time at all, you will both become tube feeding experts! Here are some additional points to guide you:

  • Being positive about the tube feeding can help your child adjust and help older children see the benefits of tube feeding. Talk to your family and friends about your child’s tube feeding to help make the transition easier.
  • When adjusting to tube feeding, try to maintain as much of your child’s usual routine as possible. If family dinners and story time are part of each day, work these activities into the tube feeding routine at home. Ask your healthcare professionals for help with this process.
  • Expect that social times, like being at school or going to parties, may bring up food-related questions. Speaking to your child’s friends and teachers ahead of time will help your child be ready for these occasions. Also talk to your child about common questions that may come up so that he/she can provide answers on their own.
  • Older children may have concerns or may worry about their body image with a feeding tube. Expect this, and talk with your child often to uncover any fears or concerns to address early on.
  • Keep all instructions for the tube feeding and contact information in one central place. You may wish to include the tube feeding details and progress, such as the diary that follows, with your folder or other items you take to your child’s visits with their healthcare team.
  • As your child gets older, help him or her to be more involved in their medical appointments or care for their tube feeding as much as possible.

 

We believe it is helpful for you to have support from others who are caring for children who need tube feedings at home.


CaringBridge

CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.


Feeding Matters

Feeding Matters is a nonprofit organization committed to improving the lives of infants and children with pediatric feeding disorders. Our education, advocacy, research, and treatment initiatives are providing families and healthcare professionals with the resources and support they need when caring for a child who struggles to eat.


Feeding Tube Awareness Foundation

The Feeding Tube Awareness Foundation is a 501(c)(3) charitable organization dedicated to pediatric enteral feeding, with the mission to provide parents with the practical knowledge and support they need while educating the general public by raising positive awareness of tube feeding.


GIKids

GIKids is the patient outreach and education effort of NASPGHAN - the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition – an organization of more than 1400 pediatric gastroenterologists, predominantly in 46 states, the District of Columbia, Puerto Rico, Mexico and 8 provinces in Canada.


Oley Foundation

The Oley Foundation is an independent, non-profit organization that provides information and psycho-social support to parents and caretakers of children with enteral nutrition needs.

 

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.

 

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The content on this website is for educational purposes only and should not be considered to be medical advice. It is not intended to replace the advice of your child’s healthcare team. Please consult your child’s healthcare team with any questions about your child’s symptoms or feeding concerns.

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