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Growth Challenges are Common for People with Cystic Fibrosis

Children with cystic fibrosis (CF) may have trouble gaining weight and sometimes this slows down their height gain as well. Children with CF need to consume more calories because they need increased energy to fight lung infections, to compensate for their difficulties absorbing nutrients, and to keep their lungs and body strong to feel their best.

If your child with CF is having a difficult time eating enough or the effort needed to help them grow is becoming very challenging for your family,  your care team may bring up the option of  tube feeding, including a gastrostomy tube, or G-tube for short.

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How to Use This Decision Aid

Having a G-tube can be a healthy way for your child with CF to get the calories and nutrients they need to grow.

Families often have many questions and concerns about G-tubes and their potential impact on their child as well as their family. Caregivers often report it is a difficult decision with many pros and cons to consider.

Decision aids are tools to help people who are considering a potential health decision that has benefits as well as risks and complications, such as a G-tube.

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Let’s start with a few quick questions to help tailor the information in this decision aid to make it useful for you.

How old is your child?
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Do you know your child's weight percentile i.e. weight-for-length (WFL) or body mass index (BMI)?
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Does your child currently have now or in the past any of the below conditions?
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How stressful is feeding your child or mealtimes at home? 
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Has your CF team recommended a G-tube?
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Under Construction

Children >11 years will be important decision-makers when considering a G-tube. Currently, this tool only focuses on caregivers of young children with CF. We know it will be important to have a section for older kids and teenagers to learn about G-tubes, to provide guidance on how to have discussions about G-tubes with older kids, as well as information for older kids and teenagers about caring for their G-tube and concerns about body image.

If you are interested in learning more generally about G-tubes in CF care, this tool may have useful information to consider. this tool to learn more about G-tubes in CF care. Stay tuned for more age-appropriate information about G-tube decision-making soon!

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Prior Knowledge about G-tubes

How much do you know about the benefits of G-tube feeding?
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How much do you know about the risks/complications of G-tube feeding?
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If your team has recommended a G-tube for your child

Where are you in the decision-making process?
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If your team has recommended a G-tube for your child

This decision was hard for me to make.
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This decision is hard for me to make.
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I feel pressure to make a specific choice.
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I’m certain about the best choice for my child and family.
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We know families have different reasons to consider a G-tube. Choose the reasons guiding your decision-making to bring up in future conversations with your CF care team.

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Reasons I Am Considering This Option

Consider the benefits, advantages, or pros. How would you rank them according to how much they matter to you?
Rank: 1
  • - select a option -
  • Help child gain weight
  • Help child fight infections better
  • Help child feel or look healthier
  • Help child have better quality of life
  • Help my child have more energy
  • Reduce the worry about eating enough
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Rank: 2
  • - select a option -
  • Help child gain weight
  • Help child fight infections better
  • Help child feel or look healthier
  • Help child have better quality of life
  • Help my child have more energy
  • Reduce the worry about eating enough
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Rank: 3
  • - select a option -
  • Help child gain weight
  • Help child fight infections better
  • Help child feel or look healthier
  • Help child have better quality of life
  • Help my child have more energy
  • Reduce the worry about eating enough
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Rank: 4
  • - select a option -
  • Help child gain weight
  • Help child fight infections better
  • Help child feel or look healthier
  • Help child have better quality of life
  • Help my child have more energy
  • Reduce the worry about eating enough
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Reasons I Am Concerned About This Option

Consider the risks, disadvantages, or cons. How would you rank them according to how much they matter to you?
Rank: 1
  • - select a option -
  • Surgery
  • Anesthesia
  • How it would affect my child's life (school, sports)
  • How it would affect my child's ability to eat
  • Increased work for caregivers
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Rank: 2
  • - select a option -
  • Surgery
  • Anesthesia
  • How it would affect my child's life (school, sports)
  • How it would affect my child's ability to eat
  • Increased work for caregivers
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Rank: 3
  • - select a option -
  • Surgery
  • Anesthesia
  • How it would affect my child's life (school, sports)
  • How it would affect my child's ability to eat
  • Increased work for caregivers
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Rank: 4
  • - select a option -
  • Surgery
  • Anesthesia
  • How it would affect my child's life (school, sports)
  • How it would affect my child's ability to eat
  • Increased work for caregivers
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Based on your answers...

... you have Feeding your child and mealtimes are currently stressful.

Your child also has or has had the following conditions that may impact their nutritional status and potential need for a G-tube:


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Your CF team has not recommended a G-tube, but this tool can help you learn about the role of G-tubes in CF care. It will also explore reasons why your CF team might recommend a G-tube so that you will feel more prepared and knowledgeable if you and your family consider this decision in the future.

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As a caregiver considering a G-tube, this tool will cover both the benefits and risks/complications of G-tubes as well as allow you to explore the experiences of other caregivers who navigated this decision.

Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool, especially your main concerns of :

and

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As a caregiver who has decided a G-tube is the best choice for your child and family, this tool will cover both the benefits and risks complications of G-tubes as well as allow you to explore the experiences of parenting a child with CF and a G-tube.

Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool.

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Why is Growth Important in CF Care?

Optimizing growth is essential for all children but is especially important for children with CF to support long-term health.

Checking your child’s growth at each appointment is important to make sure their trajectory over time is closer to the 50th percentile, which traditionally has been associated with improved outcomes for people with CF.

If your child struggles to gain or maintain weight or height over time, your care team will guide you through options to optimize their growth. Based on your child’s age range these options can include things like:

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- Optimizing enzyme dosing and administration 
- Suggestions for increasing the calories in each bottle or feeding, such as adding extra formula to breastmilk or formula bottles
- Testing for other conditions that may make it harder to gain or maintain weight
- Managing constipation if present
- Consideration of a reflux medication
- Feeding behavior evaluation if concerns for sensory based feeding difficulties

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- Increasing the calories in each bottle or feeding, such as adding extra formula to breastmilk or formula bottles
- Testing for other conditions that may make it harder to gain or maintain weight
- Managing constipation if present
- Consideration of a reflux medication
- Feeding behavior evaluation if concerns for sensory based feeding difficulties

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- Increasing the calories in each bottle or feeding, such as adding extra formula to breastmilk or formula bottles
- Scheduling mealtimes and snacks
- Mealtime behavior management if cooperation is low and meals are always stressful
- Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child\'s favorite
- Managing constipation if present
- Consideration of a reflux medication
- Address symptoms of sinus disease
- Feeding behavior evaluation if concerns for sensory based feeding difficulties
- Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth
- Trial a medication to help improve your child’s appetite

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- Optimizing enzyme dosing and administration 
- Increasing the calories in each snack and meal, especially your child's favorite foods
- Scheduling mealtimes and snacks
- Mealtime behavior management if cooperation is low and meals are always stressful
- Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child's favorite
- Managing constipation if present
- Consideration of a reflux medication
- Address symptoms of sinus disease
- Feeding behavior evaluation if concerns for sensory based feeding difficulties
- Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth
- Trial a medication to help improve your child’s appetite

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- Optimizing enzyme dosing and administration 
- Increasing the calories in each snack and meal, especially your child's favorite foods
- Scheduling mealtimes and snacks
- Mealtime behavior management if cooperation is low and meals are always stressful
- Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child\'s favorite
- Managing constipation if present
- Consideration of a reflux medication
- Address symptoms of sinus disease
- Feeding behavior evaluation if concerns for sensory based feeding difficulties
- Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth
- Trial a medication to help improve your child’s appetite
- Consider testing for CF-related diabetes

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- Increasing the calories in each snack and meal, especially your child's favorite foods
- Scheduling mealtimes and snacks
- Mealtime behavior management if cooperation is low and meals are always stressful
- Testing different oral supplements (high-calorie beverages, like smoothies and shakes) to find your child\'s favorite
- Managing constipation if present
- Consideration of a reflux medication
- Address symptoms of sinus disease
- Feeding behavior evaluation if concerns for sensory based feeding difficulties
- Testing for other conditions that may make it harder to gain or maintain weight, including bacterial overgrowth
- Trial a medication to help improve your child’s appetite
- Consider testing for CF-related diabetes

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If trying these options do not help to improve your child’s growth, your care team may recommend a G-tube.

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If trying these options do not help to improve your child’s growth, your care team may recommend a G-tube.

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Tube Feeding Basics

Tube feeding is when a soft tube is used to provide nutrition directly into the stomach. 

Typically, the same supplements/formulas that your care team has prescribed for your child to drink can go through this tube. Families can also give certain blended foods, fluids, and some medications through the tube.​ 

Tube feeding typically does not replace eating by mouth. Children can eat as much as they want and also receive extra nutrition to help them grow, develop, and thrive.

Tube feeding, such as a G-tube, can be temporary. G-tubes may be used for months to years and can be easily removed when weight challenges resolve.

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Why are G-tubes used in CF​?

Children with CF have calorie needs that are 1.5 to 2 times higher than those of people without CF. It can be hard for a child to eat that amount of food each day. 

Despite caregivers' best efforts and trying every option to improve growth, nearly 1 in 5 children with CF will use a form of tube feeding by age 10​.

G-tubes make it easier to take in more calories to gain and maintain a healthy weight, which can help people with CF to live longer and healthier lives.

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What are the options for tube feeding in CF?

GASTROSTOMY TUBE (G-Tube)
- A soft flexible tube with a plastic button at the skin that enters the stomach from an incision in the abdomen
- Requires a procedure with anesthesia to place​
- Less visible because usually hidden by shirt
- Typically longer term option, but can easily be removed when no longer needed. It will leave a scar when it is removed

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NASOGASTRIC TUBE (NG)
- A long, thin, flexible tube that goes in the nose and down the throat so the tip is in the stomach.
- The end of the tube is taped to the cheek to hold it in place, though young children (toddler/preschoolers) can still pull the tube out (and commonly do).
- Less invasive because surgery is not required
- NG tube placement may be uncomfortable at first but gets easier with practice. Caregivers and older children/adults can be taught how to insert the NG tube at home themselves and to confirm proper placement
- It can be inserted at night and removed during the day for school. Visible on the face only while it is in place
- NG feeding might be used for a short period of time to ensure tube feeding leads to weight gain before getting a G-tube ​



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How do tube feedings fit into your child's day?


There are two methods of G-tube feeding – continuous infusion overnight and bolus feeds throughout the day. Talk with your CF dietitian to determine which schedule would work best for your family. This will include picking the right nutrition option for your child, including choosing between commercial formulas or blenderized diets.

Continuous feeding: These feedings are typically given over a longer period of time, such as overnight while your child is asleep. These feeds are given by a feeding pump. This option is most common for children and adults who eat well during the day. Getting extra calories during the night will likely delay your child’s appetite for breakfast by several hours.

Bolus feeding: These feedings are typically given over 5-40 minutes, by gravity or on a feeding pump, about 3 times per day, depending on how much your child eats or drinks at mealtimes. Bolus feeds can be given as part of a meal after your child eats what they want. Children who eat small amounts by mouth will benefit from getting a bolus feeding at mealtimes to provide good nutrition while they are awake.

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A CF-specific resource to help you make the best decision for your family

This tool was created with input from other caregivers of children with CF and CF specialists to help you feel more informed about G-tubes and help you make the best decision for your child’s health and your family.

This is the end of Module 1, which covered the basics about G-tubes and tube feedings.

The next module will allow you to explore the many benefits of G-tube feeding and will have information on how G-tubes can help your child and .

The final module will allow you explore the common concerns about G-tubes as well as potential complications and you will find more information about and .

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References

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Questions

Do you have any questions about G-tubes or this decision aid?
If you are on the steering committee, please input your feedback here.
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