Cystic Fibrosis Can Make it Hard for Kids to Grow

Cystic fibrosis (CF) affects many parts of the body and can make it hard for kids to gain weight and grow. This happens because their bodies don’t digest or absorb food as well as other kids. If they don’t gain enough weight, they might not grow as tall as they could, which could affect their lung development.

Kids with CF need to eat a lot—about 1.5 to 2 times more than other kids. Their bodies need extra energy to fight lung infections and deal with poor digestion. Having this extra energy can help keep their lungs and body strong and help them to feel their best. Eating that much every day can be tough for kids with CF and stressful for their families.

Checking your child’s growth at each appointment is important to make sure they are growing well. Traditionally, being at or above the 50th percentile for weight and height helps kids with CF stay healthier and have fewer lung problems and hospitalizations.

If your child with CF isn’t growing well or getting them to eat enough is too challenging for your family,  your CF care team may bring up the option of tube feeding, including a gastrostomy tube, or G-tube for short.

Cystic fibrosis (CF) affects many parts of the body and can make it hard for kids to gain weight and grow. This happens because their bodies don’t digest or absorb food as well as other kids. If they don’t gain enough weight, they might not grow as tall as they could, which could affect their lung development. 
 
Kids with CF need to eat a lot—about 1.5 to 2 times more than other kids. Their bodies need extra energy to fight lung infections and deal with poor digestion. Having this extra energy can help keep their lungs and body strong and help them to feel their best. Eating that much every day can be tough for kids with CF and stressful for their families. 
 
Checking your child’s growth at each appointment is important to make sure they are growing well. Traditionally, being at or above the 50th percentile for weight and height helps kids with CF stay healthier and have fewer lung problems and hospitalizations. 
 
If your child with CF isn’t growing well or getting them to eat enough is too challenging for your family,  your CF care team may bring up the option of tube feeding, including a gastrostomy tube, or G-tube for short.

<p><span style="font-family: 'Avenir', sans-serif;"><br />
<br />
Cystic fibrosis (CF) affects many parts of the body and can make it hard for kids to gain weight and grow. This happens because their bodies don’t digest or absorb food as well as other kids. If they don’t gain enough weight, they might not grow as tall as they could, which could affect their lung development.<br />
<br />
Kids with CF need to eat a lot—about 1.5 to 2 times more than other kids. Their bodies need extra energy to fight lung infections and deal with poor digestion. Having this extra energy can help keep their lungs and body strong and help them to feel their best. Eating that much every day can be tough for kids with CF and stressful for their families.<br />
<br />
Checking your child’s growth at each appointment is important to make sure they are growing well. Traditionally, being at or above the 50th percentile for weight and height helps kids with CF stay healthier and have fewer lung problems and hospitalizations.<br />
<br />
If your child with CF isn’t growing well or getting them to eat enough is too challenging for your family,  your CF care team may bring up the option of tube feeding, including a <b>gastrostomy tube,</b> or <b>G-tube</b> for short.</p></span>

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How To Use The Navigating CF Tube Feeding 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 typically have many questions and concerns about G-tubes and the potential impact of a G-tube 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.

This decision aid was created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to help you feel more informed about G-tubes.

This decision aid has 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your CF care team to make sure all your questions and concerns are addressed to help you make the best decision for your child and family.

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 typically have many questions and concerns about G-tubes and the potential impact of a G-tube 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. 
 
This decision aid was created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to help you feel more informed about G-tubes. 
 
This decision aid has 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your CF care team to make sure all your questions and concerns are addressed to help you make the best decision for your child and family.

<p><span style="font-family: 'Avenir', sans-serif;">Having a G-tube can be a healthy way for your child with CF to get the calories and nutrients they need to grow.<br />
<br />
Families typically have many questions and concerns about G-tubes and the potential impact of a G-tube on their child as well as their family. Caregivers often report it is a difficult decision with many pros and cons to consider.<br />
<br />
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.<br />
 <br />
This decision aid was created with support from the Cystic Fibrosis Foundation and with help from caregivers of children with CF and CF specialists to help you feel more informed about G-tubes.<br />
<br />
This decision aid has 3 modules. At the end of each module, you will be able to download your responses and questions to help guide conversations with your CF care team to make sure all your questions and concerns are addressed to help you make the best decision for your child and family.</p></span>

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Let’s start with a few quick questions to tailor Navigating CF Tube Feeding to your specific needs.

Before using Navigating CF Tube Feeding

How knowledgeable do you feel about the benefits of G-tube feeding?

Not at all

A little

Some

A lot

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How knowledgeable do you feel about the challenges/complications of G-tube feeding?

Not at all

A little

Some

A lot

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Thinking about how you felt after the last visit where you discussed a G-tube with your CF care team,

I felt my CF care team clearly explained both the complications and benefits of a G-tube.

Not at all

A little

Some

A lot

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I felt my CF care team made an effort to listen to the things that matter most to me when considering a G-tube.

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I felt clear about which benefits and complications matter most to me and my family.

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I felt involved in decision-making the way I wanted to be involved.

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I understood the different options for tube feeding.

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I felt I had the information I needed to make the best choice for my child and family.

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I felt sure about the best choice for my child and family.

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Coming Soon

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.

Stay tuned for more age-appropriate information about G-tube decision-making soon!

If you are interested in learning more generally about G-tubes in CF care, this tool will still have useful information to consider and discuss with your care team.

<p><span style="font-family: 'Avenir', sans-serif;">Children >11 years will be important decision-makers when considering a G-tube. Currently, this tool only focuses on caregivers of <b><em>young children</b></em> with CF.<br />
<br />
<br />
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.<br />
<br />
<br />
Stay tuned for more age-appropriate information about G-tube decision-making soon!<br />
<br />
If you are interested in learning more generally about G-tubes in CF care, this tool will still have useful information to consider and discuss with your care team.<br />
<br />
</p></span>

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Your CF Care Team is There to Help

While kids with CF may have different health issues, it is common for them to have trouble growing. Addressing nutritional challenges may look different for each child with CF.

Meeting with your clinic’s CF dietitian at each visit has many important benefits. CF dietitians have specialized training in CF nutrition and they can help you:
· Understand your child’s specific barriers to eating well or reasons they refuse to eat more
· Explore reasons for your child’s poor appetite and how to increase it
· Learn about high calorie strategies to try
· Understand the impact of pressuring your child to eat more (and what pressure looks like)
· Create a plan to reduce stress and increase success at mealtimes
· Have a partner on your child's nutritional journey

<p><span style="font-family: 'Avenir', sans-serif;">While kids with CF may have different health issues, it is common for them to have trouble growing. Addressing nutritional challenges may look different for each child with CF.<br />
<br />
Meeting with your clinic’s CF dietitian at each visit has many important benefits. CF dietitians have specialized training in CF nutrition and they can help you:<br />
·  	Understand your child’s specific barriers to eating well or reasons they refuse to eat more<br />
·  	Explore reasons for your child’s poor appetite and how to increase it<br />
·  	Learn about high calorie strategies to try<br />
·  	Understand the impact of pressuring your child to eat more (and what pressure looks like)<br />
·  	Create a plan to reduce stress and increase success at mealtimes<br />
·  	Have a partner on your child's nutritional journey<br />
</p></span>

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If your team has recommended a G-tube for your child

Where are you in the decision-making process?

I am still considering G-tube placement

I have made the decision to pursue G-tube placement

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When I consider the option of my child with CF having a G-tube,

After making the decision to pursue G-tube placement for my child with CF,

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.

<p><span style="font-family: 'Avenir', sans-serif;">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. </p></span>

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We know families have different reasons for choosing to pursue a G-tube. Select which reasons were most important in guiding your decision-making for your child with CF.

<p><span style="font-family: 'Avenir', sans-serif;">We know families have different reasons for choosing to pursue a G-tube.  Select which reasons were most important in guiding your decision-making for your child with CF. </p></span>

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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?

Reasons I Am Choosing a G-tube

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?

Concerns I still have about G-tubes

Based on your answers...

<p><span style="font-family: 'Avenir', sans-serif;"><strong>You have...</strong><br> {child_age}{wfl}{bmi}{wflorbmi} and feeding your child and mealtimes are currently {mealtimes} stressful. <br></p></span>

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<p><span style="font-family: 'Avenir', sans-serif;"><strong>The following conditions may impact your child’s nutritional status and potential need for a G-tube:</strong><br> <br> {conditions}<br />
</p></span>

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<p><span style="font-family: 'Avenir', sans-serif;"><strong>What information in this tool may be especially helpful in your decision-making:</strong><br>Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool, especially:<br />
<br />
- {pros1}<br />
- {pros2}<br />
<br />
and your main concerns of:<br><br>- {concern1} <br>-  {concern2}<br />
</p></span>

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How this tool can be helpful to you:
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.

<p><span style="font-family: 'Avenir', sans-serif;"><strong>How this tool can be helpful to you:</strong><br>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.<br />
</p></span>

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How this tool can be helpful to you:
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.

<p><span style="font-family: 'Avenir', sans-serif;"><strong>How this tool can be helpful to you:</strong><br>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. <br><br>Information that may be more relevant to caring for a child with CF and a G-tube will be highlighted throughout the tool. </p></span>

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How this tool can be helpful to you:

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.

<p><span style="font-family: 'Avenir', sans-serif;"><strong>How this tool can be helpful to you:</strong><br />
<br>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.</p></span>

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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 CF care team has recommended your child drink to increase their caloric intake can go through the tube. Families can also give certain blended foods, fluids, and most 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.

<p><span style="font-family: 'Avenir', sans-serif;">Tube feeding is when a soft tube is used to provide nutrition directly into the stomach. <br />
<br />
Typically, the same supplements/formulas that your CF care team has recommended your child drink to increase their caloric intake can go through the tube. Families can also give certain blended foods, fluids, and most medications through the tube. <br><br><u><b>Tube feeding typically does not replace eating by mouth.</b></u> Children can eat as much as they want <em>and</em> also receive extra nutrition to help them grow, develop, and thrive. <br><br />
<u><b>Tube feeding, such as a G-tube, can be temporary. </u></b>G-tubes may be used for months to years and can be easily removed when weight challenges resolve. </p></span>

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Why are tube feedings used in CF care?

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 and can become stressful for families.

Even when families try everything their CF care team recommends, some kids with CF still have trouble growing. The Cystic Fibrosis Foundation (CFF) supports using tube feeding when needed to help children grow and feel their best.

According to the CFF Patient Registry, 1 in 10 children with CF will use a form of tube feeding by age 10. This means many families consider this decision for their child with CF.

<p><span style="font-family: 'Avenir', sans-serif;">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 and can become stressful for families.<br />
<br />
Even when families try everything their CF care team recommends, some kids with CF still have trouble growing.  The Cystic Fibrosis Foundation (CFF) supports using tube feeding when needed to help children grow and feel their best.<br />
<br />
According to the CFF Patient Registry, 1 in 10 children with CF will use a form of tube feeding by age 10. This means many families consider this decision for their child with CF.<br />
</p></span>

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Cystic Fibrosis Foundation Patient Registry 2023 Annual Data Report

<center><p><span style="font-family: 'Avenir', sans-serif;">Cystic Fibrosis Foundation Patient Registry 2023 Annual Data Report</p></span></center>

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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. On the outside, it looks like a beach ball valve
- Insertion requires a surgical procedure with anesthesia to place
- Less visible because it is hidden by a shirt/top
- Typically a longer term option, but can easily be removed when no longer needed
- There will be a scar when it is removed

<p><span style="font-family: 'Avenir', sans-serif;"><strong><u>GASTROSTOMY TUBE (G-Tube) </u></strong><br />
-- A soft flexible tube with a plastic “button” at the skin that enters the stomach from an incision in the abdomen. On the outside, it looks like a beach ball valve<br />
- Insertion requires a surgical procedure with anesthesia to place<br />
- Less visible because it is hidden by a shirt/top<br />
- Typically a longer term option, but can easily be removed when no longer needed<br />
- There will be a scar when it is removed</p></span>

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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)
- Surgery is not required
- Inserting the NG tube is 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
- It can be inserted at night for overnight tube feeding and removed during the day for school. It is visible on the face only while it is in place
- In some situations, NG feeding can be used for a period of time (usually < 6 months) before a child gets a G-tube

<p><span style="font-family: 'Avenir', sans-serif;"><strong><u>NASOGASTRIC TUBE (NG)</u></strong> <br>- A long, thin, flexible tube that goes in the nose and down the throat so the tip is in the stomach<br />
- 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)<br />
- Surgery is not required<br />
- Inserting the NG tube is 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<br />
- It can be inserted at night for overnight tube feeding and removed during the day for school. It is visible on the face only while it is in place<br />
- In some situations, NG feeding can be used for a period of time (usually < 6 months) before a child gets a G-tube </p></span>

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

There are two common methods of 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.

If you would like to watch an educational video about the different options for tube feeding, click in the top right corner.

<p><span style="font-family: 'Avenir', sans-serif;">There are two common methods of 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. <br><br>If you would like to watch an educational video about the different options for tube feeding, click in the top right corner.</p></span>

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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.

<p><span style="font-family: 'Avenir', sans-serif;"><br />
<b><u>Continuous feeding:</b></u> 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.  </p></span>

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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.

<p><span style="font-family: 'Avenir', sans-serif;"><br />
<b><u>Bolus feeding:</b></u> 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.  </p></span>

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

This is the end of Module 1, which covered the basics about tube feeding and G-tubes. At the end of each module, you will be able to download a summary of your responses and questions to help guide conversations with your CF care team about the best decision for your child and family.

<p><span style="font-family: 'Avenir', sans-serif;">This is the end of Module 1, which covered the basics about tube feeding and G-tubes. At the end of each module, you will be able to download a summary of your responses and questions to help guide conversations with your CF care team about the best decision for your child and family.<br />
</span></p>

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<p><span style="font-family: 'Avenir', sans-serif;">In the next module, you will explore the many benefits of G-tube feeding. <br />
Because you are interested in <strong>{pros1} and {pros2},</strong> there will be information covering these topics that we encourage you to explore.<br />
</span></p>

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<p><span style="font-family: 'Avenir', sans-serif;">In the final module, you will explore the common concerns about G-tubes as well as potential concerns or complications of G-tube feedings.<br />
<br />
Because you are interested in <strong>{concern1} and {concern2}, </strong>there will be information covering these topics that we encourage you to explore.<br />
</span></p>

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Do you have any questions about G-tubes that were not answered in Module 1?

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Ways to use this resource to help your decision-making

You have completed Module 1. If you would like to read more about the research focused on nutritional care in CF, click in the top right corner. You will be able to access this resource page throughout every module.

To review and download your personalized information and questions from module 1, click below.

<p><span style="font-family: 'Avenir', sans-serif;">You have completed Module 1. If you would like to read more about the research focused on nutritional care in CF, click in the top right corner. You will be able to access this resource page throughout every module.<br />
<br />
To review and download your personalized information and questions from module 1, click below.</span></p>

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Click here to download your Module 1 summary

Click here to proceed to Module 2.

Cystic Fibrosis Can Make it Hard for Kids to Grow

How To Use The Navigating CF Tube Feeding Decision Aid

Let’s start with a few quick questions to tailor Navigating CF Tube Feeding to your specific needs.

Before using Navigating CF Tube Feeding

Thinking about how you felt after the last visit where you discussed a G-tube with your CF care team,

Coming Soon

Your CF Care Team is There to Help

Your CF Care Team is There to Help

If your team has recommended a G-tube for your child

When I consider the option of my child with CF having a G-tube,

After making the decision to pursue G-tube placement for my child with CF,

Reasons I Am Considering This Option

Reasons I Am Choosing a G-tube

Reasons I Am Concerned About This Option

Concerns I still have about G-tubes

Based on your answers...

Tube Feeding Basics

Why are tube feedings used in CF care?

What are the options for tube feeding in CF?

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

Choosing the best form of tube feeding for your child?

How interested are you in the following tube feeding options for your child?

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

Ways to use this resource to help your decision-making

Cystic Fibrosis Can Make it Hard for Kids to Grow

How To Use The Navigating CF Tube Feeding Decision Aid

Let’s start with a few quick questions to tailor Navigating CF Tube Feeding to your specific needs.

Before using Navigating CF Tube Feeding

Thinking about how you felt after the last visit where you discussed a G-tube with your CF care team,

Coming Soon

Your CF Care Team is There to Help

Your CF Care Team is There to Help

If your team has recommended a G-tube for your child

When I consider the option of my child with CF having a G-tube,

After making the decision to pursue G-tube placement for my child with CF,

Reasons I Am Considering This Option

Reasons I Am Choosing a G-tube

Reasons I Am Concerned About This Option

Concerns I still have about G-tubes

Based on your answers...

Tube Feeding Basics

Why are tube feedings used in CF​ care?

What are the options for tube feeding in CF?

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

Choosing the best form of tube feeding for your child?

How interested are you in the following tube feeding options for your child?

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

Ways to use this resource to help your decision-making

Why are tube feedings used in CF care?