Potential Benefits of G-tubes

It is not uncommon for caregivers of children with CF who are benefiting from having a G-tube to wish they had made the decision earlier in their child’s life. This is because G-tubes can help kids with CF in a variety of ways. However, considering a G-tube is a personalized decision and requires balancing the potential benefits with potential drawbacks.

Below are some of the most common reasons that parents are happy they chose a G-tube for their child with CF and why you might be considering a G-tube for your child.

- To help your child grow or gain weight better
- To improve your child’s lung health to fight infections better
- To help reduce mealtime stress or worry less about how much your child is eating
- To help improve your child’s energy and physical appearance
- To have a back-up option for medicines, hydration, or constipation management

<p>It is not uncommon for caregivers of children with CF who are benefiting from having a G-tube to wish they had made the decision earlier in their child’s life. This is because G-tubes can help kids with CF in a variety of ways. However, considering a G-tube is a personalized decision and requires balancing the potential benefits with potential drawbacks.<br />
<br />
Below are some of the most common reasons that parents are happy they chose a G-tube for their child with CF and why you might be considering a G-tube for your child.<br />
<b><br />
- To help your child grow or gain weight better<br />
- To improve your child’s lung health to fight infections better<br />
- To help reduce mealtime stress or worry less about how much your child is eating<br />
- To help improve your child’s energy and physical appearance<br />
- To have a back-up option for medicines, hydration, or constipation management</b></p>

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Are there benefits that you would like to learn more about?

Yes, I am interested in learning more about these common benefits for children with CF.

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Explore the Potential Benefits of G-tubes

Families often want to know about the many potential benefits of G-tubes. In this module, you will learn more about these different benefits, as well as read about caregiver’s experiences with these benefits for their children with CF.

<p>Families often want to know about the many potential benefits of G-tubes. In this module, you will learn more about these different benefits, as well as read about caregiver’s experiences with these benefits for their children with CF.</p>

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Which benefit(s) of G-tubes would you like to learn more about for your child? (Select all)

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G-tubes and Growth

An important benefit of G-tubes is they can help your child get more calories, which can lead to noticeable improvements in growth and body mass index (BMI), typically within a few months. Your CF dietician and care team will discuss the many different available formula options, including blenderized formulas, and help you find a formula that works best for your child.

G-tubes can also help kids grow taller. While discussions about growth typically focus on weight or BMI, helping your child reach their height potential is an important part of growth. Studies show that taller people with CF have better lung function as adults.

<p>An important benefit of G-tubes is they can help your child get more calories, which can lead to noticeable improvements in growth and body mass index (BMI), typically within a few months. Your CF dietician and care team will discuss the many different available formula options, including blenderized formulas, and help you find a formula that works best for your child.<br />
<br />
G-tubes can also help kids grow taller. While discussions about growth typically focus on weight or BMI, helping your child reach their height potential is an important part of growth. Studies show that taller people with CF have better lung function as adults.<br />
</p>

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"I have to tell you, he gained weight immediately. I was shocked at how quickly it worked…then he transitioned over to the button and it was life changing. Literally I felt like you could look up and the clouds were parting over our house. All of a sudden, we didn't have this sort of monkey on our back all the time, being like, "He's got to eat this. He's got to eat that," because we immediately were giving him half of his calories at night so it wasn't impacting him during the day."
- Mother, 10 year old boy with CF

<p>"I have to tell you, he gained weight immediately. I was shocked at how quickly it worked…then he transitioned over to the button and it was life changing. Literally I felt like you could look up and the clouds were parting over our house. All of a sudden, we didn't have this sort of monkey on our back all the time, being like, "He's got to eat this. He's got to eat that," because we immediately were giving him half of his calories at night so it wasn't impacting him during the day."<br><b>- Mother, 10 year old boy with CF</b> </p>

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"Her body just couldn't have been able to keep going on...within just six months, we saw a huge transition in her body. She started gaining weight."
- Mother, 10 year old girl with CF

<p>"Her body just couldn't have been able to keep going on...within just six months, we saw a huge transition in her body. She started gaining weight."<br><b>- Mother, 10 year old girl with CF</b></p>

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"Probably about a month or two after getting the G-tube, we noticed how much weight she had gained. So we were like, 'Okay. This is a good thing. We're okay with this.'"
- Mother, 4 year old girl with CF

<p>"Probably about a month or two after getting the G-tube, we noticed how much weight she had gained. So we were like, 'Okay. This is a good thing. We're okay with this.'" <br><b>- Mother, 4 year old girl with CF</b> </p>

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"The other thing that was mind blowing was just he was putting on weight immediately from starting the feeds. And that's a good feeling. It's a really good feeling to just finally see, 'Oh my god, he's growing again."
- Mother, 9 year old boy with CF

<p>"The other thing that was mind blowing was just he was putting on weight immediately from starting the feeds. And that's a good feeling. It's a really good feeling to just finally see, 'Oh my god, he's growing again."<br> <b>- Mother, 9 year old boy with CF</b></p>

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G-tubes and Lung Health

Studies show that G-tube placement can lead to benefits in lung function for people with CF. After G-tube placement, people who were able to perform pulmonary function testing (PFTs), had an increase in their FEV1, a measurement of lung function that is associated with improved outcomes for people with CF.

Not all kids will see the same improvements in their lung function, but some kids may see a slower lung function decline or keep their lung function more steady over time.

We do not know how G-tubes impact lung function for children who are not yet old enough to perform PFTs, because we do not have a baseline measure to compare after G-tube placement. We do know that children whose weight or BMI trends closer to the 50th percentile consistently in early life are more likely to have higher FEV1 when they first perform lung function testing around age 6. There is reason to believe that if G-tube placement can help improve growth, which is associated with better lung health, then starting G-tube feedings earlier may help improve outcomes.

Studies show that G-tube placement can lead to benefits in lung function for people with CF. After G-tube placement, people who were able to perform pulmonary function testing (PFTs), had an increase in their FEV1, a measurement of lung function that is associated with improved outcomes for people with CF. 
 
Not all kids will see the same improvements in their lung function, but some kids may see a slower lung function decline or keep their lung function more steady over time. 
 
We do not know how G-tubes impact lung function for children who are not yet old enough to perform PFTs, because we do not have a baseline measure to compare after G-tube placement. We do know that children whose weight or BMI trends closer to the 50th percentile consistently in early life are more likely to have higher FEV1 when they first perform lung function testing around age 6. There is reason to believe that if G-tube placement can help improve growth, which is associated with better lung health, then starting G-tube feedings earlier may help improve outcomes.

<p>Studies show that G-tube placement can lead to benefits in lung function for people with CF. After G-tube placement, people who were able to perform pulmonary function testing (PFTs), had an increase in their FEV1, a measurement of lung function that is associated with improved outcomes for people with CF.<br />
<br />
Not all kids will see the same improvements in their lung function, but some kids may see a slower lung function decline or keep their lung function more steady over time.<br />
<br />
We do not know how G-tubes impact lung function for children who are not yet old enough to perform PFTs, because we do not have a baseline measure to compare after G-tube placement. We do know that children whose weight or BMI trends closer to the 50th percentile consistently in early life are more likely to have higher FEV1 when they first perform lung function testing around age 6. There is reason to believe that if G-tube placement can help improve growth, which is associated with better lung health, then starting G-tube feedings earlier may help improve outcomes.<br />
</p>

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"I pushed back against the nutritionists. And I pushed against the doctors. And we got the G-tube and he's done nothing but gain. He's thrived. He's fought off infections much easier."
- Mother, 3 year old boy with CF

<p>"I pushed back against the nutritionists. And I pushed against the doctors. And we got the G-tube and he's done nothing but gain. He's thrived. He's fought off infections much easier."<br><b>- Mother, 3 year old boy with CF</b></p>

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"Definitely knowing what I know now, I would not fight it…it’s been a tremendous help for him as far as his weight gain and his physical lung health. Now that we’re able to maintain his weight, he’s able to fight off infections more effectively."
- Father, 7 year old boy with CF

<p>"Definitely knowing what I know now, I would not fight it…it’s been a tremendous help for him as far as his weight gain and his physical lung health. Now that we’re able to maintain his weight, he’s able to fight off infections more effectively."<br><b> - Father, 7 year old boy with CF</b></p>

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"For her, it's been a ginormous success. Her hair is growing beautifully. She looks healthy again...Her lung function is doing really well in correlation with her weight gain and-- I mean, I can't imagine what that would be at if we didn't get a G-tube for her...so I'm really thankful that we did. I just wish we would have done it sooner."
- Mother, 10 year old girl with CF

<p>"For her, it's been a ginormous success. Her hair is growing beautifully. She looks healthy again...Her lung function is doing really well in correlation with her weight gain and-- I mean, I can't imagine what that would be at if we didn't get a G-tube for her...so I'm really thankful that we did. I just wish we would have done it sooner."<br><b>- Mother, 10 year old girl with CF</b></p>

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G-tubes and Reduced Mealtime Stress

Many families report feeling stressed out about how much their child with CF eats, particularly around meal times. Many are also worried about how the stress of trying get their child to eat affects their child and family.

G-tubes can help reduce stress about eating at meals both for caregivers and children with CF, because parents have a reliable way to ensure their child gets the amount of calories they need each day. This often leads to significant improvements in quality of life for the whole family.

This benefit may be especially helpful for families of children with CF who are picky eaters, have poor appetites, or have sensory feeding disorders, such as aversions to certain foods or textures.

<p>Many families report feeling stressed out about how much their child with CF eats, particularly around meal times. Many are also worried about how the stress of trying get their child to eat affects their child and family.<br />
<br />
G-tubes can help reduce stress about eating at meals both for caregivers and children with CF, because parents have a reliable way to ensure their child gets the amount of calories they need each day. This often leads to significant improvements in quality of life for the whole family.<br />
<br />
This benefit may be especially helpful for families of children with CF who are picky eaters, have poor appetites, or have sensory feeding disorders, such as aversions to certain foods or textures.</p>

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"I think that a feeding tube is such a great tool. I think it just took a long time and a lot of realizing that the stress of feeding should not be a thing. You know what I mean? Of all the things that you can stress about in regards to your kid and a diagnosis or something, feeding should literally be the last thing on that list because it's just such a basic human need. I don't want to worry about this. My kid shouldn't have to grow up being stressed about eating. You know what I mean? It shouldn't be a battle.... I mean, does anybody want their kid to have surgery? No. Of course not if you can avoid it. But if you look at it like a tool instead of like a curse-- you know what I mean? It's so important. Nutrition is so important, and we know that. It's just another way to take that stress and remove that stress, so that you can focus on other things."
- Mother, 2 year old girl with CF

<p>"I think that a feeding tube is such a great tool. I think it just took a long time and a lot of realizing that the stress of feeding should not be a thing. You know what I mean? Of all the things that you can stress about in regards to your kid and a diagnosis or something, feeding should literally be the last thing on that list because it's just such a basic human need. I don't want to worry about this. My kid shouldn't have to grow up being stressed about eating. You know what I mean? It shouldn't be a battle.... I mean, does anybody want their kid to have surgery? No. Of course not if you can avoid it. But if you look at it like a tool instead of like a curse-- you know what I mean? It's so important. Nutrition is so important, and we know that. It's just another way to take that stress and remove that stress, so that you can focus on other things."<br><b>- Mother, 2 year old girl with CF</b> </p>

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"It was shocking at how nice that was compared to what we were dealing with before. I mean, we actually could eat a meal without having all this pressure that we would have to apply to him. We just had a normal conversation about whatever, and if he chose not to eat, then we knew we could give him some more calories at night if we needed to. Or if he chose to eat a ton, then we could be like, 'That's so great. We're going to only do two cans of it tonight,' or whatever. So it just made life so much more normal."
- Mother, 6 year old boy with CF

<p>"It was shocking at how nice that was compared to what we were dealing with before. I mean, we actually could eat a meal without having all this pressure that we would have to apply to him. We just had a normal conversation about whatever, and if he chose not to eat, then we knew we could give him some more calories at night if we needed to. Or if he chose to eat a ton, then we could be like, 'That's so great. We're going to only do two cans of it tonight,' or whatever. So it just made life so much more normal."<br><b>- Mother, 6 year old boy with CF</b></p>

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G-tubes and Improved Energy and Appearance

Families often feel that a G-tube helps their child with CF in more than one way. Some caregivers have noted that G-tubes have helped their child feel stronger and appear healthier, and even improved their appetite.

One study looking at children with CF and G-tubes and their caregivers found that 77% saw improvement in their child’s energy levels after G-tube placement. 

These are important considerations that may not be measurable in clinic, but are noticed by caregivers, family, and at school.

<p>Families often feel that a G-tube helps their child with CF in more than one way. Some caregivers have noted that G-tubes have helped their child feel stronger and appear healthier, and even improved their appetite.<br />
<br />
One study looking at children with CF and G-tubes and their caregivers found that 77% saw improvement in their child’s energy levels after G-tube placement. <br />
 <br />
These are important considerations that may not be measurable in clinic, but are noticed by caregivers, family, and at school.<br />
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</p>

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"So babies are supposed to grow, and we had a 6-month old who was losing weight. And so that was really-- in addition to multiple colds, and just he wasn't growing. Our 6-month old looked like he was a month or two old. It's one of those things where I talk with families after they've had G-tubes now that I look back, and I didn't realize how sick they look. And I do think now that they need pictures because he looks horrible. He looks sick, and it's very clear pre and post what a tremendous difference that made for him."
- Mother, 9 year old boy with CF

<p>"So babies are supposed to grow, and we had a 6-month old who was losing weight. And so that was really-- in addition to multiple colds, and just he wasn't growing. Our 6-month old looked like he was a month or two old. It's one of those things where I talk with families after they've had G-tubes now that I look back, and I didn't realize how sick they look. And I do think now that they need pictures because he looks horrible. He looks sick, and it's very clear pre and post what a tremendous difference that made for him."<br><b>- Mother, 9 year old boy with CF</b></p>

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“Looking back at photos before we got the G-tube. She was noticabely more skinny. She was <1st percentile. Back then we looked at her and thought she looked fine, she didn’t look malnourished to us. Looking at her now, after getting some weight on her, there is a noticeable difference. And I wouldn’t want to go back to how she was before."
- Father 3-year-old girl with CF

<p>“Looking back at photos before we got the G-tube. She was noticabely more skinny. She was <1st percentile. Back then we looked at her and thought she looked fine, she didn’t look malnourished to us. Looking at her now, after getting some weight on her, there is a noticeable difference. And I wouldn’t want to go back to how she was before."<br><b>- Father 3-year-old girl with CF</b></p>

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"Honestly, now that he has the G-tube, he actually eats more than what he used to. And if food is a fight and is a power struggle we always have a way to feed him. Thanksgiving is coming up. I don't know how much he'll eat or if he'll even eat at all just because of all the distraction, the hustle and bustle of the holidays. So we're going to take some Real Food Blends with us and I'm just going to tube feed him if he doesn't eat enough to my satisfaction. So then that helps everything, like his behavior, his psyche, everything. And so I've sat there and wondered why didn't do it sooner."
- Mother, 2 year old boy with CF

<p>"Honestly, now that he has the G-tube, he actually eats more than what he used to. And if food is a fight and is a power struggle we always have a way to feed him. Thanksgiving is coming up. I don't know how much he'll eat or if he'll even eat at all just because of all the distraction, the hustle and bustle of the holidays. So we're going to take some Real Food Blends with us and I'm just going to tube feed him if he doesn't eat enough to my satisfaction. So then that helps everything, like his behavior, his psyche, everything. And so I've sat there and wondered why didn't do it sooner."<br><b>- Mother, 2 year old boy with CF</b></p>

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G-tubes and Back-Up Option for Medicines, Hydration or Constipation Management

Medicines: For many families, an added benefit of a G-tube is that it can make it easier for parents to give their child any medication they may need to take, both on a regular basis or as needed. Medicines can be given as liquids through the G-tube so that children don’t have to swallow them if they are not feeling good or if they don’t like the taste of the medicine. Pancreatic enzymes can also be given directly into the G-tube before a meal or bolus.

Hydration: Another benefit of G-tubes is that they can be helpful to give extra hydration, such as Pedialtye, water, or extra formula when your child gets sick or is not drinking as much as normal. Preventing dehydration for kids with CF is important because they are at increased risk of complications from dehydration, including thicker mucus in the lungs, and are at higher risk for developing a serious bowel obstruction, known as distal intestinal obstruction syndrome (DIOS).

Constipation Management: Children with CF who struggle with significant constipation, may need to regularly drink large quantities of liquid medicines, such as laxatives, to help empty their bowls when they are constipated, known as a "clean out." Taking the large volume of laxative by mouth can be challenging for many people, but these medications can also be given through a G-tube. This allows children to do these clean outs in the comfort of their home and prevent hospitalizations for clean outs, which sometimes require nasogastric tube (NG) placement to perform a full clean out.

Medicines: For many families, an added benefit of a G-tube is that it can make it easier for parents to give their child any medication they may need to take, both on a regular basis or as needed. Medicines can be given as liquids through the G-tube so that children don’t have to swallow them if they are not feeling good or if they don’t like the taste of the medicine. Pancreatic enzymes can also be given directly into the G-tube before a meal or bolus. 
 
Hydration: Another benefit of G-tubes is that they can be helpful to give extra hydration, such as Pedialtye, water, or extra formula when your child gets sick or is not drinking as much as normal. Preventing dehydration for kids with CF is important because they are at increased risk of complications from dehydration, including thicker mucus in the lungs, and are at higher risk for developing a serious bowel obstruction, known as distal intestinal obstruction syndrome (DIOS). 
 
Constipation Management: Children with CF who struggle with significant constipation, may need to regularly drink large quantities of liquid medicines, such as laxatives, to help empty their bowls when they are constipated, known as a "clean out." Taking the large volume of laxative by mouth can be challenging for many people, but these medications can also be given through a G-tube. This allows children to do these clean outs in the comfort of their home and prevent hospitalizations for clean outs, which sometimes require nasogastric tube (NG) placement to perform a full clean out.

<p><b>Medicines:</b> For many families, an added benefit of a G-tube is that it can make it easier for parents to give their child any medication they may need to take, both on a regular basis or as needed. Medicines can be given as liquids through the G-tube so that children don’t have to swallow them if they are not feeling good or if they don’t like the taste of the medicine. Pancreatic enzymes can also be given directly into the G-tube before a meal or bolus.<br />
<br />
<b>Hydration:</b> Another benefit of G-tubes is that they can be helpful to give extra hydration, such as Pedialtye, water, or extra formula when your child gets sick or is not drinking as much as normal. Preventing dehydration for kids with CF is important because they are at increased risk of complications from dehydration, including thicker mucus in the lungs, and are at higher risk for developing a serious bowel obstruction, known as distal intestinal obstruction syndrome (DIOS).<br />
<br />
<b>Constipation Management:</b> Children with CF who struggle with significant constipation, may need to regularly drink large quantities of liquid medicines, such as laxatives, to help empty their bowls when they are constipated, known as a "clean out." Taking the large volume of laxative by mouth can be challenging for many people, but these medications can also be given through a G-tube. This allows children to do these clean outs in the comfort of their home and prevent hospitalizations for clean outs, which sometimes require nasogastric tube (NG) placement to perform a full clean out.</p>

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“One of the good things about a G-tube is that if my son gets sick and he gets real weak or sick or he has a common cold or flu-like issue, and it's hard for him to swallow, that I can inject a lot of his medicine through that tube. And if he's so weak, I can give him his Pediasure through the tube, and I can keep him still strong and help him get that good tune-up. I have never seen a downside"
- Father, 3 year old boy with CF

<p>“One of the good things about a G-tube is that if my son gets sick and he gets real weak or sick or he has a common cold or flu-like issue, and it's hard for him to swallow, that I can inject a lot of his medicine through that tube. And if he's so weak, I can give him his Pediasure through the tube, and I can keep him still strong and help him get that good tune-up. I have never seen a downside"<br><b> - Father, 3 year old boy with CF</b></p>

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“Clean-outs were the big reason we kept the G-tube. He initially got the G-tube to help him gain weight and take anxiety away from meal times. But then he got a hang of eating orally, and then it became a way to relieve him from pressure when he was having a blockage and to give him irrigation and other medicines.”
- Mother, 3 year old boy with CF

<p>“Clean-outs were the big reason we kept the G-tube. He initially got the G-tube to help him gain weight and take anxiety away from meal times. But then he got a hang of eating orally, and then it became a way to relieve him from pressure when he was having a blockage and to give him irrigation and other medicines.”<br><b> - Mother, 3 year old boy with CF</b></p>

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"I think it was a good decision. I mean, we're definitely happy. And when they had asked about what we thought about coming off of it, I was like, 'Well, I'm happy to but I feel like it's such a good tool to have.' When he's sick, he gets extra food in there or when he doesn't want to take a medicine, he gets it there. So I feel like it's a great tool to have."
- Mother, 5 year old boy with CF

<p>"I think it was a good decision. I mean, we're definitely happy. And when they had asked about what we thought about coming off of it, I was like, 'Well, I'm happy to but I feel like it's such a good tool to have.' When he's sick, he gets extra food in there or when he doesn't want to take a medicine, he gets it there. So I feel like it's a great tool to have."<br><b>- Mother, 5 year old boy with CF</b></p>

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Navigating CF Tube Feeding

If you didn’t review all the potential benefits of G-tubes and would like to review them now, click the button below.

<p> If you didn’t review all the potential benefits of G-tubes and would like to review them now, <b>click the button below. </b></p>

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After reviewing the potential benefits of G-tubes, please rank the benefits in the order of importance to you or your family when considering a G-tube for your child with CF.

<p> After reviewing the potential benefits of G-tubes, please rank the benefits in the order of importance to you or your family when considering a G-tube for your child with CF.</p>

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Do you have any questions or concerns about potential G-tube benefits that were not answered in Module 2?

These questions will be included in your downloadable summary to share with your CF care team at your next visit.

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Using Navigating CF Tube Feeding to Help Your Decision-Making

This is the end of Module 2, which covered the different benefits of G-tubes for children with CF.

<p>This is the end of <b>Module 2</b>, which covered the different benefits of G-tubes for children with CF.<br />
</p>

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In the next module, you will explore some of the common concerns about G-tube feeding for children with CF as well as common complications.

<p>In the next module, you will explore some of the common concerns about G-tube feeding for children with CF as well as common complications.<br />
</p>

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This is the end of Module 2, which covered the different benefits of G-tubes. If you didn’t review all the potential benefits of G-tubes and would like to review them now, click the button below.

<p>This is the end of <b>Module 2</b>, which covered the different benefits of G-tubes.  If you didn’t review all the potential benefits of G-tubes and would like to review them now, <b>click the button below.</b><br />
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In the next module, you will explore some of the common concerns about G-tube feeding for children with CF as well as common complications.

<p>In the next module, you will explore some of the common concerns about G-tube feeding for children with CF as well as common complications.</p>

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If you would like to read more about the research focused on the role of G-tubes in CF outcomes and care click the References tab in the top right corner.

<p>If you would like to read more about the research focused on the role of G-tubes in CF outcomes and care click the <b>References</b> tab in the top right corner. </p>

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To review and download your personalized information and questions from Module 2, click the button below now. You must download your summary before proceeding to Module 3 to save your responses and questions.

<p>To review and download your personalized information and questions from <b>Module 2,</b> click the button below now. You must download your summary before proceeding to <b>Module 3</b> to save your responses and questions.</p>

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If you would like to read more about the research focused on the role of G-tubes in CF outcomes and care, click the References tab in the top right corner.

<p>If you would like to read more about the research focused on the role of G-tubes in CF outcomes and care, click the <b>References</b> tab in the top right corner.</p>

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Click here to download your Module 2 summary

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Potential Benefits of G-tubes

Explore the Potential Benefits of G-tubes

Which benefit(s) of G-tubes would you like to learn more about for your child? (Select all)

G-tubes and Growth

G-tubes and Lung Health

G-tubes and Reduced Mealtime Stress​

G-tubes and Improved Energy and Appearance​

G-tubes and Back-Up Option for Medicines, Hydration or Constipation Management​

Navigating CF Tube Feeding

Using Navigating CF Tube Feeding to Help Your Decision-Making

Using Navigating CF Tube Feeding to Help Your Decision-Making

G-tubes and Reduced Mealtime Stress

G-tubes and Improved Energy and Appearance

G-tubes and Back-Up Option for Medicines, Hydration or Constipation Management