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.

Let’s start with the potential benefits. 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

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. 
 
Let’s start with the potential benefits. 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><span style="font-family: 'Avenir', sans-serif;">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 />
Let’s start with the potential benefits. 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>- 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></span>

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Potential Benefits of G-tubes

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

Growth

Lung Health

Reduced Mealtime Stress

Improved Energy and Appearance

Back-Up Option for Medicines, Hydration, or Constipation Management

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At the end of Module 2, you will be able to return to this page and re-select benefits to learn more about.

If you would like to read more about the research focused on the different benefits experienced by people with CF after G-tube placement, you can find links to these resources at the end of this decision aid or click in the top right corner.

<p><span style="font-family: 'Avenir', sans-serif;">At the end of Module 2, you will be able to return to this page and re-select benefits to learn more about.<br />
<br />
If you would like to read more about the research focused on the different benefits experienced by people with CF after G-tube placement, you can find links to these resources at the end of this decision aid or click in the top right corner.</p></span>

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Growth

An important benefit of G-tubes is they can help your child increase their daily calorie intake, which can lead to noticeable improvements in growth, typically within months. 

Additionally, G-tubes can also lead to improvements in height. While discussions about growth typically focus on weight, helping your child reach their height potential is an important part of growth. Studies demonstrate that taller individuals have better lung function as an adult.

Improvements in body mass index (BMI), which are associated with improved health for children and adults with CF, are also seen after G-tube placement. 

<p><span style="font-family: 'Avenir', sans-serif;">An important benefit of G-tubes is they can help your child increase their daily calorie intake, which can lead to noticeable improvements in growth, typically within months. <br />
<br />
Additionally, G-tubes can also lead to improvements in height. While discussions about growth typically focus on weight, helping your child reach their height potential is an important part of growth. Studies demonstrate that taller individuals have better lung function as an adult.<br />
<br />
Improvements in body mass index (BMI), which are associated with improved health for children and adults with CF, are also seen after G-tube placement. <br />
</p></span>

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

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

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

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

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Lung Health

Studies looking at lung function before and after G-tube placement have found that G-tube placement can lead to benefits in lung function for people with CF. Specifically, they have found after G-tube placement, people experienced an increase in their FEV1, a measurement of lung function that is associated with improved outcomes for people with CF.

While not all children with CF will have improvement in lung function, some children who start G-tube feedings may have a slower decrease in lung function over time, while other studies show G-tube feedings helped maintain lung function over time. Unfortunately, we do not know how G-tubes placed before children start to reliably measure their lung function will impact long-term FEV1, but we do know that children whose weight 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.

Studies looking at lung function before and after G-tube placement have found that G-tube placement can lead to benefits in lung function for people with CF. Specifically, they have found after G-tube placement, people experienced an increase in their FEV1, a measurement of lung function that is associated with improved outcomes for people with CF. 
 
While not all children with CF will have improvement in lung function, some children who start G-tube feedings may have a slower decrease in lung function over time, while other studies show G-tube feedings helped maintain lung function over time. Unfortunately, we do not know how G-tubes placed before children start to reliably measure their lung function will impact long-term FEV1, but we do know that children whose weight 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.

<p><span style="font-family: 'Avenir', sans-serif;">Studies looking at lung function before and after G-tube placement have found that G-tube placement can lead to benefits in lung function for people with CF. Specifically, they have found after G-tube placement, people experienced an increase in their FEV1, a measurement of lung function that is associated with improved outcomes for people with CF.<br />
<br />
While not all children with CF will have improvement in lung function, some children who start G-tube feedings may have a slower decrease in lung function over time, while other studies show G-tube feedings helped maintain lung function over time. Unfortunately, we do not know how G-tubes placed before children start to reliably measure their lung function will impact long-term FEV1, but we do know that children whose weight 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.<br />
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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><span style="font-family: 'Avenir', sans-serif;">"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></span>

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

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

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Reduced Mealtime Stress

Many families report that prior to G-tube placement, they experienced significant stress about how much their child was eating, particularly around meal times.

G-tubes can help reduce stress about eating at each meal 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.

<p><span style="font-family: 'Avenir', sans-serif;">Many families report that prior to G-tube placement, they experienced significant stress about how much their child was eating, particularly around meal times.<br />
<br />
G-tubes can help reduce stress about eating at each meal 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.</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><span style="font-family: 'Avenir', sans-serif;">"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><span style="font-family: 'Avenir', sans-serif;">"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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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><span style="font-family: 'Avenir', sans-serif;">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 />
<br />
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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><span style="font-family: 'Avenir', sans-serif;">"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><span style="font-family: 'Avenir', sans-serif;">“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><span style="font-family: 'Avenir', sans-serif;">"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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Back-Up Option for Medicines, Hydration or Constipation Management

Medicines: For many families, a G-tube helps to provide extra calories for their child with CF. 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, as needed or if needed on a regular basis.

Hydration: Another benefit is that a G-tube can be particularly useful to give extra hydration, such as Pedialyte, water, or extra formula when their child gets sick or is not drinking as much as normal. Preventing dehydration for kids with CF is important because they are at increased of complications from dehydration, including thicker mucus in the lungs or a bowel obstruction such as distal intestinal obstruction syndrome (DIOS).

Constipation Management: Additionally, children with CF who struggle with constipation can perform "clean outs" at home using their G-tube, which can be easier for kids than drinking the amount needed for a clean out. It may also help prevent the need for a hospitalization or nasogastric tube (NG) placement to perform a clean out.

Medicines: For many families, a G-tube helps to provide extra calories for their child with CF. 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, as needed or if needed on a regular basis. 
 
Hydration: Another benefit is that a G-tube can be particularly useful to give extra hydration, such as Pedialyte, water, or extra formula when their child gets sick or is not drinking as much as normal. Preventing dehydration for kids with CF is important because they are at increased of complications from dehydration, including thicker mucus in the lungs or a bowel obstruction such as distal intestinal obstruction syndrome (DIOS). 
 
Constipation Management: Additionally, children with CF who struggle with constipation can perform "clean outs" at home using their G-tube, which can be easier for kids than drinking the amount needed for a clean out. It may also help prevent the need for a hospitalization or nasogastric tube (NG) placement to perform a clean out.

<p><span style="font-family: 'Avenir', sans-serif;"><b>Medicines:</b> For many families, a G-tube helps to provide extra calories for their child with CF. 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, as needed or if needed on a regular basis.<br />
<br />
<b>Hydration:</b> Another benefit is that a G-tube can be particularly useful to give extra hydration, such as Pedialyte, water, or extra formula when their child gets sick or is not drinking as much as normal. Preventing dehydration for kids with CF is important because they are at increased of complications from dehydration, including thicker mucus in the lungs or a bowel obstruction such as distal intestinal obstruction syndrome (DIOS).<br />
<br />
<b>Constipation Management:</b> Additionally, children with CF who struggle with constipation can perform "clean outs" at home using their G-tube, which can be easier for kids than drinking the amount needed for a clean out. It may also help prevent the need for a hospitalization or nasogastric tube (NG) placement to perform a clean out.<br />
</p></span>

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

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

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

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Reasons to consider a G-tube for your child with CF

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

Rank 1:

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Growth
Lung Health
Reduced Mealtime Stress
Improved Energy and Appearance
Back-Up Option for Medicines, Hydration, or Constipation Management

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Rank 2:

- select an option -
Growth
Lung Health
Reduced Mealtime Stress
Improved Energy and Appearance
Back-Up Option for Medicines, Hydration, or Constipation Management

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Rank 3:

- select an option -
Growth
Lung Health
Reduced Mealtime Stress
Improved Energy and Appearance
Back-Up Option for Medicines, Hydration, or Constipation Management

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Rank 4:

- select an option -
Growth
Lung Health
Reduced Mealtime Stress
Improved Energy and Appearance
Back-Up Option for Medicines, Hydration, or Constipation Management

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Rank 5:

- select an option -
Growth
Lung Health
Reduced Mealtime Stress
Improved Energy and Appearance
Back-Up Option for Medicines, Hydration, or Constipation Management

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Reasons to consider a G-tube for your child with CF

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Potential Benefits of G-tubes

Potential Benefits of G-tubes

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

Growth

Lung Health

Reduced Mealtime Stress​

Improved Energy and Appearance​

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

Reasons to consider a G-tube for your child with CF

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

Reasons to consider a G-tube for your child with CF

Reduced Mealtime Stress

Improved Energy and Appearance

Back-Up Option for Medicines, Hydration or Constipation Management