Module 2

There are many potential benefits of G-tube feedings. Below are some of the common reasons caregivers choose to pursue G-tube placement.
​- Growth
- Lung Health
- Reduced Mealtime Stress​
- Improved Energy and Physical Appearance​
- Back-Up Option for Medicines, Hydration or Constipation Management​

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Growth

An important benefit of G-tubes is they can help kids with CF increase their total energy intake, which can lead to noticeable improvements in body weight, typically within months​. Click here to learn more.

Additionally, G-tubes can also lead to improvements in height, which can lead to better lung function as an adult.

Improvements in body mass index (BMI), which is known to improve health for people with children and adults with CF​ are also seen after G-tube placement. Click here to learn more.
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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.

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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.

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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."

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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."

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Lung Health

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

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.​ Click here to learn more.

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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.

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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.

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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.

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Reduced Mealtime Stress​

Many families report that prior to G-tube placement they experienced stress around eating, particularly around meal times.​

G-tubes can help reduce stress about eating at each meal both for caregivers and children with CF, which can lead to improved quality of life for the whole family. Click here to learn more.

This benefit may be especially helpful for families of children with CF who are picky eaters or have sensory feeding disorders.

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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.

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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.

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Improved Energy and Appearance​

Many families feel that G-tubes help their child with CF feel stronger, appear healthier​, and even helped improve their appetite.

One study surveying children with CF and G-tubes and their caregivers found that 77% saw improvement in energy after G-tube placement. Click here to learn more

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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

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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.

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

For many families, a G-tube helps to provide extra calories but also makes it easier to give medicines or extra hydration with illnesses. This becomes particularly useful when children become sick or at risk for dehydration​.

Additionally, children with CF who struggle with constipation or distal intestinal obstruction syndrome (DIOS) can perform "clean outs" at home using the G-tube, which can be easier for some families. Click here to learn more.

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One of the good things about a G-tube-- "If your 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 tuneup." Never seen a downside"​

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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.

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What else would you like to know about G-tubes?
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This is the end of Module 2, which covered the different benefits of G-tubes for children with CF.

The next module will walk you through some of the common concerns about G-tube feeding for children with CF as well as caregivers experiences caring for a child with CF and a G-tube.
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