To G Tube or not?

[3timesthefun]

Hi,

It has been a long while since I've been on this site. Life is so busy. Anyways, I was hoping to get some input on G tubes, from anyone that has had them or has children that have had them. Our doctor is pushing for two of our kids to get them. The are at the 3rd percentile for weight as well as their BMI. One of the boys has always been at the 3rd and the other dropped from the 10th percentile to the 3rd over this past year. We have tried every high calorie recipe, shake and supplement and the one still does not gain weight. He has pretty severe malabsorption, and eats all the time. The other one just won't eat that much and doesn't have much of an appetite. Any input would be greatly appreciated. Thanks.

 

[3timesthefun]

Hi,

It has been a long while since I've been on this site. Life is so busy. Anyways, I was hoping to get some input on G tubes, from anyone that has had them or has children that have had them. Our doctor is pushing for two of our kids to get them. The are at the 3rd percentile for weight as well as their BMI. One of the boys has always been at the 3rd and the other dropped from the 10th percentile to the 3rd over this past year. We have tried every high calorie recipe, shake and supplement and the one still does not gain weight. He has pretty severe malabsorption, and eats all the time. The other one just won't eat that much and doesn't have much of an appetite. Any input would be greatly appreciated. Thanks.

 

[3timesthefun]

Hi,

It has been a long while since I've been on this site. Life is so busy. Anyways, I was hoping to get some input on G tubes, from anyone that has had them or has children that have had them. Our doctor is pushing for two of our kids to get them. The are at the 3rd percentile for weight as well as their BMI. One of the boys has always been at the 3rd and the other dropped from the 10th percentile to the 3rd over this past year. We have tried every high calorie recipe, shake and supplement and the one still does not gain weight. He has pretty severe malabsorption, and eats all the time. The other one just won't eat that much and doesn't have much of an appetite. Any input would be greatly appreciated. Thanks.

 

[sdelorenzo]

My daughter had a feeding tube for three months when she was an infant. It was such a blessing. She had an undiagnosed milk allergy and refused to eat. She gained weight well on the feeding tube, it was such joy to see her chubby. Since then her weight has been up and down. A year ago her weight was 40% bmi. But since then she not gained any. She had a feeding tube placed and fundoplication done on Monday. She has just done so well this week. We are headed home today I think. I am excited that we won't have the stress each day of trying to get her to eat all of the time. She will just have night feedings, so she should continue to eat as she always does.

I am all about trying to prevent lung problems that low weight gain can cause. As soon as I started seeing this happening to my daughter I asked that she receive the feeding tube. Her doctors tend not to mention things like feeding tubes until I think it is late in the game. We would have done the G-tube procedure 6 months ago when her problems started, but the fundoplication discussion postponed it for a while. But I have heard a lot of success stories about the feeding tube from cf parents. Hopefully my daughter will be one soon. It must be hard to make the decision for triplets. My heart goes out to you with all that you deal with each day.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph, 9 with cf

 

[sdelorenzo]

My daughter had a feeding tube for three months when she was an infant. It was such a blessing. She had an undiagnosed milk allergy and refused to eat. She gained weight well on the feeding tube, it was such joy to see her chubby. Since then her weight has been up and down. A year ago her weight was 40% bmi. But since then she not gained any. She had a feeding tube placed and fundoplication done on Monday. She has just done so well this week. We are headed home today I think. I am excited that we won't have the stress each day of trying to get her to eat all of the time. She will just have night feedings, so she should continue to eat as she always does.

I am all about trying to prevent lung problems that low weight gain can cause. As soon as I started seeing this happening to my daughter I asked that she receive the feeding tube. Her doctors tend not to mention things like feeding tubes until I think it is late in the game. We would have done the G-tube procedure 6 months ago when her problems started, but the fundoplication discussion postponed it for a while. But I have heard a lot of success stories about the feeding tube from cf parents. Hopefully my daughter will be one soon. It must be hard to make the decision for triplets. My heart goes out to you with all that you deal with each day.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph, 9 with cf

 

[sdelorenzo]

My daughter had a feeding tube for three months when she was an infant. It was such a blessing. She had an undiagnosed milk allergy and refused to eat. She gained weight well on the feeding tube, it was such joy to see her chubby. Since then her weight has been up and down. A year ago her weight was 40% bmi. But since then she not gained any. She had a feeding tube placed and fundoplication done on Monday. She has just done so well this week. We are headed home today I think. I am excited that we won't have the stress each day of trying to get her to eat all of the time. She will just have night feedings, so she should continue to eat as she always does.

I am all about trying to prevent lung problems that low weight gain can cause. As soon as I started seeing this happening to my daughter I asked that she receive the feeding tube. Her doctors tend not to mention things like feeding tubes until I think it is late in the game. We would have done the G-tube procedure 6 months ago when her problems started, but the fundoplication discussion postponed it for a while. But I have heard a lot of success stories about the feeding tube from cf parents. Hopefully my daughter will be one soon. It must be hard to make the decision for triplets. My heart goes out to you with all that you deal with each day.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph, 9 with cf

 

[fourkidsmom]

Our 5 yr old son just a G-tube last thursday. He is starting to feel not so sore. He usually has a high pain tolerance. He had ALOT of gas for three days after his surgery. That was very painful to him. I think it is a good move, we do night feedings for 9 hours per night. We right now are at 40 mls per hour and the goal is 100 mls per hour for 9 hours and then at least 2 can of pediasure thru the day with normal eating during the day. His appetite has actually increased during the day-- I can't wait for him to gain weight!! He was at the 16% mark and had dropped from the 50% mark. They say that the weight and lung function go hand in hand. I beleive that is true and I think it is a good thing to get a G-tube. It has only been a week, so we will see what the future holds.

Good luck with your decision.

Fourkidsmom
Step-mom to 15 yr old girl no cf

Mom to 13 yr old boy, no cf, cf carrier

Mom to 5 yr old boy (6 on the 14th!!!) cf, G-tube, cultures staph, cepecia, PA, med-port in upper left hand chest, 4 nose polyup/ sinus surgeries, burst bowel when I was 7 months pregnant with him requiring early C-section delivery and bowel surgery at birth- left with a stoma bag and iliostomy for 2 months until reconnected due to failure to thrive.

Mom to 4 1/2 yr old daughter, no cf, but chromosome 9q 21.2 q 22.1 deletion, developmental delays, seizures, sensory issues, delayed language skills, poor vision, not potty-trained.

 

[fourkidsmom]

Our 5 yr old son just a G-tube last thursday. He is starting to feel not so sore. He usually has a high pain tolerance. He had ALOT of gas for three days after his surgery. That was very painful to him. I think it is a good move, we do night feedings for 9 hours per night. We right now are at 40 mls per hour and the goal is 100 mls per hour for 9 hours and then at least 2 can of pediasure thru the day with normal eating during the day. His appetite has actually increased during the day-- I can't wait for him to gain weight!! He was at the 16% mark and had dropped from the 50% mark. They say that the weight and lung function go hand in hand. I beleive that is true and I think it is a good thing to get a G-tube. It has only been a week, so we will see what the future holds.

Good luck with your decision.

Fourkidsmom
Step-mom to 15 yr old girl no cf

Mom to 13 yr old boy, no cf, cf carrier

Mom to 5 yr old boy (6 on the 14th!!!) cf, G-tube, cultures staph, cepecia, PA, med-port in upper left hand chest, 4 nose polyup/ sinus surgeries, burst bowel when I was 7 months pregnant with him requiring early C-section delivery and bowel surgery at birth- left with a stoma bag and iliostomy for 2 months until reconnected due to failure to thrive.

Mom to 4 1/2 yr old daughter, no cf, but chromosome 9q 21.2 q 22.1 deletion, developmental delays, seizures, sensory issues, delayed language skills, poor vision, not potty-trained.

 

[fourkidsmom]

Our 5 yr old son just a G-tube last thursday. He is starting to feel not so sore. He usually has a high pain tolerance. He had ALOT of gas for three days after his surgery. That was very painful to him. I think it is a good move, we do night feedings for 9 hours per night. We right now are at 40 mls per hour and the goal is 100 mls per hour for 9 hours and then at least 2 can of pediasure thru the day with normal eating during the day. His appetite has actually increased during the day-- I can't wait for him to gain weight!! He was at the 16% mark and had dropped from the 50% mark. They say that the weight and lung function go hand in hand. I beleive that is true and I think it is a good thing to get a G-tube. It has only been a week, so we will see what the future holds.

Good luck with your decision.

Fourkidsmom
Step-mom to 15 yr old girl no cf

Mom to 13 yr old boy, no cf, cf carrier

Mom to 5 yr old boy (6 on the 14th!!!) cf, G-tube, cultures staph, cepecia, PA, med-port in upper left hand chest, 4 nose polyup/ sinus surgeries, burst bowel when I was 7 months pregnant with him requiring early C-section delivery and bowel surgery at birth- left with a stoma bag and iliostomy for 2 months until reconnected due to failure to thrive.

Mom to 4 1/2 yr old daughter, no cf, but chromosome 9q 21.2 q 22.1 deletion, developmental delays, seizures, sensory issues, delayed language skills, poor vision, not potty-trained.

 

[karon72]

Lisa,

It was one of the hardest decisions for my husband & I to make. I didn't want Erin to have elective surgery & we really thought we could help her gain weight on our own with high calorie snacks and eating well. Erin was under the growth charts for a couple of years. She had the tube placed July 2006 summer & has gained 8 lbs so far. She is above the 50% for height & weight & has really filled out. She has more energy & actually eats better. As for the stress at the dinner table, I didn't even know how bad it was for all of us. We wanted her to have a good relationship with food, but ALWAYS trying to get her to eat a few more bites, please just one more. We have wonderful dinners and our quality of life is better. We were always so worried with the way she looked and how small she was compared to everyone else. Actually, she started to look unhealthy. Now, I love the little cellulite bumps on her butt and her filled out face...it is AMAZING!!! She does the tube 2 nights on, then one night off. She receives 3 cans of pediasure over 9-10 hours.

Seeing the difference in Erin's health, I am a huge advocate for the Gtube. I don't know if this goes hand in hand, but Erin has been so much healthier than last year. She faired well in the winter time & had a flare-up in the spring, but did not lose any weight...actually gained!

The surgery was hard because you don't like to see your little ones hurt, but they bounce back very quickly. We were home & on the mend in 5 days. The actual tube is easy to work & easy to keep clean. Erin had a one-step button placed & I highly recommend that because you don't have to worry about getting it wet. She actually still has the one-step in & will change out to a mickey button soon. It is something they do in the doctor's office...no hospital time.

Good luck & if you need to talk, please email anytime! seanandkaron@comcast.net

 

[karon72]

Lisa,

It was one of the hardest decisions for my husband & I to make. I didn't want Erin to have elective surgery & we really thought we could help her gain weight on our own with high calorie snacks and eating well. Erin was under the growth charts for a couple of years. She had the tube placed July 2006 summer & has gained 8 lbs so far. She is above the 50% for height & weight & has really filled out. She has more energy & actually eats better. As for the stress at the dinner table, I didn't even know how bad it was for all of us. We wanted her to have a good relationship with food, but ALWAYS trying to get her to eat a few more bites, please just one more. We have wonderful dinners and our quality of life is better. We were always so worried with the way she looked and how small she was compared to everyone else. Actually, she started to look unhealthy. Now, I love the little cellulite bumps on her butt and her filled out face...it is AMAZING!!! She does the tube 2 nights on, then one night off. She receives 3 cans of pediasure over 9-10 hours.

Seeing the difference in Erin's health, I am a huge advocate for the Gtube. I don't know if this goes hand in hand, but Erin has been so much healthier than last year. She faired well in the winter time & had a flare-up in the spring, but did not lose any weight...actually gained!

The surgery was hard because you don't like to see your little ones hurt, but they bounce back very quickly. We were home & on the mend in 5 days. The actual tube is easy to work & easy to keep clean. Erin had a one-step button placed & I highly recommend that because you don't have to worry about getting it wet. She actually still has the one-step in & will change out to a mickey button soon. It is something they do in the doctor's office...no hospital time.

Good luck & if you need to talk, please email anytime! seanandkaron@comcast.net

 

[karon72]

Lisa,

It was one of the hardest decisions for my husband & I to make. I didn't want Erin to have elective surgery & we really thought we could help her gain weight on our own with high calorie snacks and eating well. Erin was under the growth charts for a couple of years. She had the tube placed July 2006 summer & has gained 8 lbs so far. She is above the 50% for height & weight & has really filled out. She has more energy & actually eats better. As for the stress at the dinner table, I didn't even know how bad it was for all of us. We wanted her to have a good relationship with food, but ALWAYS trying to get her to eat a few more bites, please just one more. We have wonderful dinners and our quality of life is better. We were always so worried with the way she looked and how small she was compared to everyone else. Actually, she started to look unhealthy. Now, I love the little cellulite bumps on her butt and her filled out face...it is AMAZING!!! She does the tube 2 nights on, then one night off. She receives 3 cans of pediasure over 9-10 hours.

Seeing the difference in Erin's health, I am a huge advocate for the Gtube. I don't know if this goes hand in hand, but Erin has been so much healthier than last year. She faired well in the winter time & had a flare-up in the spring, but did not lose any weight...actually gained!

The surgery was hard because you don't like to see your little ones hurt, but they bounce back very quickly. We were home & on the mend in 5 days. The actual tube is easy to work & easy to keep clean. Erin had a one-step button placed & I highly recommend that because you don't have to worry about getting it wet. She actually still has the one-step in & will change out to a mickey button soon. It is something they do in the doctor's office...no hospital time.

Good luck & if you need to talk, please email anytime! seanandkaron@comcast.net

 

[Foody]

I can only imagine what a tough choice it is to make. I wondered if an NG would be helpful for night feeds while not disrupting day time eating. This worked for us when he was a baby...not sure if it is just a different ball game with older ones. Maybe you've tried this already.

Also, have you looked at the role of gut ecology in weight gain and/or things like probiotics, DHA, GSH (oral), or Tumeric to help with appetite and digestion? I've spoken to many people who have been able to totally turn digestive issues around with natural methods to reduce inflammation and restore balance back to the gut. This often helps the gut heal and aids in digestion of nutrients allowing weight gain. This is sometimes not addressed in traditional care, but is critical in gut health and immune function. A daily probiotic to promote proper bacteria flora; DHA (Omega 3 oil) to reduce inflammation; GSH (glutathione) can reduce inflammation and increase appetite in some cases; and tumeric is helpful for some mutations and has helped our sons absorption a ton. Lots of things to try, all not harmful to the body.

Foods can also help support gut ecology. Coconut oil is a good thing to look into. We cook with it and add it to smoothies and oatmeal if he needs to gain. It has the medium chain fatty acids in it (MCT) which are easily used and absorbed, and has antimicrobal and antifungal properties for the gut. There are other protein sources (hemp, goatmilk, rice) as well you can try that are often better tolerated, since milk based proteins can be difficult to digest for some people. Probiotic foods like yogurt, kefirs, buttermilk, and saurkraut can also help build up gut flora. Watch sugar content in some yogurts...plain, whole milk products with honey, nuts, berries, granola ect can be added for calories and a bit of sweetness. Ground flax seeds with yogurt is very beneficial for the gut and immune system

If you go with the g-tube, I've also met some people who make all their own special whole food blends using a Vitamix Mixer (can get a medical necessity discount - PM if you want more info). This way you can add only the things you want and forego much of the corn syrup, sugar and hydrogenated fats in many commercial products (which can irriate the gut). The one mom I talked to had a son who had previously unknown food allergies to corn, milk, and wheat...the commercial supplements she was using were making him worse and worse. She started making her own stuff with meats, greens, berries, and healthy fats and he turned around quickly. She could get things into him that he wouldn't eat otherwise. I believe she used some of the other supplements I mentioned about as well.

Whatever you choose, you are loving and caring for them the best way you can. No matter what it is not a failure and you are a wonderful mom. Do what feels right in your heart.

Warmly,

 

[Foody]

I can only imagine what a tough choice it is to make. I wondered if an NG would be helpful for night feeds while not disrupting day time eating. This worked for us when he was a baby...not sure if it is just a different ball game with older ones. Maybe you've tried this already.

Also, have you looked at the role of gut ecology in weight gain and/or things like probiotics, DHA, GSH (oral), or Tumeric to help with appetite and digestion? I've spoken to many people who have been able to totally turn digestive issues around with natural methods to reduce inflammation and restore balance back to the gut. This often helps the gut heal and aids in digestion of nutrients allowing weight gain. This is sometimes not addressed in traditional care, but is critical in gut health and immune function. A daily probiotic to promote proper bacteria flora; DHA (Omega 3 oil) to reduce inflammation; GSH (glutathione) can reduce inflammation and increase appetite in some cases; and tumeric is helpful for some mutations and has helped our sons absorption a ton. Lots of things to try, all not harmful to the body.

Foods can also help support gut ecology. Coconut oil is a good thing to look into. We cook with it and add it to smoothies and oatmeal if he needs to gain. It has the medium chain fatty acids in it (MCT) which are easily used and absorbed, and has antimicrobal and antifungal properties for the gut. There are other protein sources (hemp, goatmilk, rice) as well you can try that are often better tolerated, since milk based proteins can be difficult to digest for some people. Probiotic foods like yogurt, kefirs, buttermilk, and saurkraut can also help build up gut flora. Watch sugar content in some yogurts...plain, whole milk products with honey, nuts, berries, granola ect can be added for calories and a bit of sweetness. Ground flax seeds with yogurt is very beneficial for the gut and immune system

If you go with the g-tube, I've also met some people who make all their own special whole food blends using a Vitamix Mixer (can get a medical necessity discount - PM if you want more info). This way you can add only the things you want and forego much of the corn syrup, sugar and hydrogenated fats in many commercial products (which can irriate the gut). The one mom I talked to had a son who had previously unknown food allergies to corn, milk, and wheat...the commercial supplements she was using were making him worse and worse. She started making her own stuff with meats, greens, berries, and healthy fats and he turned around quickly. She could get things into him that he wouldn't eat otherwise. I believe she used some of the other supplements I mentioned about as well.

Whatever you choose, you are loving and caring for them the best way you can. No matter what it is not a failure and you are a wonderful mom. Do what feels right in your heart.

Warmly,

 

[Foody]

I can only imagine what a tough choice it is to make. I wondered if an NG would be helpful for night feeds while not disrupting day time eating. This worked for us when he was a baby...not sure if it is just a different ball game with older ones. Maybe you've tried this already.

Also, have you looked at the role of gut ecology in weight gain and/or things like probiotics, DHA, GSH (oral), or Tumeric to help with appetite and digestion? I've spoken to many people who have been able to totally turn digestive issues around with natural methods to reduce inflammation and restore balance back to the gut. This often helps the gut heal and aids in digestion of nutrients allowing weight gain. This is sometimes not addressed in traditional care, but is critical in gut health and immune function. A daily probiotic to promote proper bacteria flora; DHA (Omega 3 oil) to reduce inflammation; GSH (glutathione) can reduce inflammation and increase appetite in some cases; and tumeric is helpful for some mutations and has helped our sons absorption a ton. Lots of things to try, all not harmful to the body.

Foods can also help support gut ecology. Coconut oil is a good thing to look into. We cook with it and add it to smoothies and oatmeal if he needs to gain. It has the medium chain fatty acids in it (MCT) which are easily used and absorbed, and has antimicrobal and antifungal properties for the gut. There are other protein sources (hemp, goatmilk, rice) as well you can try that are often better tolerated, since milk based proteins can be difficult to digest for some people. Probiotic foods like yogurt, kefirs, buttermilk, and saurkraut can also help build up gut flora. Watch sugar content in some yogurts...plain, whole milk products with honey, nuts, berries, granola ect can be added for calories and a bit of sweetness. Ground flax seeds with yogurt is very beneficial for the gut and immune system

If you go with the g-tube, I've also met some people who make all their own special whole food blends using a Vitamix Mixer (can get a medical necessity discount - PM if you want more info). This way you can add only the things you want and forego much of the corn syrup, sugar and hydrogenated fats in many commercial products (which can irriate the gut). The one mom I talked to had a son who had previously unknown food allergies to corn, milk, and wheat...the commercial supplements she was using were making him worse and worse. She started making her own stuff with meats, greens, berries, and healthy fats and he turned around quickly. She could get things into him that he wouldn't eat otherwise. I believe she used some of the other supplements I mentioned about as well.

Whatever you choose, you are loving and caring for them the best way you can. No matter what it is not a failure and you are a wonderful mom. Do what feels right in your heart.

Warmly,

 

[Foody]

Karon...your little one is a cutey...how do you get a little picture like that to show up in your signature?

 

[Foody]

Karon...your little one is a cutey...how do you get a little picture like that to show up in your signature?

 

[Foody]

Karon...your little one is a cutey...how do you get a little picture like that to show up in your signature?

 

[kybert]

***** why are doctors so eager to cut kids open and disfigure them! my god! most kids are skinny, very skinny. fact of life! wait till they go through puberty and if they still need one then they can decide for themselves.

what the? the name of the 'son of god' gets blanked out. ROFL!

 

[kybert]

***** why are doctors so eager to cut kids open and disfigure them! my god! most kids are skinny, very skinny. fact of life! wait till they go through puberty and if they still need one then they can decide for themselves.

what the? the name of the 'son of god' gets blanked out. ROFL!