G Tube

B

BrettsMommy

New member
Hello...my 9 month old Brett w/CF is pancreatic insufficient, with no lung issues. He has been taking Zantac for a month, without really any positive results.

The GI doctor put him on Prevacid this morning, and wants to try it for a month. Both the CF/GI docs are in agreement that if he doesn't gain weight this month, they want to put in a feeding tube.

My husband is in complete denial about the whole situation. It is very difficult to comprehend that Brett has issues, because he looks great, he doesn't look super skinny and he is extremely happy and active.

Has anyone else had a feeding tube put in at this age, and how were the results. I'm really on board with the docs, but battling with the hubby at the same time.

Dori - Mom to Brett w/CF DD508/3359delC, pancreatic insufficient and Brandon 2, no CF, carrier
 
B

BrettsMommy

New member
Hello...my 9 month old Brett w/CF is pancreatic insufficient, with no lung issues. He has been taking Zantac for a month, without really any positive results.

The GI doctor put him on Prevacid this morning, and wants to try it for a month. Both the CF/GI docs are in agreement that if he doesn't gain weight this month, they want to put in a feeding tube.

My husband is in complete denial about the whole situation. It is very difficult to comprehend that Brett has issues, because he looks great, he doesn't look super skinny and he is extremely happy and active.

Has anyone else had a feeding tube put in at this age, and how were the results. I'm really on board with the docs, but battling with the hubby at the same time.

Dori - Mom to Brett w/CF DD508/3359delC, pancreatic insufficient and Brandon 2, no CF, carrier
 
B

BrettsMommy

New member
Hello...my 9 month old Brett w/CF is pancreatic insufficient, with no lung issues. He has been taking Zantac for a month, without really any positive results.

The GI doctor put him on Prevacid this morning, and wants to try it for a month. Both the CF/GI docs are in agreement that if he doesn't gain weight this month, they want to put in a feeding tube.

My husband is in complete denial about the whole situation. It is very difficult to comprehend that Brett has issues, because he looks great, he doesn't look super skinny and he is extremely happy and active.

Has anyone else had a feeding tube put in at this age, and how were the results. I'm really on board with the docs, but battling with the hubby at the same time.

Dori - Mom to Brett w/CF DD508/3359delC, pancreatic insufficient and Brandon 2, no CF, carrier
 
B

BrettsMommy

New member
Hello...my 9 month old Brett w/CF is pancreatic insufficient, with no lung issues. He has been taking Zantac for a month, without really any positive results.

The GI doctor put him on Prevacid this morning, and wants to try it for a month. Both the CF/GI docs are in agreement that if he doesn't gain weight this month, they want to put in a feeding tube.

My husband is in complete denial about the whole situation. It is very difficult to comprehend that Brett has issues, because he looks great, he doesn't look super skinny and he is extremely happy and active.

Has anyone else had a feeding tube put in at this age, and how were the results. I'm really on board with the docs, but battling with the hubby at the same time.

Dori - Mom to Brett w/CF DD508/3359delC, pancreatic insufficient and Brandon 2, no CF, carrier
 
B

BrettsMommy

New member
Hello...my 9 month old Brett w/CF is pancreatic insufficient, with no lung issues. He has been taking Zantac for a month, without really any positive results.
<br />
<br />The GI doctor put him on Prevacid this morning, and wants to try it for a month. Both the CF/GI docs are in agreement that if he doesn't gain weight this month, they want to put in a feeding tube.
<br />
<br />My husband is in complete denial about the whole situation. It is very difficult to comprehend that Brett has issues, because he looks great, he doesn't look super skinny and he is extremely happy and active.
<br />
<br />Has anyone else had a feeding tube put in at this age, and how were the results. I'm really on board with the docs, but battling with the hubby at the same time.
<br />
<br />Dori - Mom to Brett w/CF DD508/3359delC, pancreatic insufficient and Brandon 2, no CF, carrier
 
M

Mommafirst

Guest
Have you tried switching up the enzymes to make sure he's absorbing his food??

Anyway, my daughter starting having weight issues around the age your son is now. She is pancreatic sufficient, but we tried all sorts of enzymes and high cal drinks ad nauseum.

I fought the tube for awhile, for the same reasons you give -- you look at what seems to be a healthy, thriving kiddo and it doesn't compute that they are failing to grow and gain for the CF curve.

But eventually we got to a point where we couldn't fight anymore. She didn't gain even an ounce in over 6 months time. We just did the tube right before she turned three, so no, she wasn't as young as your son. Its been a difficult journey -- I hope you can find your answer and do what you know is right for you son to gain and grow well.

I really hate the tube, but I do really appreciate the health and weight it has brought my daughter's way.
 
M

Mommafirst

Guest
Have you tried switching up the enzymes to make sure he's absorbing his food??

Anyway, my daughter starting having weight issues around the age your son is now. She is pancreatic sufficient, but we tried all sorts of enzymes and high cal drinks ad nauseum.

I fought the tube for awhile, for the same reasons you give -- you look at what seems to be a healthy, thriving kiddo and it doesn't compute that they are failing to grow and gain for the CF curve.

But eventually we got to a point where we couldn't fight anymore. She didn't gain even an ounce in over 6 months time. We just did the tube right before she turned three, so no, she wasn't as young as your son. Its been a difficult journey -- I hope you can find your answer and do what you know is right for you son to gain and grow well.

I really hate the tube, but I do really appreciate the health and weight it has brought my daughter's way.
 
M

Mommafirst

Guest
Have you tried switching up the enzymes to make sure he's absorbing his food??

Anyway, my daughter starting having weight issues around the age your son is now. She is pancreatic sufficient, but we tried all sorts of enzymes and high cal drinks ad nauseum.

I fought the tube for awhile, for the same reasons you give -- you look at what seems to be a healthy, thriving kiddo and it doesn't compute that they are failing to grow and gain for the CF curve.

But eventually we got to a point where we couldn't fight anymore. She didn't gain even an ounce in over 6 months time. We just did the tube right before she turned three, so no, she wasn't as young as your son. Its been a difficult journey -- I hope you can find your answer and do what you know is right for you son to gain and grow well.

I really hate the tube, but I do really appreciate the health and weight it has brought my daughter's way.
 
M

Mommafirst

Guest
Have you tried switching up the enzymes to make sure he's absorbing his food??

Anyway, my daughter starting having weight issues around the age your son is now. She is pancreatic sufficient, but we tried all sorts of enzymes and high cal drinks ad nauseum.

I fought the tube for awhile, for the same reasons you give -- you look at what seems to be a healthy, thriving kiddo and it doesn't compute that they are failing to grow and gain for the CF curve.

But eventually we got to a point where we couldn't fight anymore. She didn't gain even an ounce in over 6 months time. We just did the tube right before she turned three, so no, she wasn't as young as your son. Its been a difficult journey -- I hope you can find your answer and do what you know is right for you son to gain and grow well.

I really hate the tube, but I do really appreciate the health and weight it has brought my daughter's way.
 
M

Mommafirst

Guest
Have you tried switching up the enzymes to make sure he's absorbing his food??
<br />
<br />Anyway, my daughter starting having weight issues around the age your son is now. She is pancreatic sufficient, but we tried all sorts of enzymes and high cal drinks ad nauseum.
<br />
<br />I fought the tube for awhile, for the same reasons you give -- you look at what seems to be a healthy, thriving kiddo and it doesn't compute that they are failing to grow and gain for the CF curve.
<br />
<br />But eventually we got to a point where we couldn't fight anymore. She didn't gain even an ounce in over 6 months time. We just did the tube right before she turned three, so no, she wasn't as young as your son. Its been a difficult journey -- I hope you can find your answer and do what you know is right for you son to gain and grow well.
<br />
<br />I really hate the tube, but I do really appreciate the health and weight it has brought my daughter's way.
 
C

crickit715

New member
my daughter was diagnosed with mi at birth, panc insuff with min. lung issues. we also went thru the failure to thrive. she had the gtube put in a 4months of age and i will NEVER regret it!!! the first 2 months after were difficult, but it has been a blessing!! with cf, your childs growth and lung function directly correlate with each other....so it is imperative to keep your child growing. i could go on and on...but if you have any questions send me a message and we can chat!
 
C

crickit715

New member
my daughter was diagnosed with mi at birth, panc insuff with min. lung issues. we also went thru the failure to thrive. she had the gtube put in a 4months of age and i will NEVER regret it!!! the first 2 months after were difficult, but it has been a blessing!! with cf, your childs growth and lung function directly correlate with each other....so it is imperative to keep your child growing. i could go on and on...but if you have any questions send me a message and we can chat!
 
C

crickit715

New member
my daughter was diagnosed with mi at birth, panc insuff with min. lung issues. we also went thru the failure to thrive. she had the gtube put in a 4months of age and i will NEVER regret it!!! the first 2 months after were difficult, but it has been a blessing!! with cf, your childs growth and lung function directly correlate with each other....so it is imperative to keep your child growing. i could go on and on...but if you have any questions send me a message and we can chat!
 
C

crickit715

New member
my daughter was diagnosed with mi at birth, panc insuff with min. lung issues. we also went thru the failure to thrive. she had the gtube put in a 4months of age and i will NEVER regret it!!! the first 2 months after were difficult, but it has been a blessing!! with cf, your childs growth and lung function directly correlate with each other....so it is imperative to keep your child growing. i could go on and on...but if you have any questions send me a message and we can chat!
 
C

crickit715

New member
my daughter was diagnosed with mi at birth, panc insuff with min. lung issues. we also went thru the failure to thrive. she had the gtube put in a 4months of age and i will NEVER regret it!!! the first 2 months after were difficult, but it has been a blessing!! with cf, your childs growth and lung function directly correlate with each other....so it is imperative to keep your child growing. i could go on and on...but if you have any questions send me a message and we can chat!
 
K

kitomd21

New member
Hi Dori - is your son following a growth curve of some sort or has his weight stayed the same over a period of time? My Ellie has been sitting around the 5th percentile for weight:length, but her doctor isn't interested in placing a g-tube at this time as she is consistently gaining in length and weight (i.e., they aren't solely focusing on weight:length). That is, if she weren't following a consistent upward growth curve, then they would consider placing a g-tube.

She eats about 20-25 oz/day of fortified breast milk and formula (about 1/2&1/2 each bottle). Her bottles are fortified with 3 scoops of Enfamil GentleEase per 3oz water, and 1 tsp formula per 2 oz breast milk. We also add 1-2 tsp raw sugar per bottle with a pinch of salt. She takes 8 enzyme "beads" per feeding of Pancrease MT4's, 7mg Zantac 3x daily, and AquADEKs vitamins.....she's not eating any solids as she has absolutely no interest!
 
K

kitomd21

New member
Hi Dori - is your son following a growth curve of some sort or has his weight stayed the same over a period of time? My Ellie has been sitting around the 5th percentile for weight:length, but her doctor isn't interested in placing a g-tube at this time as she is consistently gaining in length and weight (i.e., they aren't solely focusing on weight:length). That is, if she weren't following a consistent upward growth curve, then they would consider placing a g-tube.

She eats about 20-25 oz/day of fortified breast milk and formula (about 1/2&1/2 each bottle). Her bottles are fortified with 3 scoops of Enfamil GentleEase per 3oz water, and 1 tsp formula per 2 oz breast milk. We also add 1-2 tsp raw sugar per bottle with a pinch of salt. She takes 8 enzyme "beads" per feeding of Pancrease MT4's, 7mg Zantac 3x daily, and AquADEKs vitamins.....she's not eating any solids as she has absolutely no interest!
 
K

kitomd21

New member
Hi Dori - is your son following a growth curve of some sort or has his weight stayed the same over a period of time? My Ellie has been sitting around the 5th percentile for weight:length, but her doctor isn't interested in placing a g-tube at this time as she is consistently gaining in length and weight (i.e., they aren't solely focusing on weight:length). That is, if she weren't following a consistent upward growth curve, then they would consider placing a g-tube.

She eats about 20-25 oz/day of fortified breast milk and formula (about 1/2&1/2 each bottle). Her bottles are fortified with 3 scoops of Enfamil GentleEase per 3oz water, and 1 tsp formula per 2 oz breast milk. We also add 1-2 tsp raw sugar per bottle with a pinch of salt. She takes 8 enzyme "beads" per feeding of Pancrease MT4's, 7mg Zantac 3x daily, and AquADEKs vitamins.....she's not eating any solids as she has absolutely no interest!
 
K

kitomd21

New member
Hi Dori - is your son following a growth curve of some sort or has his weight stayed the same over a period of time? My Ellie has been sitting around the 5th percentile for weight:length, but her doctor isn't interested in placing a g-tube at this time as she is consistently gaining in length and weight (i.e., they aren't solely focusing on weight:length). That is, if she weren't following a consistent upward growth curve, then they would consider placing a g-tube.

She eats about 20-25 oz/day of fortified breast milk and formula (about 1/2&1/2 each bottle). Her bottles are fortified with 3 scoops of Enfamil GentleEase per 3oz water, and 1 tsp formula per 2 oz breast milk. We also add 1-2 tsp raw sugar per bottle with a pinch of salt. She takes 8 enzyme "beads" per feeding of Pancrease MT4's, 7mg Zantac 3x daily, and AquADEKs vitamins.....she's not eating any solids as she has absolutely no interest!
 
K

kitomd21

New member
Hi Dori - is your son following a growth curve of some sort or has his weight stayed the same over a period of time? My Ellie has been sitting around the 5th percentile for weight:length, but her doctor isn't interested in placing a g-tube at this time as she is consistently gaining in length and weight (i.e., they aren't solely focusing on weight:length). That is, if she weren't following a consistent upward growth curve, then they would consider placing a g-tube.
<br />
<br />She eats about 20-25 oz/day of fortified breast milk and formula (about 1/2&1/2 each bottle). Her bottles are fortified with 3 scoops of Enfamil GentleEase per 3oz water, and 1 tsp formula per 2 oz breast milk. We also add 1-2 tsp raw sugar per bottle with a pinch of salt. She takes 8 enzyme "beads" per feeding of Pancrease MT4's, 7mg Zantac 3x daily, and AquADEKs vitamins.....she's not eating any solids as she has absolutely no interest!
 
You must log in or register to reply here.
Top