Feeding Tube Questions

[ehtansky21]

When did the docs start mentioning the possibility of a feeding tube. What perentile were your kids in....what kind of health were they at????
They are talking about it for Ethan Sky and I am not sure we are at that point.

How do you do enzymes when they are feeding all through the night??

Thanks,
Missa

 

[ehtansky21]

When did the docs start mentioning the possibility of a feeding tube. What perentile were your kids in....what kind of health were they at????
They are talking about it for Ethan Sky and I am not sure we are at that point.

How do you do enzymes when they are feeding all through the night??

Thanks,
Missa

 

[ehtansky21]

When did the docs start mentioning the possibility of a feeding tube. What perentile were your kids in....what kind of health were they at????
They are talking about it for Ethan Sky and I am not sure we are at that point.

How do you do enzymes when they are feeding all through the night??

Thanks,
Missa

 

[ehtansky21]

When did the docs start mentioning the possibility of a feeding tube. What perentile were your kids in....what kind of health were they at????
They are talking about it for Ethan Sky and I am not sure we are at that point.

How do you do enzymes when they are feeding all through the night??

Thanks,
Missa

 

[ehtansky21]

When did the docs start mentioning the possibility of a feeding tube. What perentile were your kids in....what kind of health were they at????
They are talking about it for Ethan Sky and I am not sure we are at that point.

How do you do enzymes when they are feeding all through the night??

Thanks,
Missa

 

[izemmom]

I understand totally what you mean when you say y ou are not sure you are at the point of needing a tube. I went through that too, but I'm so glad we went ahead with it.

Emily was 18 months old, 19 pounds...if I remember correctly, she was about the 16th percentile. I could be wrond about that, I don't remember. Her weight had stalled, but other than that she was perfectly healthy. No coughs, no colds, no tummy troubles other than malapsorption. Our docs wanted to be proactive with the tube...set her up for better health through this winter by putting some weight on her in the fall.

It was the scariest, hardest decision we ever had to make. Emily now weighs around 26 pounds, she got her tube in August. She is doing great. Looks good with the extra pounds, had managed to fend off the colds the rest of us have had. IT was worth it to get the tube.

I was worried that the care of t he tube would be too much for us...it's not at all. It's not hard. THere have been a few minor snags along the way, but nothing we couldn't handle.

Feel free to PM with specific questions. I understand that a tube ish't for everyone, but I will never regret getting it for Emily.

 

[izemmom]

I understand totally what you mean when you say y ou are not sure you are at the point of needing a tube. I went through that too, but I'm so glad we went ahead with it.

Emily was 18 months old, 19 pounds...if I remember correctly, she was about the 16th percentile. I could be wrond about that, I don't remember. Her weight had stalled, but other than that she was perfectly healthy. No coughs, no colds, no tummy troubles other than malapsorption. Our docs wanted to be proactive with the tube...set her up for better health through this winter by putting some weight on her in the fall.

It was the scariest, hardest decision we ever had to make. Emily now weighs around 26 pounds, she got her tube in August. She is doing great. Looks good with the extra pounds, had managed to fend off the colds the rest of us have had. IT was worth it to get the tube.

I was worried that the care of t he tube would be too much for us...it's not at all. It's not hard. THere have been a few minor snags along the way, but nothing we couldn't handle.

Feel free to PM with specific questions. I understand that a tube ish't for everyone, but I will never regret getting it for Emily.

 

[izemmom]

I understand totally what you mean when you say y ou are not sure you are at the point of needing a tube. I went through that too, but I'm so glad we went ahead with it.

Emily was 18 months old, 19 pounds...if I remember correctly, she was about the 16th percentile. I could be wrond about that, I don't remember. Her weight had stalled, but other than that she was perfectly healthy. No coughs, no colds, no tummy troubles other than malapsorption. Our docs wanted to be proactive with the tube...set her up for better health through this winter by putting some weight on her in the fall.

It was the scariest, hardest decision we ever had to make. Emily now weighs around 26 pounds, she got her tube in August. She is doing great. Looks good with the extra pounds, had managed to fend off the colds the rest of us have had. IT was worth it to get the tube.

I was worried that the care of t he tube would be too much for us...it's not at all. It's not hard. THere have been a few minor snags along the way, but nothing we couldn't handle.

Feel free to PM with specific questions. I understand that a tube ish't for everyone, but I will never regret getting it for Emily.

 

[izemmom]

I understand totally what you mean when you say y ou are not sure you are at the point of needing a tube. I went through that too, but I'm so glad we went ahead with it.

Emily was 18 months old, 19 pounds...if I remember correctly, she was about the 16th percentile. I could be wrond about that, I don't remember. Her weight had stalled, but other than that she was perfectly healthy. No coughs, no colds, no tummy troubles other than malapsorption. Our docs wanted to be proactive with the tube...set her up for better health through this winter by putting some weight on her in the fall.

It was the scariest, hardest decision we ever had to make. Emily now weighs around 26 pounds, she got her tube in August. She is doing great. Looks good with the extra pounds, had managed to fend off the colds the rest of us have had. IT was worth it to get the tube.

I was worried that the care of t he tube would be too much for us...it's not at all. It's not hard. THere have been a few minor snags along the way, but nothing we couldn't handle.

Feel free to PM with specific questions. I understand that a tube ish't for everyone, but I will never regret getting it for Emily.

 

[izemmom]

I understand totally what you mean when you say y ou are not sure you are at the point of needing a tube. I went through that too, but I'm so glad we went ahead with it.

Emily was 18 months old, 19 pounds...if I remember correctly, she was about the 16th percentile. I could be wrond about that, I don't remember. Her weight had stalled, but other than that she was perfectly healthy. No coughs, no colds, no tummy troubles other than malapsorption. Our docs wanted to be proactive with the tube...set her up for better health through this winter by putting some weight on her in the fall.

It was the scariest, hardest decision we ever had to make. Emily now weighs around 26 pounds, she got her tube in August. She is doing great. Looks good with the extra pounds, had managed to fend off the colds the rest of us have had. IT was worth it to get the tube.

I was worried that the care of t he tube would be too much for us...it's not at all. It's not hard. THere have been a few minor snags along the way, but nothing we couldn't handle.

Feel free to PM with specific questions. I understand that a tube ish't for everyone, but I will never regret getting it for Emily.

 

[sdelorenzo]

My daughter was in the 17th percentile when I decided she should have it. Her drs never mentioned a feeding tube to me. But after 5 yrs of often begging her to eat, we were done with the constant battle of hoping to get extra pounds on her. She went from 36 pounds this past March when she got the surgery to 48 today. It is wonderful to have her so healthy now.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

My daughter was in the 17th percentile when I decided she should have it. Her drs never mentioned a feeding tube to me. But after 5 yrs of often begging her to eat, we were done with the constant battle of hoping to get extra pounds on her. She went from 36 pounds this past March when she got the surgery to 48 today. It is wonderful to have her so healthy now.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

My daughter was in the 17th percentile when I decided she should have it. Her drs never mentioned a feeding tube to me. But after 5 yrs of often begging her to eat, we were done with the constant battle of hoping to get extra pounds on her. She went from 36 pounds this past March when she got the surgery to 48 today. It is wonderful to have her so healthy now.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

My daughter was in the 17th percentile when I decided she should have it. Her drs never mentioned a feeding tube to me. But after 5 yrs of often begging her to eat, we were done with the constant battle of hoping to get extra pounds on her. She went from 36 pounds this past March when she got the surgery to 48 today. It is wonderful to have her so healthy now.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[sdelorenzo]

My daughter was in the 17th percentile when I decided she should have it. Her drs never mentioned a feeding tube to me. But after 5 yrs of often begging her to eat, we were done with the constant battle of hoping to get extra pounds on her. She went from 36 pounds this past March when she got the surgery to 48 today. It is wonderful to have her so healthy now.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf

 

[AnnaH]

I got mine as a baby after MI surgery, and kept it because of weight issues. I had that one pulled when I was 6 and was doing okay.
I had another one placed when I was 8, because I just couldn't put weight on, and the stress of trying was making me miserable. I was also getting every cold or flu that went around- I just didn't have the reserves to fight it off. I wasn't terribly sick, but worse than I had ever been, and we thought it was best to kindof head it off.
I still do feeds every night, and i'm still very thin(1.3d percentile<img src="">)) but i think it helped me grow, and I'd like to think it delayed some of my lung problems.

Have you seen a dietician? They might have some suggestions for high fat food. Also, is malabsorbtion a problem? Sometimes switching some meds can really help. I put on ten pounds in 3 months after switching from cotazyme to creon.
If you don't know why they want to do it, then ask, and don't let them do anything until you are satisfied. If there are other options try them. While the tube can really help, it's invasive and complications do happen.


I just take enzymes before and after the feed.

 

[AnnaH]

I got mine as a baby after MI surgery, and kept it because of weight issues. I had that one pulled when I was 6 and was doing okay.
I had another one placed when I was 8, because I just couldn't put weight on, and the stress of trying was making me miserable. I was also getting every cold or flu that went around- I just didn't have the reserves to fight it off. I wasn't terribly sick, but worse than I had ever been, and we thought it was best to kindof head it off.
I still do feeds every night, and i'm still very thin(1.3d percentile<img src="">)) but i think it helped me grow, and I'd like to think it delayed some of my lung problems.

Have you seen a dietician? They might have some suggestions for high fat food. Also, is malabsorbtion a problem? Sometimes switching some meds can really help. I put on ten pounds in 3 months after switching from cotazyme to creon.
If you don't know why they want to do it, then ask, and don't let them do anything until you are satisfied. If there are other options try them. While the tube can really help, it's invasive and complications do happen.


I just take enzymes before and after the feed.

 

[AnnaH]

I got mine as a baby after MI surgery, and kept it because of weight issues. I had that one pulled when I was 6 and was doing okay.
I had another one placed when I was 8, because I just couldn't put weight on, and the stress of trying was making me miserable. I was also getting every cold or flu that went around- I just didn't have the reserves to fight it off. I wasn't terribly sick, but worse than I had ever been, and we thought it was best to kindof head it off.
I still do feeds every night, and i'm still very thin(1.3d percentile<img src="">)) but i think it helped me grow, and I'd like to think it delayed some of my lung problems.

Have you seen a dietician? They might have some suggestions for high fat food. Also, is malabsorbtion a problem? Sometimes switching some meds can really help. I put on ten pounds in 3 months after switching from cotazyme to creon.
If you don't know why they want to do it, then ask, and don't let them do anything until you are satisfied. If there are other options try them. While the tube can really help, it's invasive and complications do happen.


I just take enzymes before and after the feed.

 

[AnnaH]

I got mine as a baby after MI surgery, and kept it because of weight issues. I had that one pulled when I was 6 and was doing okay.
I had another one placed when I was 8, because I just couldn't put weight on, and the stress of trying was making me miserable. I was also getting every cold or flu that went around- I just didn't have the reserves to fight it off. I wasn't terribly sick, but worse than I had ever been, and we thought it was best to kindof head it off.
I still do feeds every night, and i'm still very thin(1.3d percentile<img src="">)) but i think it helped me grow, and I'd like to think it delayed some of my lung problems.

Have you seen a dietician? They might have some suggestions for high fat food. Also, is malabsorbtion a problem? Sometimes switching some meds can really help. I put on ten pounds in 3 months after switching from cotazyme to creon.
If you don't know why they want to do it, then ask, and don't let them do anything until you are satisfied. If there are other options try them. While the tube can really help, it's invasive and complications do happen.


I just take enzymes before and after the feed.

 

[AnnaH]

I got mine as a baby after MI surgery, and kept it because of weight issues. I had that one pulled when I was 6 and was doing okay.
I had another one placed when I was 8, because I just couldn't put weight on, and the stress of trying was making me miserable. I was also getting every cold or flu that went around- I just didn't have the reserves to fight it off. I wasn't terribly sick, but worse than I had ever been, and we thought it was best to kindof head it off.
I still do feeds every night, and i'm still very thin(1.3d percentile<img src="">)) but i think it helped me grow, and I'd like to think it delayed some of my lung problems.

Have you seen a dietician? They might have some suggestions for high fat food. Also, is malabsorbtion a problem? Sometimes switching some meds can really help. I put on ten pounds in 3 months after switching from cotazyme to creon.
If you don't know why they want to do it, then ask, and don't let them do anything until you are satisfied. If there are other options try them. While the tube can really help, it's invasive and complications do happen.


I just take enzymes before and after the feed.