question for g-tubers

[mom2owen]

After ten + weeks of a respiratory infection, we noticed that Owen lost two pounds since his last clinic appointment seven weeks ago (same scale, same type of clothing, etc.). We had reduced his tubes from 900 mls a day to 600 mls about two months ago. I am wondering if we should increase his formula back up to 900 mls or increase his Creon first. His appetite has been fine the whole time he was sick so it is not due to reduced food intake.
Our GI is calling tomorrow (and she is one doctor we have that we actually love!) but I was just hoping to hear any ideas from the wise ones here. We had wanted so badly to get him off his tubes and with his dramatic weight gain at the start of using Creon, it looked possible. Do you have to do elastase or fecal fat tests to gauge the dose of Creon or can you make a best guess attempt at increasing as your kids grow or if they dip down in weight?
And while we are at it, are we the only ones on elemental formula? He needed the pre-digested fats and proteins or he throws up and has diarrhea. I would love to get on a pre-made formula but they all have casein and lactose in them, both of which have made Owen throw up in the past. We use Neocate and while this is deviating from my original question, I am soooo sick of making formula every night!

 

[mom2owen]

After ten + weeks of a respiratory infection, we noticed that Owen lost two pounds since his last clinic appointment seven weeks ago (same scale, same type of clothing, etc.). We had reduced his tubes from 900 mls a day to 600 mls about two months ago. I am wondering if we should increase his formula back up to 900 mls or increase his Creon first. His appetite has been fine the whole time he was sick so it is not due to reduced food intake.
Our GI is calling tomorrow (and she is one doctor we have that we actually love!) but I was just hoping to hear any ideas from the wise ones here. We had wanted so badly to get him off his tubes and with his dramatic weight gain at the start of using Creon, it looked possible. Do you have to do elastase or fecal fat tests to gauge the dose of Creon or can you make a best guess attempt at increasing as your kids grow or if they dip down in weight?
And while we are at it, are we the only ones on elemental formula? He needed the pre-digested fats and proteins or he throws up and has diarrhea. I would love to get on a pre-made formula but they all have casein and lactose in them, both of which have made Owen throw up in the past. We use Neocate and while this is deviating from my original question, I am soooo sick of making formula every night!

 

[mom2owen]

After ten + weeks of a respiratory infection, we noticed that Owen lost two pounds since his last clinic appointment seven weeks ago (same scale, same type of clothing, etc.). We had reduced his tubes from 900 mls a day to 600 mls about two months ago. I am wondering if we should increase his formula back up to 900 mls or increase his Creon first. His appetite has been fine the whole time he was sick so it is not due to reduced food intake.
<br />Our GI is calling tomorrow (and she is one doctor we have that we actually love!) but I was just hoping to hear any ideas from the wise ones here. We had wanted so badly to get him off his tubes and with his dramatic weight gain at the start of using Creon, it looked possible. Do you have to do elastase or fecal fat tests to gauge the dose of Creon or can you make a best guess attempt at increasing as your kids grow or if they dip down in weight?
<br />And while we are at it, are we the only ones on elemental formula? He needed the pre-digested fats and proteins or he throws up and has diarrhea. I would love to get on a pre-made formula but they all have casein and lactose in them, both of which have made Owen throw up in the past. We use Neocate and while this is deviating from my original question, I am soooo sick of making formula every night!

 

[hmw]

I am so sorry to hear that he's lost weight in addition to being sick for so long. That is very frustrating! I hope the GI helps when she calls back.

Emily is on Peptamen Jr 1.5, which is an elemental formula (however, it comes premixed in cans.) She tried several other supplements before getting the tube (aside from the fact that she consumed 2500cal on a consistent basis) and just didn't gain enough weight. She needs the elemental protein and the mct fat- it made a huge difference for her.

Even when they continue to eat well while sick, there is a much greater demand on them due to how hard their resp. system work, which can result in weight loss. We have instructions to increase tube feeds when Emily is ill to help counteract weight loss when sick. We also give lots of extra hydration this way, which helps... keeps mucus moving and helps maintain weight.

Enzyme dosing is based on a couple things... yes, they can do fecal testing. If elastase testing has already been done and someone has been found to be clearly PI, it probably won't help much to repeat it since replacement enzymes won't change that; however, fecal fat testing can help gauge how well the enzymes are working. Other factors to control dose: Body weight (a loose formula that gives a max daily dose is: 10,000 units of lipase per kg per day), appearance of stools (are you seeing a return of the type of stools and other gi symptoms he had before when malabsorption was a problem?) and weight gain/growth (if they are growing and gaining well and feeling well, it's a positive sign that things are going well in the enzyme dept.)

 

[hmw]

I am so sorry to hear that he's lost weight in addition to being sick for so long. That is very frustrating! I hope the GI helps when she calls back.

Emily is on Peptamen Jr 1.5, which is an elemental formula (however, it comes premixed in cans.) She tried several other supplements before getting the tube (aside from the fact that she consumed 2500cal on a consistent basis) and just didn't gain enough weight. She needs the elemental protein and the mct fat- it made a huge difference for her.

Even when they continue to eat well while sick, there is a much greater demand on them due to how hard their resp. system work, which can result in weight loss. We have instructions to increase tube feeds when Emily is ill to help counteract weight loss when sick. We also give lots of extra hydration this way, which helps... keeps mucus moving and helps maintain weight.

Enzyme dosing is based on a couple things... yes, they can do fecal testing. If elastase testing has already been done and someone has been found to be clearly PI, it probably won't help much to repeat it since replacement enzymes won't change that; however, fecal fat testing can help gauge how well the enzymes are working. Other factors to control dose: Body weight (a loose formula that gives a max daily dose is: 10,000 units of lipase per kg per day), appearance of stools (are you seeing a return of the type of stools and other gi symptoms he had before when malabsorption was a problem?) and weight gain/growth (if they are growing and gaining well and feeling well, it's a positive sign that things are going well in the enzyme dept.)

 

[hmw]

I am so sorry to hear that he's lost weight in addition to being sick for so long. That is very frustrating! I hope the GI helps when she calls back.
<br />
<br />Emily is on Peptamen Jr 1.5, which is an elemental formula (however, it comes premixed in cans.) She tried several other supplements before getting the tube (aside from the fact that she consumed 2500cal on a consistent basis) and just didn't gain enough weight. She needs the elemental protein and the mct fat- it made a huge difference for her.
<br />
<br />Even when they continue to eat well while sick, there is a much greater demand on them due to how hard their resp. system work, which can result in weight loss. We have instructions to increase tube feeds when Emily is ill to help counteract weight loss when sick. We also give lots of extra hydration this way, which helps... keeps mucus moving and helps maintain weight.
<br />
<br />Enzyme dosing is based on a couple things... yes, they can do fecal testing. If elastase testing has already been done and someone has been found to be clearly PI, it probably won't help much to repeat it since replacement enzymes won't change that; however, fecal fat testing can help gauge how well the enzymes are working. Other factors to control dose: Body weight (a loose formula that gives a max daily dose is: 10,000 units of lipase per kg per day), appearance of stools (are you seeing a return of the type of stools and other gi symptoms he had before when malabsorption was a problem?) and weight gain/growth (if they are growing and gaining well and feeling well, it's a positive sign that things are going well in the enzyme dept.)

 

[mom2owen]

Ahhh yes, the quality of poop. I always forget that, which is crazy since we used to obsess about it! He has been sneaking in to the bathroom on his own (obviously he is sick of our past obsessions!) but I will be checking more. I do know that they were looser and breaking apart more in the last couple of times I have seen them.
I have heard a lot of good about the MCT oil. I might ask our GI about that. My dh is thinking we need to add the 300 mls back in. While I am on the topic, we often debate about doing night feeds or adding in to the day. With nebbing and vesting twice a day and tubing twice a day, Owen is hooked up to something for over three hours a day. We had stopped night feeds before because it was causing him to wet the bed <img src="i/expressions/face-icon-small-sad.gif" border="0"> which was mortifying for him as a seven year old. I guess I am thinking it would be great to add the night feed back to reduce his machinery during the day. I know there are others who are much more involved but adding another hour to his equipment time just seems like a lot for a kid. I think I remember you night feeding Emily? How does that go for her? And how many feeds are you doing during daytime hours? I think he needs some day feeds just to stay active enough, he gets run down if we go too long without them. With food and the 900 mls of Neocate, Owen is getting nearly 3,000 + calories. Clearly he needs it or he wouldn't be losing weight, but holy cow!
Thanks for all of your help Harriett, I don't know what I would do without you. I know Emily has had a very hard few weeks and I am hoping she is feeling better and you are taking good care of yourself too.

 

[mom2owen]

Ahhh yes, the quality of poop. I always forget that, which is crazy since we used to obsess about it! He has been sneaking in to the bathroom on his own (obviously he is sick of our past obsessions!) but I will be checking more. I do know that they were looser and breaking apart more in the last couple of times I have seen them.
I have heard a lot of good about the MCT oil. I might ask our GI about that. My dh is thinking we need to add the 300 mls back in. While I am on the topic, we often debate about doing night feeds or adding in to the day. With nebbing and vesting twice a day and tubing twice a day, Owen is hooked up to something for over three hours a day. We had stopped night feeds before because it was causing him to wet the bed <img src="i/expressions/face-icon-small-sad.gif" border="0"> which was mortifying for him as a seven year old. I guess I am thinking it would be great to add the night feed back to reduce his machinery during the day. I know there are others who are much more involved but adding another hour to his equipment time just seems like a lot for a kid. I think I remember you night feeding Emily? How does that go for her? And how many feeds are you doing during daytime hours? I think he needs some day feeds just to stay active enough, he gets run down if we go too long without them. With food and the 900 mls of Neocate, Owen is getting nearly 3,000 + calories. Clearly he needs it or he wouldn't be losing weight, but holy cow!
Thanks for all of your help Harriett, I don't know what I would do without you. I know Emily has had a very hard few weeks and I am hoping she is feeling better and you are taking good care of yourself too.

 

[mom2owen]

Ahhh yes, the quality of poop. I always forget that, which is crazy since we used to obsess about it! He has been sneaking in to the bathroom on his own (obviously he is sick of our past obsessions!) but I will be checking more. I do know that they were looser and breaking apart more in the last couple of times I have seen them.
<br />I have heard a lot of good about the MCT oil. I might ask our GI about that. My dh is thinking we need to add the 300 mls back in. While I am on the topic, we often debate about doing night feeds or adding in to the day. With nebbing and vesting twice a day and tubing twice a day, Owen is hooked up to something for over three hours a day. We had stopped night feeds before because it was causing him to wet the bed <img src="i/expressions/face-icon-small-sad.gif" border="0"> which was mortifying for him as a seven year old. I guess I am thinking it would be great to add the night feed back to reduce his machinery during the day. I know there are others who are much more involved but adding another hour to his equipment time just seems like a lot for a kid. I think I remember you night feeding Emily? How does that go for her? And how many feeds are you doing during daytime hours? I think he needs some day feeds just to stay active enough, he gets run down if we go too long without them. With food and the 900 mls of Neocate, Owen is getting nearly 3,000 + calories. Clearly he needs it or he wouldn't be losing weight, but holy cow!
<br />Thanks for all of your help Harriett, I don't know what I would do without you. I know Emily has had a very hard few weeks and I am hoping she is feeling better and you are taking good care of yourself too.

 

[mom2owen]

Oh, and I am sure our GI will want us to do a fecal fat test. When we tried about six months ago, Owen got super sick from all the fat required to do the test. He threw up and was so constipated. She said we can try it again without doing the 100 grams of fat a day if we keep track of his intake. But, we have to take him off Creon if I remember correctly. Or, maybe she will leave him on it and it will say how much fat he still can't absorb. I don't know if I would rather bump up his weight first and then test or just go for it and hope we can gain quickly after. I guess 72 hours isn't that long to wait. Oh, the decisions...

 

[mom2owen]

Oh, and I am sure our GI will want us to do a fecal fat test. When we tried about six months ago, Owen got super sick from all the fat required to do the test. He threw up and was so constipated. She said we can try it again without doing the 100 grams of fat a day if we keep track of his intake. But, we have to take him off Creon if I remember correctly. Or, maybe she will leave him on it and it will say how much fat he still can't absorb. I don't know if I would rather bump up his weight first and then test or just go for it and hope we can gain quickly after. I guess 72 hours isn't that long to wait. Oh, the decisions...

 

[mom2owen]

Oh, and I am sure our GI will want us to do a fecal fat test. When we tried about six months ago, Owen got super sick from all the fat required to do the test. He threw up and was so constipated. She said we can try it again without doing the 100 grams of fat a day if we keep track of his intake. But, we have to take him off Creon if I remember correctly. Or, maybe she will leave him on it and it will say how much fat he still can't absorb. I don't know if I would rather bump up his weight first and then test or just go for it and hope we can gain quickly after. I guess 72 hours isn't that long to wait. Oh, the decisions...