Need advice

B

BabyBeauty

New member
Okay so my dietician called me today and I am a little freaked out.

My 5 month old has been going for weight checks every 2 weeks since diagnosis 4 months ago. She has always gained weight, but not to her 'goal' each time. Each visit we have tweaked something whether it be her enzymes, formula, calories, etc.

This last visit our dietician was out so she called today and talked with me over the phone. Since my daughter is not taking the amount of ounces each day she is not hitting her needed fluid intake. She mentioned that if this continues we will have to go on a feeding tube. As you can all imagine I don't want to go to this if we don't need to. I am sure there are other options out there. My daughter is in the 25th percentile and is a very happy little baby.

Here is what she is on and what we have tried:

<u>Formula:</u>
Pregestimil
Simply Thick Nectar (to thicken so she won't vomit from the GERD)
Duocal (added for extra calories)

<u>Meds</u>
Vitamax
Regalan (.7ml 3X day)
Prevacid (7.5mg/ml 2X day)

We tried Gentelease and it didn't work. Currently she is fed on demand, but the dietician would like me to put her on a 3 hour feeding schedule and only feed her what she will eat in 30 minutes. She thinks/hopes that my daughters issue is that she is 'grazing.' She will eat a little and take a 30-40 minute break and then finish the bottle.

<b>Isn't there other meds out there to increase appetite? Is there any other tips out there that I can suggest before we go on a feeding tube? </b>

Disclaimer: I know a feeding tube is not the end of the world and I will do it if it is what is best for my daughter, but I think we have other options out there before we resort to it. Right now my daughter is sooooo happy, she smiles all the time. I don't want her to be uncomfortable!
 
B

BabyBeauty

New member
Okay so my dietician called me today and I am a little freaked out.

My 5 month old has been going for weight checks every 2 weeks since diagnosis 4 months ago. She has always gained weight, but not to her 'goal' each time. Each visit we have tweaked something whether it be her enzymes, formula, calories, etc.

This last visit our dietician was out so she called today and talked with me over the phone. Since my daughter is not taking the amount of ounces each day she is not hitting her needed fluid intake. She mentioned that if this continues we will have to go on a feeding tube. As you can all imagine I don't want to go to this if we don't need to. I am sure there are other options out there. My daughter is in the 25th percentile and is a very happy little baby.

Here is what she is on and what we have tried:

<u>Formula:</u>
Pregestimil
Simply Thick Nectar (to thicken so she won't vomit from the GERD)
Duocal (added for extra calories)

<u>Meds</u>
Vitamax
Regalan (.7ml 3X day)
Prevacid (7.5mg/ml 2X day)

We tried Gentelease and it didn't work. Currently she is fed on demand, but the dietician would like me to put her on a 3 hour feeding schedule and only feed her what she will eat in 30 minutes. She thinks/hopes that my daughters issue is that she is 'grazing.' She will eat a little and take a 30-40 minute break and then finish the bottle.

<b>Isn't there other meds out there to increase appetite? Is there any other tips out there that I can suggest before we go on a feeding tube? </b>

Disclaimer: I know a feeding tube is not the end of the world and I will do it if it is what is best for my daughter, but I think we have other options out there before we resort to it. Right now my daughter is sooooo happy, she smiles all the time. I don't want her to be uncomfortable!
 
B

BabyBeauty

New member
Okay so my dietician called me today and I am a little freaked out.

My 5 month old has been going for weight checks every 2 weeks since diagnosis 4 months ago. She has always gained weight, but not to her 'goal' each time. Each visit we have tweaked something whether it be her enzymes, formula, calories, etc.

This last visit our dietician was out so she called today and talked with me over the phone. Since my daughter is not taking the amount of ounces each day she is not hitting her needed fluid intake. She mentioned that if this continues we will have to go on a feeding tube. As you can all imagine I don't want to go to this if we don't need to. I am sure there are other options out there. My daughter is in the 25th percentile and is a very happy little baby.

Here is what she is on and what we have tried:

<u>Formula:</u>
Pregestimil
Simply Thick Nectar (to thicken so she won't vomit from the GERD)
Duocal (added for extra calories)

<u>Meds</u>
Vitamax
Regalan (.7ml 3X day)
Prevacid (7.5mg/ml 2X day)

We tried Gentelease and it didn't work. Currently she is fed on demand, but the dietician would like me to put her on a 3 hour feeding schedule and only feed her what she will eat in 30 minutes. She thinks/hopes that my daughters issue is that she is 'grazing.' She will eat a little and take a 30-40 minute break and then finish the bottle.

<b>Isn't there other meds out there to increase appetite? Is there any other tips out there that I can suggest before we go on a feeding tube? </b>

Disclaimer: I know a feeding tube is not the end of the world and I will do it if it is what is best for my daughter, but I think we have other options out there before we resort to it. Right now my daughter is sooooo happy, she smiles all the time. I don't want her to be uncomfortable!
 
B

BabyBeauty

New member
Okay so my dietician called me today and I am a little freaked out.

My 5 month old has been going for weight checks every 2 weeks since diagnosis 4 months ago. She has always gained weight, but not to her 'goal' each time. Each visit we have tweaked something whether it be her enzymes, formula, calories, etc.

This last visit our dietician was out so she called today and talked with me over the phone. Since my daughter is not taking the amount of ounces each day she is not hitting her needed fluid intake. She mentioned that if this continues we will have to go on a feeding tube. As you can all imagine I don't want to go to this if we don't need to. I am sure there are other options out there. My daughter is in the 25th percentile and is a very happy little baby.

Here is what she is on and what we have tried:

<u>Formula:</u>
Pregestimil
Simply Thick Nectar (to thicken so she won't vomit from the GERD)
Duocal (added for extra calories)

<u>Meds</u>
Vitamax
Regalan (.7ml 3X day)
Prevacid (7.5mg/ml 2X day)

We tried Gentelease and it didn't work. Currently she is fed on demand, but the dietician would like me to put her on a 3 hour feeding schedule and only feed her what she will eat in 30 minutes. She thinks/hopes that my daughters issue is that she is 'grazing.' She will eat a little and take a 30-40 minute break and then finish the bottle.

<b>Isn't there other meds out there to increase appetite? Is there any other tips out there that I can suggest before we go on a feeding tube? </b>

Disclaimer: I know a feeding tube is not the end of the world and I will do it if it is what is best for my daughter, but I think we have other options out there before we resort to it. Right now my daughter is sooooo happy, she smiles all the time. I don't want her to be uncomfortable!
 
B

BabyBeauty

New member
Okay so my dietician called me today and I am a little freaked out.
<br />
<br />My 5 month old has been going for weight checks every 2 weeks since diagnosis 4 months ago. She has always gained weight, but not to her 'goal' each time. Each visit we have tweaked something whether it be her enzymes, formula, calories, etc.
<br />
<br />This last visit our dietician was out so she called today and talked with me over the phone. Since my daughter is not taking the amount of ounces each day she is not hitting her needed fluid intake. She mentioned that if this continues we will have to go on a feeding tube. As you can all imagine I don't want to go to this if we don't need to. I am sure there are other options out there. My daughter is in the 25th percentile and is a very happy little baby.
<br />
<br />Here is what she is on and what we have tried:
<br />
<br /><u>Formula:</u>
<br />Pregestimil
<br />Simply Thick Nectar (to thicken so she won't vomit from the GERD)
<br />Duocal (added for extra calories)
<br />
<br /><u>Meds</u>
<br />Vitamax
<br />Regalan (.7ml 3X day)
<br />Prevacid (7.5mg/ml 2X day)
<br />
<br />We tried Gentelease and it didn't work. Currently she is fed on demand, but the dietician would like me to put her on a 3 hour feeding schedule and only feed her what she will eat in 30 minutes. She thinks/hopes that my daughters issue is that she is 'grazing.' She will eat a little and take a 30-40 minute break and then finish the bottle.
<br />
<br /><b>Isn't there other meds out there to increase appetite? Is there any other tips out there that I can suggest before we go on a feeding tube? </b>
<br />
<br />Disclaimer: I know a feeding tube is not the end of the world and I will do it if it is what is best for my daughter, but I think we have other options out there before we resort to it. Right now my daughter is sooooo happy, she smiles all the time. I don't want her to be uncomfortable!
<br />
 
S

shimmereestar

New member
Have you thought about thickening with rice cereal as opposed to simply thick? (Extra cals...) I have also added 2 ml of corn oil to Ellie's bottle for cals. That has seemed to help her a bit. In addition to that we make her formula 24 cal.
 
S

shimmereestar

New member
Have you thought about thickening with rice cereal as opposed to simply thick? (Extra cals...) I have also added 2 ml of corn oil to Ellie's bottle for cals. That has seemed to help her a bit. In addition to that we make her formula 24 cal.
 
S

shimmereestar

New member
Have you thought about thickening with rice cereal as opposed to simply thick? (Extra cals...) I have also added 2 ml of corn oil to Ellie's bottle for cals. That has seemed to help her a bit. In addition to that we make her formula 24 cal.
 
S

shimmereestar

New member
Have you thought about thickening with rice cereal as opposed to simply thick? (Extra cals...) I have also added 2 ml of corn oil to Ellie's bottle for cals. That has seemed to help her a bit. In addition to that we make her formula 24 cal.
 
S

shimmereestar

New member
Have you thought about thickening with rice cereal as opposed to simply thick? (Extra cals...) I have also added 2 ml of corn oil to Ellie's bottle for cals. That has seemed to help her a bit. In addition to that we make her formula 24 cal.
 
I

izemmom

New member
I really don't have any advice for you. I just wanted to let you know that you are not alone in feeling freaked out after talking to the dietician. We have always struggled with Emily's weight.

I wish I could remember what we did when she was as young as your daughter. I know we used a high calorie recepie with regular baby formula and we started solids really early. Like around 4 or 5 months. This also seemed to help with the reflux, oddly enough.

I was encouraged to see that you mentioned knowing that a g-tube isn't the end of the world. To me, it WAS the end of the world, or at least it felt like it. I'm so glad that you are more open to it than I was - it will make it easier if you have to do it. Emily was almost 2 when she got hers, so much bigger than your little one, but if she does need to do it, I don't think you need to worry about her being uncomfortable. My Emily is just a smily and silly as ever, and has few issues with her tube. In the end, I'm glad we did it.

I sincerely hope that you don't have to go that route this early on. I'm all for g-tubes in certain situations, but I dont' think you've exhausted all other possibilities.

I'm sure you'll get responses, and probably more useful than my ideas, but...

try a little sugar water on the nipple to get her to suck the bottle longer

go ahead and try some solids

ask about appetite stimulants (didn't work for us but some have success)

try giving the enzyme when she takes her break from the bottle. If she sucks for 15 minutes she'll be ok with the enzyme going in after the formula, the applesauce will kick start the urge to eat and she'll have better enzyme coverage for whatever she takes after that. (This is what we did...it's obviously not medically correct, but it worked better for us...)

And, remember, if she is gaining, she is gaining. Every baby, cf or not will gain in thier own time. I know exactly how hard it is to feel pressured by the docs and dieticians. Of course they want what's best for the baby. But, if she's gaining and happy then you are doing the best you can. You might need to be really forcefull about giving her more time before getting the tube.

Sorry this was so long!
 
I

izemmom

New member
I really don't have any advice for you. I just wanted to let you know that you are not alone in feeling freaked out after talking to the dietician. We have always struggled with Emily's weight.

I wish I could remember what we did when she was as young as your daughter. I know we used a high calorie recepie with regular baby formula and we started solids really early. Like around 4 or 5 months. This also seemed to help with the reflux, oddly enough.

I was encouraged to see that you mentioned knowing that a g-tube isn't the end of the world. To me, it WAS the end of the world, or at least it felt like it. I'm so glad that you are more open to it than I was - it will make it easier if you have to do it. Emily was almost 2 when she got hers, so much bigger than your little one, but if she does need to do it, I don't think you need to worry about her being uncomfortable. My Emily is just a smily and silly as ever, and has few issues with her tube. In the end, I'm glad we did it.

I sincerely hope that you don't have to go that route this early on. I'm all for g-tubes in certain situations, but I dont' think you've exhausted all other possibilities.

I'm sure you'll get responses, and probably more useful than my ideas, but...

try a little sugar water on the nipple to get her to suck the bottle longer

go ahead and try some solids

ask about appetite stimulants (didn't work for us but some have success)

try giving the enzyme when she takes her break from the bottle. If she sucks for 15 minutes she'll be ok with the enzyme going in after the formula, the applesauce will kick start the urge to eat and she'll have better enzyme coverage for whatever she takes after that. (This is what we did...it's obviously not medically correct, but it worked better for us...)

And, remember, if she is gaining, she is gaining. Every baby, cf or not will gain in thier own time. I know exactly how hard it is to feel pressured by the docs and dieticians. Of course they want what's best for the baby. But, if she's gaining and happy then you are doing the best you can. You might need to be really forcefull about giving her more time before getting the tube.

Sorry this was so long!
 
I

izemmom

New member
I really don't have any advice for you. I just wanted to let you know that you are not alone in feeling freaked out after talking to the dietician. We have always struggled with Emily's weight.

I wish I could remember what we did when she was as young as your daughter. I know we used a high calorie recepie with regular baby formula and we started solids really early. Like around 4 or 5 months. This also seemed to help with the reflux, oddly enough.

I was encouraged to see that you mentioned knowing that a g-tube isn't the end of the world. To me, it WAS the end of the world, or at least it felt like it. I'm so glad that you are more open to it than I was - it will make it easier if you have to do it. Emily was almost 2 when she got hers, so much bigger than your little one, but if she does need to do it, I don't think you need to worry about her being uncomfortable. My Emily is just a smily and silly as ever, and has few issues with her tube. In the end, I'm glad we did it.

I sincerely hope that you don't have to go that route this early on. I'm all for g-tubes in certain situations, but I dont' think you've exhausted all other possibilities.

I'm sure you'll get responses, and probably more useful than my ideas, but...

try a little sugar water on the nipple to get her to suck the bottle longer

go ahead and try some solids

ask about appetite stimulants (didn't work for us but some have success)

try giving the enzyme when she takes her break from the bottle. If she sucks for 15 minutes she'll be ok with the enzyme going in after the formula, the applesauce will kick start the urge to eat and she'll have better enzyme coverage for whatever she takes after that. (This is what we did...it's obviously not medically correct, but it worked better for us...)

And, remember, if she is gaining, she is gaining. Every baby, cf or not will gain in thier own time. I know exactly how hard it is to feel pressured by the docs and dieticians. Of course they want what's best for the baby. But, if she's gaining and happy then you are doing the best you can. You might need to be really forcefull about giving her more time before getting the tube.

Sorry this was so long!
 
I

izemmom

New member
I really don't have any advice for you. I just wanted to let you know that you are not alone in feeling freaked out after talking to the dietician. We have always struggled with Emily's weight.

I wish I could remember what we did when she was as young as your daughter. I know we used a high calorie recepie with regular baby formula and we started solids really early. Like around 4 or 5 months. This also seemed to help with the reflux, oddly enough.

I was encouraged to see that you mentioned knowing that a g-tube isn't the end of the world. To me, it WAS the end of the world, or at least it felt like it. I'm so glad that you are more open to it than I was - it will make it easier if you have to do it. Emily was almost 2 when she got hers, so much bigger than your little one, but if she does need to do it, I don't think you need to worry about her being uncomfortable. My Emily is just a smily and silly as ever, and has few issues with her tube. In the end, I'm glad we did it.

I sincerely hope that you don't have to go that route this early on. I'm all for g-tubes in certain situations, but I dont' think you've exhausted all other possibilities.

I'm sure you'll get responses, and probably more useful than my ideas, but...

try a little sugar water on the nipple to get her to suck the bottle longer

go ahead and try some solids

ask about appetite stimulants (didn't work for us but some have success)

try giving the enzyme when she takes her break from the bottle. If she sucks for 15 minutes she'll be ok with the enzyme going in after the formula, the applesauce will kick start the urge to eat and she'll have better enzyme coverage for whatever she takes after that. (This is what we did...it's obviously not medically correct, but it worked better for us...)

And, remember, if she is gaining, she is gaining. Every baby, cf or not will gain in thier own time. I know exactly how hard it is to feel pressured by the docs and dieticians. Of course they want what's best for the baby. But, if she's gaining and happy then you are doing the best you can. You might need to be really forcefull about giving her more time before getting the tube.

Sorry this was so long!
 
I

izemmom

New member
I really don't have any advice for you. I just wanted to let you know that you are not alone in feeling freaked out after talking to the dietician. We have always struggled with Emily's weight.
<br />
<br />I wish I could remember what we did when she was as young as your daughter. I know we used a high calorie recepie with regular baby formula and we started solids really early. Like around 4 or 5 months. This also seemed to help with the reflux, oddly enough.
<br />
<br />I was encouraged to see that you mentioned knowing that a g-tube isn't the end of the world. To me, it WAS the end of the world, or at least it felt like it. I'm so glad that you are more open to it than I was - it will make it easier if you have to do it. Emily was almost 2 when she got hers, so much bigger than your little one, but if she does need to do it, I don't think you need to worry about her being uncomfortable. My Emily is just a smily and silly as ever, and has few issues with her tube. In the end, I'm glad we did it.
<br />
<br /> I sincerely hope that you don't have to go that route this early on. I'm all for g-tubes in certain situations, but I dont' think you've exhausted all other possibilities.
<br />
<br />I'm sure you'll get responses, and probably more useful than my ideas, but...
<br />
<br />try a little sugar water on the nipple to get her to suck the bottle longer
<br />
<br />go ahead and try some solids
<br />
<br />ask about appetite stimulants (didn't work for us but some have success)
<br />
<br />try giving the enzyme when she takes her break from the bottle. If she sucks for 15 minutes she'll be ok with the enzyme going in after the formula, the applesauce will kick start the urge to eat and she'll have better enzyme coverage for whatever she takes after that. (This is what we did...it's obviously not medically correct, but it worked better for us...)
<br />
<br />And, remember, if she is gaining, she is gaining. Every baby, cf or not will gain in thier own time. I know exactly how hard it is to feel pressured by the docs and dieticians. Of course they want what's best for the baby. But, if she's gaining and happy then you are doing the best you can. You might need to be really forcefull about giving her more time before getting the tube.
<br />
<br />Sorry this was so long!
<br />
 
C

ConnorsMom

New member
I don't have any different advice than you've gotten, but I wanted to say, that if your darling baby is gaining, there is no reason not to hold off on the g-tube. The CF team we had when Connor was that age, was always happy as long as he was gaining. He too was always in the 25th precentile. I know research has changed, and they are pushing weight. Just follow your gut. You have the right attitude about the g-tube. Rest asured that the g-tube doesn't really slow Connor down at all.
Good luck to you!
 
C

ConnorsMom

New member
I don't have any different advice than you've gotten, but I wanted to say, that if your darling baby is gaining, there is no reason not to hold off on the g-tube. The CF team we had when Connor was that age, was always happy as long as he was gaining. He too was always in the 25th precentile. I know research has changed, and they are pushing weight. Just follow your gut. You have the right attitude about the g-tube. Rest asured that the g-tube doesn't really slow Connor down at all.
Good luck to you!
 
C

ConnorsMom

New member
I don't have any different advice than you've gotten, but I wanted to say, that if your darling baby is gaining, there is no reason not to hold off on the g-tube. The CF team we had when Connor was that age, was always happy as long as he was gaining. He too was always in the 25th precentile. I know research has changed, and they are pushing weight. Just follow your gut. You have the right attitude about the g-tube. Rest asured that the g-tube doesn't really slow Connor down at all.
Good luck to you!
 
C

ConnorsMom

New member
I don't have any different advice than you've gotten, but I wanted to say, that if your darling baby is gaining, there is no reason not to hold off on the g-tube. The CF team we had when Connor was that age, was always happy as long as he was gaining. He too was always in the 25th precentile. I know research has changed, and they are pushing weight. Just follow your gut. You have the right attitude about the g-tube. Rest asured that the g-tube doesn't really slow Connor down at all.
Good luck to you!
 
C

ConnorsMom

New member
I don't have any different advice than you've gotten, but I wanted to say, that if your darling baby is gaining, there is no reason not to hold off on the g-tube. The CF team we had when Connor was that age, was always happy as long as he was gaining. He too was always in the 25th precentile. I know research has changed, and they are pushing weight. Just follow your gut. You have the right attitude about the g-tube. Rest asured that the g-tube doesn't really slow Connor down at all.
<br />Good luck to you!
 
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