ready to fall apart & need feedback

B

biz

New member
my son will be 2 in december, and has gained less then a pound total in the past 4 months. when we met with the GI back in summer she ran a series of blood test and his Zinc was very low. so naturaly we started that and ill tell you it does remarkable things. he finally had an appetite a want to eat a whole meal and want to eat again at the next meal. i was so happy, but he just isnt gaining.

you know i like his nutritionist and she is very positive and has all the suggestions and answers i could ask for, but sometimes i feel like screamin at her "he's just not gaining, lady" no matter what i pump into his little body and its really scaring me. the next test they are talking about is motility testing. to see if the food is moving out of his belly the way or speed it should. whatever that one means. but the way i see that one is if it isnt moving out the right "speed" then he would still feel full and not want to eat. and that hasnt been the case since we started the Zinc.
so naturaly my rant here is if there is any suggestions from you all out there, i would so love it. and im starting to question myself. am i doing all that i can? should i be feeding him like 6 or seven times a day? i feel like no matter what i give him he just wont gain weigh. should we get a g-tube? should i move on with the more testing they want to do? im crying here at my computer, i hate that there isnt an exact answer, i just need something to see him gain so i can get us all thru this slump.
thanks everyone!
-----------------------------------------------------------------------------------
Elizabeth: mama to Aidan 2 dx@ birth
 
B

biz

New member
my son will be 2 in december, and has gained less then a pound total in the past 4 months. when we met with the GI back in summer she ran a series of blood test and his Zinc was very low. so naturaly we started that and ill tell you it does remarkable things. he finally had an appetite a want to eat a whole meal and want to eat again at the next meal. i was so happy, but he just isnt gaining.

you know i like his nutritionist and she is very positive and has all the suggestions and answers i could ask for, but sometimes i feel like screamin at her "he's just not gaining, lady" no matter what i pump into his little body and its really scaring me. the next test they are talking about is motility testing. to see if the food is moving out of his belly the way or speed it should. whatever that one means. but the way i see that one is if it isnt moving out the right "speed" then he would still feel full and not want to eat. and that hasnt been the case since we started the Zinc.
so naturaly my rant here is if there is any suggestions from you all out there, i would so love it. and im starting to question myself. am i doing all that i can? should i be feeding him like 6 or seven times a day? i feel like no matter what i give him he just wont gain weigh. should we get a g-tube? should i move on with the more testing they want to do? im crying here at my computer, i hate that there isnt an exact answer, i just need something to see him gain so i can get us all thru this slump.
thanks everyone!
-----------------------------------------------------------------------------------
Elizabeth: mama to Aidan 2 dx@ birth
 
B

biz

New member
my son will be 2 in december, and has gained less then a pound total in the past 4 months. when we met with the GI back in summer she ran a series of blood test and his Zinc was very low. so naturaly we started that and ill tell you it does remarkable things. he finally had an appetite a want to eat a whole meal and want to eat again at the next meal. i was so happy, but he just isnt gaining.

you know i like his nutritionist and she is very positive and has all the suggestions and answers i could ask for, but sometimes i feel like screamin at her "he's just not gaining, lady" no matter what i pump into his little body and its really scaring me. the next test they are talking about is motility testing. to see if the food is moving out of his belly the way or speed it should. whatever that one means. but the way i see that one is if it isnt moving out the right "speed" then he would still feel full and not want to eat. and that hasnt been the case since we started the Zinc.
so naturaly my rant here is if there is any suggestions from you all out there, i would so love it. and im starting to question myself. am i doing all that i can? should i be feeding him like 6 or seven times a day? i feel like no matter what i give him he just wont gain weigh. should we get a g-tube? should i move on with the more testing they want to do? im crying here at my computer, i hate that there isnt an exact answer, i just need something to see him gain so i can get us all thru this slump.
thanks everyone!
-----------------------------------------------------------------------------------
Elizabeth: mama to Aidan 2 dx@ birth
 
B

biz

New member
my son will be 2 in december, and has gained less then a pound total in the past 4 months. when we met with the GI back in summer she ran a series of blood test and his Zinc was very low. so naturaly we started that and ill tell you it does remarkable things. he finally had an appetite a want to eat a whole meal and want to eat again at the next meal. i was so happy, but he just isnt gaining.

you know i like his nutritionist and she is very positive and has all the suggestions and answers i could ask for, but sometimes i feel like screamin at her "he's just not gaining, lady" no matter what i pump into his little body and its really scaring me. the next test they are talking about is motility testing. to see if the food is moving out of his belly the way or speed it should. whatever that one means. but the way i see that one is if it isnt moving out the right "speed" then he would still feel full and not want to eat. and that hasnt been the case since we started the Zinc.
so naturaly my rant here is if there is any suggestions from you all out there, i would so love it. and im starting to question myself. am i doing all that i can? should i be feeding him like 6 or seven times a day? i feel like no matter what i give him he just wont gain weigh. should we get a g-tube? should i move on with the more testing they want to do? im crying here at my computer, i hate that there isnt an exact answer, i just need something to see him gain so i can get us all thru this slump.
thanks everyone!
-----------------------------------------------------------------------------------
Elizabeth: mama to Aidan 2 dx@ birth
 
B

biz

New member
my son will be 2 in december, and has gained less then a pound total in the past 4 months. when we met with the GI back in summer she ran a series of blood test and his Zinc was very low. so naturaly we started that and ill tell you it does remarkable things. he finally had an appetite a want to eat a whole meal and want to eat again at the next meal. i was so happy, but he just isnt gaining.

you know i like his nutritionist and she is very positive and has all the suggestions and answers i could ask for, but sometimes i feel like screamin at her "he's just not gaining, lady" no matter what i pump into his little body and its really scaring me. the next test they are talking about is motility testing. to see if the food is moving out of his belly the way or speed it should. whatever that one means. but the way i see that one is if it isnt moving out the right "speed" then he would still feel full and not want to eat. and that hasnt been the case since we started the Zinc.
so naturaly my rant here is if there is any suggestions from you all out there, i would so love it. and im starting to question myself. am i doing all that i can? should i be feeding him like 6 or seven times a day? i feel like no matter what i give him he just wont gain weigh. should we get a g-tube? should i move on with the more testing they want to do? im crying here at my computer, i hate that there isnt an exact answer, i just need something to see him gain so i can get us all thru this slump.
thanks everyone!
-----------------------------------------------------------------------------------
Elizabeth: mama to Aidan 2 dx@ birth
 
J

JazzysMom

New member
What meds for digestion is he on? Some type of enzyme? Something for acid like Prevacid?

Has he been tested for diabetes?

The fact that he has an appetite is great. Forcing him to eat isnt an issue. It seems getting his body to get the most from what he eats is.

Please also remember that there will be times where it seems you are banging your head against the wall to get things to move & BAM they finally do, but not before you gave yourself a headache.

HUGS!
 
J

JazzysMom

New member
What meds for digestion is he on? Some type of enzyme? Something for acid like Prevacid?

Has he been tested for diabetes?

The fact that he has an appetite is great. Forcing him to eat isnt an issue. It seems getting his body to get the most from what he eats is.

Please also remember that there will be times where it seems you are banging your head against the wall to get things to move & BAM they finally do, but not before you gave yourself a headache.

HUGS!
 
J

JazzysMom

New member
What meds for digestion is he on? Some type of enzyme? Something for acid like Prevacid?

Has he been tested for diabetes?

The fact that he has an appetite is great. Forcing him to eat isnt an issue. It seems getting his body to get the most from what he eats is.

Please also remember that there will be times where it seems you are banging your head against the wall to get things to move & BAM they finally do, but not before you gave yourself a headache.

HUGS!
 
J

JazzysMom

New member
What meds for digestion is he on? Some type of enzyme? Something for acid like Prevacid?

Has he been tested for diabetes?

The fact that he has an appetite is great. Forcing him to eat isnt an issue. It seems getting his body to get the most from what he eats is.

Please also remember that there will be times where it seems you are banging your head against the wall to get things to move & BAM they finally do, but not before you gave yourself a headache.

HUGS!
 
J

JazzysMom

New member
What meds for digestion is he on? Some type of enzyme? Something for acid like Prevacid?

Has he been tested for diabetes?

The fact that he has an appetite is great. Forcing him to eat isnt an issue. It seems getting his body to get the most from what he eats is.

Please also remember that there will be times where it seems you are banging your head against the wall to get things to move & BAM they finally do, but not before you gave yourself a headache.

HUGS!
 
M

Mommafirst

Guest
Hi Elizabeth!!

You and I couldn't be in more of the same place. My daughter will be two in January. She was born pancreatic sufficient, but in the last few months her fecal fat tests are showing that she is becoming insufficient. So she takes lots of enzymes, eats three meals, three snacks, and three bottles of pediasure every day. Everything she eats is high cal, high fat and she isn't gaining a bit. Since May she has gained a whopping 7 ounces!!!! We are freaked out too!! And I feel so frustrated, just like you.

First of all, some doctors don't like to go outside of the CF realm, hoping that what is wrong is all just one thing. But the truth is, lots of people with CF can have other issues as well. Weston (WEstonsmom) on this board and another CF toddler I know both have casein allergies that was keeping them from gaining, now that they are off milk, they both are doing much better.

We just had Celiac's testing done on my daughter. We were hoping to rule it out, but turns out she has the gene for it. Now they are going to do an intestinal biopsy to see if she has celiac's too. Apparently there is a higher percentage of celiac's in the CF population than in the normal population. Dont' know why, maybe the gene's are related.

Since we are having the biopsy done, our pulm also is going to do a bronch. He is concerned that maybe she is culturing something that isn't coming up on the throat culture. He said that sometimes CF bugs can show no other symptom than poor weight gain. At least for now.

I just wanted you to know that I know you are doing everything you can to pack on the pounds for him. Sometimes there is more going on than just what's going into his mouth. Keep pushing for answers, as I am doing, eventually we will get answers and help our kiddos.

In case you haven't had these food suggestions, I'll share what I do:
Use duocal in everything I cook for her
butter and parmasean cheese in her soups
heavy cream gets added to her pediasure
she loves Marie Callendar pot pies -- those things are very very fattening

Good luck
 
M

Mommafirst

Guest
Hi Elizabeth!!

You and I couldn't be in more of the same place. My daughter will be two in January. She was born pancreatic sufficient, but in the last few months her fecal fat tests are showing that she is becoming insufficient. So she takes lots of enzymes, eats three meals, three snacks, and three bottles of pediasure every day. Everything she eats is high cal, high fat and she isn't gaining a bit. Since May she has gained a whopping 7 ounces!!!! We are freaked out too!! And I feel so frustrated, just like you.

First of all, some doctors don't like to go outside of the CF realm, hoping that what is wrong is all just one thing. But the truth is, lots of people with CF can have other issues as well. Weston (WEstonsmom) on this board and another CF toddler I know both have casein allergies that was keeping them from gaining, now that they are off milk, they both are doing much better.

We just had Celiac's testing done on my daughter. We were hoping to rule it out, but turns out she has the gene for it. Now they are going to do an intestinal biopsy to see if she has celiac's too. Apparently there is a higher percentage of celiac's in the CF population than in the normal population. Dont' know why, maybe the gene's are related.

Since we are having the biopsy done, our pulm also is going to do a bronch. He is concerned that maybe she is culturing something that isn't coming up on the throat culture. He said that sometimes CF bugs can show no other symptom than poor weight gain. At least for now.

I just wanted you to know that I know you are doing everything you can to pack on the pounds for him. Sometimes there is more going on than just what's going into his mouth. Keep pushing for answers, as I am doing, eventually we will get answers and help our kiddos.

In case you haven't had these food suggestions, I'll share what I do:
Use duocal in everything I cook for her
butter and parmasean cheese in her soups
heavy cream gets added to her pediasure
she loves Marie Callendar pot pies -- those things are very very fattening

Good luck
 
M

Mommafirst

Guest
Hi Elizabeth!!

You and I couldn't be in more of the same place. My daughter will be two in January. She was born pancreatic sufficient, but in the last few months her fecal fat tests are showing that she is becoming insufficient. So she takes lots of enzymes, eats three meals, three snacks, and three bottles of pediasure every day. Everything she eats is high cal, high fat and she isn't gaining a bit. Since May she has gained a whopping 7 ounces!!!! We are freaked out too!! And I feel so frustrated, just like you.

First of all, some doctors don't like to go outside of the CF realm, hoping that what is wrong is all just one thing. But the truth is, lots of people with CF can have other issues as well. Weston (WEstonsmom) on this board and another CF toddler I know both have casein allergies that was keeping them from gaining, now that they are off milk, they both are doing much better.

We just had Celiac's testing done on my daughter. We were hoping to rule it out, but turns out she has the gene for it. Now they are going to do an intestinal biopsy to see if she has celiac's too. Apparently there is a higher percentage of celiac's in the CF population than in the normal population. Dont' know why, maybe the gene's are related.

Since we are having the biopsy done, our pulm also is going to do a bronch. He is concerned that maybe she is culturing something that isn't coming up on the throat culture. He said that sometimes CF bugs can show no other symptom than poor weight gain. At least for now.

I just wanted you to know that I know you are doing everything you can to pack on the pounds for him. Sometimes there is more going on than just what's going into his mouth. Keep pushing for answers, as I am doing, eventually we will get answers and help our kiddos.

In case you haven't had these food suggestions, I'll share what I do:
Use duocal in everything I cook for her
butter and parmasean cheese in her soups
heavy cream gets added to her pediasure
she loves Marie Callendar pot pies -- those things are very very fattening

Good luck
 
M

Mommafirst

Guest
Hi Elizabeth!!

You and I couldn't be in more of the same place. My daughter will be two in January. She was born pancreatic sufficient, but in the last few months her fecal fat tests are showing that she is becoming insufficient. So she takes lots of enzymes, eats three meals, three snacks, and three bottles of pediasure every day. Everything she eats is high cal, high fat and she isn't gaining a bit. Since May she has gained a whopping 7 ounces!!!! We are freaked out too!! And I feel so frustrated, just like you.

First of all, some doctors don't like to go outside of the CF realm, hoping that what is wrong is all just one thing. But the truth is, lots of people with CF can have other issues as well. Weston (WEstonsmom) on this board and another CF toddler I know both have casein allergies that was keeping them from gaining, now that they are off milk, they both are doing much better.

We just had Celiac's testing done on my daughter. We were hoping to rule it out, but turns out she has the gene for it. Now they are going to do an intestinal biopsy to see if she has celiac's too. Apparently there is a higher percentage of celiac's in the CF population than in the normal population. Dont' know why, maybe the gene's are related.

Since we are having the biopsy done, our pulm also is going to do a bronch. He is concerned that maybe she is culturing something that isn't coming up on the throat culture. He said that sometimes CF bugs can show no other symptom than poor weight gain. At least for now.

I just wanted you to know that I know you are doing everything you can to pack on the pounds for him. Sometimes there is more going on than just what's going into his mouth. Keep pushing for answers, as I am doing, eventually we will get answers and help our kiddos.

In case you haven't had these food suggestions, I'll share what I do:
Use duocal in everything I cook for her
butter and parmasean cheese in her soups
heavy cream gets added to her pediasure
she loves Marie Callendar pot pies -- those things are very very fattening

Good luck
 
M

Mommafirst

Guest
Hi Elizabeth!!

You and I couldn't be in more of the same place. My daughter will be two in January. She was born pancreatic sufficient, but in the last few months her fecal fat tests are showing that she is becoming insufficient. So she takes lots of enzymes, eats three meals, three snacks, and three bottles of pediasure every day. Everything she eats is high cal, high fat and she isn't gaining a bit. Since May she has gained a whopping 7 ounces!!!! We are freaked out too!! And I feel so frustrated, just like you.

First of all, some doctors don't like to go outside of the CF realm, hoping that what is wrong is all just one thing. But the truth is, lots of people with CF can have other issues as well. Weston (WEstonsmom) on this board and another CF toddler I know both have casein allergies that was keeping them from gaining, now that they are off milk, they both are doing much better.

We just had Celiac's testing done on my daughter. We were hoping to rule it out, but turns out she has the gene for it. Now they are going to do an intestinal biopsy to see if she has celiac's too. Apparently there is a higher percentage of celiac's in the CF population than in the normal population. Dont' know why, maybe the gene's are related.

Since we are having the biopsy done, our pulm also is going to do a bronch. He is concerned that maybe she is culturing something that isn't coming up on the throat culture. He said that sometimes CF bugs can show no other symptom than poor weight gain. At least for now.

I just wanted you to know that I know you are doing everything you can to pack on the pounds for him. Sometimes there is more going on than just what's going into his mouth. Keep pushing for answers, as I am doing, eventually we will get answers and help our kiddos.

In case you haven't had these food suggestions, I'll share what I do:
Use duocal in everything I cook for her
butter and parmasean cheese in her soups
heavy cream gets added to her pediasure
she loves Marie Callendar pot pies -- those things are very very fattening

Good luck
 
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