4 month w/ CF no symptoms

Sofiaeden · Apr 10, 2009

My DD was diagnosed with CF at 6 weeks (right now they are calling it CFTR Metabolic Disorder)and then at 3 months genetic testing confirmed her diagnosis. All tests so far including the sweat test have come back negative/normal and from the stool sample they took she is not pancreatic insufficient. I am breastfeeding and she kind of nibbles all day, doesn't have a big appetite. She has a bowel movement every couple of days and it's not runny or oily. The only thing they are concerned about is her height to weight ratio and they feel that a "trial" of enzymes would be appropriate. She is very tall and lean (like her mom). I was always under weight for my height. She's in the 65th percentile for height and 20th percentile for weight. We have contacted other specialists and some say it won't hurt to put her on enzymes and others say it's not necessary. As a parent, I would like to wait until her next sweat test at 6 months or even wait until she turns 1 year old to do any "trials" unless something more definitive appears. Anyone else find themselves in this predicament? Any feedback would be appreciated.

Thanks, Sofia's Mom

Sofiaeden · Apr 10, 2009

My DD was diagnosed with CF at 6 weeks (right now they are calling it CFTR Metabolic Disorder)and then at 3 months genetic testing confirmed her diagnosis. All tests so far including the sweat test have come back negative/normal and from the stool sample they took she is not pancreatic insufficient. I am breastfeeding and she kind of nibbles all day, doesn't have a big appetite. She has a bowel movement every couple of days and it's not runny or oily. The only thing they are concerned about is her height to weight ratio and they feel that a "trial" of enzymes would be appropriate. She is very tall and lean (like her mom). I was always under weight for my height. She's in the 65th percentile for height and 20th percentile for weight. We have contacted other specialists and some say it won't hurt to put her on enzymes and others say it's not necessary. As a parent, I would like to wait until her next sweat test at 6 months or even wait until she turns 1 year old to do any "trials" unless something more definitive appears. Anyone else find themselves in this predicament? Any feedback would be appreciated.

Thanks, Sofia's Mom

Sofiaeden · Apr 10, 2009

My DD was diagnosed with CF at 6 weeks (right now they are calling it CFTR Metabolic Disorder)and then at 3 months genetic testing confirmed her diagnosis. All tests so far including the sweat test have come back negative/normal and from the stool sample they took she is not pancreatic insufficient. I am breastfeeding and she kind of nibbles all day, doesn't have a big appetite. She has a bowel movement every couple of days and it's not runny or oily. The only thing they are concerned about is her height to weight ratio and they feel that a "trial" of enzymes would be appropriate. She is very tall and lean (like her mom). I was always under weight for my height. She's in the 65th percentile for height and 20th percentile for weight. We have contacted other specialists and some say it won't hurt to put her on enzymes and others say it's not necessary. As a parent, I would like to wait until her next sweat test at 6 months or even wait until she turns 1 year old to do any "trials" unless something more definitive appears. Anyone else find themselves in this predicament? Any feedback would be appreciated.

Thanks, Sofia's Mom

Sofiaeden · Apr 10, 2009

My DD was diagnosed with CF at 6 weeks (right now they are calling it CFTR Metabolic Disorder)and then at 3 months genetic testing confirmed her diagnosis. All tests so far including the sweat test have come back negative/normal and from the stool sample they took she is not pancreatic insufficient. I am breastfeeding and she kind of nibbles all day, doesn't have a big appetite. She has a bowel movement every couple of days and it's not runny or oily. The only thing they are concerned about is her height to weight ratio and they feel that a "trial" of enzymes would be appropriate. She is very tall and lean (like her mom). I was always under weight for my height. She's in the 65th percentile for height and 20th percentile for weight. We have contacted other specialists and some say it won't hurt to put her on enzymes and others say it's not necessary. As a parent, I would like to wait until her next sweat test at 6 months or even wait until she turns 1 year old to do any "trials" unless something more definitive appears. Anyone else find themselves in this predicament? Any feedback would be appreciated.

Thanks, Sofia's Mom

Sofiaeden · Apr 10, 2009

My DD was diagnosed with CF at 6 weeks (right now they are calling it CFTR Metabolic Disorder)and then at 3 months genetic testing confirmed her diagnosis. All tests so far including the sweat test have come back negative/normal and from the stool sample they took she is not pancreatic insufficient. I am breastfeeding and she kind of nibbles all day, doesn't have a big appetite. She has a bowel movement every couple of days and it's not runny or oily. The only thing they are concerned about is her height to weight ratio and they feel that a "trial" of enzymes would be appropriate. She is very tall and lean (like her mom). I was always under weight for my height. She's in the 65th percentile for height and 20th percentile for weight. We have contacted other specialists and some say it won't hurt to put her on enzymes and others say it's not necessary. As a parent, I would like to wait until her next sweat test at 6 months or even wait until she turns 1 year old to do any "trials" unless something more definitive appears. Anyone else find themselves in this predicament? Any feedback would be appreciated.
 
 Thanks, Sofia's Mom

tabbycat821 · Apr 10, 2009

Or son is 9 weeks old and was diagnosed through the newborn screen and confirmed at 2 weeks old. At the time it was confirmed that he had cf the Dr. put him on enzymes even though the tests hadn't come back to show if he was pancrease insufficient but they told us that it wouldn't hurt to have him on them and if it turned out he needed them he was on them already. This also helpedthem to know if they were working by if his stool changed. I'm rather new to everything but I thought I'd share our experience.

tabbycat821 · Apr 10, 2009

Or son is 9 weeks old and was diagnosed through the newborn screen and confirmed at 2 weeks old. At the time it was confirmed that he had cf the Dr. put him on enzymes even though the tests hadn't come back to show if he was pancrease insufficient but they told us that it wouldn't hurt to have him on them and if it turned out he needed them he was on them already. This also helpedthem to know if they were working by if his stool changed. I'm rather new to everything but I thought I'd share our experience.

tabbycat821 · Apr 10, 2009

Or son is 9 weeks old and was diagnosed through the newborn screen and confirmed at 2 weeks old. At the time it was confirmed that he had cf the Dr. put him on enzymes even though the tests hadn't come back to show if he was pancrease insufficient but they told us that it wouldn't hurt to have him on them and if it turned out he needed them he was on them already. This also helpedthem to know if they were working by if his stool changed. I'm rather new to everything but I thought I'd share our experience.

tabbycat821 · Apr 10, 2009

Or son is 9 weeks old and was diagnosed through the newborn screen and confirmed at 2 weeks old. At the time it was confirmed that he had cf the Dr. put him on enzymes even though the tests hadn't come back to show if he was pancrease insufficient but they told us that it wouldn't hurt to have him on them and if it turned out he needed them he was on them already. This also helpedthem to know if they were working by if his stool changed. I'm rather new to everything but I thought I'd share our experience.

tabbycat821 · Apr 10, 2009

Or son is 9 weeks old and was diagnosed through the newborn screen and confirmed at 2 weeks old. At the time it was confirmed that he had cf the Dr. put him on enzymes even though the tests hadn't come back to show if he was pancrease insufficient but they told us that it wouldn't hurt to have him on them and if it turned out he needed them he was on them already. This also helpedthem to know if they were working by if his stool changed. I'm rather new to everything but I thought I'd share our experience.

Kimber1 · Apr 11, 2009

I have a four month girl diagnosed at three weeks. Sweat test confirmed diagnoses. She had only slight pancreatic insuffiency when diagnosed but they started her on enzymes anyway. I have found since starting them she has been a lot happier with less tummy pain and has even been sleeping better. My opinion is take the advice of a specialist you trust and your gut feeling as a mother most of the time we are right when it comes to our kids.

Kimber1 · Apr 11, 2009

I have a four month girl diagnosed at three weeks. Sweat test confirmed diagnoses. She had only slight pancreatic insuffiency when diagnosed but they started her on enzymes anyway. I have found since starting them she has been a lot happier with less tummy pain and has even been sleeping better. My opinion is take the advice of a specialist you trust and your gut feeling as a mother most of the time we are right when it comes to our kids.

Kimber1 · Apr 11, 2009

I have a four month girl diagnosed at three weeks. Sweat test confirmed diagnoses. She had only slight pancreatic insuffiency when diagnosed but they started her on enzymes anyway. I have found since starting them she has been a lot happier with less tummy pain and has even been sleeping better. My opinion is take the advice of a specialist you trust and your gut feeling as a mother most of the time we are right when it comes to our kids.

Kimber1 · Apr 11, 2009

I have a four month girl diagnosed at three weeks. Sweat test confirmed diagnoses. She had only slight pancreatic insuffiency when diagnosed but they started her on enzymes anyway. I have found since starting them she has been a lot happier with less tummy pain and has even been sleeping better. My opinion is take the advice of a specialist you trust and your gut feeling as a mother most of the time we are right when it comes to our kids.

Kimber1 · Apr 11, 2009

I have a four month girl diagnosed at three weeks. Sweat test confirmed diagnoses. She had only slight pancreatic insuffiency when diagnosed but they started her on enzymes anyway. I have found since starting them she has been a lot happier with less tummy pain and has even been sleeping better. My opinion is take the advice of a specialist you trust and your gut feeling as a mother most of the time we are right when it comes to our kids.

Mommafirst · Apr 11, 2009

Hi Sofia's Mom!

I'm sorry about the diagnosis and I totally understand the confusion of the its-negative-and-yet-positive. I'm going to share some of Alyssa's story, because it may help with your decision. I know you are very new to this, and I don't mean to scare you. Every CF kid is different, even siblings with the same CF genetic makeup can have a very different progression of this disease.

My daughter is three years old and we have been where you are. She had a borderline sweat test and it took genetics to find the rare CF mutation she has. She is pancreatic sufficient, even though she was born with a meconium plug. Her biggest CF issue has been weight. We didn't start enzymes right away, but somewhere near her first birthday (10 months I think) they started to realize that her weight was way too low for her height.

When they encouraged us to try the enzymes, we were hesitant like you. WE kept arguing that her non-CF genetics were causing this. My 5.5 year old son is only 35 lbs, my husband was a tiny kid that had to be fed high fat foods too. When we started the enzymes we were not consistent with them, because it all seemed ridiculous. Her poop was not oily or greasy, she had no CF symptoms at all.

AT 14 months, Alyssa had her first in-patient stay, due to a combination of dehydration and cough. It was at this point we realized that CF was CF and if we wanted to fight it and keep her as healthy as possible, we'd need to try everything the doctors asked. We made a more concerted effort on the ezymes.

6 months later her weight was still really bad, even with a good effort on the enzymes. AFter ruling out a number of issues, we were broached on the idea of giving her a feeding tube to help her gain. It took us a year of going back and forth, and anguishing before we finally consented this past November to have one placed. She had fallen off the weight chart for BMI and everything we read showed a direct correlation between maintaining lung health in CF and keeping up the weight.

Hang in there. Know that I understand how tough and emotional the diagnosis time is. Also know that in the big CF scheme of things, these enzymes are no big deal -- and if they help they can really make a difference, and if they don't you can always walk away from them. (((HUGS)))

Mommafirst · Apr 11, 2009

Hi Sofia's Mom!

I'm sorry about the diagnosis and I totally understand the confusion of the its-negative-and-yet-positive. I'm going to share some of Alyssa's story, because it may help with your decision. I know you are very new to this, and I don't mean to scare you. Every CF kid is different, even siblings with the same CF genetic makeup can have a very different progression of this disease.

My daughter is three years old and we have been where you are. She had a borderline sweat test and it took genetics to find the rare CF mutation she has. She is pancreatic sufficient, even though she was born with a meconium plug. Her biggest CF issue has been weight. We didn't start enzymes right away, but somewhere near her first birthday (10 months I think) they started to realize that her weight was way too low for her height.

When they encouraged us to try the enzymes, we were hesitant like you. WE kept arguing that her non-CF genetics were causing this. My 5.5 year old son is only 35 lbs, my husband was a tiny kid that had to be fed high fat foods too. When we started the enzymes we were not consistent with them, because it all seemed ridiculous. Her poop was not oily or greasy, she had no CF symptoms at all.

AT 14 months, Alyssa had her first in-patient stay, due to a combination of dehydration and cough. It was at this point we realized that CF was CF and if we wanted to fight it and keep her as healthy as possible, we'd need to try everything the doctors asked. We made a more concerted effort on the ezymes.

6 months later her weight was still really bad, even with a good effort on the enzymes. AFter ruling out a number of issues, we were broached on the idea of giving her a feeding tube to help her gain. It took us a year of going back and forth, and anguishing before we finally consented this past November to have one placed. She had fallen off the weight chart for BMI and everything we read showed a direct correlation between maintaining lung health in CF and keeping up the weight.

Hang in there. Know that I understand how tough and emotional the diagnosis time is. Also know that in the big CF scheme of things, these enzymes are no big deal -- and if they help they can really make a difference, and if they don't you can always walk away from them. (((HUGS)))

Mommafirst · Apr 11, 2009

Hi Sofia's Mom!

I'm sorry about the diagnosis and I totally understand the confusion of the its-negative-and-yet-positive. I'm going to share some of Alyssa's story, because it may help with your decision. I know you are very new to this, and I don't mean to scare you. Every CF kid is different, even siblings with the same CF genetic makeup can have a very different progression of this disease.

My daughter is three years old and we have been where you are. She had a borderline sweat test and it took genetics to find the rare CF mutation she has. She is pancreatic sufficient, even though she was born with a meconium plug. Her biggest CF issue has been weight. We didn't start enzymes right away, but somewhere near her first birthday (10 months I think) they started to realize that her weight was way too low for her height.

When they encouraged us to try the enzymes, we were hesitant like you. WE kept arguing that her non-CF genetics were causing this. My 5.5 year old son is only 35 lbs, my husband was a tiny kid that had to be fed high fat foods too. When we started the enzymes we were not consistent with them, because it all seemed ridiculous. Her poop was not oily or greasy, she had no CF symptoms at all.

AT 14 months, Alyssa had her first in-patient stay, due to a combination of dehydration and cough. It was at this point we realized that CF was CF and if we wanted to fight it and keep her as healthy as possible, we'd need to try everything the doctors asked. We made a more concerted effort on the ezymes.

6 months later her weight was still really bad, even with a good effort on the enzymes. AFter ruling out a number of issues, we were broached on the idea of giving her a feeding tube to help her gain. It took us a year of going back and forth, and anguishing before we finally consented this past November to have one placed. She had fallen off the weight chart for BMI and everything we read showed a direct correlation between maintaining lung health in CF and keeping up the weight.

Hang in there. Know that I understand how tough and emotional the diagnosis time is. Also know that in the big CF scheme of things, these enzymes are no big deal -- and if they help they can really make a difference, and if they don't you can always walk away from them. (((HUGS)))

Mommafirst · Apr 11, 2009

Hi Sofia's Mom!

I'm sorry about the diagnosis and I totally understand the confusion of the its-negative-and-yet-positive. I'm going to share some of Alyssa's story, because it may help with your decision. I know you are very new to this, and I don't mean to scare you. Every CF kid is different, even siblings with the same CF genetic makeup can have a very different progression of this disease.

My daughter is three years old and we have been where you are. She had a borderline sweat test and it took genetics to find the rare CF mutation she has. She is pancreatic sufficient, even though she was born with a meconium plug. Her biggest CF issue has been weight. We didn't start enzymes right away, but somewhere near her first birthday (10 months I think) they started to realize that her weight was way too low for her height.

When they encouraged us to try the enzymes, we were hesitant like you. WE kept arguing that her non-CF genetics were causing this. My 5.5 year old son is only 35 lbs, my husband was a tiny kid that had to be fed high fat foods too. When we started the enzymes we were not consistent with them, because it all seemed ridiculous. Her poop was not oily or greasy, she had no CF symptoms at all.

AT 14 months, Alyssa had her first in-patient stay, due to a combination of dehydration and cough. It was at this point we realized that CF was CF and if we wanted to fight it and keep her as healthy as possible, we'd need to try everything the doctors asked. We made a more concerted effort on the ezymes.

6 months later her weight was still really bad, even with a good effort on the enzymes. AFter ruling out a number of issues, we were broached on the idea of giving her a feeding tube to help her gain. It took us a year of going back and forth, and anguishing before we finally consented this past November to have one placed. She had fallen off the weight chart for BMI and everything we read showed a direct correlation between maintaining lung health in CF and keeping up the weight.

Hang in there. Know that I understand how tough and emotional the diagnosis time is. Also know that in the big CF scheme of things, these enzymes are no big deal -- and if they help they can really make a difference, and if they don't you can always walk away from them. (((HUGS)))

Mommafirst · Apr 11, 2009

Hi Sofia's Mom!
 
 I'm sorry about the diagnosis and I totally understand the confusion of the its-negative-and-yet-positive. I'm going to share some of Alyssa's story, because it may help with your decision. I know you are very new to this, and I don't mean to scare you. Every CF kid is different, even siblings with the same CF genetic makeup can have a very different progression of this disease.
 
 My daughter is three years old and we have been where you are. She had a borderline sweat test and it took genetics to find the rare CF mutation she has. She is pancreatic sufficient, even though she was born with a meconium plug. Her biggest CF issue has been weight. We didn't start enzymes right away, but somewhere near her first birthday (10 months I think) they started to realize that her weight was way too low for her height.
 
 When they encouraged us to try the enzymes, we were hesitant like you. WE kept arguing that her non-CF genetics were causing this. My 5.5 year old son is only 35 lbs, my husband was a tiny kid that had to be fed high fat foods too. When we started the enzymes we were not consistent with them, because it all seemed ridiculous. Her poop was not oily or greasy, she had no CF symptoms at all.
 
 AT 14 months, Alyssa had her first in-patient stay, due to a combination of dehydration and cough. It was at this point we realized that CF was CF and if we wanted to fight it and keep her as healthy as possible, we'd need to try everything the doctors asked. We made a more concerted effort on the ezymes.
 
 6 months later her weight was still really bad, even with a good effort on the enzymes. AFter ruling out a number of issues, we were broached on the idea of giving her a feeding tube to help her gain. It took us a year of going back and forth, and anguishing before we finally consented this past November to have one placed. She had fallen off the weight chart for BMI and everything we read showed a direct correlation between maintaining lung health in CF and keeping up the weight.
 
 Hang in there. Know that I understand how tough and emotional the diagnosis time is. Also know that in the big CF scheme of things, these enzymes are no big deal -- and if they help they can really make a difference, and if they don't you can always walk away from them. (((HUGS)))

4 month w/ CF no symptoms

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

Mommafirst

Guest

Mommafirst

Guest

Mommafirst

Guest

Mommafirst

Guest

Mommafirst

Guest