help alleviate my irrational fears!!

[np2]

Hi,

My cousin has CF and I always meant to be tested to find out wether or not i was a carrier but never got around to it and now i have a baby! He is 10.5 months old. However at his last check up (9months) the doctor was concerned by his weight gain and suggested i start feeding him fat every 2 hours to get him to gain more weight. Between the ages of 4 and 9 months he gained only two pounds. Up unitl the age of four months though he gained about 2 lbs per month!!!! At first i was not at all worried because I figured that the growth charts included a lot of formula fed babies who tend to be chubbier in later months than breastfed babies. However after a month or so of feeding him around 3 or 4 good meals a day and not seeing much weight gain (according to our scale, weighed by difference) I started to worry that maybe he has CF and that when he strarted solid foods his need for enzymes became apparent. Anyway the other reason i was a little worried is because when i started him on solids at around 7 months (prior to that he was exclusively breastfed) he started pooping alot more!! He usually poops around 4 times a day. Sometimes 3 and somtimes 5 times a day. He nurses every hour and a half though and every 2 hours at night (breast milk may act as a laxitive?) Anyway i was just wondering if anyone her had experience of exclusively breastfeeding but not really seeing any symptoms until after starting solid food?

 

[np2]

Hi,

My cousin has CF and I always meant to be tested to find out wether or not i was a carrier but never got around to it and now i have a baby! He is 10.5 months old. However at his last check up (9months) the doctor was concerned by his weight gain and suggested i start feeding him fat every 2 hours to get him to gain more weight. Between the ages of 4 and 9 months he gained only two pounds. Up unitl the age of four months though he gained about 2 lbs per month!!!! At first i was not at all worried because I figured that the growth charts included a lot of formula fed babies who tend to be chubbier in later months than breastfed babies. However after a month or so of feeding him around 3 or 4 good meals a day and not seeing much weight gain (according to our scale, weighed by difference) I started to worry that maybe he has CF and that when he strarted solid foods his need for enzymes became apparent. Anyway the other reason i was a little worried is because when i started him on solids at around 7 months (prior to that he was exclusively breastfed) he started pooping alot more!! He usually poops around 4 times a day. Sometimes 3 and somtimes 5 times a day. He nurses every hour and a half though and every 2 hours at night (breast milk may act as a laxitive?) Anyway i was just wondering if anyone her had experience of exclusively breastfeeding but not really seeing any symptoms until after starting solid food?

 

[np2]

Hi,

My cousin has CF and I always meant to be tested to find out wether or not i was a carrier but never got around to it and now i have a baby! He is 10.5 months old. However at his last check up (9months) the doctor was concerned by his weight gain and suggested i start feeding him fat every 2 hours to get him to gain more weight. Between the ages of 4 and 9 months he gained only two pounds. Up unitl the age of four months though he gained about 2 lbs per month!!!! At first i was not at all worried because I figured that the growth charts included a lot of formula fed babies who tend to be chubbier in later months than breastfed babies. However after a month or so of feeding him around 3 or 4 good meals a day and not seeing much weight gain (according to our scale, weighed by difference) I started to worry that maybe he has CF and that when he strarted solid foods his need for enzymes became apparent. Anyway the other reason i was a little worried is because when i started him on solids at around 7 months (prior to that he was exclusively breastfed) he started pooping alot more!! He usually poops around 4 times a day. Sometimes 3 and somtimes 5 times a day. He nurses every hour and a half though and every 2 hours at night (breast milk may act as a laxitive?) Anyway i was just wondering if anyone her had experience of exclusively breastfeeding but not really seeing any symptoms until after starting solid food?

 

[Anns]

have u had a swet test done?  it is a simple painless test,
ask your doc bout it w/ the family history

 

[Anns]

have u had a swet test done?  it is a simple painless test,
ask your doc bout it w/ the family history

 

[Anns]

have u had a swet test done?  it is a simple painless test,
ask your doc bout it w/ the family history

 

[DEES4]

Has his stools been oily or greasy looking and do they smell extremely bad (worse than normal)? I would suggest a sweat test due to the fact there is a family history. I would not rest easy until it was done!
Carrie

 

[DEES4]

Has his stools been oily or greasy looking and do they smell extremely bad (worse than normal)? I would suggest a sweat test due to the fact there is a family history. I would not rest easy until it was done!
Carrie

 

[DEES4]

Has his stools been oily or greasy looking and do they smell extremely bad (worse than normal)? I would suggest a sweat test due to the fact there is a family history. I would not rest easy until it was done!
Carrie

 

[ktsmom]

Your fears are not irrational. Trust your instincts on this one; call your doctor Monday and discuss your family history of CF and your concerns. Ask for a sweat test AT A PLACE WHERE THEY KNOW WHAT THEY ARE DOING.

Does your state do any CF screening at birth? (you can probably find that out on the internet; google your state name and newborn screening)

You can lick his skin to see if he tastes salty but this will more than likely only drive you crazy.

One answer to your specific situation could be that pancreas function can start out normal but then decrease.

I wish you the very best on this one. If it is a positive diagnosis please know that advances in treatment continue to happen at an amazing pace. And come back and tell us, either way.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Your fears are not irrational. Trust your instincts on this one; call your doctor Monday and discuss your family history of CF and your concerns. Ask for a sweat test AT A PLACE WHERE THEY KNOW WHAT THEY ARE DOING.

Does your state do any CF screening at birth? (you can probably find that out on the internet; google your state name and newborn screening)

You can lick his skin to see if he tastes salty but this will more than likely only drive you crazy.

One answer to your specific situation could be that pancreas function can start out normal but then decrease.

I wish you the very best on this one. If it is a positive diagnosis please know that advances in treatment continue to happen at an amazing pace. And come back and tell us, either way.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Your fears are not irrational. Trust your instincts on this one; call your doctor Monday and discuss your family history of CF and your concerns. Ask for a sweat test AT A PLACE WHERE THEY KNOW WHAT THEY ARE DOING.

Does your state do any CF screening at birth? (you can probably find that out on the internet; google your state name and newborn screening)

You can lick his skin to see if he tastes salty but this will more than likely only drive you crazy.

One answer to your specific situation could be that pancreas function can start out normal but then decrease.

I wish you the very best on this one. If it is a positive diagnosis please know that advances in treatment continue to happen at an amazing pace. And come back and tell us, either way.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[np2]

Hi again,

They do not currently do newborn screening for CF here. Though i think they are considering adding it. I did tell our doc about the family history of CF when my son was two days old but he was always doing so well then that we had no reason to fear CF. We have not had a sweat test done. I am sort of afraid of mentioning my concerns to the doc and being called crazy but I'll call them. Hopefully he is fine.

 

[np2]

Hi again,

They do not currently do newborn screening for CF here. Though i think they are considering adding it. I did tell our doc about the family history of CF when my son was two days old but he was always doing so well then that we had no reason to fear CF. We have not had a sweat test done. I am sort of afraid of mentioning my concerns to the doc and being called crazy but I'll call them. Hopefully he is fine.

 

[np2]

Hi again,

They do not currently do newborn screening for CF here. Though i think they are considering adding it. I did tell our doc about the family history of CF when my son was two days old but he was always doing so well then that we had no reason to fear CF. We have not had a sweat test done. I am sort of afraid of mentioning my concerns to the doc and being called crazy but I'll call them. Hopefully he is fine.

 

[JRPandTJP]

I breastfed our son (w/CF) exclusively for 20 months, am studying to become a La Leche League leader, and have researched extrensively regarding breastfeeding and CF, so I can hopefully help out here.

First, because breast milk has its own lipase (enzyme), babies that are exclusively breast fed and are mildly pancreatic insufficient, can go undetected for quite some time. This has been well documented in Sweden where babies among the CF population, which are 100% breastfed, only show signs of malabsorption when they switch to food (this can be true of celiacs disease as well). So, as food is introduced, mild pancreatic insufficiency will begin to show itself as litte to no gain, foul smelling/oily/frequent stools and/or vitamin deficiencies (ADEK). So, the breast milk doesn't have a laxative quality, but the pancreatic insufficiency may be just getting to a point where it is enough to cause digestive issues now.

If he is in need of enzymes due to CF, your doctor's recommendation to add fat every 2 hours will only make things worse. There will be more undigested fat present in the stool and more than likely more frequent stools. With enzymes and a fat like MCT oil or omega 3 oil (olive, canola, walnut, flax) it could be helpful, but not until then.

So, you absolutely need to get a sweat test, a genetic blood test (Ambrey or Guthrey Panel - will no in 2 weeks for 1000 mutations), and a fecal fat test of his stools. At this point, you should feel great to know there is no better source of food for him, especially if he has CF, than your breast milk. It is high in DHA, easy to digest, protects against allegies and respritatory infections, and has immune propeties no formula can match. So, while we all hope it is not CF, if it is you are giving him the very best nutrition possible.

Please have him tested soon and let us know. You can also ask about starting him on enzymes while you wait the results if you are really concerned (especially if the fecal fat test if positive).

The other possible issues can be food allergy especially wheat and dairy or other digestive disorders. Something to ask about as well. Hope this helps and don't hesitate to ask me other questions if you need to.

Warmly,
Jody

 

[JRPandTJP]

I breastfed our son (w/CF) exclusively for 20 months, am studying to become a La Leche League leader, and have researched extrensively regarding breastfeeding and CF, so I can hopefully help out here.

First, because breast milk has its own lipase (enzyme), babies that are exclusively breast fed and are mildly pancreatic insufficient, can go undetected for quite some time. This has been well documented in Sweden where babies among the CF population, which are 100% breastfed, only show signs of malabsorption when they switch to food (this can be true of celiacs disease as well). So, as food is introduced, mild pancreatic insufficiency will begin to show itself as litte to no gain, foul smelling/oily/frequent stools and/or vitamin deficiencies (ADEK). So, the breast milk doesn't have a laxative quality, but the pancreatic insufficiency may be just getting to a point where it is enough to cause digestive issues now.

If he is in need of enzymes due to CF, your doctor's recommendation to add fat every 2 hours will only make things worse. There will be more undigested fat present in the stool and more than likely more frequent stools. With enzymes and a fat like MCT oil or omega 3 oil (olive, canola, walnut, flax) it could be helpful, but not until then.

So, you absolutely need to get a sweat test, a genetic blood test (Ambrey or Guthrey Panel - will no in 2 weeks for 1000 mutations), and a fecal fat test of his stools. At this point, you should feel great to know there is no better source of food for him, especially if he has CF, than your breast milk. It is high in DHA, easy to digest, protects against allegies and respritatory infections, and has immune propeties no formula can match. So, while we all hope it is not CF, if it is you are giving him the very best nutrition possible.

Please have him tested soon and let us know. You can also ask about starting him on enzymes while you wait the results if you are really concerned (especially if the fecal fat test if positive).

The other possible issues can be food allergy especially wheat and dairy or other digestive disorders. Something to ask about as well. Hope this helps and don't hesitate to ask me other questions if you need to.

Warmly,
Jody

 

[JRPandTJP]

I breastfed our son (w/CF) exclusively for 20 months, am studying to become a La Leche League leader, and have researched extrensively regarding breastfeeding and CF, so I can hopefully help out here.

First, because breast milk has its own lipase (enzyme), babies that are exclusively breast fed and are mildly pancreatic insufficient, can go undetected for quite some time. This has been well documented in Sweden where babies among the CF population, which are 100% breastfed, only show signs of malabsorption when they switch to food (this can be true of celiacs disease as well). So, as food is introduced, mild pancreatic insufficiency will begin to show itself as litte to no gain, foul smelling/oily/frequent stools and/or vitamin deficiencies (ADEK). So, the breast milk doesn't have a laxative quality, but the pancreatic insufficiency may be just getting to a point where it is enough to cause digestive issues now.

If he is in need of enzymes due to CF, your doctor's recommendation to add fat every 2 hours will only make things worse. There will be more undigested fat present in the stool and more than likely more frequent stools. With enzymes and a fat like MCT oil or omega 3 oil (olive, canola, walnut, flax) it could be helpful, but not until then.

So, you absolutely need to get a sweat test, a genetic blood test (Ambrey or Guthrey Panel - will no in 2 weeks for 1000 mutations), and a fecal fat test of his stools. At this point, you should feel great to know there is no better source of food for him, especially if he has CF, than your breast milk. It is high in DHA, easy to digest, protects against allegies and respritatory infections, and has immune propeties no formula can match. So, while we all hope it is not CF, if it is you are giving him the very best nutrition possible.

Please have him tested soon and let us know. You can also ask about starting him on enzymes while you wait the results if you are really concerned (especially if the fecal fat test if positive).

The other possible issues can be food allergy especially wheat and dairy or other digestive disorders. Something to ask about as well. Hope this helps and don't hesitate to ask me other questions if you need to.

Warmly,
Jody

 

[Mommafirst]

My daughter with CF is 9 months and exclusively breast fed.
 She is falling in weight percentages, like your son -- but is
(right now) pancreatic sufficient.  I certainly don't think
your situation can only be explained by CF, as my 3 year old son
(CF carrier) has been in the 10th percentile of weight since he was
around 7 or 8 months -- just fell off.    Since you
have a family history, I would encourage you to seek out further
testing.  They are not invasive and would go a LONG way in
either assuring you OR getting your son the help he'll need.
 Either way, best of luck!!!!

 

[Mommafirst]

My daughter with CF is 9 months and exclusively breast fed.
 She is falling in weight percentages, like your son -- but is
(right now) pancreatic sufficient.  I certainly don't think
your situation can only be explained by CF, as my 3 year old son
(CF carrier) has been in the 10th percentile of weight since he was
around 7 or 8 months -- just fell off.    Since you
have a family history, I would encourage you to seek out further
testing.  They are not invasive and would go a LONG way in
either assuring you OR getting your son the help he'll need.
 Either way, best of luck!!!!