Fluctuating wieght gain

[Auntysharn]

My 8week old nephew has just been diagnosed with CF - based on elevated IRT in the heel prick and Sweat test of 94. We are waiting for genetic test results.

Baby failed to thrive for the first 5 weeks while being breast fed, only gaining 400g since birth to 5wks(indicating PI) but then he was put onto formula, and for the next two weeks gained 200g per week (indicating PS). This last week however, (third week of formula) he has only gained 60g - which takes us back to probable PI.
He is now on enzymes. And we are waiting for the fecal test results.

My question is - if he was PI in the first 5 weeks, why and how could he suddenly put on 200g per week once going onto formula for two weeks? And now he is back to low weekly wieght gain.

Thanks for any insight.

 

[Auntysharn]

My 8week old nephew has just been diagnosed with CF - based on elevated IRT in the heel prick and Sweat test of 94. We are waiting for genetic test results.

Baby failed to thrive for the first 5 weeks while being breast fed, only gaining 400g since birth to 5wks(indicating PI) but then he was put onto formula, and for the next two weeks gained 200g per week (indicating PS). This last week however, (third week of formula) he has only gained 60g - which takes us back to probable PI.
He is now on enzymes. And we are waiting for the fecal test results.

My question is - if he was PI in the first 5 weeks, why and how could he suddenly put on 200g per week once going onto formula for two weeks? And now he is back to low weekly wieght gain.

Thanks for any insight.

 

[Auntysharn]

My 8week old nephew has just been diagnosed with CF - based on elevated IRT in the heel prick and Sweat test of 94. We are waiting for genetic test results.

Baby failed to thrive for the first 5 weeks while being breast fed, only gaining 400g since birth to 5wks(indicating PI) but then he was put onto formula, and for the next two weeks gained 200g per week (indicating PS). This last week however, (third week of formula) he has only gained 60g - which takes us back to probable PI.
He is now on enzymes. And we are waiting for the fecal test results.

My question is - if he was PI in the first 5 weeks, why and how could he suddenly put on 200g per week once going onto formula for two weeks? And now he is back to low weekly wieght gain.

Thanks for any insight.

 

[Auntysharn]

My 8week old nephew has just been diagnosed with CF - based on elevated IRT in the heel prick and Sweat test of 94. We are waiting for genetic test results.

Baby failed to thrive for the first 5 weeks while being breast fed, only gaining 400g since birth to 5wks(indicating PI) but then he was put onto formula, and for the next two weeks gained 200g per week (indicating PS). This last week however, (third week of formula) he has only gained 60g - which takes us back to probable PI.
He is now on enzymes. And we are waiting for the fecal test results.

My question is - if he was PI in the first 5 weeks, why and how could he suddenly put on 200g per week once going onto formula for two weeks? And now he is back to low weekly wieght gain.

Thanks for any insight.

 

[Auntysharn]

My 8week old nephew has just been diagnosed with CF - based on elevated IRT in the heel prick and Sweat test of 94. We are waiting for genetic test results.
<br />
<br />Baby failed to thrive for the first 5 weeks while being breast fed, only gaining 400g since birth to 5wks(indicating PI) but then he was put onto formula, and for the next two weeks gained 200g per week (indicating PS). This last week however, (third week of formula) he has only gained 60g - which takes us back to probable PI.
<br />He is now on enzymes. And we are waiting for the fecal test results.
<br />
<br />My question is - if he was PI in the first 5 weeks, why and how could he suddenly put on 200g per week once going onto formula for two weeks? And now he is back to low weekly wieght gain.
<br />
<br />Thanks for any insight.

 

[hmw]

Congratulation on the birth of your nephew. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so sorry to hear he has cf, though... that is so hard to hear at any age but must be devastating in a newborn. We didn't find out until my daughter was 7- but as with your nephew, growth problems was what we saw first. I'm glad you found this website, this is a very good place for support and answers to your questions!

What kind of formula was he put on- do you know? Was it a special high-calorie type? Initial gain can still be seen even if PI if extra fat & calories are introduced. If he started gaining weight at all on enzymes that is very good. However, it also takes a lot of adjustment to determine the appropriate dosing of enzymes to maintain good weight gain.

Another indication of pancreatic insufficiency, aside from monitoring weight- which can fluctuate from week to week- is what the stools look like... if they are greasy/oily looking on a consistent basis this can be an indication of pancreatic insufficiency (although this does often improve on a therapeutic dose of enzymes.)

There are a few different fecal tests; since you didn't post which your nephew had here is a little info about them: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Pancreatic Insufficiency: the tests</a> I hope this test helps yield some answers, although pancreatic function can, and often does, change quite a bit in the early months and years.

 

[hmw]

Congratulation on the birth of your nephew. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so sorry to hear he has cf, though... that is so hard to hear at any age but must be devastating in a newborn. We didn't find out until my daughter was 7- but as with your nephew, growth problems was what we saw first. I'm glad you found this website, this is a very good place for support and answers to your questions!

What kind of formula was he put on- do you know? Was it a special high-calorie type? Initial gain can still be seen even if PI if extra fat & calories are introduced. If he started gaining weight at all on enzymes that is very good. However, it also takes a lot of adjustment to determine the appropriate dosing of enzymes to maintain good weight gain.

Another indication of pancreatic insufficiency, aside from monitoring weight- which can fluctuate from week to week- is what the stools look like... if they are greasy/oily looking on a consistent basis this can be an indication of pancreatic insufficiency (although this does often improve on a therapeutic dose of enzymes.)

There are a few different fecal tests; since you didn't post which your nephew had here is a little info about them: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Pancreatic Insufficiency: the tests</a> I hope this test helps yield some answers, although pancreatic function can, and often does, change quite a bit in the early months and years.

 

[hmw]

Congratulation on the birth of your nephew. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so sorry to hear he has cf, though... that is so hard to hear at any age but must be devastating in a newborn. We didn't find out until my daughter was 7- but as with your nephew, growth problems was what we saw first. I'm glad you found this website, this is a very good place for support and answers to your questions!

What kind of formula was he put on- do you know? Was it a special high-calorie type? Initial gain can still be seen even if PI if extra fat & calories are introduced. If he started gaining weight at all on enzymes that is very good. However, it also takes a lot of adjustment to determine the appropriate dosing of enzymes to maintain good weight gain.

Another indication of pancreatic insufficiency, aside from monitoring weight- which can fluctuate from week to week- is what the stools look like... if they are greasy/oily looking on a consistent basis this can be an indication of pancreatic insufficiency (although this does often improve on a therapeutic dose of enzymes.)

There are a few different fecal tests; since you didn't post which your nephew had here is a little info about them: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Pancreatic Insufficiency: the tests</a> I hope this test helps yield some answers, although pancreatic function can, and often does, change quite a bit in the early months and years.

 

[hmw]

Congratulation on the birth of your nephew. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so sorry to hear he has cf, though... that is so hard to hear at any age but must be devastating in a newborn. We didn't find out until my daughter was 7- but as with your nephew, growth problems was what we saw first. I'm glad you found this website, this is a very good place for support and answers to your questions!

What kind of formula was he put on- do you know? Was it a special high-calorie type? Initial gain can still be seen even if PI if extra fat & calories are introduced. If he started gaining weight at all on enzymes that is very good. However, it also takes a lot of adjustment to determine the appropriate dosing of enzymes to maintain good weight gain.

Another indication of pancreatic insufficiency, aside from monitoring weight- which can fluctuate from week to week- is what the stools look like... if they are greasy/oily looking on a consistent basis this can be an indication of pancreatic insufficiency (although this does often improve on a therapeutic dose of enzymes.)

There are a few different fecal tests; since you didn't post which your nephew had here is a little info about them: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Pancreatic Insufficiency: the tests</a> I hope this test helps yield some answers, although pancreatic function can, and often does, change quite a bit in the early months and years.

 

[hmw]

Congratulation on the birth of your nephew. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so sorry to hear he has cf, though... that is so hard to hear at any age but must be devastating in a newborn. We didn't find out until my daughter was 7- but as with your nephew, growth problems was what we saw first. I'm glad you found this website, this is a very good place for support and answers to your questions!
<br />
<br />What kind of formula was he put on- do you know? Was it a special high-calorie type? Initial gain can still be seen even if PI if extra fat & calories are introduced. If he started gaining weight at all on enzymes that is very good. However, it also takes a lot of adjustment to determine the appropriate dosing of enzymes to maintain good weight gain.
<br />
<br />Another indication of pancreatic insufficiency, aside from monitoring weight- which can fluctuate from week to week- is what the stools look like... if they are greasy/oily looking on a consistent basis this can be an indication of pancreatic insufficiency (although this does often improve on a therapeutic dose of enzymes.)
<br />
<br />There are a few different fecal tests; since you didn't post which your nephew had here is a little info about them: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Pancreatic Insufficiency: the tests</a> I hope this test helps yield some answers, although pancreatic function can, and often does, change quite a bit in the early months and years.

 

[ymikhale]

PS/PI may not be the only reason for weight gain problems- at least that is my experience. My daughter was PI when she was born (fecal elastase 60), then a year later it flipped to PS (elastase 449), but she still had only moderate weight gain barely touching the 50th percentile.

Incorporating coconut oil and sea salt has definitely helped her weight gain (she is now above 75th percentile)

 

[ymikhale]

PS/PI may not be the only reason for weight gain problems- at least that is my experience. My daughter was PI when she was born (fecal elastase 60), then a year later it flipped to PS (elastase 449), but she still had only moderate weight gain barely touching the 50th percentile.

Incorporating coconut oil and sea salt has definitely helped her weight gain (she is now above 75th percentile)

 

[ymikhale]

PS/PI may not be the only reason for weight gain problems- at least that is my experience. My daughter was PI when she was born (fecal elastase 60), then a year later it flipped to PS (elastase 449), but she still had only moderate weight gain barely touching the 50th percentile.

Incorporating coconut oil and sea salt has definitely helped her weight gain (she is now above 75th percentile)

 

[ymikhale]

PS/PI may not be the only reason for weight gain problems- at least that is my experience. My daughter was PI when she was born (fecal elastase 60), then a year later it flipped to PS (elastase 449), but she still had only moderate weight gain barely touching the 50th percentile.

Incorporating coconut oil and sea salt has definitely helped her weight gain (she is now above 75th percentile)

 

[ymikhale]

PS/PI may not be the only reason for weight gain problems- at least that is my experience. My daughter was PI when she was born (fecal elastase 60), then a year later it flipped to PS (elastase 449), but she still had only moderate weight gain barely touching the 50th percentile.
<br />
<br />Incorporating coconut oil and sea salt has definitely helped her weight gain (she is now above 75th percentile)

 

[Auntysharn]

Thank you for your replies.

Harriet - Baby is not on a high cal formula. It's S26 (in Australia), which is just a popular one for normal babies. SIL had a lot of trouble breast feeding, and we suspected that baby just wasn't getting any milk and therefore did not gain good wieght. His nappies (diapers) were never overly wet.
With the introduction of the formula alone (nothing else), he gained good wieght for those two weeks and his nappies were very wet.
The sweat test was done about 5 days after he started the formula and with the 94 result they were told he had CF.
They were then told to add some salt to his bottles (week 3 on formula)and that week he only gained 60g. It is only now (week 4 on formula) that the enzymes have been added.

Thank you for the PI link. Unfortunately I don't know which fecal test was ordered.

Regarding stools - I have not changed his nappy to know exactly, but SIL was concerned that his poo was dark green from about two weeks of age. It was also quite loose. When formula was introduced, his stools went back to the 'newborn' yellow colour and thickened up some. They do not smell offensive.
She was told different things regarding his early stools in the first 5 weeks - from them being normal, to being a sign of starvation.

I guess our confusion stems from such healthy wieght gain from the formula alone (nothing added). I would have assumed if he was PI that he would have only put on a little or no wieght even when on a normal formula.
Can the pancreatic function fluctuate from week to week - so it wasn't working for the first 5 weeks? Then working the first two weeks on formula, but the third week it wasn't again? Or would you speculate that is was working the first 5 weeks but he just wasn't getting any milk . . .and suddenly with formula he got some food finally to work on, thus gaining the 400g? But in that case, if he is PS, then why the drop in weight gain this last week? His appetite is quite good so we are confident he is getting enough.
This is what we are wondering.


ymikhale - Thank you for the tip on coconut oil and sea salt. Would baby need to be on real solids before this could be introduced? Around 4-6mths old?? He has only just started the apples/enzymes at 7+ weeks old.

I only have a very basic understanding of how CF effects pancreatic function, so I will educate myself further on it. I thank you again for your time in responding.

 

[Auntysharn]

Thank you for your replies.

Harriet - Baby is not on a high cal formula. It's S26 (in Australia), which is just a popular one for normal babies. SIL had a lot of trouble breast feeding, and we suspected that baby just wasn't getting any milk and therefore did not gain good wieght. His nappies (diapers) were never overly wet.
With the introduction of the formula alone (nothing else), he gained good wieght for those two weeks and his nappies were very wet.
The sweat test was done about 5 days after he started the formula and with the 94 result they were told he had CF.
They were then told to add some salt to his bottles (week 3 on formula)and that week he only gained 60g. It is only now (week 4 on formula) that the enzymes have been added.

Thank you for the PI link. Unfortunately I don't know which fecal test was ordered.

Regarding stools - I have not changed his nappy to know exactly, but SIL was concerned that his poo was dark green from about two weeks of age. It was also quite loose. When formula was introduced, his stools went back to the 'newborn' yellow colour and thickened up some. They do not smell offensive.
She was told different things regarding his early stools in the first 5 weeks - from them being normal, to being a sign of starvation.

I guess our confusion stems from such healthy wieght gain from the formula alone (nothing added). I would have assumed if he was PI that he would have only put on a little or no wieght even when on a normal formula.
Can the pancreatic function fluctuate from week to week - so it wasn't working for the first 5 weeks? Then working the first two weeks on formula, but the third week it wasn't again? Or would you speculate that is was working the first 5 weeks but he just wasn't getting any milk . . .and suddenly with formula he got some food finally to work on, thus gaining the 400g? But in that case, if he is PS, then why the drop in weight gain this last week? His appetite is quite good so we are confident he is getting enough.
This is what we are wondering.


ymikhale - Thank you for the tip on coconut oil and sea salt. Would baby need to be on real solids before this could be introduced? Around 4-6mths old?? He has only just started the apples/enzymes at 7+ weeks old.

I only have a very basic understanding of how CF effects pancreatic function, so I will educate myself further on it. I thank you again for your time in responding.

 

[Auntysharn]

Thank you for your replies.

Harriet - Baby is not on a high cal formula. It's S26 (in Australia), which is just a popular one for normal babies. SIL had a lot of trouble breast feeding, and we suspected that baby just wasn't getting any milk and therefore did not gain good wieght. His nappies (diapers) were never overly wet.
With the introduction of the formula alone (nothing else), he gained good wieght for those two weeks and his nappies were very wet.
The sweat test was done about 5 days after he started the formula and with the 94 result they were told he had CF.
They were then told to add some salt to his bottles (week 3 on formula)and that week he only gained 60g. It is only now (week 4 on formula) that the enzymes have been added.

Thank you for the PI link. Unfortunately I don't know which fecal test was ordered.

Regarding stools - I have not changed his nappy to know exactly, but SIL was concerned that his poo was dark green from about two weeks of age. It was also quite loose. When formula was introduced, his stools went back to the 'newborn' yellow colour and thickened up some. They do not smell offensive.
She was told different things regarding his early stools in the first 5 weeks - from them being normal, to being a sign of starvation.

I guess our confusion stems from such healthy wieght gain from the formula alone (nothing added). I would have assumed if he was PI that he would have only put on a little or no wieght even when on a normal formula.
Can the pancreatic function fluctuate from week to week - so it wasn't working for the first 5 weeks? Then working the first two weeks on formula, but the third week it wasn't again? Or would you speculate that is was working the first 5 weeks but he just wasn't getting any milk . . .and suddenly with formula he got some food finally to work on, thus gaining the 400g? But in that case, if he is PS, then why the drop in weight gain this last week? His appetite is quite good so we are confident he is getting enough.
This is what we are wondering.


ymikhale - Thank you for the tip on coconut oil and sea salt. Would baby need to be on real solids before this could be introduced? Around 4-6mths old?? He has only just started the apples/enzymes at 7+ weeks old.

I only have a very basic understanding of how CF effects pancreatic function, so I will educate myself further on it. I thank you again for your time in responding.

 

[Auntysharn]

Thank you for your replies.

Harriet - Baby is not on a high cal formula. It's S26 (in Australia), which is just a popular one for normal babies. SIL had a lot of trouble breast feeding, and we suspected that baby just wasn't getting any milk and therefore did not gain good wieght. His nappies (diapers) were never overly wet.
With the introduction of the formula alone (nothing else), he gained good wieght for those two weeks and his nappies were very wet.
The sweat test was done about 5 days after he started the formula and with the 94 result they were told he had CF.
They were then told to add some salt to his bottles (week 3 on formula)and that week he only gained 60g. It is only now (week 4 on formula) that the enzymes have been added.

Thank you for the PI link. Unfortunately I don't know which fecal test was ordered.

Regarding stools - I have not changed his nappy to know exactly, but SIL was concerned that his poo was dark green from about two weeks of age. It was also quite loose. When formula was introduced, his stools went back to the 'newborn' yellow colour and thickened up some. They do not smell offensive.
She was told different things regarding his early stools in the first 5 weeks - from them being normal, to being a sign of starvation.

I guess our confusion stems from such healthy wieght gain from the formula alone (nothing added). I would have assumed if he was PI that he would have only put on a little or no wieght even when on a normal formula.
Can the pancreatic function fluctuate from week to week - so it wasn't working for the first 5 weeks? Then working the first two weeks on formula, but the third week it wasn't again? Or would you speculate that is was working the first 5 weeks but he just wasn't getting any milk . . .and suddenly with formula he got some food finally to work on, thus gaining the 400g? But in that case, if he is PS, then why the drop in weight gain this last week? His appetite is quite good so we are confident he is getting enough.
This is what we are wondering.


ymikhale - Thank you for the tip on coconut oil and sea salt. Would baby need to be on real solids before this could be introduced? Around 4-6mths old?? He has only just started the apples/enzymes at 7+ weeks old.

I only have a very basic understanding of how CF effects pancreatic function, so I will educate myself further on it. I thank you again for your time in responding.

 

[Auntysharn]

Thank you for your replies.
<br />
<br />Harriet - Baby is not on a high cal formula. It's S26 (in Australia), which is just a popular one for normal babies. SIL had a lot of trouble breast feeding, and we suspected that baby just wasn't getting any milk and therefore did not gain good wieght. His nappies (diapers) were never overly wet.
<br />With the introduction of the formula alone (nothing else), he gained good wieght for those two weeks and his nappies were very wet.
<br />The sweat test was done about 5 days after he started the formula and with the 94 result they were told he had CF.
<br />They were then told to add some salt to his bottles (week 3 on formula)and that week he only gained 60g. It is only now (week 4 on formula) that the enzymes have been added.
<br />
<br />Thank you for the PI link. Unfortunately I don't know which fecal test was ordered.
<br />
<br />Regarding stools - I have not changed his nappy to know exactly, but SIL was concerned that his poo was dark green from about two weeks of age. It was also quite loose. When formula was introduced, his stools went back to the 'newborn' yellow colour and thickened up some. They do not smell offensive.
<br />She was told different things regarding his early stools in the first 5 weeks - from them being normal, to being a sign of starvation.
<br />
<br />I guess our confusion stems from such healthy wieght gain from the formula alone (nothing added). I would have assumed if he was PI that he would have only put on a little or no wieght even when on a normal formula.
<br />Can the pancreatic function fluctuate from week to week - so it wasn't working for the first 5 weeks? Then working the first two weeks on formula, but the third week it wasn't again? Or would you speculate that is was working the first 5 weeks but he just wasn't getting any milk . . .and suddenly with formula he got some food finally to work on, thus gaining the 400g? But in that case, if he is PS, then why the drop in weight gain this last week? His appetite is quite good so we are confident he is getting enough.
<br />This is what we are wondering.
<br />
<br />
<br />ymikhale - Thank you for the tip on coconut oil and sea salt. Would baby need to be on real solids before this could be introduced? Around 4-6mths old?? He has only just started the apples/enzymes at 7+ weeks old.
<br />
<br />I only have a very basic understanding of how CF effects pancreatic function, so I will educate myself further on it. I thank you again for your time in responding.