Infant Nutrition

K

KristenLilysMom

New member
<P>Hello All, </P>
<P>This is my first message as I am beside myself. My daughter was diagnosed at 3 weeks. We were actually relieved to have a diagnosis as we knew there was something wrong since she was not gaining weight. She is now nearly 4 months old and still weighs only 10lbs 14oz. We are supplementing her feeds as directed by our CF clinic dietition but I can't help but wonder what else we should be doing. How small do the clinics let these babies get before "something" else happens??! What is the next step?? She is a bright, beautiful little girl who is meeting all her milestones, but still very thin. I know you all have walked in our shoes, I just want to know what to expect and where we are headed. </P>
<P>Thanks!</P>
 
K

KristenLilysMom

New member
<P>Hello All, </P>
<P>This is my first message as I am beside myself. My daughter was diagnosed at 3 weeks. We were actually relieved to have a diagnosis as we knew there was something wrongsince she was not gaining weight. She is now nearly 4 months old and still weighs only 10lbs 14oz. We are supplementing her feeds as directed by our CF clinic dietition but I can't help but wonder what else we should be doing. How smalldo the clinics let these babies get before "something" else happens??! What is the next step?? She is a bright, beautiful little girl who is meeting all her milestones, but still very thin. I know you all have walked in our shoes, I just want to know what to expect and where we are headed. </P>
<P>Thanks!</P>
 
K

KristenLilysMom

New member
<P><BR>Hello All, </P>
<P>This is my first message as I am beside myself. My daughter was diagnosed at 3 weeks. We were actually relieved to have a diagnosis as we knew there was something wrongsince she was not gaining weight. She is now nearly 4 months old and still weighs only 10lbs 14oz. We are supplementing her feeds as directed by our CF clinic dietition but I can't help but wonder what else we should be doing. How smalldo the clinics let these babies get before "something" else happens??! What is the next step?? She is a bright, beautiful little girl who is meeting all her milestones, but still very thin. I know you all have walked in our shoes, I just want to know what to expect and where we are headed. </P>
<P>Thanks!</P>
 
R

Ratatosk

Administrator
Staff member
How are her stools? Is she getting enough enzymes?

We struggled with this when DS was a baby and not only did we increase the powder to water ratio to increase calories in his formula, but we also were instructed to feed him every 3-4 hours as he just didn't CARE about eating. We also were prescribed zantac to help with reflux and to make the enzymes work better. We also used regular formula instead of pregistimil as DS despised it and would refuse to eat.

We were fortunate in that we were able to maintan a 50th percentile. We started to supplement with table food as per the doctors instructions at age 6 months -- yogurt, ground up what we were eating, doctored up babyfood, yet formula was still his primary food until he was about 18 months old.
 
R

Ratatosk

Administrator
Staff member
How are her stools? Is she getting enough enzymes?

We struggled with this when DS was a baby and not only did we increase the powder to water ratio to increase calories in his formula, but we also were instructed to feed him every 3-4 hours as he just didn't CARE about eating. We also were prescribed zantac to help with reflux and to make the enzymes work better. We also used regular formula instead of pregistimil as DS despised it and would refuse to eat.

We were fortunate in that we were able to maintan a 50th percentile. We started to supplement with table food as per the doctors instructions at age 6 months -- yogurt, ground up what we were eating, doctored up babyfood, yet formula was still his primary food until he was about 18 months old.
 
R

Ratatosk

Administrator
Staff member
How are her stools? Is she getting enough enzymes?
<br />
<br />We struggled with this when DS was a baby and not only did we increase the powder to water ratio to increase calories in his formula, but we also were instructed to feed him every 3-4 hours as he just didn't CARE about eating. We also were prescribed zantac to help with reflux and to make the enzymes work better. We also used regular formula instead of pregistimil as DS despised it and would refuse to eat.
<br />
<br />We were fortunate in that we were able to maintan a 50th percentile. We started to supplement with table food as per the doctors instructions at age 6 months -- yogurt, ground up what we were eating, doctored up babyfood, yet formula was still his primary food until he was about 18 months old.
 
K

KristenLilysMom

New member
Sorry it's been a while - her stools are terrible 5-6 times/day bright to dark yellow/green colour. It looks like chicken fat?? sorta stringy like, and of course very stinky. I have had to stop breastfeeding and start her on 27 calories/oz formula (Breastmilk and Formula are only 20 calories/oz) She is now 4 1/2 months old and 12 lbs - around 5th percentile. The issue I think is that she is at the max dose of enzymes for her weight, the doctors seem hesitant to start zantac as she does not have any issues with reflux. We go to clinic tomorrow so will see what happens.
 
K

KristenLilysMom

New member
Sorry it's been a while - her stools are terrible 5-6 times/day bright to dark yellow/green colour. It looks like chicken fat?? sorta stringy like, and of course very stinky. I have had to stop breastfeeding and start her on 27 calories/oz formula (Breastmilk and Formula are only 20 calories/oz) She is now 4 1/2 months old and 12 lbs - around 5th percentile. The issue I think is that she is at the max dose of enzymes for her weight, the doctors seem hesitant to start zantac as she does not have any issues with reflux. We go to clinic tomorrow so will see what happens.
 
K

KristenLilysMom

New member
Sorry it's been a while - her stools are terrible 5-6 times/day bright to dark yellow/green colour. It looks like chicken fat?? sorta stringy like, and of course very stinky. I have had to stop breastfeeding and start her on 27 calories/oz formula (Breastmilk and Formula are only 20 calories/oz) She is now 4 1/2 months old and 12 lbs - around 5th percentile. The issue I think is that she is at the max dose of enzymes for her weight, the doctors seem hesitant to start zantac as she does not have any issues with reflux. We go to clinic tomorrow so will see what happens.
 
R

Ratatosk

Administrator
Staff member
I would stress to the doctors that her stools are awful -- that she's having severe malapsorption issues. Maybe they can try a different brand of enzyme -- some work better for others. The reason for the zantac isn't just for reflux, but to help the enzymes to remain intact and get to where they're supposed to go.

I would maybe post this in the family section. I know there are some kids who are very, very severely pancreatic insufficient and are also at their max in terms of enzymes. We were never given a maximum dosage for DS based on weight, we were just told to base it on how his pooped looked. We gradually would increase by half a capsule as he ate more.
 
R

Ratatosk

Administrator
Staff member
I would stress to the doctors that her stools are awful -- that she's having severe malapsorption issues. Maybe they can try a different brand of enzyme -- some work better for others. The reason for the zantac isn't just for reflux, but to help the enzymes to remain intact and get to where they're supposed to go.

I would maybe post this in the family section. I know there are some kids who are very, very severely pancreatic insufficient and are also at their max in terms of enzymes. We were never given a maximum dosage for DS based on weight, we were just told to base it on how his pooped looked. We gradually would increase by half a capsule as he ate more.
 
R

Ratatosk

Administrator
Staff member
I would stress to the doctors that her stools are awful -- that she's having severe malapsorption issues. Maybe they can try a different brand of enzyme -- some work better for others. The reason for the zantac isn't just for reflux, but to help the enzymes to remain intact and get to where they're supposed to go.
<br />
<br />I would maybe post this in the family section. I know there are some kids who are very, very severely pancreatic insufficient and are also at their max in terms of enzymes. We were never given a maximum dosage for DS based on weight, we were just told to base it on how his pooped looked. We gradually would increase by half a capsule as he ate more.
 
M

mjsmama

New member
My son also had issues with gaining weight so I can sympathize with you ~ he's finally at the 50th percentile at age 4. I hope you can get some better solutions at clinic. Both of my children had reflux as infants and were put on zantac and continue to take it to help the Creon. Please let us know how you make out ~ I'll be thinking of you.
 
M

mjsmama

New member
My son also had issues with gaining weight so I can sympathize with you ~ he's finally at the 50th percentile at age 4. I hope you can get some better solutions at clinic. Both of my children had reflux as infants and were put on zantac and continue to take it to help the Creon. Please let us know how you make out ~ I'll be thinking of you.
 
M

mjsmama

New member
My son also had issues with gaining weight so I can sympathize with you ~ he's finally at the 50th percentile at age 4. I hope you can get some better solutions at clinic. Both of my children had reflux as infants and were put on zantac and continue to take it to help the Creon. Please let us know how you make out ~ I'll be thinking of you.
 
K

KristenLilysMom

New member
She gained a POUND!! Hooray, she is now sitting just below the 15th percentile (Weight: 12lbs 12oz, Length: 24.4"). Because she gained weight we can now increase her enzymes and hopefully get some better looking stool, the Doc want us to take pictures of it so he can see what's going on, lucky him :)

P.S. Lily rolled over for the first time today while on the examining table, good thing Mommy and Daddy were paying attention!
 
K

KristenLilysMom

New member
She gained a POUND!! Hooray, she is now sitting just below the 15th percentile (Weight: 12lbs 12oz, Length: 24.4"). Because she gained weight we can now increase her enzymes and hopefully get some better looking stool, the Doc want us to take pictures of it so he can see what's going on, lucky him :)

P.S. Lily rolled over for the first time today while on the examining table, good thing Mommy and Daddy were paying attention!
 
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