To: Parents of CF babies under 6 months of age

D

datca1994

New member
Hello everyone! My son is 4-months old with the following mutations of CF: 1525-1G>A and W496X. I understand that this does not necessarily help with the prognosis so I have no questions to that end but would like to know the experinces of other babies with CF.

He takes enzymes (Creon 5 max 10 a day based on his weight), takes 1 ml of liquid vitamin, uses a nebulizer once a day, we do a few minutes of chest therapy each day, and his chest x-ray came out clear.

His stomach growles loudly during or right after feedings, during which he cries. Also, I've noticed since using the nebulizer he is coughing a bit more. But I can't tell if he is just coughing to clear his throat or, more serious, to get rid of something in the lungs.

Is stomach growling CF related? This is my first child so I do not know if it is common in all babies or more so in babies with CF? Do babies with CF cough heavily or loudly?

I look forward to reading about your experinces.

April in Virginia Beach
 
D

datca1994

New member
Hello everyone! My son is 4-months old with the following mutations of CF: 1525-1G>A and W496X. I understand that this does not necessarily help with the prognosis so I have no questions to that end but would like to know the experinces of other babies with CF.

He takes enzymes (Creon 5 max 10 a day based on his weight), takes 1 ml of liquid vitamin, uses a nebulizer once a day, we do a few minutes of chest therapy each day, and his chest x-ray came out clear.

His stomach growles loudly during or right after feedings, during which he cries. Also, I've noticed since using the nebulizer he is coughing a bit more. But I can't tell if he is just coughing to clear his throat or, more serious, to get rid of something in the lungs.

Is stomach growling CF related? This is my first child so I do not know if it is common in all babies or more so in babies with CF? Do babies with CF cough heavily or loudly?

I look forward to reading about your experinces.

April in Virginia Beach
 
D

datca1994

New member
Hello everyone! My son is 4-months old with the following mutations of CF: 1525-1G>A and W496X. I understand that this does not necessarily help with the prognosis so I have no questions to that end but would like to know the experinces of other babies with CF.

He takes enzymes (Creon 5 max 10 a day based on his weight), takes 1 ml of liquid vitamin, uses a nebulizer once a day, we do a few minutes of chest therapy each day, and his chest x-ray came out clear.

His stomach growles loudly during or right after feedings, during which he cries. Also, I've noticed since using the nebulizer he is coughing a bit more. But I can't tell if he is just coughing to clear his throat or, more serious, to get rid of something in the lungs.

Is stomach growling CF related? This is my first child so I do not know if it is common in all babies or more so in babies with CF? Do babies with CF cough heavily or loudly?

I look forward to reading about your experinces.

April in Virginia Beach
 
M

mtgreen30

New member
When my son was an infant he cough alot and very loudly and always junky sounding. I'm not sure about the tummy rumbling. Maybe his formula is causing him to experience gas or bloating.
 
M

mtgreen30

New member
When my son was an infant he cough alot and very loudly and always junky sounding. I'm not sure about the tummy rumbling. Maybe his formula is causing him to experience gas or bloating.
 
M

mtgreen30

New member
When my son was an infant he cough alot and very loudly and always junky sounding. I'm not sure about the tummy rumbling. Maybe his formula is causing him to experience gas or bloating.
 
R

Ratatosk

Administrator
Staff member
Could be reflux. Especially if he's crying after feeding. DS was on zantac for the first year because of reflux -- upset tummy, spit up... He was also a terrible burper -- could never get a burp out of him.

The other thing is the enzymes -- ours was always based on how much he ate, not his weight. Remember being so frustrated at the time trying to figure out if he was getting enough enzymes, not enough. Was he pooping enough, too much....
 
R

Ratatosk

Administrator
Staff member
Could be reflux. Especially if he's crying after feeding. DS was on zantac for the first year because of reflux -- upset tummy, spit up... He was also a terrible burper -- could never get a burp out of him.

The other thing is the enzymes -- ours was always based on how much he ate, not his weight. Remember being so frustrated at the time trying to figure out if he was getting enough enzymes, not enough. Was he pooping enough, too much....
 
R

Ratatosk

Administrator
Staff member
Could be reflux. Especially if he's crying after feeding. DS was on zantac for the first year because of reflux -- upset tummy, spit up... He was also a terrible burper -- could never get a burp out of him.

The other thing is the enzymes -- ours was always based on how much he ate, not his weight. Remember being so frustrated at the time trying to figure out if he was getting enough enzymes, not enough. Was he pooping enough, too much....
 
K

Keirasmom

New member
Hi,
My daughter who is 7 months old always has rumbly tummy after she eats. I would guess that it is gas. We giver her zantac 3 times a day to help with reflux. We don't use Creon enzymes we use Pancreacarb and she takes 4 with everything she eats.
My daughter does cough after therapy beacuse it loosens things up.... So, it is working.
If you have any other questions, you can ask.
Rebecca
 
K

Keirasmom

New member
Hi,
My daughter who is 7 months old always has rumbly tummy after she eats. I would guess that it is gas. We giver her zantac 3 times a day to help with reflux. We don't use Creon enzymes we use Pancreacarb and she takes 4 with everything she eats.
My daughter does cough after therapy beacuse it loosens things up.... So, it is working.
If you have any other questions, you can ask.
Rebecca
 
K

Keirasmom

New member
Hi,
My daughter who is 7 months old always has rumbly tummy after she eats. I would guess that it is gas. We giver her zantac 3 times a day to help with reflux. We don't use Creon enzymes we use Pancreacarb and she takes 4 with everything she eats.
My daughter does cough after therapy beacuse it loosens things up.... So, it is working.
If you have any other questions, you can ask.
Rebecca
 
E

eli

New member
I was just thinking, isn't 4months to young to using a nebuliser. Maybe its a dumb question, but it just seems to young.<img src="i/expressions/face-icon-small-confused.gif" border="0">

As for other treatments, we do cpt 20 mins a day, vitabdeks 1/2 cap 3 times a week, creon 5's 10-12 a day, and flucloxacillan oral antibiotics 21/2 ml twice a day.

That's all i can think of right now.....
 
E

eli

New member
I was just thinking, isn't 4months to young to using a nebuliser. Maybe its a dumb question, but it just seems to young.<img src="i/expressions/face-icon-small-confused.gif" border="0">

As for other treatments, we do cpt 20 mins a day, vitabdeks 1/2 cap 3 times a week, creon 5's 10-12 a day, and flucloxacillan oral antibiotics 21/2 ml twice a day.

That's all i can think of right now.....
 
E

eli

New member
I was just thinking, isn't 4months to young to using a nebuliser. Maybe its a dumb question, but it just seems to young.<img src="i/expressions/face-icon-small-confused.gif" border="0">

As for other treatments, we do cpt 20 mins a day, vitabdeks 1/2 cap 3 times a week, creon 5's 10-12 a day, and flucloxacillan oral antibiotics 21/2 ml twice a day.

That's all i can think of right now.....
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>

I was just thinking, isn't 4months to young to using a nebuliser. Maybe its a dumb question, but it just seems to young.<img src="i/expressions/face-icon-small-confused.gif" border="0">



As for other treatments, we do cpt 20 mins a day, vitabdeks 1/2 cap 3 times a week, creon 5's 10-12 a day, and flucloxacillan oral antibiotics 21/2 ml twice a day.



That's all i can think of right now.....</end quote></div>


I am curious as to what has you thinking this? A neb (depending on the med in it) is to open up the airways and/or loosen secretions. With a CFer (no matter what age) that seems like a positive thing. Just trying to understand where your thoughts are coming from.....
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>

I was just thinking, isn't 4months to young to using a nebuliser. Maybe its a dumb question, but it just seems to young.<img src="i/expressions/face-icon-small-confused.gif" border="0">



As for other treatments, we do cpt 20 mins a day, vitabdeks 1/2 cap 3 times a week, creon 5's 10-12 a day, and flucloxacillan oral antibiotics 21/2 ml twice a day.



That's all i can think of right now.....</end quote></div>


I am curious as to what has you thinking this? A neb (depending on the med in it) is to open up the airways and/or loosen secretions. With a CFer (no matter what age) that seems like a positive thing. Just trying to understand where your thoughts are coming from.....
 
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