Should I push for testing?

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mom24cjs

New member
I have lurked on this forum for awhile now & you all are a wealth of information! My daughter is 6 months old and was 6lbs 6oz at birth. She dropped to 5lbs 12oz. before leaving the hospital 48 hours after birth. Since that time her doctor has been concerned over her slow weight gain. She currently weighs 12lbs. 10oz and remains under the 5th percentile. We take her in & weigh her monthly. She is exclusively breastfed & just now starting to be introduced to solids.
At her 2 month check up her doc mentioned CF but wasn't that concerned due to no family history. She had a bad cold at 7weeks with a nasty cough that seemed to linger. Two weeks ago she was hospitalized for 5 days for what they called bronchiolitis. She couldn't keep her o2 levels above the mid 80's without supplemental oxygen.
When I took her for a check up after her hospitalization her doctor wants her to come back and be weighed at 7 months before we start checking into the problem. She wants to see if she can put on weight with eating solids regularly. This seems so stupid to me A) for the fact that she should still be getting the majority of her calories from breastmilk & B) breastmilk has more calories than food.
Her stools don't smell horrible, they mostly look like breastfed poo but she does go everyday & sometimes up to 4 times. They almost always blow out of the diaper (no matter what brand) and sometimes seem mucousy. Never have noticed greasy stools. I don't notice a salty taste to her but she doesn't really sweat yet.
I guess my question for you is should I be pushing for testing sooner than 3 weeks from now? I've been wracking my brain trying to figure what could be wrong with her but her newborn screens all came back negative.
Thanks!
 
M

mom24cjs

New member
I have lurked on this forum for awhile now & you all are a wealth of information! My daughter is 6 months old and was 6lbs 6oz at birth. She dropped to 5lbs 12oz. before leaving the hospital 48 hours after birth. Since that time her doctor has been concerned over her slow weight gain. She currently weighs 12lbs. 10oz and remains under the 5th percentile. We take her in & weigh her monthly. She is exclusively breastfed & just now starting to be introduced to solids.
At her 2 month check up her doc mentioned CF but wasn't that concerned due to no family history. She had a bad cold at 7weeks with a nasty cough that seemed to linger. Two weeks ago she was hospitalized for 5 days for what they called bronchiolitis. She couldn't keep her o2 levels above the mid 80's without supplemental oxygen.
When I took her for a check up after her hospitalization her doctor wants her to come back and be weighed at 7 months before we start checking into the problem. She wants to see if she can put on weight with eating solids regularly. This seems so stupid to me A) for the fact that she should still be getting the majority of her calories from breastmilk & B) breastmilk has more calories than food.
Her stools don't smell horrible, they mostly look like breastfed poo but she does go everyday & sometimes up to 4 times. They almost always blow out of the diaper (no matter what brand) and sometimes seem mucousy. Never have noticed greasy stools. I don't notice a salty taste to her but she doesn't really sweat yet.
I guess my question for you is should I be pushing for testing sooner than 3 weeks from now? I've been wracking my brain trying to figure what could be wrong with her but her newborn screens all came back negative.
Thanks!
 
R

Ratatosk

Administrator
Staff member
I would push for testing. A number of us have no family history of CF and yet, here we are. Stools may look unremarkable because BM is more easily digestible.

I would push for testing. I would also request they do a CF culture to see if she might be growing any CF bugs and also a fecal fat tst to see if she's malabsorbing.

DS was formula fed a higher calorie formula and because he got most of his calories from that, I was very concerned about switching him to whole milk and solids. In fact I kept him on formula (toddler) until he was 18 months old. And instead of baby food, we pretty much ground up regular table food as baby food is low in fat and sodium and he needed more calories.
 
R

Ratatosk

Administrator
Staff member
I would push for testing. A number of us have no family history of CF and yet, here we are. Stools may look unremarkable because BM is more easily digestible.

I would push for testing. I would also request they do a CF culture to see if she might be growing any CF bugs and also a fecal fat tst to see if she's malabsorbing.

DS was formula fed a higher calorie formula and because he got most of his calories from that, I was very concerned about switching him to whole milk and solids. In fact I kept him on formula (toddler) until he was 18 months old. And instead of baby food, we pretty much ground up regular table food as baby food is low in fat and sodium and he needed more calories.
 
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CJPsMom

New member
Get tested - just in case. We had no family history either and we have a little CFer. The early years are critical and weight gain plays a huge role in lung health.
I'm surprised your doctor isn't concerned that your little one is only 12 pounds at 6 months. A healthy infant should double its weight by 4 months. You're just barely there. Due to weight gain concerns we had a feeding tube placed at 7 months when our LO was 14 pounds.
 
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CJPsMom

New member
Get tested - just in case. We had no family history either and we have a little CFer. The early years are critical and weight gain plays a huge role in lung health.
I'm surprised your doctor isn't concerned that your little one is only 12 pounds at 6 months. A healthy infant should double its weight by 4 months. You're just barely there. Due to weight gain concerns we had a feeding tube placed at 7 months when our LO was 14 pounds.
 
P

Printer

Active member
She should be tested TODAY. This world is full of Doctors who don't have a clue about CF. I'm 72 and I was dx at age 47. There has NOT been anyone in my family DX before or after me.

Bring your daughter to an APPROVED CF CENTER as soon as possible.

Your Doctor IS NOT QUALIFED to dx CF, and you can tell him/her that I said that.

Bill
 
P

Printer

Active member
She should be tested TODAY. This world is full of Doctors who don't have a clue about CF. I'm 72 and I was dx at age 47. There has NOT been anyone in my family DX before or after me.

Bring your daughter to an APPROVED CF CENTER as soon as possible.

Your Doctor IS NOT QUALIFED to dx CF, and you can tell him/her that I said that.

Bill
 
C

ccsalema

New member
My son tested positively for CF at 4.5 mos old and was salty even then...quite noticeably. Get tested just for peace of mind...
 
C

ccsalema

New member
My son tested positively for CF at 4.5 mos old and was salty even then...quite noticeably. Get tested just for peace of mind...
 
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Tobit

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> Stools may look unremarkable because BM is more easily digestible. </end quote>
My first thought was "why would someone be digesting a bowel movement?" Then I realized my gross error.
 
T

Tobit

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> Stools may look unremarkable because BM is more easily digestible. </end quote>
My first thought was "why would someone be digesting a bowel movement?" Then I realized my gross error.
 
R

Ratatosk

Administrator
Staff member
Gordon... Ewww! <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for the salty tasting child... DS passed his sweat test with flying colors and really wasn't salty tasting until he was about 5-6 months old. We'd kiss him and our lips would taste salty.
 
R

Ratatosk

Administrator
Staff member
Gordon... Ewww! <img src="i/expressions/face-icon-small-smile.gif" border="0">

As for the salty tasting child... DS passed his sweat test with flying colors and really wasn't salty tasting until he was about 5-6 months old. We'd kiss him and our lips would taste salty.
 
A

Anomie

New member
Your doctor is an idiot for making that comment about family history when so little has been understood about cf until recently. GET A SECOND OPINION NOW. No one in my family ever had cf same with the mother's family however our daughter has it. BTW alot of people on both sides of our family died from unknown respiratory causes. People with CF can't digest their food properly without synthetic enzymes and if she has cf then she is failing to thrive simply due to starvation. Also you won't notice grease in her stool until she's on solid food. Test her now rather than later. If she already has the lung involvement then PERMANENT DAMAGE is being done everyday she's not properly treated.
 
A

Anomie

New member
Your doctor is an idiot for making that comment about family history when so little has been understood about cf until recently. GET A SECOND OPINION NOW. No one in my family ever had cf same with the mother's family however our daughter has it. BTW alot of people on both sides of our family died from unknown respiratory causes. People with CF can't digest their food properly without synthetic enzymes and if she has cf then she is failing to thrive simply due to starvation. Also you won't notice grease in her stool until she's on solid food. Test her now rather than later. If she already has the lung involvement then PERMANENT DAMAGE is being done everyday she's not properly treated.
 
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ForeverDance

New member
I just wanted to add that my daughter's bowel movements looked pretty much like a breastfed baby's with the exception that she would always blow out the diaper. I was actually kind of surprised when we found out she was pancreatic insufficient because of that. I would definitely push for the testing as soon as possible.
 
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ForeverDance

New member
I just wanted to add that my daughter's bowel movements looked pretty much like a breastfed baby's with the exception that she would always blow out the diaper. I was actually kind of surprised when we found out she was pancreatic insufficient because of that. I would definitely push for the testing as soon as possible.
 
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