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Old 07-06-2011, 09:50 AM   #1
Join Date: Aug 2010
Location: AR
Posts: 4
momofalmost5 HB User
Infant (3 months) Failure to Thrive. Chance of CF

My little girl is 3 months old and continues to drop in percentile for weight.
She eats all of the time (breastfed only) and pees all of the time (to establish that she gets plenty to eat). She has colic, which only means she cries all of the time and noone really knows why. I have 5 kids and breastfed all of them exclusively and did this for at least a year with all of them. I know when I have milk and I pump sometimes and see the same fat separation that I always have had. Most of my babies have gotten pretty chubby on my Breast milk, but my littlest one is not.
Other symptoms: Clogged up nose with large bogeys, constipation, she coughs, but I figure it has something to do with the clogged nose, cries a lot, lots of eye boogers everyday, I do remember that sometimes she has been wheezy too, but not too bad. She has not been "sick" yet.

Any help will be appreciated. I am mostly looking for people with kids that have been diagnosed with CF to tell me if their babies had the same symptoms or not.

Thanks so much

Old 07-08-2011, 08:29 AM   #2
Senior Veteran
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: Infant (3 months) Failure to Thrive. Chance of CF

DS was diagnosed shortly after he was born due to a bowel obstruction caused by meconium illeus. He has to take digestive enzymes due to pancreatic insufficiency -- without them he was very loose and frequent stools. When he was a baby I'd sometimes have to change him three times during one diaper change because he'd just keep pooping. Is your child's poop different from your other children's when they were babies? Is it more frequent, different color, smell....?

DS also had very thick nasal mucus. We'd have to use saline drops and the dreaded bulb syringe to try to get them out, so he could eat/breathe. His nose NEVER runs because the mucus is so thick.

He did wheeze during the winter months, but by then we were prescribed chest physiotherapy (CPT) and nebs to get rid of it. CF doctors wanted there to be no cough.

Does your baby taste salty? When you kiss her do your lips taste salty?

IMO, she does appear to have some symptoms. Does your state have newborn screening. There's obviously something going on with her, so ask your doctor to do some preliminary testing -- to rule out cf, to get her symptoms treated -- whatever may be causing it. Please note that a lot of family practice doctors aren't all that familiar wcf, so you may need to be a bit pushy; however, a parent knows in their gut that something isn't quite right with their child in terms of health issues.

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Old 07-08-2011, 08:03 PM   #3
Join Date: Aug 2010
Location: AR
Posts: 4
momofalmost5 HB User
Re: Infant (3 months) Failure to Thrive. Chance of CF

Thank you! I will have to see what I can get the doc to do. Yesterday a new doc said she was fine because she hasn't dropped 2 growth curve lines ? Problem is, she eats every hour for at least 10 min and is not gaining much weight and obviously has pain because of the constant screaming.

Old 07-08-2011, 08:27 PM   #4
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Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: Infant (3 months) Failure to Thrive. Chance of CF

The advice we were given was to ask for testing and if they refuse, ask that be put in the file "Parents requested test for xxxx and physician declined because...." Usually it won't go that far, they'll do the test, but if they refuse you may want to find another doctor.

My husband has had to remind me at times when I'm concerned about being a bother or offending someone that "we are the customer. we are paying for the service (appointment)."

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cystic fibrosis, failure to thrive, infant

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