CF signs in newborn?

tedandjulie

New member
I was just wondering if anyone out there experienced any visible signs of CF in their newborns, other then the bowel blockage. Did any of you have the abnormally smelly (oily consistency) stools (or gas) at this stage?

My wife and I are both carriers for CF and are awaiting screening results for our new baby girl. Just thought I would ask while we wait...
 

anonymous

New member
yes both of my children had foul smelling stools and they were oily. My son had what they said was acid reflex even when I nursed him. And boy did they go through the formula. About 16 of the small cans of powder. My son was diagnosed a 1 yr and his sister the next day at almost 5yrs. I since have had a third child and she does not have cf nor is she a carrier of the cf gene. Once my two cf children were put on enzymes the stools were more formed and it was alot better. My son is now 5 and my daughter 9 both with cf and the baby is 2. Of course my to cf children are on quite a bit of medicaitons they are doing good. My son has had his share but is making a turn around lately. Hope everything goes well. If you have any questions feel free to email me at www.burkhalter_95@sbcglobal.net.

Mom to Sydney 9 w/cf, Trey 5 w/cf and Abbey 2 w/out cf
 

3timesthefun

New member
Hi, I have three with CF. One fo mine had the classic goul smelling stools from early on. His stools were also very greasy, his bottom often looked like you had sprayed pam on it. He too had severe reflux, we had to give him mediaction and feed him in 5ml sessions, burping in between, he also wore an apnea monitor, because he tended to have bradycardic episodes while feeding. He did have a meconium illeus with surgery at birth. The other two weren't diagnosed till age three. Good luck, I know the wait can seem forever.
 

anonymous

New member
my son , who is 8 yrs old, was "normal" in every way until he had pnuemonia just after 6th birthday. he was diagnosed three weeks later, what a shock!!!!!!!!!!! in hindsight he had foul smelling pale poos. can you believe we thought they were normal!!!!!!! blimey!!!!! his nappies used to stink the house out. <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> bless him.
 

JRPandTJP

New member
yes, our son's stools were frequent (which is tough to tell with newborns) but his stools never changed from green to normal yellow/tan breastfed stools. They did not smell at all but I think this happens more with formula. We thought he was sensative to the dairy so I at so we eliminated that from my diet first. That didn't change anything. He had vitamin K deficiency by 7 weeks which showed as small bruises on his ankle and torso (bruising on newborns is not normal, ever). We ended up in hospital for that and that sent us on a long road of not knowing the cause of these things for another 7 weeks (lots of follow-up blood work, 2 insufficient sweat tests). By then his liver enzymes were not normal and his protein had gotten even lower with swelling and a rash from zinc deficiency.

Ben was quite a severe case of pancreatic insufficiency and once he was diagnosed and we got him on enzymes his nutrition status changed very quickly. He is a happy 2 year old now and only take enzymes and vitamins. He is was fully breastfed (after lots of pushing) and is now in the 50% for weight.

Warmly,
Jody
 

JRPandTJP

New member
oops...I forgot to say you are very blessed to know prior to birth either way. We wished we had at least had the newborn screening.

Hoping for a negative and a healthy, happy pregnancy ;-)

Jody
 

anonymous

New member
Jody,

My name is Kristen and I have a 2 yr old daugh w/cf. She is doing well! Just wondering if Ben takes any other meds, like nebs?

Kristen
Kyndall 2yr w/cf
Tanner 4yr w/o cf
 

babyjaden2004

New member
Jaden had the greasy, foul smelly stools as well. There were days when they'd look fine then be orange and greasy. She really hasn't had any major issues so far and has been doing good.
 

JRPandTJP

New member
Kristen,

Ben only takes Creon 10 2/meal and vitamins. He just stopped Pepcid at 18 months. We do inhaled GSH and just started oral GSH as well.

He has no resp. issues. He did culture pseudo once but has been clear since we treated it and have been using GSH. We will be starting the vest in a month or so.

He is also doing great and is just as normal as could be.

Warmly,
Jody
 
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