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Thread: Enzymes related Newborn with (probable) CF

  1. #1
    Junior Member
    Join Date
    Nov 2019
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    3

    Enzymes related Newborn with (probable) CF

    My wife and I found out we were carriers of CF early in the pregnancy. Our son is now 4 weeks old and he has had some GI issues with bad gas and pretty disturbing looking stool. He is also having some issues keeping weigh on and the doctor wants us to supplement with formula but we refuses to take the milk when put the formula in. We are all assuming he has CF since both his newborn screenings came back positive but are still waiting on the sweat test (he's too small for it now).

    My question is, will the enzymes help him with his GI issues? Do you generally see an immediate positive reaction from them (not pooping after pretty much every feeding/less gas problems)? Will he be able to start putting weight on?

    Apparently he will be the only person in world known to have this combination of mutations so there is no information to go off of in terms of predictions based on others so I was just hoping to get some answers regarding how the whole enzyme supplementation works. Thanks!

  2. #2
    Senior Member
    Join Date
    Sep 2016
    Posts
    219
    If genetic screening came back positive, then he has CF. Sweat Tests are a bit of a challenge as some CF patients have had negative results on sweat tests. When it comes to enzymes, they will help him gain weight, however GI issues may always be an issue despite enzymes. Making sure he gets enough calories in is a key essential thing to gaining weight as we need more to help gain and fight off infections.

  3. #3
    Super Moderator
    Join Date
    Apr 2006
    Posts
    20,957
    Ds had a normal sweat test at 3 weeks, but was born with a bowel obstruction and genetic tests indicated cf. his symptoms were mainly digestive and sinus. He started enzymes right away, but still had digestive issues. Frequent, loose stools. We managed to keep his weight at 50th percentile with higher calorie formula -- more powder to water ratio. He hated pregestimil which was a pre digested cf formula, so we stuck with regular formula. He started to have normal stools once he began to eat solid foods and switched to who,e milk
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

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