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Thread: Possible C.F...

  1. #1
    CaToonie xlissa's Avatar
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    Sooo turns out my baby's problem was not only her tongue tie, and the milk supply. Now that she is eating an adequate amount, it turns out her body is having problems digesting food. Or so it seems, because shes eating ALOT and gaining nothing.

    They are testing for Cystic Fibrosis..

    I'm terrified. Not gonna lie.

    I hope everythings okay with her. But if its not, at least I'll know how to help her, instead of feeling so incredibly helpless all the time.
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    I also hope everything is okay with your baby-there was a Mom posting here back a year ago or so whose baby was also being tested for CF in Halifax-I am uncertain if he tested positive or negative and naturally she was as terrified as you-perhaps she will see your post and be able to offer some support having been through the same worry. Wishing you kind thoughts at a very stressful time.
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    Smart Canuck glowworm2k's Avatar
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    Oh goodness. You and your little one will be in my thoughts and prayers. Best wishes for your little one to be healthy!! <3
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    CaToonie xlissa's Avatar
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    Thanks guys. I just need to get it out! I'm so busy trying to be strong for my family that I don't get those few minutes to be terrified.

    Hopefully if it does come back positive, I'll be able to find some people to give me some advice. I've never had any experience with c.f.
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    claires mommy too! <3 gracesmommy's Avatar
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    i had a very close friend when i was a kid/teenager with it. i know how scary it can be. she's 31 now and from what i've heard doing well. thinking of you and your family. *hugs*

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    Mastermind Natalka's Avatar
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    Oh, big HUG for you! Understandable how you are feeling - just remember, no matter what, there are lots of resources out there to help you out!
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    Smart Canuck ninna's Avatar
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    Wow. How very stressful for you. I will keep you in my thoughts and prayers. Please let us know how things turn out!
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    Smart Canuck Tripsplanner's Avatar
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    First things first - how old is your baby? A lack of weight gain could be due to other factors, not necessarily CF (although it is one of the 12 typical symptoms). The reason being is that breathing is more work for CF kids so they burn all the calories they take in. My daughter was tested for CF too, so I understand your pain (she also has an identical twin which could mean "double sentence" since CF is genetic). Did you ask the Dr. why they suspect CF? Are there any symptoms present? Do you have close family members with CF?

    The initial CF test is known as the "sweat test" i.e. they literally take a swab on the skin and test it for salinity - the results should be fairly fast (we got ours within 24 hours). Is that what's being done to your daughter? And is it done at Kingston General (seeing where you are)?

    If you have more questions, just pm me. I'll be more than happy to answer your questions.
    Last edited by Tripsplanner; Thu, May 10th, 2012 at 01:55 PM.

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    CaToonie xlissa's Avatar
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    She's just over a month old. She has had incredible weight loss since she was born. In the first week she lost 2 lbs. After that she continued to lose for a little bit. Gained a little. Lost again. And is having a hell of a time gaining anything back. Even after they've had us feeding her CONSTANTLY, including through a tube so she doesn't exert as much energy eating, she has not yet reached her birth weight.

    As far as my doctors have told me, breathing is not the only reason C.F kids don't gain weight. They said also has to do with the enzymes in the pancreas, that help to break down/absorb the nutrients in food. The problem is she gains weight somewhat, but not consistently. And since she's eating ALOT, they're wondering if its a digestive problem. She doesn't look malnourished or underweight, just small. So they're thinking she's not getting all the nutrients she needs from her food. C.F is just the first suspect really. If this test comes back negative we will see a feeding specialist, and then continue testing while they continue to monitor her weight.

    We did a sweat test, but it wasn't a swab on the skin. They had to put an electric current into her arm to make her sweat, and then she wore a "coil" of sorts on her arm for half an hour to collect sweat. After that half an hour we brought her back to the room to have it removed.Unfortunately for us the first test did not collect enough of a sample, so we have to redo again next week. It was not done at KGH though, instead was done at Hotel Dieu, as that is where the Childrens Outpatient Center, and our pediatrician is located.

    I really do think the waiting is the hardest part. Not knowing what the problem is is difficult, because the doctors, and us, have no idea how to help her because of it.

    As for symptoms, I'm not really sure what symptoms to look for, its kinda just been a whirlwind of testing the past week, of not just C.F but a whole list of other things as well.

    We don't have family members with C.F but the doctor says there is a chance we have a family of carriers.
    Last edited by xlissa; Thu, May 10th, 2012 at 05:20 PM.
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    Smart Canuck alicia's Avatar
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    You and your family are in my thoughts as you go trough ths excruciating wait.

    I am not a parent so forgive my ignorance - are you breast feeding?
    My sister breastfed and her son was ALWAYS hungry and losing weight even though he was eating tonnes. Turned out she ate like crap (which we knew) but then there wasn't any "good stuff" in the milk for him to get. Perhaps it is a similar situation?

    Hope you get your results soon, either way.
    Last edited by alicia; Thu, May 10th, 2012 at 09:56 PM.
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    CaToonie xlissa's Avatar
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    We breastfeed and formula feed. All by bottle. We couldn't breastfeed exclusively because I don't have a high amount of milk, just enough for a few bottles. So she gets that at bed time, and formula during the day.
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  12. #12
    Hmmmmm
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    Gosh I hope the doctors figure this out for you soon. Your stress levels must be out of whack. Give her lots of snuggles!

  13. #13
    Smart Canuck Tripsplanner's Avatar
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    With my daughter, she tested positive for a CF bacteria (pseudomonas something). She was chronically underweight and had tons of respiratory problems. And you are right on the sweat collection, I checked with my hubby - the swab was oral and nasal. At that time, she was already admitted at Sick Kids for pneumonia. After her 3rd back-to-back pneumonia, the Dr. did all sorts of test to figure out why. And because she was already at Sick Kids, the test turn around was fairly fast.

    I hear you on the waiting part. Like I said especially my daughter has an identical twin sister. And despite having dealt with a lot of my children's medical issues (they were born micro premies) it was by far the scariest diagnose I had to wait for.

    Here is to hoping and praying that it will turn out to be something else. If it is feeding issues, feel free to ask me questions. Been there, done that. One of my girls has a feeding tube and still gets high- calorie milk through the tube at night.

    Big Hug!
    Last edited by Tripsplanner; Thu, May 10th, 2012 at 11:34 PM.

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    CaToonie xlissa's Avatar
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    Its been one issue after another since she was born to be honest.

    Right before she was born, I was admitted to hospital because of gallbladder complications. They couldn't do anytihng about it until she was born, so they kept me there, hopped up on pain meds. They started my induction the first day, but then the hospital got "too busy" so I was left half dialated and told that they'd finish my induction when things died down. A WEEK later, I went into labour on my own. LoL.

    But then she was jaundice. And then she was too lethargic. I had to see the NICU doctor twice while I was there about her not waking up to eat. The doctor said she felt it was just that she had her days and nights backwards. But when we got home it didn't get better.

    She ended up losing 2 lbs the first week, and then more after that. I was told babies are supposed to ideally gain 30g a day after birth, she was gaining anywhere from 2-15, if she was gaining at all. It got to the point where they thought she was going to be dehydrated, because they thought the problem was that she wasn't eating enough.

    They found her tongue tie. Fixed that. Thought that would help. But it didn't.

    So they tested her sodium levels and her liver, and she was not dehydrated at all. So they went back to just monitoring her weight.

    But 2 weeks later she has still only gained a few ounces so we were sent to see a pediatrician to see about getting admitted to the pediatric floor at the hospital. They've been monitoring us ever since, but because of the lack of dehydration, I believe THATS why they've been searching for another reason. Because if it was simply she wasn't getting enough, she'd show SOME sign of dehydration.

    Sorry for so much talking.. its just the only thing literally keeping me sane atm. Waiting until next week is driving me crazy. And now shes started wheezing and coughing, especially when she's laying down. So I don't know if she has a cold or what. I might stop by the family doc early next week just for a checkup, before we have to see the pediatrician.
    <3<3 My girls are my wold <3<3
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  15. #15
    Smart Canuck
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    Big hugs to you and your family, hope everything will turn out well in the end

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