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    Old 03-07-2005, 06:36 AM   #1
    ASDGRMama
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    toddler with chronic condition

    I am making an appointment to take my daughter in this week but wanted to see what everyone here thinks about our situation first.

    My daughter was born weighing 8lbs. 8oz. She was a good size and appeared healthy in every respect. At two months she became ill with pneumonia (It was August, not exactly sick season in Michigan; I was breastfeeding and none of my other children were ill). At 7 months she became ill with pneumonia again. She has since had almost constant congestion and runny nose (with wheezing).

    Since she was born she has had very mucous-y stools (I even avoided dairy during the entire time I was breast feeding). She has never been a good gainer. She would gain 1/2 a pound only to lose it again. She was 15 lbs. at 12 months and now at 21 months she is only 19 lbs.

    She seems very tired for a toddler and her hands turn purple when she's crying or very active (going down the stairs will do it).

    I don't know very many details about CF but in the one post I read that their child has very thin arms and legs with a round belly. We've always joked that she looks like those ethiopian children on the commercials with their tiny limbs and round bellies. Of course we are not laughing now and will be taking her in.

    I am requesting various tests for her (including diabetes and celiac disease) but is there anything I should keep in mind concerning CF or the testing involved?

    Thanks for any comments on this!

    Love and Prayers, Kelly

     
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    Old 03-07-2005, 06:48 AM   #2
    luvmygirls
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    Re: toddler with chronic condition

    Hi,
    I know this must be an uneasy time for you. Just be sure the sweat test (gold standard test for CF) is done at a CFF accredited facility, where they are properly trained. My child w/ CF was born at a healthy weight and at about 2 months of age starting w/ the coughing, wheezing and lack of significant weight gain. Her sweat test was done at our local hospital and it came back inconclusive. She was then sent to a CFF accredited hospital where the test was done twice and both times was in the positive range for CF. She is now 2 1/2 years old. She also had the frequent, oily stools, rounded belly, fingers shrivel rapidly in water, salty skin. I wish you and your family the best.

     
    Old 03-07-2005, 06:48 AM   #3
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    Re: toddler with chronic condition

    I would ask for a sweat test to test for CF. If they're going to be taking blood, you may also ask that they do genetic testing. I recently met a woman who's grandchild was diagnosed as a toddler -- they did the sweattest to rule out CF. Also, does your child taste salty-- when you kiss her forehead to your lips taste salty?

     
    Old 03-09-2005, 06:12 AM   #4
    ASDGRMama
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    Re: toddler with chronic condition

    Hello! Thank you for replying. I haven't noticed that she tastes salty at all (I licked her yesterday to see ).

    Her congestion seems to be clearing up but we're keeping our appt. It's not until the 28th. My primary concern is her inability to gain very well and the fact that she has had a chronic runny nose and periodic wheezing since she was 2 months old.

    Of course I'm hoping for a clean bill of health but I know something is wrong and Lord-willing it's nothing serious (I suspect it's just allergies).

    Is there a difference between having fatty stools and mucous-y stools? Sorry to be so descriptive but sometimes her stools are nothing but what looks like snot (kind of a yellow gelatin). They're always stringy with mucous. She wears diapers so I have no idea if they float but they're usually greyish when they're not slimy.

    I really am sorry to be so descriptive but I don't understand what it means to have "fatty stools".

    Well, thank you again for replying!

    Love and Prayers, Kelly

     
    Old 03-09-2005, 07:54 AM   #5
    cfmommy
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    Re: toddler with chronic condition

    I still have NO idea what I'm supposed to look for in terms of normal/abnormal poop. The doctors told me that we'd KNOW. I do know if DS has something with more fat his poo is a little runnier, sometimes smells like feta cheese. And the other day he woofed down a ham patty without enzymes (grandpa was "watching him")and the next morning day care reported a major diaper blowout.

     
    Old 03-09-2005, 07:07 PM   #6
    ASDGRMama
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    Re: toddler with chronic condition

    So the more fat they consume the more fat will be in their stools? Are the enzymes because the pancreas doesn't produce them? Does it seem to help quite a bit?

    Sorry about asking so many questions . I'm very curious about it all. I'm hoping they'll just tell me that my daughter has allergies. We'll see I guess. I was getting a little anxious about it while reading the symptoms of CF. I keep reminding myself that the symptoms she has are common to a lot of conditions and most are not serious. I'm not sure if it's working though .

    I'm wondering now if she would benefit from an over-the-counter enzyme supplement anyway since she's obviously not gaining well. Hmm something to think about I guess.

    Love and Prayers, Kelly

     
    Old 03-10-2005, 06:21 AM   #7
    mommyfullohope
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    Re: toddler with chronic condition

    Hi - I hope you get good news on all of your tests.

    My daughter sometimes has mucusy stools, but mostly we see the oily stools. They look like oil is literally sitting on the stool. Sometimes it all still gets confusing to us, too. Sometimes I think they look oily and my husband doesn't so I am still not always sure. I do know that when my daughter's are at their worst, they get pale and grayish so I would definately have your child tested.

    Good luck and I wish you the best but remember - with all of the new treatments, CF is not as bad as it used to be. Hang in there.

     
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