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Thread: Negative sweat chloride, cf still possible?

  1. #1

    Negative sweat chloride, cf still possible?

    Hello! I have joined this group because Iím trying to get some ideas on what could be going on with my two year old. Warning: this may be a long explanation
    He was born with gastroschisis (intestines outside of his body) at 37wks, and was 3lbs 6oz. He has struggled to gain weight and Has almost never been on the growth chart. He now has a gtube that gives him most of his nutrition. There is no reason for him to
    Not be able to eat and gain weight, and they donít know why he was so tiny. He has been delayed in a lot of areas due to being in and out of the hospital his whole life between vomiting and tummy issues, to needing oxygen for every virus that hit him. Heís not diagnosed with asthma but they treat him as such. He has ear tubes from numerous ear infections, has had two gtube surgeries, and recently had his tonsils/adenoids removed to help with sleep apnea. He has a chronic cough. Heís had pneumonia 3 times in his life. Heís had RSV 3 times. He is only 2 and 1/2 years old, and heís in 18-24 month clothing and has been for almost a year. Iíve looked up every lung issue that he could possibly have and the only thing that makes a little sense is cf, or an immunodeficiency to explain why he gets sick so easily and so severely with such simple virusí. We have done a sweat chloride test and it was negative. Iím asking his geneticist about cf genetic testing and he sees an immunologist in March. Has anyone ever been positive for cf in genetic testing with a negative sweat chloride? Does this sound like it could be cf? I know there is something Underlying and Whatever it is, I want to do whatever is best for him as soon as possible.
    Thanks so much for any advice!

  2. #2
    To me this doesn't sound like CF but more of an immune issue. I know with small children, it's really easy and really common to get RSV which can lead to pneumonia. They're all viral and that's hard to avoid, but both which usually require hydration and oxygen even in adults. CF patients are diagnosed mainly based on their sweat chloride test due to our salty skin so a negative test is pretty accurate.

  3. #3
    When you say sweat test was negative, what were the numbers, how old was he at the time and was it done at a cf facility? What do his stools look like? Are they normal, greasy, floating, frequent, bulky...? Was he tested via newborn screening for cf?
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  4. #4
    He got 19 and 11, it was done at the childrenís hospital lab, so Iím not sure? He was 2 when it was done. They have been bulky, but he also goes through periods of diarrhea. He rarely has normal healthy stools. Iím honestly not sure if he was tested as a newborn? I should mention, he did not get pneumonia from RSV each time, and heís been hospitalized a good 20-30 times in his life needing oxygen for whatever reason, generally wit a virus or cold of some sort, and they donít really know why, but theyíd say his lungs rarely sound wheezy, just more coarse and crackly. And his sister has the same issues, just not to his extreme. We chalked it up to a gluten/wheat allergy with her tummy issues, and they said she has asthma. But she just got pneumonia and now Iím wondering if there isnít something else going on with her because she has a constant brutal wet cough as well. But who knows, I could be paranoid lol

  5. #5
    19 and 11 are way too low for CF. 40-60 would be considered borderline. I'm so sorry you're struggling with all this. I can't imagine how frustrating this must be for you.

  6. #6
    I do understand that is significantly low, but I have read about families with negative sweat chloride who still ended up with positive genetic testing, even if considered a mild form. I would love to at least rule it out because it is one of the only few things that makes sense with all he has been through this far. But thank you! Iím in the process of trying to get the testing, so we will see if it goes through or not. Iím also waiting for an immunology appt. so maybe I will get some answers for him there. I appreciate any input and/or advice though!

  7. #7
    The reason I asked about stools and the sweat test numbers is because maybe you could ask if they could do a fecal fat test to test for pancreatic insufficiency.

    DS had a sweat test at 3 weeks and it was 32; however, he was a very teeny tiny baby and sweat tests at that age if low, weren't always accurate because as he got older, he was very salty. Your child was older when tested.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  8. #8
    I have been checking out his stools much more recently because I donít really
    Know what people mean by oily and greasy, but he has lots of stools that are more on the slimy side that when he wore diapers, would soak into the diapers quite a bit, but Iím not sure if thatís what you mean. I will mention it to his pediatrician and see what she thinks. But Iíve decided to wait it out on a few appts (immunology, pulmonology), to see if we can get answers that are not cf related first before pushing for genetic testing. But Iím otherwise at a loss, so hoping for some answers to best know how to help him! Thanks for the input!

  9. #9
    If ds doesn't take enough enzymes (creon) his stools are not well formed, break apart easily when I flush and leave a residue at the waterline, float or "stinkers not sinkers". He also would stool frequently, not just once or twice a day, but every few hours if not more. Sometimes his stools would be yellowish with green flecks or orangish. I didn't see a normal brown, well formed poo until we got his digestive issues figured out.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  10. #10
    My son has low sweats and 2 mutations. His diagnosis is CRMS though and not CF since his sweat is so low. While it is possible to have the genetics even with a negative sweat, USUALLY (and there are always some exceptions but almost always) a sweat that low wouldn't be associated with pancreatic insufficiency - which is what causes the classic Failure to Thrive in CF kids. Most kids with low sweats have residual cftr function and remain pancreatic sufficient. So they would not have the same issues with weight/growth commonly related to CF. I would think it's very unlikely that his GI issues are related to Cystic Fibrosis. I don't think genetics to rule things out in the presence of symptoms are ever a bad idea so I wouldn't dissuade you from the genetics testing to be sure of course but I would think there is another cause out there personally.

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