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Thread: Unexplained Decline

  1. #1

    Unexplained Decline

    My son has CRMD, (DF508 & 5T/12TG) diagnosed at age 7, and is now 14. He's only had some mild digestive issues, but never any lung involvement. He sees his CF doctor every 6 months for routine testing and he's always had a clean bill of health, FEV1% at 100 or higher, and never cultured anything out of the ordinary. Yesterday he had his routine appointment and his FEV1% dropped 21%! That still puts him at 87%, but I was not expecting such a decline in that score. He has been exercising more than he ever has, his lungs sounded clear, and he hasn't noticed any changes. We go back in 3 months to see if we can get his scores back where they should be. At this point I'm more curious than worried. Any ideas as to what could cause a sudden drop like that?

  2. #2
    Senior Member
    Join Date
    Sep 2016
    You mentioned mild digestive issues. Is he suffering from acid reflux? My lung functions took a 30% drop because mine had gotten worse and the acid from my stomach was getting into my lungs. It can be controlled with medication but it might not fully fix the problem. I had to have surgery to fix it, but my numbers are going back up slowly. If so follow up with a GI specialist and see if he is suffering from GERD. It took my doctors and I three years to figure this out. It's something that can be fixed rather quickly. Just my thoughts and experience.

  3. #3
    He's never mentioned any symptoms that would make me think he has acid reflux, but I guess it's possible. My husband has GERD and he never knew until a dentist saw wear on his teeth. He never felt any pain from it. I'll bring that up as a possibility. Thanks!

  4. #4
    Super Moderator
    Join Date
    Jul 2007
    I would definitely get him checked for gerd.

  5. #5
    Have his blood sugar checked. When I developed CFRD, it was very hard to catch because it did NOT show up in my A1C, and becaue my clinic appts were always just before lunch, I hadnt eaten in hours and my blood sugar had plenty of time to nomalize, so my non-fasting BS was just fine. However, I WAS a diabetic, with sugars going up into the 400's, and it was directly related to a large lung function decline. I caught it by being proactive and getting a simple test kit from the grocery store and taking my reading right before I ate, 1 hour after, and 2 hours after. Did that for a week and gave the numbers to the doc who immediately sent me to an endocrinologist for insulin. If you truly cannot explain the drop in your son, you might want to consider doing something similar, or at least run it by your doc. Since then, I have read papers discussing the fact that A1C is not a good indicator for ruling out diabetes in CFers. A high A1C yes, obviously is positive. But a low one is not necessarily negative. And depending on when you eat with respect to your bloodwork, it may not be caught. A higher blood sugar is bad for CFers for many reasons, one of which is that it enables many species of bacteria in the lungs to proliferate more quickly. I've also heard from other people who's lung health declined as their blood sugar got more out of control.
    DDf508, 46 years old, 2 daughters (ages 16 and 12). CFRD, GERD. Married 20+ years. Transplanted at Duke 10/12/17.

  6. #6
    CFRD wasn't even on my radar, mom2two; thank you! I will look into that and bring it up to his doctor.

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