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Thread: Daughter needing diagnosis

  1. #1
    Junior Member
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    Oct 2018
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    Daughter sweat test intermediate

    My child is 12 years old. She has had multiple pneumonias and reoccurring lung problems since she was 5 and started school. Shes been diagnosed severe asthma and has selective IGA deficiency. Her pediatrician suspects CF but im not sure. Her first pneumonia was at 20 mths and since shes had many. One time 3 in 6 weeks time. Shes had URIs, bouts chronic diarrhea, ear infections, strep, febrille syndrone, gastritis to name a few. Her xrays show cp angle blunting and is chronic in her left lung(scarring of the lining of lung), mild acute hyperinflation, pleural thickening, pleural effusions, hyperaeration, bronchoalveolar(BAL), and wall thickening. Shes had 2 bronchs and has mucus plugging. Shes always wheezy and her lung function drops in the 40s and wven 30s we dont even notice because she can't tell. Shes been fatigued more than normal, belly aches, side hurts, etc. etc. What symptoms do your children have??? Does this sound like CF ??
    Last edited by Nickel; 10-13-2018 at 07:11 PM. Reason: including other info

  2. #2
    Senior Member
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    Sep 2009
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    It certainly seems like something that needs to be checked out. Her Doctor suspects CF but what is he/her doing to find a proper Dx. Your daughter needs to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST.
    Male 77 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5T. 100% PI. MAC, CFRD.

  3. #3
    Junior Member
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    Oct 2018
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    I agree. I just spoke with her Dr. and shes sending the referral to a CF specialist in Lexington KY.

  4. #4
    Senior Member
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    Hope it's not CF but definately needs to be addressed and ruled in or out. When is her appointment with the CF doctor? A sweat test is a test they can do as well as blood work for looking for the genetic mutations for CF. The Cystic Fibrosis Foundation at www.cff.org is a recommended site with reliable information about CF . My daughter's symptoms of CF were apparent before she was even born; she had a meconium ileus a birth; requiring belly surgery to fix the obstruction. She needed pancreatic enzymes(oral pills) to digest her food since she was born. If she did not take these she would not gain weight and be malnourished. My daughter also has lung symptoms; we do breathing treatments and chest PT every day several times a day. She uses a VEST for chest PT. She is now almost 16 years old. Hoping you already have had your appointment. Please feel free to ask questions,

  5. #5
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    https://www.cff.org/What-is-CF/Diagn...stic-Fibrosis/

    Found this on the CF website lots of good info.

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