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Thread: Anyone F508/D1152H?

  1. #21
    Suzanne12
    Guest

    Anyone F508/D1152H?

    I don't know if you are still checking this. My daughter is 8 years old. She was diagnosed at age 6 with this mutation. We have had yearly bouts of pneumonia, but she is doing well. She has no signs or symptoms of pancreatitis. This is a widely varying mutation. If you have any ?, I'll do my best to answer.

  2. #22
    Suzanne12
    Guest

    Anyone F508/D1152H?

    I don't know if you are still checking this. My daughter is 8 years old. She was diagnosed at age 6 with this mutation. We have had yearly bouts of pneumonia, but she is doing well. She has no signs or symptoms of pancreatitis. This is a widely varying mutation. If you have any ?, I'll do my best to answer.

  3. #23
    Suzanne12
    Guest

    Anyone F508/D1152H?

    I don't know if you are still checking this. My daughter is 8 years old. She was diagnosed at age 6 with this mutation. We have had yearly bouts of pneumonia, but she is doing well. She has no signs or symptoms of pancreatitis. This is a widely varying mutation. If you have any ?, I'll do my best to answer.

  4. #24

    Anyone F508/D1152H?

    <P>My daughter is 4.5 months and has D1152H. Her sweat chloride is normal and she's pancreatic sufficient. Even though she looks healthy to me (minimum coughing -&gt; if I didn't know I'd think it's normal) her sputum culture test detected pseudomonas and e.coli. She's on antibiotics now. I don't knw what to think of it.. Can it still be "mild"?</P>
    <P>&nbsp;</P>

  5. #25

    Anyone F508/D1152H?

    <P>My daughter is 4.5 months and has D1152H. Her sweat chloride is normal and she's pancreatic sufficient. Even though she looks healthy to me (minimum coughing -&gt; if I didn't know I'd think it's normal) her sputum culture test detected pseudomonas and e.coli. She's on antibiotics now. I don't knw what to think of it.. Can it still be "mild"?</P>
    <P></P>

  6. #26

    Anyone F508/D1152H?

    <P>My daughter is 4.5 months and has D1152H. Her sweat chloride is normal and she's pancreatic sufficient. Even though she looks healthy to me (minimum coughing -&gt; if I didn't know I'd think it's normal) her sputum culture test detected pseudomonas and e.coli. She's on antibiotics now. I don't knw what to think of it.. Can it still be "mild"?</P>
    <P></P>

  7. #27
    ldenkers
    Guest

    Anyone F508/D1152H?

    Our twin boys have this combo (delta f508 if that is the same).&nbsp; The NICU specialists opinions were that it would always be mild and we have seen 3 different CF clinics that all treat differently with the same test results.&nbsp; We were happiest doing all the treatments that don't cause more harm (vests and vitamins).&nbsp; We do not give them enzymes or any other medicines for now.<br><br>They keep passing the sweat test with flying colors and still pancreatic sufficient.&nbsp; They are doing great.&nbsp; <br><br>Diagnosed at birth gives you a great chance to freak out and really do everything you can to fight back and slow down the progress.&nbsp; I keep in mind it's always there and always getting worse if we don't keep at it.&nbsp; By the time you'll have symptoms we will have a cure!<br><br>Find a CF doctor you trust and love, the rest just do what you can. <br><br>GOOD LUCK!<br><br>

  8. #28
    ldenkers
    Guest

    Anyone F508/D1152H?

    Our twin boys have this combo (delta f508 if that is the same). The NICU specialists opinions were that it would always be mild and we have seen 3 different CF clinics that all treat differently with the same test results. We were happiest doing all the treatments that don't cause more harm (vests and vitamins). We do not give them enzymes or any other medicines for now.<br><br>They keep passing the sweat test with flying colors and still pancreatic sufficient. They are doing great. <br><br>Diagnosed at birth gives you a great chance to freak out and really do everything you can to fight back and slow down the progress. I keep in mind it's always there and always getting worse if we don't keep at it. By the time you'll have symptoms we will have a cure!<br><br>Find a CF doctor you trust and love, the rest just do what you can. <br><br>GOOD LUCK!<br><br>

  9. #29
    ldenkers
    Guest

    Anyone F508/D1152H?

    Our twin boys have this combo (delta f508 if that is the same). The NICU specialists opinions were that it would always be mild and we have seen 3 different CF clinics that all treat differently with the same test results. We were happiest doing all the treatments that don't cause more harm (vests and vitamins). We do not give them enzymes or any other medicines for now.<br><br>They keep passing the sweat test with flying colors and still pancreatic sufficient. They are doing great. <br><br>Diagnosed at birth gives you a great chance to freak out and really do everything you can to fight back and slow down the progress. I keep in mind it's always there and always getting worse if we don't keep at it. By the time you'll have symptoms we will have a cure!<br><br>Find a CF doctor you trust and love, the rest just do what you can. <br><br>GOOD LUCK!<br><br>

  10. #30
    Junior Member
    Join Date
    Jan 2015
    Posts
    3

    Question i am 408/1152H

    I am 62, with CF F508/F1162H.

    I have had a number of pancreatitis attacks in my life, along with periodic congestion and strep throat. I developed CFRD when I was 44. I have Cbavd. Otherwise normal function. I was an athlete and martial artist most of my life. I eat a low carb diet and walk 2.5-5 miles per day, and other exercise. I use Levebuteral Inhaler, and Pulmazyme. I sleep with a CPAP. These are steps I take to insure my lungs are clear and my respiratory tract. I have other health issues unrelated to CF. I was diagnosed with CF when I was 60. For the first four years of my life I was heavily infected and congested from my lungs to my nose. Mom treated me with a steam vaporizer, healthy diet, and rest.

    I at first had a very tough time getting my MDs to believe I might have CF despite the CBAVD. After failing a number of sweat tests and two "short gene panels", revealing only one gene, I convinced a doctor to run a long gene panel. That's when the D1152H was diagnosed.

    While it seems this non classic form of CF is thought of as milder, I believe that is due to some people who are adaptive or resistant to it surviving, and the rest being undiagnosed by the basic CF tests or succumbing. Why I and some are resistant or adaptive to it I have no idea. I am hearing of more and more cases of F508/D1152H whose lungs are in terrible shape, now that the full gene panel is being used more frequently and detecting this combination.

    Wishing your child the best, you as well.

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