Anyone F508/D1152H?

[Suzanne12]

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.

 

[Suzanne12]

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.

 

[Suzanne12]

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.

 

[bubbleville]

<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 -> 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>

 

[bubbleville]

<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 -> 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>

 

[bubbleville]

<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 -> 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>

 

[ldenkers]

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>

 

[ldenkers]

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>

 

[ldenkers]

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>

 

[cssusa]

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.

 

[Suzanne12]

Hi. I am Suzanne12 who wrote from 2011. My daughter has F508 and D1152H. She is doing great! Diagnosed at 6,, she had multiple pneumonias. Everything becomes respiratory. Pancreas okay. No enzymes. Pulmozyme and vest daily but Xopenex during illness. Lots of allergies. Normal sweat test. Life is great!

 

[Suzanne12]

Hi again. I forgot to mention that my daughter is now 12. She did test positive for pseudomonas twice this year but is now clear. She had never tested positive for any bacteria before, so that shook us both up a bit. Become educated as knowledge is power. She is doing great with the help of exercise and taking therapy seriously. Make sure pulmonologist and pediatrician work well together.

 

[cssusa]

Hi again. I forgot to mention that my daughter is now 12. She did test positive for pseudomonas twice this year but is now clear. She had never tested positive for any bacteria before, so that shook us both up a bit. Become educated as knowledge is power. She is doing great with the help of exercise and taking therapy seriously. Make sure pulmonologist and pediatrician work well together.

I developed Staph in my Uvula, tonsils and Sinus a few months ago. My first respiratory Staph in 58 yrs. Penicillin VK prescribed by PCP rapidly chased it into my ears and Bronchials. My CF Drs. Prescribed Zyvox to replace PVK. After 14 days I was fine, only Zyvox has much farther reaching effects on teeth, skin and digestion. It can also have an serious elevating effect on INR as it is related to Xarelto, and on blood sugar, and Hydration. Use it, but use a measure of caution to adjust other meds accordingly. Make certain your infection is gram positive by culturing.

 

[Atypy86]

Hi! I was just recently diagnosed with CF delta f508/D1152H At 31. I have NO symptoms. Was never prone to chest infections, not even asthma-like symptoms. I was recently tested at a CF center and all my tests came back normal. I feel very lucky, but also very confused. How can I have CF with zero symptoms?