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Thread: Any info on delta F508/c.2657+2_2657+3insA

  1. #11
    worriedgrandma
    Guest

    Any info on delta F508/c.2657+2_2657+3insA

    Hi Katie, sorry I didn't see your msg, haven't been on lately. The only info I have found is the same as you said, male fertility so I'm crossing my fingers. My granddaughter is now 4 1/2 months old and as our Dr said, so far there is NO INDICATION at all that she has this disease other than a sweat test of 72. How old is your son?

  2. #12
    worriedgrandma
    Guest

    Any info on delta F508/c.2657+2_2657+3insA

    Hi Katie, sorry I didn't see your msg, haven't been on lately. The only info I have found is the same as you said, male fertility so I'm crossing my fingers. My granddaughter is now 4 1/2 months old and as our Dr said, so far there is NO INDICATION at all that she has this disease other than a sweat test of 72. How old is your son?

  3. #13

    Any info on delta F508/c.2657+2_2657+3insA

    Nathan is 10 weeks now. He is the exact same, we actually wouldnt have been none the wiser if he hadnt of shown high levels of protein in the newborn screening (not sure if this is a procedure they have in america).
    He has had a lot of bowel movement problems, but in terms of absorbing fats and proteins from his food he appears to be doing that successfully as he is now 12 lbs, 4 ozs.
    He is quite chesty occasionally but up until now there has been no infection. I dont think it matters, if this combination is mild, I think ill still be a wreck when he gets a chest infection, even though every child does.
    has your cf doctor suggested using preventative measures anyway?
    Here in Scotland, UK, I think it is normal for every child to start physio, regardless of the severity of the cf.
    I know our consultant is doing some research on the gene combination, so i would be interested to see if the does and how it may affect females, as extending our family may be an option in the future.
    hope you and your family are all well.
    katie

  4. #14

    Any info on delta F508/c.2657+2_2657+3insA

    Nathan is 10 weeks now. He is the exact same, we actually wouldnt have been none the wiser if he hadnt of shown high levels of protein in the newborn screening (not sure if this is a procedure they have in america).
    He has had a lot of bowel movement problems, but in terms of absorbing fats and proteins from his food he appears to be doing that successfully as he is now 12 lbs, 4 ozs.
    He is quite chesty occasionally but up until now there has been no infection. I dont think it matters, if this combination is mild, I think ill still be a wreck when he gets a chest infection, even though every child does.
    has your cf doctor suggested using preventative measures anyway?
    Here in Scotland, UK, I think it is normal for every child to start physio, regardless of the severity of the cf.
    I know our consultant is doing some research on the gene combination, so i would be interested to see if the does and how it may affect females, as extending our family may be an option in the future.
    hope you and your family are all well.
    katie

  5. #15

    Any info on delta F508/c.2657+2_2657+3insA

    Nathan is 10 weeks now. He is the exact same, we actually wouldnt have been none the wiser if he hadnt of shown high levels of protein in the newborn screening (not sure if this is a procedure they have in america).
    <br />He has had a lot of bowel movement problems, but in terms of absorbing fats and proteins from his food he appears to be doing that successfully as he is now 12 lbs, 4 ozs.
    <br />He is quite chesty occasionally but up until now there has been no infection. I dont think it matters, if this combination is mild, I think ill still be a wreck when he gets a chest infection, even though every child does.
    <br />has your cf doctor suggested using preventative measures anyway?
    <br />Here in Scotland, UK, I think it is normal for every child to start physio, regardless of the severity of the cf.
    <br />I know our consultant is doing some research on the gene combination, so i would be interested to see if the does and how it may affect females, as extending our family may be an option in the future.
    <br />hope you and your family are all well.
    <br />katie

  6. #16
    worriedgrandma
    Guest

    Any info on delta F508/c.2657+2_2657+3insA

    Yes the CF Dr has my granddaughter on a nebulizer twice a day and chest physio just as a "preventative" measure. She said it will never hurt her even if she doesn't need it.

  7. #17
    worriedgrandma
    Guest

    Any info on delta F508/c.2657+2_2657+3insA

    Yes the CF Dr has my granddaughter on a nebulizer twice a day and chest physio just as a "preventative" measure. She said it will never hurt her even if she doesn't need it.

  8. #18
    worriedgrandma
    Guest

    Any info on delta F508/c.2657+2_2657+3insA

    Yes the CF Dr has my granddaughter on a nebulizer twice a day and chest physio just as a "preventative" measure. She said it will never hurt her even if she doesn't need it.

  9. #19

    Any info on delta F508/c.2657+2_2657+3insA

    Hey, I was reading your post and I have to say..this is the CLOSEST that I've ever seen anyone to my son's mutations. He has DF508/c.2789+2_+3insA. I've been trying to find someone with his second mutation, but so far no luck. I realize that it's not always possible to predict the severity of the disease based on the mutations, but I just wanted to get a sense of how rare his mutation was. My son Andrew was diagnosed through newborn screenings, and just turned 1 a couple weeks ago. So far he is pancreatic sufficient and has had no lung issues.

  10. #20

    Any info on delta F508/c.2657+2_2657+3insA

    Hey, I was reading your post and I have to say..this is the CLOSEST that I've ever seen anyone to my son's mutations. He has DF508/c.2789+2_+3insA. I've been trying to find someone with his second mutation, but so far no luck. I realize that it's not always possible to predict the severity of the disease based on the mutations, but I just wanted to get a sense of how rare his mutation was. My son Andrew was diagnosed through newborn screenings, and just turned 1 a couple weeks ago. So far he is pancreatic sufficient and has had no lung issues.

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