DF508 and 3659delC anyone??

E

elle

New member
Hi all! I am not sure of the 'board etiquette' here and I am sorry if this post is intrusive to your board but I am just wondering if anyone has this particular combination of CF gene mutations? DF508 and 3659delC? My nearly 6 month old baby girl has this combination and I am just wondering if there are any adults here who have this combination. I understand that people with CF all embark on their own journey and that you really can't directly compare or 'guess' outcomes but I am still curious to know..

TIA

Elle
 
E

elle

New member
Hi all! I am not sure of the 'board etiquette' here and I am sorry if this post is intrusive to your board but I am just wondering if anyone has this particular combination of CF gene mutations? DF508 and 3659delC? My nearly 6 month old baby girl has this combination and I am just wondering if there are any adults here who have this combination. I understand that people with CF all embark on their own journey and that you really can't directly compare or 'guess' outcomes but I am still curious to know..

TIA

Elle
 
E

elle

New member
Hi all! I am not sure of the 'board etiquette' here and I am sorry if this post is intrusive to your board but I am just wondering if anyone has this particular combination of CF gene mutations? DF508 and 3659delC? My nearly 6 month old baby girl has this combination and I am just wondering if there are any adults here who have this combination. I understand that people with CF all embark on their own journey and that you really can't directly compare or 'guess' outcomes but I am still curious to know..

TIA

Elle
 
A

alegris

Guest
SO CLOSE!!!! I have DF508 and 3396delC! I've never heard of anyone having a mutation even remotely close to mine before. I wonder if our conditions would be similar?

I hope your daughter's condition is as mild as mine seems to be so far (hopefully even better!). I was diagnosed when I was 8, very mild digestive issues, lungs were perfect up until my early 20's. Then I had a moderate FEV decline to the mid-fifties, but now I've leveled off and the number hasn't changed in years. I've never been hospitalized, never had an IV, haven't been on antibiotics since elementary school, average one cold per year (I keep track on my doctor's request because they find it extremely odd that I never get sick), never had pneumonia or anything worse than the flu. I'm married, work full time as a chemist, great family and friends, all around pretty normal life with the exception of my low FEV.

Anyways, I'm sure with the early intervention, your daughter's health will remain in top condition for many years.

I'd be interested in knowing if our conditions are actually similar.

Adrienne - 24/f/CF
 
A

alegris

Guest
SO CLOSE!!!! I have DF508 and 3396delC! I've never heard of anyone having a mutation even remotely close to mine before. I wonder if our conditions would be similar?

I hope your daughter's condition is as mild as mine seems to be so far (hopefully even better!). I was diagnosed when I was 8, very mild digestive issues, lungs were perfect up until my early 20's. Then I had a moderate FEV decline to the mid-fifties, but now I've leveled off and the number hasn't changed in years. I've never been hospitalized, never had an IV, haven't been on antibiotics since elementary school, average one cold per year (I keep track on my doctor's request because they find it extremely odd that I never get sick), never had pneumonia or anything worse than the flu. I'm married, work full time as a chemist, great family and friends, all around pretty normal life with the exception of my low FEV.

Anyways, I'm sure with the early intervention, your daughter's health will remain in top condition for many years.

I'd be interested in knowing if our conditions are actually similar.

Adrienne - 24/f/CF
 
A

alegris

Guest
SO CLOSE!!!! I have DF508 and 3396delC! I've never heard of anyone having a mutation even remotely close to mine before. I wonder if our conditions would be similar?

I hope your daughter's condition is as mild as mine seems to be so far (hopefully even better!). I was diagnosed when I was 8, very mild digestive issues, lungs were perfect up until my early 20's. Then I had a moderate FEV decline to the mid-fifties, but now I've leveled off and the number hasn't changed in years. I've never been hospitalized, never had an IV, haven't been on antibiotics since elementary school, average one cold per year (I keep track on my doctor's request because they find it extremely odd that I never get sick), never had pneumonia or anything worse than the flu. I'm married, work full time as a chemist, great family and friends, all around pretty normal life with the exception of my low FEV.

Anyways, I'm sure with the early intervention, your daughter's health will remain in top condition for many years.

I'd be interested in knowing if our conditions are actually similar.

Adrienne - 24/f/CF
 
A

aannddd

New member
Hello Elle,

I too have a 6 month old with DF508 and 3659delC and I have only been able find two other people with that combo. They were siblings, both in their 20's. I found them on another forum several months ago. I got the impression that they had moderate issues. How is your daughter doing so far? My son is PI. He has had one cold that required antibiotics. He was slow to gain weight at first. Once they started him on enzymes at 3 weeks of age, he has done well.

Good luck, I can really relate to the road you are navigating at this point.
 
A

aannddd

New member
Hello Elle,

I too have a 6 month old with DF508 and 3659delC and I have only been able find two other people with that combo. They were siblings, both in their 20's. I found them on another forum several months ago. I got the impression that they had moderate issues. How is your daughter doing so far? My son is PI. He has had one cold that required antibiotics. He was slow to gain weight at first. Once they started him on enzymes at 3 weeks of age, he has done well.

Good luck, I can really relate to the road you are navigating at this point.
 
A

aannddd

New member
Hello Elle,

I too have a 6 month old with DF508 and 3659delC and I have only been able find two other people with that combo. They were siblings, both in their 20's. I found them on another forum several months ago. I got the impression that they had moderate issues. How is your daughter doing so far? My son is PI. He has had one cold that required antibiotics. He was slow to gain weight at first. Once they started him on enzymes at 3 weeks of age, he has done well.

Good luck, I can really relate to the road you are navigating at this point.
 
E

elle

New member
Thanks so much for your responses!

Adrienne-- So close! The nature of CF, the different mutations and the variance in severity of symptoms makes it so hard to tell.. Just wanted to say I'm so happy to hear that you are doing so well! I understand the realities of this disease and so I love hearing about adults with CF doing well. Thankyou so much for sharing a bit about yourself, I appreciate it.

aannddd-- Wow! I can't believe we have children the same age with the same mutations!! My daughter is doing ok. We live in Australia so I don't know how differently CF teams manage things here (and I'm not sure where you are?!). She is PI also. She has taken enzymes since 6 weeks. Her weight gain has been ok, not as much as I would like but she is slowly gaining. She has reflux which complicates things. I get a lot of comments from strangers about her size which is a little hard but I just say that she is petite. She has been on a low dose of antibiotics since her dx. She now takes VitABDECK daily also. Unfortunately, she has already had a hospital stay with IV antibiotics (last month) but she has done really well with all of her treatments. She is a happy girl! I would love to stay in contact with you if you are interested. If so, feel free to send me a message.

Elle
 
E

elle

New member
Thanks so much for your responses!

Adrienne-- So close! The nature of CF, the different mutations and the variance in severity of symptoms makes it so hard to tell.. Just wanted to say I'm so happy to hear that you are doing so well! I understand the realities of this disease and so I love hearing about adults with CF doing well. Thankyou so much for sharing a bit about yourself, I appreciate it.

aannddd-- Wow! I can't believe we have children the same age with the same mutations!! My daughter is doing ok. We live in Australia so I don't know how differently CF teams manage things here (and I'm not sure where you are?!). She is PI also. She has taken enzymes since 6 weeks. Her weight gain has been ok, not as much as I would like but she is slowly gaining. She has reflux which complicates things. I get a lot of comments from strangers about her size which is a little hard but I just say that she is petite. She has been on a low dose of antibiotics since her dx. She now takes VitABDECK daily also. Unfortunately, she has already had a hospital stay with IV antibiotics (last month) but she has done really well with all of her treatments. She is a happy girl! I would love to stay in contact with you if you are interested. If so, feel free to send me a message.

Elle
 
E

elle

New member
Thanks so much for your responses!

Adrienne-- So close! The nature of CF, the different mutations and the variance in severity of symptoms makes it so hard to tell.. Just wanted to say I'm so happy to hear that you are doing so well! I understand the realities of this disease and so I love hearing about adults with CF doing well. Thankyou so much for sharing a bit about yourself, I appreciate it.

aannddd-- Wow! I can't believe we have children the same age with the same mutations!! My daughter is doing ok. We live in Australia so I don't know how differently CF teams manage things here (and I'm not sure where you are?!). She is PI also. She has taken enzymes since 6 weeks. Her weight gain has been ok, not as much as I would like but she is slowly gaining. She has reflux which complicates things. I get a lot of comments from strangers about her size which is a little hard but I just say that she is petite. She has been on a low dose of antibiotics since her dx. She now takes VitABDECK daily also. Unfortunately, she has already had a hospital stay with IV antibiotics (last month) but she has done really well with all of her treatments. She is a happy girl! I would love to stay in contact with you if you are interested. If so, feel free to send me a message.

Elle
 
C

carriepathy

New member
Hi - we received the breakdown for our son yesterday and he is also DF508 and 3659delC. He was diagnosed at 7 weeks, and is 12 weeks old tomorrow - PI although doing great with a pre-digested formula called Pregomin AS (I also give him enzymes for some meals but not all of them as it gives him diarrhea and a very sore bum). So far he's had antiobiotics once when he was wheezing just before Easter, but since then lungs have been clear. I'd love to keep in touch and share how our boys get on.
 
C

carriepathy

New member
Hi - we received the breakdown for our son yesterday and he is also DF508 and 3659delC. He was diagnosed at 7 weeks, and is 12 weeks old tomorrow - PI although doing great with a pre-digested formula called Pregomin AS (I also give him enzymes for some meals but not all of them as it gives him diarrhea and a very sore bum). So far he's had antiobiotics once when he was wheezing just before Easter, but since then lungs have been clear. I'd love to keep in touch and share how our boys get on.
 
C

carriepathy

New member
Hi - we received the breakdown for our son yesterday and he is also DF508 and 3659delC. He was diagnosed at 7 weeks, and is 12 weeks old tomorrow - PI although doing great with a pre-digested formula called Pregomin AS (I also give him enzymes for some meals but not all of them as it gives him diarrhea and a very sore bum). So far he's had antiobiotics once when he was wheezing just before Easter, but since then lungs have been clear. I'd love to keep in touch and share how our boys get on.
 
C

carriepathy

New member
Hi - we received the breakdown for our son yesterday and he is also DF508 and 3659delC. He was diagnosed at 7 weeks, and is 12 weeks old tomorrow - PI although doing great with a pre-digested formula called Pregomin AS (I also give him enzymes for some meals but not all of them as it gives him diarrhea and a very sore bum). So far he's had antiobiotics once when he was wheezing just before Easter, but since then lungs have been clear. I'd love to keep in touch and share how our boys get on.
 
C

carriepathy

New member
Hi - we received the breakdown for our son yesterday and he is also DF508 and 3659delC. He was diagnosed at 7 weeks, and is 12 weeks old tomorrow - PI although doing great with a pre-digested formula called Pregomin AS (I also give him enzymes for some meals but not all of them as it gives him diarrhea and a very sore bum). So far he's had antiobiotics once when he was wheezing just before Easter, but since then lungs have been clear. I'd love to keep in touch and share how our boys get on.
 
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