Over 4 years later and still no symptoms.....

ashmomo · Mar 6, 2010

I really don't have answers to your questions and cannot relate. I did want to tell you though, that my 34 year old cousin was diagnosed at 30 due to infertility testing. He has had no other symptoms of CF. So it is, as you have said, not impossible for a child to have no symptoms.

I hope he continues to do well and you get the answers you are looking for <img src="i/expressions/face-icon-small-blush.gif" border="0">)

ashmomo · Mar 6, 2010

I really don't have answers to your questions and cannot relate. I did want to tell you though, that my 34 year old cousin was diagnosed at 30 due to infertility testing. He has had no other symptoms of CF. So it is, as you have said, not impossible for a child to have no symptoms.

I hope he continues to do well and you get the answers you are looking for <img src="i/expressions/face-icon-small-blush.gif" border="0">)

ashmomo · Mar 6, 2010

I really don't have answers to your questions and cannot relate. I did want to tell you though, that my 34 year old cousin was diagnosed at 30 due to infertility testing. He has had no other symptoms of CF. So it is, as you have said, not impossible for a child to have no symptoms.

I hope he continues to do well and you get the answers you are looking for <img src="i/expressions/face-icon-small-blush.gif" border="0">)

ashmomo · Mar 6, 2010

I really don't have answers to your questions and cannot relate. I did want to tell you though, that my 34 year old cousin was diagnosed at 30 due to infertility testing. He has had no other symptoms of CF. So it is, as you have said, not impossible for a child to have no symptoms.

I hope he continues to do well and you get the answers you are looking for <img src="i/expressions/face-icon-small-blush.gif" border="0">)

ashmomo · Mar 6, 2010

I really don't have answers to your questions and cannot relate. I did want to tell you though, that my 34 year old cousin was diagnosed at 30 due to infertility testing. He has had no other symptoms of CF. So it is, as you have said, not impossible for a child to have no symptoms.
 
 I hope he continues to do well and you get the answers you are looking for <img src="i/expressions/face-icon-small-blush.gif" border="0">)

Gnome · Mar 6, 2010

I think I read that 20% of CFers are pancreatic sufficient. But even for them most of them their lungs do get worse over time. They just don't often have problems from the get go.

One kind of famous one who is pancreatic sufficient is Triathlete Lisa Bentley she wasn't diagnosed with CF until she was in her early 20's. She competed for years in Ironman Triathlons and she won several of them. However she is now in her late 30's and her health is starting to give her problems. We met her last year and she talked about being on Tobi and I read on her website that health problems related to CF are starting to take a toil on her. Although I am sure her problems are minor compared to most CFers.

<a target=_blank class=ftalternatingbarlinklarge href="http://lisabentley.com/">http://lisabentley.com/</a>

Gnome · Mar 6, 2010

I think I read that 20% of CFers are pancreatic sufficient. But even for them most of them their lungs do get worse over time. They just don't often have problems from the get go.

One kind of famous one who is pancreatic sufficient is Triathlete Lisa Bentley she wasn't diagnosed with CF until she was in her early 20's. She competed for years in Ironman Triathlons and she won several of them. However she is now in her late 30's and her health is starting to give her problems. We met her last year and she talked about being on Tobi and I read on her website that health problems related to CF are starting to take a toil on her. Although I am sure her problems are minor compared to most CFers.

<a target=_blank class=ftalternatingbarlinklarge href="http://lisabentley.com/">http://lisabentley.com/</a>

Gnome · Mar 6, 2010

I think I read that 20% of CFers are pancreatic sufficient. But even for them most of them their lungs do get worse over time. They just don't often have problems from the get go.

One kind of famous one who is pancreatic sufficient is Triathlete Lisa Bentley she wasn't diagnosed with CF until she was in her early 20's. She competed for years in Ironman Triathlons and she won several of them. However she is now in her late 30's and her health is starting to give her problems. We met her last year and she talked about being on Tobi and I read on her website that health problems related to CF are starting to take a toil on her. Although I am sure her problems are minor compared to most CFers.

<a target=_blank class=ftalternatingbarlinklarge href="http://lisabentley.com/">http://lisabentley.com/</a>

Gnome · Mar 6, 2010

I think I read that 20% of CFers are pancreatic sufficient. But even for them most of them their lungs do get worse over time. They just don't often have problems from the get go.

One kind of famous one who is pancreatic sufficient is Triathlete Lisa Bentley she wasn't diagnosed with CF until she was in her early 20's. She competed for years in Ironman Triathlons and she won several of them. However she is now in her late 30's and her health is starting to give her problems. We met her last year and she talked about being on Tobi and I read on her website that health problems related to CF are starting to take a toil on her. Although I am sure her problems are minor compared to most CFers.

<a target=_blank class=ftalternatingbarlinklarge href="http://lisabentley.com/">http://lisabentley.com/</a>

Gnome · Mar 6, 2010

I think I read that 20% of CFers are pancreatic sufficient. But even for them most of them their lungs do get worse over time. They just don't often have problems from the get go.
 
 One kind of famous one who is pancreatic sufficient is Triathlete Lisa Bentley she wasn't diagnosed with CF until she was in her early 20's. She competed for years in Ironman Triathlons and she won several of them. However she is now in her late 30's and her health is starting to give her problems. We met her last year and she talked about being on Tobi and I read on her website that health problems related to CF are starting to take a toil on her. Although I am sure her problems are minor compared to most CFers.
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://lisabentley.com/">http://lisabentley.com/</a>

janddburke · Mar 6, 2010

My daughter Jess was diagnosed at 5 months with FTT. then CF. we were fortunate she wasn't that sick and we had a very perceptive pediatrician.
She is PS and has only been hospitalized once since then. For years, while we did keep up with meds, visits and therapy, we were in a kind of denial. like all the stuff you read about happens to other people.
But it doesn't. it sneaks up on you and hits you over the head.
She is doing great and if anything we are even more aggressive with her meds and therapy and encouraging athletics (soccer, track, field hockey and lacrosse). She is a kid too after all.

janddburke · Mar 6, 2010

My daughter Jess was diagnosed at 5 months with FTT. then CF. we were fortunate she wasn't that sick and we had a very perceptive pediatrician.
She is PS and has only been hospitalized once since then. For years, while we did keep up with meds, visits and therapy, we were in a kind of denial. like all the stuff you read about happens to other people.
But it doesn't. it sneaks up on you and hits you over the head.
She is doing great and if anything we are even more aggressive with her meds and therapy and encouraging athletics (soccer, track, field hockey and lacrosse). She is a kid too after all.

janddburke · Mar 6, 2010

My daughter Jess was diagnosed at 5 months with FTT. then CF. we were fortunate she wasn't that sick and we had a very perceptive pediatrician.
She is PS and has only been hospitalized once since then. For years, while we did keep up with meds, visits and therapy, we were in a kind of denial. like all the stuff you read about happens to other people.
But it doesn't. it sneaks up on you and hits you over the head.
She is doing great and if anything we are even more aggressive with her meds and therapy and encouraging athletics (soccer, track, field hockey and lacrosse). She is a kid too after all.

janddburke · Mar 6, 2010

My daughter Jess was diagnosed at 5 months with FTT. then CF. we were fortunate she wasn't that sick and we had a very perceptive pediatrician.
She is PS and has only been hospitalized once since then. For years, while we did keep up with meds, visits and therapy, we were in a kind of denial. like all the stuff you read about happens to other people.
But it doesn't. it sneaks up on you and hits you over the head.
She is doing great and if anything we are even more aggressive with her meds and therapy and encouraging athletics (soccer, track, field hockey and lacrosse). She is a kid too after all.

janddburke · Mar 6, 2010

My daughter Jess was diagnosed at 5 months with FTT. then CF. we were fortunate she wasn't that sick and we had a very perceptive pediatrician.
 She is PS and has only been hospitalized once since then. For years, while we did keep up with meds, visits and therapy, we were in a kind of denial. like all the stuff you read about happens to other people.
 But it doesn't. it sneaks up on you and hits you over the head.
 She is doing great and if anything we are even more aggressive with her meds and therapy and encouraging athletics (soccer, track, field hockey and lacrosse). She is a kid too after all.

hmw · Mar 6, 2010

I can't really help you with what your situation is, but can just share that we are in 'cf limbo' with one of our kids, too. My son has the same genetic results as your child- one df508 mutation. His sweat test results were 48 and 54, so a solid borderline. Appt with urologist was completely 'inconclusive' on whether or not he has his vas deferens. His growth has slowed over the last several years but nothing like the growth failure that led to Emily's dx; he has chronic sinus issues and a new breathing issue when exposed to a couple specific triggers (a reactive airway type of thing) ...but again, nothing like his sister.

Emily is accommodating: she has the df508 and while her 2nd mutation is unknown, her sweat test was very high (108) so there was no doubting her dx, esp when combined with her symptoms, which are much more pronounced than her brother's. When it comes to our son, had his sister not been in the picture I am not sure what they'd be thinking of him or if it would even be a consideration for him at all. Genetically we cannot know if he's a symptomatic carrier or if he has mild (to date) symptoms of cf. His last sweat test was about 1.5yr ago so I don't know if we should do another; Emily's cf dr recommended trying to get coverage for nasal potential testing and he found a center that will do this for Shawn (they want to do a whole workup on him.) I hope this yields us some valuable info because this living in 'maybe, maybe not' world is driving us nuts.

I am glad to see how healthy your child is... hope that continues and that somehow you get more answers.

hmw · Mar 6, 2010

I can't really help you with what your situation is, but can just share that we are in 'cf limbo' with one of our kids, too. My son has the same genetic results as your child- one df508 mutation. His sweat test results were 48 and 54, so a solid borderline. Appt with urologist was completely 'inconclusive' on whether or not he has his vas deferens. His growth has slowed over the last several years but nothing like the growth failure that led to Emily's dx; he has chronic sinus issues and a new breathing issue when exposed to a couple specific triggers (a reactive airway type of thing) ...but again, nothing like his sister.

Emily is accommodating: she has the df508 and while her 2nd mutation is unknown, her sweat test was very high (108) so there was no doubting her dx, esp when combined with her symptoms, which are much more pronounced than her brother's. When it comes to our son, had his sister not been in the picture I am not sure what they'd be thinking of him or if it would even be a consideration for him at all. Genetically we cannot know if he's a symptomatic carrier or if he has mild (to date) symptoms of cf. His last sweat test was about 1.5yr ago so I don't know if we should do another; Emily's cf dr recommended trying to get coverage for nasal potential testing and he found a center that will do this for Shawn (they want to do a whole workup on him.) I hope this yields us some valuable info because this living in 'maybe, maybe not' world is driving us nuts.

I am glad to see how healthy your child is... hope that continues and that somehow you get more answers.

hmw · Mar 6, 2010

I can't really help you with what your situation is, but can just share that we are in 'cf limbo' with one of our kids, too. My son has the same genetic results as your child- one df508 mutation. His sweat test results were 48 and 54, so a solid borderline. Appt with urologist was completely 'inconclusive' on whether or not he has his vas deferens. His growth has slowed over the last several years but nothing like the growth failure that led to Emily's dx; he has chronic sinus issues and a new breathing issue when exposed to a couple specific triggers (a reactive airway type of thing) ...but again, nothing like his sister.

Emily is accommodating: she has the df508 and while her 2nd mutation is unknown, her sweat test was very high (108) so there was no doubting her dx, esp when combined with her symptoms, which are much more pronounced than her brother's. When it comes to our son, had his sister not been in the picture I am not sure what they'd be thinking of him or if it would even be a consideration for him at all. Genetically we cannot know if he's a symptomatic carrier or if he has mild (to date) symptoms of cf. His last sweat test was about 1.5yr ago so I don't know if we should do another; Emily's cf dr recommended trying to get coverage for nasal potential testing and he found a center that will do this for Shawn (they want to do a whole workup on him.) I hope this yields us some valuable info because this living in 'maybe, maybe not' world is driving us nuts.

I am glad to see how healthy your child is... hope that continues and that somehow you get more answers.

hmw · Mar 6, 2010

I can't really help you with what your situation is, but can just share that we are in 'cf limbo' with one of our kids, too. My son has the same genetic results as your child- one df508 mutation. His sweat test results were 48 and 54, so a solid borderline. Appt with urologist was completely 'inconclusive' on whether or not he has his vas deferens. His growth has slowed over the last several years but nothing like the growth failure that led to Emily's dx; he has chronic sinus issues and a new breathing issue when exposed to a couple specific triggers (a reactive airway type of thing) ...but again, nothing like his sister.

Emily is accommodating: she has the df508 and while her 2nd mutation is unknown, her sweat test was very high (108) so there was no doubting her dx, esp when combined with her symptoms, which are much more pronounced than her brother's. When it comes to our son, had his sister not been in the picture I am not sure what they'd be thinking of him or if it would even be a consideration for him at all. Genetically we cannot know if he's a symptomatic carrier or if he has mild (to date) symptoms of cf. His last sweat test was about 1.5yr ago so I don't know if we should do another; Emily's cf dr recommended trying to get coverage for nasal potential testing and he found a center that will do this for Shawn (they want to do a whole workup on him.) I hope this yields us some valuable info because this living in 'maybe, maybe not' world is driving us nuts.

I am glad to see how healthy your child is... hope that continues and that somehow you get more answers.

hmw · Mar 6, 2010

I can't really help you with what your situation is, but can just share that we are in 'cf limbo' with one of our kids, too. My son has the same genetic results as your child- one df508 mutation. His sweat test results were 48 and 54, so a solid borderline. Appt with urologist was completely 'inconclusive' on whether or not he has his vas deferens. His growth has slowed over the last several years but nothing like the growth failure that led to Emily's dx; he has chronic sinus issues and a new breathing issue when exposed to a couple specific triggers (a reactive airway type of thing) ...but again, nothing like his sister.
 
 Emily is accommodating: she has the df508 and while her 2nd mutation is unknown, her sweat test was very high (108) so there was no doubting her dx, esp when combined with her symptoms, which are much more pronounced than her brother's. When it comes to our son, had his sister not been in the picture I am not sure what they'd be thinking of him or if it would even be a consideration for him at all. Genetically we cannot know if he's a symptomatic carrier or if he has mild (to date) symptoms of cf. His last sweat test was about 1.5yr ago so I don't know if we should do another; Emily's cf dr recommended trying to get coverage for nasal potential testing and he found a center that will do this for Shawn (they want to do a whole workup on him.) I hope this yields us some valuable info because this living in 'maybe, maybe not' world is driving us nuts.
 
 I am glad to see how healthy your child is... hope that continues and that somehow you get more answers.

Over 4 years later and still no symptoms.....

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