Anyone ever have a late CF diagnosis (10 year old) who never showed symptoms?

A

Aspiemom

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tybe40</b></i>

My niece was just diagnosed, and it's so confusing because she has never shown any signs of CF. Her younger sister was diagnosed over a month ago, and she did show mild symptoms. What does this mean for her (older sibling)? Can she live a life without ever developing it?</end quote></div>


I wasn't dx until I was 43years old, so obviously my symptoms early in life weren't overly bad. As I got older, I was more symptomatic but the drs couldn't figure out why I didn't respond to treatment and had such constant relapses of things like bronchitis and sinus infections. When I was 28 (?) I was dx w/ Bronchiectisis, then with CF at 43. I'll be 48 in a few weeks.

Just enjoy your daughter's health. It's a gift. I wouldn't live "waiting for the other shoe to drop" as you say, as it could be like me and be a long time away and you don't want to put an unneccesary damper on the healthy years. I hope I've been helpful.
 
A

Aspiemom

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tybe40</b></i>

My niece was just diagnosed, and it's so confusing because she has never shown any signs of CF. Her younger sister was diagnosed over a month ago, and she did show mild symptoms. What does this mean for her (older sibling)? Can she live a life without ever developing it?</end quote></div>


I wasn't dx until I was 43years old, so obviously my symptoms early in life weren't overly bad. As I got older, I was more symptomatic but the drs couldn't figure out why I didn't respond to treatment and had such constant relapses of things like bronchitis and sinus infections. When I was 28 (?) I was dx w/ Bronchiectisis, then with CF at 43. I'll be 48 in a few weeks.

Just enjoy your daughter's health. It's a gift. I wouldn't live "waiting for the other shoe to drop" as you say, as it could be like me and be a long time away and you don't want to put an unneccesary damper on the healthy years. I hope I've been helpful.
 
A

Aspiemom

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tybe40</b></i>

My niece was just diagnosed, and it's so confusing because she has never shown any signs of CF. Her younger sister was diagnosed over a month ago, and she did show mild symptoms. What does this mean for her (older sibling)? Can she live a life without ever developing it?</end quote></div>


I wasn't dx until I was 43years old, so obviously my symptoms early in life weren't overly bad. As I got older, I was more symptomatic but the drs couldn't figure out why I didn't respond to treatment and had such constant relapses of things like bronchitis and sinus infections. When I was 28 (?) I was dx w/ Bronchiectisis, then with CF at 43. I'll be 48 in a few weeks.

Just enjoy your daughter's health. It's a gift. I wouldn't live "waiting for the other shoe to drop" as you say, as it could be like me and be a long time away and you don't want to put an unneccesary damper on the healthy years. I hope I've been helpful.
 
A

Aspiemom

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tybe40</b></i>

My niece was just diagnosed, and it's so confusing because she has never shown any signs of CF. Her younger sister was diagnosed over a month ago, and she did show mild symptoms. What does this mean for her (older sibling)? Can she live a life without ever developing it?</end quote>


I wasn't dx until I was 43years old, so obviously my symptoms early in life weren't overly bad. As I got older, I was more symptomatic but the drs couldn't figure out why I didn't respond to treatment and had such constant relapses of things like bronchitis and sinus infections. When I was 28 (?) I was dx w/ Bronchiectisis, then with CF at 43. I'll be 48 in a few weeks.

Just enjoy your daughter's health. It's a gift. I wouldn't live "waiting for the other shoe to drop" as you say, as it could be like me and be a long time away and you don't want to put an unneccesary damper on the healthy years. I hope I've been helpful.
 
A

Aspiemom

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tybe40</b></i>
<br />
<br />My niece was just diagnosed, and it's so confusing because she has never shown any signs of CF. Her younger sister was diagnosed over a month ago, and she did show mild symptoms. What does this mean for her (older sibling)? Can she live a life without ever developing it?</end quote>
<br />
<br />
<br />I wasn't dx until I was 43years old, so obviously my symptoms early in life weren't overly bad. As I got older, I was more symptomatic but the drs couldn't figure out why I didn't respond to treatment and had such constant relapses of things like bronchitis and sinus infections. When I was 28 (?) I was dx w/ Bronchiectisis, then with CF at 43. I'll be 48 in a few weeks.
<br />
<br />Just enjoy your daughter's health. It's a gift. I wouldn't live "waiting for the other shoe to drop" as you say, as it could be like me and be a long time away and you don't want to put an unneccesary damper on the healthy years. I hope I've been helpful.
 
T

tybe40

New member
Thank you for your replies. It is not my daughter's, but my nieces who just got these diagnosis'. They both are mostly healthy, especially the oldest with the most recent diagnosis (she is actually overweight). It's great to hear of people living long, healthy lives, as me and my sister are still in that initial state of shock phase. The younger one (7) has always had sinus issues, bronchial issues and never responded well to asthma meds. Though she is thriving in every other area, very athletic, not underweight, etc...It was a few years of these bad colds until finally they found a pulminologist who took the time and figured out what it was, and gave the dx. Thanks again, this board is really helpful.
 
T

tybe40

New member
Thank you for your replies. It is not my daughter's, but my nieces who just got these diagnosis'. They both are mostly healthy, especially the oldest with the most recent diagnosis (she is actually overweight). It's great to hear of people living long, healthy lives, as me and my sister are still in that initial state of shock phase. The younger one (7) has always had sinus issues, bronchial issues and never responded well to asthma meds. Though she is thriving in every other area, very athletic, not underweight, etc...It was a few years of these bad colds until finally they found a pulminologist who took the time and figured out what it was, and gave the dx. Thanks again, this board is really helpful.
 
T

tybe40

New member
Thank you for your replies. It is not my daughter's, but my nieces who just got these diagnosis'. They both are mostly healthy, especially the oldest with the most recent diagnosis (she is actually overweight). It's great to hear of people living long, healthy lives, as me and my sister are still in that initial state of shock phase. The younger one (7) has always had sinus issues, bronchial issues and never responded well to asthma meds. Though she is thriving in every other area, very athletic, not underweight, etc...It was a few years of these bad colds until finally they found a pulminologist who took the time and figured out what it was, and gave the dx. Thanks again, this board is really helpful.
 
T

tybe40

New member
Thank you for your replies. It is not my daughter's, but my nieces who just got these diagnosis'. They both are mostly healthy, especially the oldest with the most recent diagnosis (she is actually overweight). It's great to hear of people living long, healthy lives, as me and my sister are still in that initial state of shock phase. The younger one (7) has always had sinus issues, bronchial issues and never responded well to asthma meds. Though she is thriving in every other area, very athletic, not underweight, etc...It was a few years of these bad colds until finally they found a pulminologist who took the time and figured out what it was, and gave the dx. Thanks again, this board is really helpful.
 
T

tybe40

New member
Thank you for your replies. It is not my daughter's, but my nieces who just got these diagnosis'. They both are mostly healthy, especially the oldest with the most recent diagnosis (she is actually overweight). It's great to hear of people living long, healthy lives, as me and my sister are still in that initial state of shock phase. The younger one (7) has always had sinus issues, bronchial issues and never responded well to asthma meds. Though she is thriving in every other area, very athletic, not underweight, etc...It was a few years of these bad colds until finally they found a pulminologist who took the time and figured out what it was, and gave the dx. Thanks again, this board is really helpful.
 
L

LouLou

New member
I'm guessing they did a genetic test on the older one. Did they also do a sweat test? If the sweat test came out abnormal(>60) or even borderline(40-60) then most likely she will develop symptoms sooner than later due to malfunctioning chloride channel...the root of all cf problems. If she only shows up genetically with no symptoms at all including a very normal sweat then she may or may not become symptomatic.

Does she clear her throat or cough at all on a regular basis? She should have a complete annual checkup just to establish a baseline this will consist of blood work to get her vitamin levels and kid/liver function. A breathing test called a pft and a chest xray and a sputum culture. It is possible for cfers to have cf infections in their lungs and not even know it.

So for comparison...
My son sweated a 12 which is very normal. He was found to have two cf mutations. He was tested due to my cf and us wanting to make absolutely sure he didn't have cf. Well he does. Even though he is not symptomatic and has a normal sweat and no "signs" of cf. We have him on a therapeutic regimine for preventative care because 1) it's easier on everyone if you do it from the get go, becomes a way of life 2) I could never live down having been able to prevent disease progression.

It's a small price to pay...for hopefully a healthy kid.
 
L

LouLou

New member
I'm guessing they did a genetic test on the older one. Did they also do a sweat test? If the sweat test came out abnormal(>60) or even borderline(40-60) then most likely she will develop symptoms sooner than later due to malfunctioning chloride channel...the root of all cf problems. If she only shows up genetically with no symptoms at all including a very normal sweat then she may or may not become symptomatic.

Does she clear her throat or cough at all on a regular basis? She should have a complete annual checkup just to establish a baseline this will consist of blood work to get her vitamin levels and kid/liver function. A breathing test called a pft and a chest xray and a sputum culture. It is possible for cfers to have cf infections in their lungs and not even know it.

So for comparison...
My son sweated a 12 which is very normal. He was found to have two cf mutations. He was tested due to my cf and us wanting to make absolutely sure he didn't have cf. Well he does. Even though he is not symptomatic and has a normal sweat and no "signs" of cf. We have him on a therapeutic regimine for preventative care because 1) it's easier on everyone if you do it from the get go, becomes a way of life 2) I could never live down having been able to prevent disease progression.

It's a small price to pay...for hopefully a healthy kid.
 
L

LouLou

New member
I'm guessing they did a genetic test on the older one. Did they also do a sweat test? If the sweat test came out abnormal(>60) or even borderline(40-60) then most likely she will develop symptoms sooner than later due to malfunctioning chloride channel...the root of all cf problems. If she only shows up genetically with no symptoms at all including a very normal sweat then she may or may not become symptomatic.

Does she clear her throat or cough at all on a regular basis? She should have a complete annual checkup just to establish a baseline this will consist of blood work to get her vitamin levels and kid/liver function. A breathing test called a pft and a chest xray and a sputum culture. It is possible for cfers to have cf infections in their lungs and not even know it.

So for comparison...
My son sweated a 12 which is very normal. He was found to have two cf mutations. He was tested due to my cf and us wanting to make absolutely sure he didn't have cf. Well he does. Even though he is not symptomatic and has a normal sweat and no "signs" of cf. We have him on a therapeutic regimine for preventative care because 1) it's easier on everyone if you do it from the get go, becomes a way of life 2) I could never live down having been able to prevent disease progression.

It's a small price to pay...for hopefully a healthy kid.
 
L

LouLou

New member
I'm guessing they did a genetic test on the older one. Did they also do a sweat test? If the sweat test came out abnormal(>60) or even borderline(40-60) then most likely she will develop symptoms sooner than later due to malfunctioning chloride channel...the root of all cf problems. If she only shows up genetically with no symptoms at all including a very normal sweat then she may or may not become symptomatic.

Does she clear her throat or cough at all on a regular basis? She should have a complete annual checkup just to establish a baseline this will consist of blood work to get her vitamin levels and kid/liver function. A breathing test called a pft and a chest xray and a sputum culture. It is possible for cfers to have cf infections in their lungs and not even know it.

So for comparison...
My son sweated a 12 which is very normal. He was found to have two cf mutations. He was tested due to my cf and us wanting to make absolutely sure he didn't have cf. Well he does. Even though he is not symptomatic and has a normal sweat and no "signs" of cf. We have him on a therapeutic regimine for preventative care because 1) it's easier on everyone if you do it from the get go, becomes a way of life 2) I could never live down having been able to prevent disease progression.

It's a small price to pay...for hopefully a healthy kid.
 
L

LouLou

New member
I'm guessing they did a genetic test on the older one. Did they also do a sweat test? If the sweat test came out abnormal(>60) or even borderline(40-60) then most likely she will develop symptoms sooner than later due to malfunctioning chloride channel...the root of all cf problems. If she only shows up genetically with no symptoms at all including a very normal sweat then she may or may not become symptomatic.
<br />
<br />Does she clear her throat or cough at all on a regular basis? She should have a complete annual checkup just to establish a baseline this will consist of blood work to get her vitamin levels and kid/liver function. A breathing test called a pft and a chest xray and a sputum culture. It is possible for cfers to have cf infections in their lungs and not even know it.
<br />
<br />So for comparison...
<br />My son sweated a 12 which is very normal. He was found to have two cf mutations. He was tested due to my cf and us wanting to make absolutely sure he didn't have cf. Well he does. Even though he is not symptomatic and has a normal sweat and no "signs" of cf. We have him on a therapeutic regimine for preventative care because 1) it's easier on everyone if you do it from the get go, becomes a way of life 2) I could never live down having been able to prevent disease progression.
<br />
<br />It's a small price to pay...for hopefully a healthy kid.
 
T

tybe40

New member
Thank you for your information. She will be having all those tests done, my sister just got the call last night. My sister did say she seemed to get a few sinus infections every year, but as far as coughing, nothing. Since she is a bit overweight, she did complain about not being able to catch her breath sometimes, but we had chalked it up to her weight. Who knows, now? The Dr. did say she is a level 7 (I have no idea what this means yet, something with a PBT or something??) which indicated she was medium to mild. Where as the younger one is 3-4. The third is just a carrier. Here's hoping for a normal sweat test. Thanks again.
 
T

tybe40

New member
Thank you for your information. She will be having all those tests done, my sister just got the call last night. My sister did say she seemed to get a few sinus infections every year, but as far as coughing, nothing. Since she is a bit overweight, she did complain about not being able to catch her breath sometimes, but we had chalked it up to her weight. Who knows, now? The Dr. did say she is a level 7 (I have no idea what this means yet, something with a PBT or something??) which indicated she was medium to mild. Where as the younger one is 3-4. The third is just a carrier. Here's hoping for a normal sweat test. Thanks again.
 
T

tybe40

New member
Thank you for your information. She will be having all those tests done, my sister just got the call last night. My sister did say she seemed to get a few sinus infections every year, but as far as coughing, nothing. Since she is a bit overweight, she did complain about not being able to catch her breath sometimes, but we had chalked it up to her weight. Who knows, now? The Dr. did say she is a level 7 (I have no idea what this means yet, something with a PBT or something??) which indicated she was medium to mild. Where as the younger one is 3-4. The third is just a carrier. Here's hoping for a normal sweat test. Thanks again.
 
T

tybe40

New member
Thank you for your information. She will be having all those tests done, my sister just got the call last night. My sister did say she seemed to get a few sinus infections every year, but as far as coughing, nothing. Since she is a bit overweight, she did complain about not being able to catch her breath sometimes, but we had chalked it up to her weight. Who knows, now? The Dr. did say she is a level 7 (I have no idea what this means yet, something with a PBT or something??) which indicated she was medium to mild. Where as the younger one is 3-4. The third is just a carrier. Here's hoping for a normal sweat test. Thanks again.
 
T

tybe40

New member
Thank you for your information. She will be having all those tests done, my sister just got the call last night. My sister did say she seemed to get a few sinus infections every year, but as far as coughing, nothing. Since she is a bit overweight, she did complain about not being able to catch her breath sometimes, but we had chalked it up to her weight. Who knows, now? The Dr. did say she is a level 7 (I have no idea what this means yet, something with a PBT or something??) which indicated she was medium to mild. Where as the younger one is 3-4. The third is just a carrier. Here's hoping for a normal sweat test. Thanks again.
 
You must log in or register to reply here.
Top