diagnosed without symptoms

[frysk]

My son was born in March and his newborn screening was "elevated" for CF. Thru subsequent testing we have learned that he received delta 508 from his mother and Q1012P from me. His sweat test was a 41. Q1012P is a "novel variant" and no one knows what the heck is the deal with it.

We have been told that he has CF but we don't know how it's going to effect him. The strange part is that he has absolutely no symptoms. And more than that the boy is growing like a weed. He is in the 94th percentile for weight and he is off the charts for his height. Is this unusual? How old should he been before we can stop worrying that he is going to develop symptoms? I have a pretty positive outlook but I'm very frustrated.

We are getting some baseline tests done soon. Then we will go from there...

 

[frysk]

My son was born in March and his newborn screening was "elevated" for CF. Thru subsequent testing we have learned that he received delta 508 from his mother and Q1012P from me. His sweat test was a 41. Q1012P is a "novel variant" and no one knows what the heck is the deal with it.

We have been told that he has CF but we don't know how it's going to effect him. The strange part is that he has absolutely no symptoms. And more than that the boy is growing like a weed. He is in the 94th percentile for weight and he is off the charts for his height. Is this unusual? How old should he been before we can stop worrying that he is going to develop symptoms? I have a pretty positive outlook but I'm very frustrated.

We are getting some baseline tests done soon. Then we will go from there...

 

[frysk]

My son was born in March and his newborn screening was "elevated" for CF. Thru subsequent testing we have learned that he received delta 508 from his mother and Q1012P from me. His sweat test was a 41. Q1012P is a "novel variant" and no one knows what the heck is the deal with it.

We have been told that he has CF but we don't know how it's going to effect him. The strange part is that he has absolutely no symptoms. And more than that the boy is growing like a weed. He is in the 94th percentile for weight and he is off the charts for his height. Is this unusual? How old should he been before we can stop worrying that he is going to develop symptoms? I have a pretty positive outlook but I'm very frustrated.

We are getting some baseline tests done soon. Then we will go from there...

 

[frysk]

My son was born in March and his newborn screening was "elevated" for CF. Thru subsequent testing we have learned that he received delta 508 from his mother and Q1012P from me. His sweat test was a 41. Q1012P is a "novel variant" and no one knows what the heck is the deal with it.

We have been told that he has CF but we don't know how it's going to effect him. The strange part is that he has absolutely no symptoms. And more than that the boy is growing like a weed. He is in the 94th percentile for weight and he is off the charts for his height. Is this unusual? How old should he been before we can stop worrying that he is going to develop symptoms? I have a pretty positive outlook but I'm very frustrated.

We are getting some baseline tests done soon. Then we will go from there...

 

[frysk]

My son was born in March and his newborn screening was "elevated" for CF. Thru subsequent testing we have learned that he received delta 508 from his mother and Q1012P from me. His sweat test was a 41. Q1012P is a "novel variant" and no one knows what the heck is the deal with it.
<br />
<br />We have been told that he has CF but we don't know how it's going to effect him. The strange part is that he has absolutely no symptoms. And more than that the boy is growing like a weed. He is in the 94th percentile for weight and he is off the charts for his height. Is this unusual? How old should he been before we can stop worrying that he is going to develop symptoms? I have a pretty positive outlook but I'm very frustrated.
<br />
<br />We are getting some baseline tests done soon. Then we will go from there...

 

[PlumPerfect]

my son was diagnosed with newborn screen. at first I saw no symptoms either. now he is showing some (he is 2 months) the thing is you may never notice symptom, may never have symptoms, some people don't get diagnosed till 3-4 and even some I heard being 70 and just getting diagnosed. depending on each person, yet it doesn't matter what gene mutations they may have the severity is very random. the great thing with newborn screen is you can now be pro-active in care to prevent damage from occuring. most people till now were severly sick and had damage done in which they hopefully were able to heal and build back.

Brandon has been growing just fine as well and does very good.

 

[PlumPerfect]

my son was diagnosed with newborn screen. at first I saw no symptoms either. now he is showing some (he is 2 months) the thing is you may never notice symptom, may never have symptoms, some people don't get diagnosed till 3-4 and even some I heard being 70 and just getting diagnosed. depending on each person, yet it doesn't matter what gene mutations they may have the severity is very random. the great thing with newborn screen is you can now be pro-active in care to prevent damage from occuring. most people till now were severly sick and had damage done in which they hopefully were able to heal and build back.

Brandon has been growing just fine as well and does very good.

 

[PlumPerfect]

my son was diagnosed with newborn screen. at first I saw no symptoms either. now he is showing some (he is 2 months) the thing is you may never notice symptom, may never have symptoms, some people don't get diagnosed till 3-4 and even some I heard being 70 and just getting diagnosed. depending on each person, yet it doesn't matter what gene mutations they may have the severity is very random. the great thing with newborn screen is you can now be pro-active in care to prevent damage from occuring. most people till now were severly sick and had damage done in which they hopefully were able to heal and build back.

Brandon has been growing just fine as well and does very good.

 

[PlumPerfect]

my son was diagnosed with newborn screen. at first I saw no symptoms either. now he is showing some (he is 2 months) the thing is you may never notice symptom, may never have symptoms, some people don't get diagnosed till 3-4 and even some I heard being 70 and just getting diagnosed. depending on each person, yet it doesn't matter what gene mutations they may have the severity is very random. the great thing with newborn screen is you can now be pro-active in care to prevent damage from occuring. most people till now were severly sick and had damage done in which they hopefully were able to heal and build back.

Brandon has been growing just fine as well and does very good.

 

[PlumPerfect]

my son was diagnosed with newborn screen. at first I saw no symptoms either. now he is showing some (he is 2 months) the thing is you may never notice symptom, may never have symptoms, some people don't get diagnosed till 3-4 and even some I heard being 70 and just getting diagnosed. depending on each person, yet it doesn't matter what gene mutations they may have the severity is very random. the great thing with newborn screen is you can now be pro-active in care to prevent damage from occuring. most people till now were severly sick and had damage done in which they hopefully were able to heal and build back.
<br />
<br />Brandon has been growing just fine as well and does very good.

 

[Buckeye]

From what I understand, children with CF are born with healthy lungs, the damage is done after months and sometimes years of infections. Some people are diagnosed shortly after birth, some are diagnosed in their childhood and some are diagnosed much much later. You never know when symptons will start.You might want to leave Steve from Ambry a post about your son's mutations and he might be able to give you information that you are not able to find elsewhere. Ambry is a genetic testing company. He has a thread stickied to the top of the Family section.Have you been to the CF clinic yet?

 

[Buckeye]

From what I understand, children with CF are born with healthy lungs, the damage is done after months and sometimes years of infections. Some people are diagnosed shortly after birth, some are diagnosed in their childhood and some are diagnosed much much later. You never know when symptons will start.You might want to leave Steve from Ambry a post about your son's mutations and he might be able to give you information that you are not able to find elsewhere. Ambry is a genetic testing company. He has a thread stickied to the top of the Family section.Have you been to the CF clinic yet?

 

[Buckeye]

From what I understand, children with CF are born with healthy lungs, the damage is done after months and sometimes years of infections. Some people are diagnosed shortly after birth, some are diagnosed in their childhood and some are diagnosed much much later. You never know when symptons will start.You might want to leave Steve from Ambry a post about your son's mutations and he might be able to give you information that you are not able to find elsewhere. Ambry is a genetic testing company. He has a thread stickied to the top of the Family section.Have you been to the CF clinic yet?

 

[Buckeye]

From what I understand, children with CF are born with healthy lungs, the damage is done after months and sometimes years of infections. Some people are diagnosed shortly after birth, some are diagnosed in their childhood and some are diagnosed much much later. You never know when symptons will start.You might want to leave Steve from Ambry a post about your son's mutations and he might be able to give you information that you are not able to find elsewhere. Ambry is a genetic testing company. He has a thread stickied to the top of the Family section.Have you been to the CF clinic yet?

 

[Buckeye]

<p>From what I understand, children with CF are born with healthy lungs, the damage is done after months and sometimes years of infections. Some people are diagnosed shortly after birth, some are diagnosed in their childhood and some are diagnosed much much later. You never know when symptons will start.<p>You might want to leave Steve from Ambry a post about your son's mutations and he might be able to give you information that you are not able to find elsewhere. Ambry is a genetic testing company. He has a thread stickied to the top of the Family section.<p>Have you been to the CF clinic yet?

 

[Alyssa]

My daughter was 5 years old and my son was 21 years old before we started seeing symptoms. Both kids are pancreatic sufficient and have no issues with weight - see my blog for more details and send me a private message if you want to chat more in detail.

Welcome to the boards!

 

[Alyssa]

My daughter was 5 years old and my son was 21 years old before we started seeing symptoms. Both kids are pancreatic sufficient and have no issues with weight - see my blog for more details and send me a private message if you want to chat more in detail.

Welcome to the boards!

 

[Alyssa]

My daughter was 5 years old and my son was 21 years old before we started seeing symptoms. Both kids are pancreatic sufficient and have no issues with weight - see my blog for more details and send me a private message if you want to chat more in detail.

Welcome to the boards!

 

[Alyssa]

My daughter was 5 years old and my son was 21 years old before we started seeing symptoms. Both kids are pancreatic sufficient and have no issues with weight - see my blog for more details and send me a private message if you want to chat more in detail.

Welcome to the boards!

 

[Alyssa]

My daughter was 5 years old and my son was 21 years old before we started seeing symptoms. Both kids are pancreatic sufficient and have no issues with weight - see my blog for more details and send me a private message if you want to chat more in detail.
<br />
<br />Welcome to the boards!