Neg sweat test yet still positive?!

[Ratatosk]

The way it was explained to us is that CF is a progressive disease. People wcf are born with normal lungs; however, due to the thick mucus, infections, the lungs will eventually become affected. So it's important to be vigilant, keep your child healthy -- we started doing chest physiotherapy when DS was a few days old.

And even identifying the genes, it's hard to predict the severity. You can maybe get a general idea -- delta f508 most likely digeestive issues... You can have two children in a household with the same mutation, yet different issues. DS' mainly has digestive issues -- need pancreatic enzymes to help digest fat. You can drive yourself BONKERS trying researching the mutations and trying to determine what to expect.

One thing to remember is that he's STILL a normal little boy. Try not to worry so much that you miss out on milestones. Take it one step at a time. I worried constantly at first about what ifs -- what if he gets sick, ends up in the hospital again....

And my little one is an ornery happy 6 year old who leads a very busy life. He's very outgoing, enrolled in a few sporting programs right now....

 

[Ratatosk]

The way it was explained to us is that CF is a progressive disease. People wcf are born with normal lungs; however, due to the thick mucus, infections, the lungs will eventually become affected. So it's important to be vigilant, keep your child healthy -- we started doing chest physiotherapy when DS was a few days old.

And even identifying the genes, it's hard to predict the severity. You can maybe get a general idea -- delta f508 most likely digeestive issues... You can have two children in a household with the same mutation, yet different issues. DS' mainly has digestive issues -- need pancreatic enzymes to help digest fat. You can drive yourself BONKERS trying researching the mutations and trying to determine what to expect.

One thing to remember is that he's STILL a normal little boy. Try not to worry so much that you miss out on milestones. Take it one step at a time. I worried constantly at first about what ifs -- what if he gets sick, ends up in the hospital again....

And my little one is an ornery happy 6 year old who leads a very busy life. He's very outgoing, enrolled in a few sporting programs right now....

 

[Ratatosk]

The way it was explained to us is that CF is a progressive disease. People wcf are born with normal lungs; however, due to the thick mucus, infections, the lungs will eventually become affected. So it's important to be vigilant, keep your child healthy -- we started doing chest physiotherapy when DS was a few days old.

And even identifying the genes, it's hard to predict the severity. You can maybe get a general idea -- delta f508 most likely digeestive issues... You can have two children in a household with the same mutation, yet different issues. DS' mainly has digestive issues -- need pancreatic enzymes to help digest fat. You can drive yourself BONKERS trying researching the mutations and trying to determine what to expect.

One thing to remember is that he's STILL a normal little boy. Try not to worry so much that you miss out on milestones. Take it one step at a time. I worried constantly at first about what ifs -- what if he gets sick, ends up in the hospital again....

And my little one is an ornery happy 6 year old who leads a very busy life. He's very outgoing, enrolled in a few sporting programs right now....

 

[Ratatosk]

The way it was explained to us is that CF is a progressive disease. People wcf are born with normal lungs; however, due to the thick mucus, infections, the lungs will eventually become affected. So it's important to be vigilant, keep your child healthy -- we started doing chest physiotherapy when DS was a few days old.

And even identifying the genes, it's hard to predict the severity. You can maybe get a general idea -- delta f508 most likely digeestive issues... You can have two children in a household with the same mutation, yet different issues. DS' mainly has digestive issues -- need pancreatic enzymes to help digest fat. You can drive yourself BONKERS trying researching the mutations and trying to determine what to expect.

One thing to remember is that he's STILL a normal little boy. Try not to worry so much that you miss out on milestones. Take it one step at a time. I worried constantly at first about what ifs -- what if he gets sick, ends up in the hospital again....

And my little one is an ornery happy 6 year old who leads a very busy life. He's very outgoing, enrolled in a few sporting programs right now....

 

[Ratatosk]

The way it was explained to us is that CF is a progressive disease. People wcf are born with normal lungs; however, due to the thick mucus, infections, the lungs will eventually become affected. So it's important to be vigilant, keep your child healthy -- we started doing chest physiotherapy when DS was a few days old.
<br />
<br />And even identifying the genes, it's hard to predict the severity. You can maybe get a general idea -- delta f508 most likely digeestive issues... You can have two children in a household with the same mutation, yet different issues. DS' mainly has digestive issues -- need pancreatic enzymes to help digest fat. You can drive yourself BONKERS trying researching the mutations and trying to determine what to expect.
<br />
<br />One thing to remember is that he's STILL a normal little boy. Try not to worry so much that you miss out on milestones. Take it one step at a time. I worried constantly at first about what ifs -- what if he gets sick, ends up in the hospital again....
<br />
<br />And my little one is an ornery happy 6 year old who leads a very busy life. He's very outgoing, enrolled in a few sporting programs right now....

 

[JORDYSMOM]

Hi and welcome. I'm sorry you've had to join us here, but I hope this site will be as helpful to you as it has been for me.

Stacey

 

[JORDYSMOM]

Hi and welcome. I'm sorry you've had to join us here, but I hope this site will be as helpful to you as it has been for me.

Stacey

 

[JORDYSMOM]

Hi and welcome. I'm sorry you've had to join us here, but I hope this site will be as helpful to you as it has been for me.

Stacey

 

[JORDYSMOM]

Hi and welcome. I'm sorry you've had to join us here, but I hope this site will be as helpful to you as it has been for me.

Stacey

 

[JORDYSMOM]

Hi and welcome. I'm sorry you've had to join us here, but I hope this site will be as helpful to you as it has been for me.
<br />
<br />Stacey

 

[JazzysMom]

We have a few members with negative or borderline sweat tests, but the genetic testing came back showing 2 mutations.

Some people try to connect the levels of the sweat tests to severity, but there is nothing really documented. Just like connecting what to expect according to characteristics of a mutation.

As Liza said you can have 2 siblings with the same mutations, same compliance & environment, but totally different clinical outcomes.

It is amazing how CF works. Thats why its so mind bloggling & heart numbing for the new parents of newly diagnosed babies.

They usually "look normal", but many of us adult CFers do too!

Just be deligent with care, advocate with the doctors for your little one, educate yourself by asking ?? or reading up on the newer things available.

HUGS

 

[JazzysMom]

We have a few members with negative or borderline sweat tests, but the genetic testing came back showing 2 mutations.

Some people try to connect the levels of the sweat tests to severity, but there is nothing really documented. Just like connecting what to expect according to characteristics of a mutation.

As Liza said you can have 2 siblings with the same mutations, same compliance & environment, but totally different clinical outcomes.

It is amazing how CF works. Thats why its so mind bloggling & heart numbing for the new parents of newly diagnosed babies.

They usually "look normal", but many of us adult CFers do too!

Just be deligent with care, advocate with the doctors for your little one, educate yourself by asking ?? or reading up on the newer things available.

HUGS

 

[JazzysMom]

We have a few members with negative or borderline sweat tests, but the genetic testing came back showing 2 mutations.

Some people try to connect the levels of the sweat tests to severity, but there is nothing really documented. Just like connecting what to expect according to characteristics of a mutation.

As Liza said you can have 2 siblings with the same mutations, same compliance & environment, but totally different clinical outcomes.

It is amazing how CF works. Thats why its so mind bloggling & heart numbing for the new parents of newly diagnosed babies.

They usually "look normal", but many of us adult CFers do too!

Just be deligent with care, advocate with the doctors for your little one, educate yourself by asking ?? or reading up on the newer things available.

HUGS

 

[JazzysMom]

We have a few members with negative or borderline sweat tests, but the genetic testing came back showing 2 mutations.

Some people try to connect the levels of the sweat tests to severity, but there is nothing really documented. Just like connecting what to expect according to characteristics of a mutation.

As Liza said you can have 2 siblings with the same mutations, same compliance & environment, but totally different clinical outcomes.

It is amazing how CF works. Thats why its so mind bloggling & heart numbing for the new parents of newly diagnosed babies.

They usually "look normal", but many of us adult CFers do too!

Just be deligent with care, advocate with the doctors for your little one, educate yourself by asking ?? or reading up on the newer things available.

HUGS

 

[JazzysMom]

We have a few members with negative or borderline sweat tests, but the genetic testing came back showing 2 mutations.
<br />
<br />Some people try to connect the levels of the sweat tests to severity, but there is nothing really documented. Just like connecting what to expect according to characteristics of a mutation.
<br />
<br />As Liza said you can have 2 siblings with the same mutations, same compliance & environment, but totally different clinical outcomes.
<br />
<br />It is amazing how CF works. Thats why its so mind bloggling & heart numbing for the new parents of newly diagnosed babies.
<br />
<br />They usually "look normal", but many of us adult CFers do too!
<br />
<br />Just be deligent with care, advocate with the doctors for your little one, educate yourself by asking ?? or reading up on the newer things available.
<br />
<br />HUGS

 

[laurakaura]

yes its very hard because he looks normal and is showing zero symptoms. its hard to wrap your mind around it. he has gained nearly 5 and half lbs since he was born, he isnt salty and his diapers are normal and doesnt cough. i guess the symptoms can all come later

 

[laurakaura]

yes its very hard because he looks normal and is showing zero symptoms. its hard to wrap your mind around it. he has gained nearly 5 and half lbs since he was born, he isnt salty and his diapers are normal and doesnt cough. i guess the symptoms can all come later

 

[laurakaura]

yes its very hard because he looks normal and is showing zero symptoms. its hard to wrap your mind around it. he has gained nearly 5 and half lbs since he was born, he isnt salty and his diapers are normal and doesnt cough. i guess the symptoms can all come later

 

[laurakaura]

yes its very hard because he looks normal and is showing zero symptoms. its hard to wrap your mind around it. he has gained nearly 5 and half lbs since he was born, he isnt salty and his diapers are normal and doesnt cough. i guess the symptoms can all come later

 

[laurakaura]

yes its very hard because he looks normal and is showing zero symptoms. its hard to wrap your mind around it. he has gained nearly 5 and half lbs since he was born, he isnt salty and his diapers are normal and doesnt cough. i guess the symptoms can all come later