My son was diagnosed with CF yesterday at 10 days old!

[Alyssa]

Ditto to what everyone else has already said + a couple of new thoughts:

1) Parent's worry -- it's what we do..... try not to obsess
2) Out dated information -- don't believe everything you read, even if it's not outdated, not everyone experiences the same problems -- CF symptoms can vary quite a bit - just because you see certain things can happen, it doesn't mean it will happen to your child.
3) Yes, get the other three tested - it's standard procedure.
4) Be careful of sweat tests only - seek genetic testing (see my blog page for details on sweat test results)
5) My son didn't show any CF symptoms until 21 years old
6) Congratulations on finding this website - you will learn a lot of good stuff here!
7) Contact me through the private message feature if you would like any more details
8) Even though it doesn't seem like it, getting an early diagnosis for your infant is a good thing - at least you will get the benefit of any necessary treatments ahead of time instead of spending time wondering what's wrong (this happens a lot!)

Do you see any symptoms yet or did they pick it up in a newborn screening?

Welcome to the site!

 

[Alyssa]

Ditto to what everyone else has already said + a couple of new thoughts:

1) Parent's worry -- it's what we do..... try not to obsess
2) Out dated information -- don't believe everything you read, even if it's not outdated, not everyone experiences the same problems -- CF symptoms can vary quite a bit - just because you see certain things can happen, it doesn't mean it will happen to your child.
3) Yes, get the other three tested - it's standard procedure.
4) Be careful of sweat tests only - seek genetic testing (see my blog page for details on sweat test results)
5) My son didn't show any CF symptoms until 21 years old
6) Congratulations on finding this website - you will learn a lot of good stuff here!
7) Contact me through the private message feature if you would like any more details
8) Even though it doesn't seem like it, getting an early diagnosis for your infant is a good thing - at least you will get the benefit of any necessary treatments ahead of time instead of spending time wondering what's wrong (this happens a lot!)

Do you see any symptoms yet or did they pick it up in a newborn screening?

Welcome to the site!

 

[Alyssa]

Ditto to what everyone else has already said + a couple of new thoughts:

1) Parent's worry -- it's what we do..... try not to obsess
2) Out dated information -- don't believe everything you read, even if it's not outdated, not everyone experiences the same problems -- CF symptoms can vary quite a bit - just because you see certain things can happen, it doesn't mean it will happen to your child.
3) Yes, get the other three tested - it's standard procedure.
4) Be careful of sweat tests only - seek genetic testing (see my blog page for details on sweat test results)
5) My son didn't show any CF symptoms until 21 years old
6) Congratulations on finding this website - you will learn a lot of good stuff here!
7) Contact me through the private message feature if you would like any more details
8) Even though it doesn't seem like it, getting an early diagnosis for your infant is a good thing - at least you will get the benefit of any necessary treatments ahead of time instead of spending time wondering what's wrong (this happens a lot!)

Do you see any symptoms yet or did they pick it up in a newborn screening?

Welcome to the site!

 

[Alyssa]

Ditto to what everyone else has already said + a couple of new thoughts:

1) Parent's worry -- it's what we do..... try not to obsess
2) Out dated information -- don't believe everything you read, even if it's not outdated, not everyone experiences the same problems -- CF symptoms can vary quite a bit - just because you see certain things can happen, it doesn't mean it will happen to your child.
3) Yes, get the other three tested - it's standard procedure.
4) Be careful of sweat tests only - seek genetic testing (see my blog page for details on sweat test results)
5) My son didn't show any CF symptoms until 21 years old
6) Congratulations on finding this website - you will learn a lot of good stuff here!
7) Contact me through the private message feature if you would like any more details
8) Even though it doesn't seem like it, getting an early diagnosis for your infant is a good thing - at least you will get the benefit of any necessary treatments ahead of time instead of spending time wondering what's wrong (this happens a lot!)

Do you see any symptoms yet or did they pick it up in a newborn screening?

Welcome to the site!

 

[Alyssa]

Ditto to what everyone else has already said + a couple of new thoughts:

1) Parent's worry -- it's what we do..... try not to obsess
2) Out dated information -- don't believe everything you read, even if it's not outdated, not everyone experiences the same problems -- CF symptoms can vary quite a bit - just because you see certain things can happen, it doesn't mean it will happen to your child.
3) Yes, get the other three tested - it's standard procedure.
4) Be careful of sweat tests only - seek genetic testing (see my blog page for details on sweat test results)
5) My son didn't show any CF symptoms until 21 years old
6) Congratulations on finding this website - you will learn a lot of good stuff here!
7) Contact me through the private message feature if you would like any more details
8) Even though it doesn't seem like it, getting an early diagnosis for your infant is a good thing - at least you will get the benefit of any necessary treatments ahead of time instead of spending time wondering what's wrong (this happens a lot!)

Do you see any symptoms yet or did they pick it up in a newborn screening?

Welcome to the site!

 

[paugh22]

Hi
Max is showing signs but it was actually the blood tests at birth that showed he had CF. He goes to the pediatrician today for a weight check. hopefully he will be back up to 6 lbs.

thanks again everyone!

 

[paugh22]

Hi
Max is showing signs but it was actually the blood tests at birth that showed he had CF. He goes to the pediatrician today for a weight check. hopefully he will be back up to 6 lbs.

thanks again everyone!

 

[paugh22]

Hi
Max is showing signs but it was actually the blood tests at birth that showed he had CF. He goes to the pediatrician today for a weight check. hopefully he will be back up to 6 lbs.

thanks again everyone!

 

[paugh22]

Hi
Max is showing signs but it was actually the blood tests at birth that showed he had CF. He goes to the pediatrician today for a weight check. hopefully he will be back up to 6 lbs.

thanks again everyone!

 

[paugh22]

Hi
Max is showing signs but it was actually the blood tests at birth that showed he had CF. He goes to the pediatrician today for a weight check. hopefully he will be back up to 6 lbs.

thanks again everyone!

 

[Ratatosk]

It's all a bit overwhelming at first -- the new meds, routine -- I remember thinking omigosh, we have to do CPT 3-4 times a day forever! And every time the doctor adds a new med, I get a bit overwhelmed again. But it's not like we have a choice in the matter. Gotta do what we can to keep our kids happy and healthy.

 

[Ratatosk]

It's all a bit overwhelming at first -- the new meds, routine -- I remember thinking omigosh, we have to do CPT 3-4 times a day forever! And every time the doctor adds a new med, I get a bit overwhelmed again. But it's not like we have a choice in the matter. Gotta do what we can to keep our kids happy and healthy.

 

[Ratatosk]

It's all a bit overwhelming at first -- the new meds, routine -- I remember thinking omigosh, we have to do CPT 3-4 times a day forever! And every time the doctor adds a new med, I get a bit overwhelmed again. But it's not like we have a choice in the matter. Gotta do what we can to keep our kids happy and healthy.

 

[Ratatosk]

It's all a bit overwhelming at first -- the new meds, routine -- I remember thinking omigosh, we have to do CPT 3-4 times a day forever! And every time the doctor adds a new med, I get a bit overwhelmed again. But it's not like we have a choice in the matter. Gotta do what we can to keep our kids happy and healthy.

 

[Ratatosk]

It's all a bit overwhelming at first -- the new meds, routine -- I remember thinking omigosh, we have to do CPT 3-4 times a day forever! And every time the doctor adds a new med, I get a bit overwhelmed again. But it's not like we have a choice in the matter. Gotta do what we can to keep our kids happy and healthy.

 

[DEES4]

Hi! I know exactly how you are feeling. My 4th child was also diagnosed with cf at 2 weeks old. It was quite the shock to us. We never expected for our child to be diagnosed with a genetic disease after having three healthy children. I am glad you found this forum so early in the diagnosis. It will be encouraging and helpful to you.
Carrie

 

[DEES4]

Hi! I know exactly how you are feeling. My 4th child was also diagnosed with cf at 2 weeks old. It was quite the shock to us. We never expected for our child to be diagnosed with a genetic disease after having three healthy children. I am glad you found this forum so early in the diagnosis. It will be encouraging and helpful to you.
Carrie

 

[DEES4]

Hi! I know exactly how you are feeling. My 4th child was also diagnosed with cf at 2 weeks old. It was quite the shock to us. We never expected for our child to be diagnosed with a genetic disease after having three healthy children. I am glad you found this forum so early in the diagnosis. It will be encouraging and helpful to you.
Carrie

 

[DEES4]

Hi! I know exactly how you are feeling. My 4th child was also diagnosed with cf at 2 weeks old. It was quite the shock to us. We never expected for our child to be diagnosed with a genetic disease after having three healthy children. I am glad you found this forum so early in the diagnosis. It will be encouraging and helpful to you.
Carrie

 

[DEES4]

Hi! I know exactly how you are feeling. My 4th child was also diagnosed with cf at 2 weeks old. It was quite the shock to us. We never expected for our child to be diagnosed with a genetic disease after having three healthy children. I am glad you found this forum so early in the diagnosis. It will be encouraging and helpful to you.
Carrie