newly diagnosed at 5months old.

[Faith4Liliana]

I am new to CF. And I am also a new mom to a baby girl who was diagnosed with CF a month ago at 4months old. I was/am so scared for her. I knew/know nothing about CF. I have learn alot over the last month. And I have found this wonderful website. We have no family history of CF. So we had no idea that we were carries of CF. It was a shock to us and the family. I am still in shock. I wake up every day thinking maybe it was just a dream. But here and I am ready to face what life throws our way. She is doing really well. Her lungs are clear. She was started on Creon and has been gaining weight. She seems to feel so much better. I want to say thank you to everyone who puts their stories on here. It really does help me to read other peoples stories and to know I'm not alone. Thank you very much. Any advice you could give me would be greatly appreciated. Thanks again.

Jennifer - mother to 5month old w/cf

 

[Faith4Liliana]

I am new to CF. And I am also a new mom to a baby girl who was diagnosed with CF a month ago at 4months old. I was/am so scared for her. I knew/know nothing about CF. I have learn alot over the last month. And I have found this wonderful website. We have no family history of CF. So we had no idea that we were carries of CF. It was a shock to us and the family. I am still in shock. I wake up every day thinking maybe it was just a dream. But here and I am ready to face what life throws our way. She is doing really well. Her lungs are clear. She was started on Creon and has been gaining weight. She seems to feel so much better. I want to say thank you to everyone who puts their stories on here. It really does help me to read other peoples stories and to know I'm not alone. Thank you very much. Any advice you could give me would be greatly appreciated. Thanks again.

Jennifer - mother to 5month old w/cf

 

[Faith4Liliana]

I am new to CF. And I am also a new mom to a baby girl who was diagnosed with CF a month ago at 4months old. I was/am so scared for her. I knew/know nothing about CF. I have learn alot over the last month. And I have found this wonderful website. We have no family history of CF. So we had no idea that we were carries of CF. It was a shock to us and the family. I am still in shock. I wake up every day thinking maybe it was just a dream. But here and I am ready to face what life throws our way. She is doing really well. Her lungs are clear. She was started on Creon and has been gaining weight. She seems to feel so much better. I want to say thank you to everyone who puts their stories on here. It really does help me to read other peoples stories and to know I'm not alone. Thank you very much. Any advice you could give me would be greatly appreciated. Thanks again.

Jennifer - mother to 5month old w/cf

 

[JazzysMom]

Welcome to the forum. Sorry you have to meet a great group because of such an illness, but this group is one of the positive aspects of dealing with CF. Its understandable to be scared & I think it would be foolish to not be at least a little scared. Its finding the balance of strength, will, fear & confidence that is difficult. A lot of this will come with time. In the meantime ANY ?? or concerns that cant be handled (or even if they can be & you want other input) by the medical community please be sure to address it here!

 

[JazzysMom]

Welcome to the forum. Sorry you have to meet a great group because of such an illness, but this group is one of the positive aspects of dealing with CF. Its understandable to be scared & I think it would be foolish to not be at least a little scared. Its finding the balance of strength, will, fear & confidence that is difficult. A lot of this will come with time. In the meantime ANY ?? or concerns that cant be handled (or even if they can be & you want other input) by the medical community please be sure to address it here!

 

[JazzysMom]

Welcome to the forum. Sorry you have to meet a great group because of such an illness, but this group is one of the positive aspects of dealing with CF. Its understandable to be scared & I think it would be foolish to not be at least a little scared. Its finding the balance of strength, will, fear & confidence that is difficult. A lot of this will come with time. In the meantime ANY ?? or concerns that cant be handled (or even if they can be & you want other input) by the medical community please be sure to address it here!

 

[folione]

My son w/CF is now 3 1/2 and most days the only reminder of his CF is the medications - everything else about him is typical tot (for better and worse). There are definitely days when it's a real pain to get all the stuff done, but eventually the extra medicine-work becomes routine enough that it sort of fades a bit in to the background. My son just started pre-school and potty training at the same time recently and those two things are giving him a vastly harder time coping than anything he's dealt with for his CF...which is to say that in a wierd sense, the regularity and routine of his CF treatments is sort of this little bubble of calm predictability in the chaotic world of his childhood these days..

By the way, he has always been the least sick of all his tot friends - I think our greater vigilance and quicker treatment of the normal colds/bugs of childhood has given him a bit of an advantage over most kids; heck, our fanatical handwashing alone is probably keeping all of us better.

 

[folione]

My son w/CF is now 3 1/2 and most days the only reminder of his CF is the medications - everything else about him is typical tot (for better and worse). There are definitely days when it's a real pain to get all the stuff done, but eventually the extra medicine-work becomes routine enough that it sort of fades a bit in to the background. My son just started pre-school and potty training at the same time recently and those two things are giving him a vastly harder time coping than anything he's dealt with for his CF...which is to say that in a wierd sense, the regularity and routine of his CF treatments is sort of this little bubble of calm predictability in the chaotic world of his childhood these days..

By the way, he has always been the least sick of all his tot friends - I think our greater vigilance and quicker treatment of the normal colds/bugs of childhood has given him a bit of an advantage over most kids; heck, our fanatical handwashing alone is probably keeping all of us better.

 

[folione]

My son w/CF is now 3 1/2 and most days the only reminder of his CF is the medications - everything else about him is typical tot (for better and worse). There are definitely days when it's a real pain to get all the stuff done, but eventually the extra medicine-work becomes routine enough that it sort of fades a bit in to the background. My son just started pre-school and potty training at the same time recently and those two things are giving him a vastly harder time coping than anything he's dealt with for his CF...which is to say that in a wierd sense, the regularity and routine of his CF treatments is sort of this little bubble of calm predictability in the chaotic world of his childhood these days..

By the way, he has always been the least sick of all his tot friends - I think our greater vigilance and quicker treatment of the normal colds/bugs of childhood has given him a bit of an advantage over most kids; heck, our fanatical handwashing alone is probably keeping all of us better.

 

[Faith4Liliana]

I want to say thank you for your input. I really enjoy reading them. I do not know much about cf. But as of now she has nothing in her lungs can it be that she will never have the lung plm? I am not sure if a person can have one or another. Or do they get both parts of it. I read about there being mild cases, is it just with time I will find out what hers will be? Or is there a way to test? Thanks again. Jennifer mother of 5 month old with cf.

 

[Faith4Liliana]

I want to say thank you for your input. I really enjoy reading them. I do not know much about cf. But as of now she has nothing in her lungs can it be that she will never have the lung plm? I am not sure if a person can have one or another. Or do they get both parts of it. I read about there being mild cases, is it just with time I will find out what hers will be? Or is there a way to test? Thanks again. Jennifer mother of 5 month old with cf.

 

[Faith4Liliana]

I want to say thank you for your input. I really enjoy reading them. I do not know much about cf. But as of now she has nothing in her lungs can it be that she will never have the lung plm? I am not sure if a person can have one or another. Or do they get both parts of it. I read about there being mild cases, is it just with time I will find out what hers will be? Or is there a way to test? Thanks again. Jennifer mother of 5 month old with cf.

 

[Chaggie]

There is no way to test "how bad" it will be, depending on the class of mutations she has can be a determining factor, but by no means the only factor, in how severe/mild she will be. I happen to have a mild case with 2 class 2 mutations while others can have fairly severe cases with the same mutations.

 

[Chaggie]

There is no way to test "how bad" it will be, depending on the class of mutations she has can be a determining factor, but by no means the only factor, in how severe/mild she will be. I happen to have a mild case with 2 class 2 mutations while others can have fairly severe cases with the same mutations.

 

[Chaggie]

There is no way to test "how bad" it will be, depending on the class of mutations she has can be a determining factor, but by no means the only factor, in how severe/mild she will be. I happen to have a mild case with 2 class 2 mutations while others can have fairly severe cases with the same mutations.

 

[Faith4Liliana]

Folione- when was your son diagnosed? How long have you known? Do you have family history? Do you have other children? I do not understand how we could have known. In this day and age we should have known we carried the gene. She should have been tested at brith. Since we found out and she has been on meds. She is a much better baby. I feel bad because she was ill for the 1st months of life. Why don't they screen newborns for CF when they do they do the other screenings?

 

[Faith4Liliana]

Folione- when was your son diagnosed? How long have you known? Do you have family history? Do you have other children? I do not understand how we could have known. In this day and age we should have known we carried the gene. She should have been tested at brith. Since we found out and she has been on meds. She is a much better baby. I feel bad because she was ill for the 1st months of life. Why don't they screen newborns for CF when they do they do the other screenings?

 

[Faith4Liliana]

Folione- when was your son diagnosed? How long have you known? Do you have family history? Do you have other children? I do not understand how we could have known. In this day and age we should have known we carried the gene. She should have been tested at brith. Since we found out and she has been on meds. She is a much better baby. I feel bad because she was ill for the 1st months of life. Why don't they screen newborns for CF when they do they do the other screenings?

 

[Ratatosk]

DS was diagnosed shortly after he was born because of a bowel obstruction. The first year is pretty much a blur -- dealing with meds, cpt, diagnosis, denial -- kept thinking it was all a big mistake. No family history. I've combed the internet trying to find out how long people with his same gene mutation live, what are their symptoms -- but there can be children in the same family who have very very different symptoms -- some are bowel related, sinuses, lung...

I can remember feeling absolutely crushed when I asked the doctor about the possiblity of it just being "mild" cf and was told CF was a progressive disease -- it progesses differently with each person. They're born with normal lungs, but with infections, thick mucus problems occur, so it's important to practice good lung care, be proactive with your child's health care....

DS is a busy toddler. He goes to preschool. Has been in daycare since he was 3 months old. Tonight he starts up swimming lessons again. Like Folione's little guy, I swear DS does much better healthwise than some of his classmates and cousins who don't have CF.

Oh, and our state JUST began screening last January for CF. The first month there were 3 children in our City who were diagnosed. Prior to that there wasn't newborn screening. And the state to our east began screening last April.

 

[Ratatosk]

DS was diagnosed shortly after he was born because of a bowel obstruction. The first year is pretty much a blur -- dealing with meds, cpt, diagnosis, denial -- kept thinking it was all a big mistake. No family history. I've combed the internet trying to find out how long people with his same gene mutation live, what are their symptoms -- but there can be children in the same family who have very very different symptoms -- some are bowel related, sinuses, lung...

I can remember feeling absolutely crushed when I asked the doctor about the possiblity of it just being "mild" cf and was told CF was a progressive disease -- it progesses differently with each person. They're born with normal lungs, but with infections, thick mucus problems occur, so it's important to practice good lung care, be proactive with your child's health care....

DS is a busy toddler. He goes to preschool. Has been in daycare since he was 3 months old. Tonight he starts up swimming lessons again. Like Folione's little guy, I swear DS does much better healthwise than some of his classmates and cousins who don't have CF.

Oh, and our state JUST began screening last January for CF. The first month there were 3 children in our City who were diagnosed. Prior to that there wasn't newborn screening. And the state to our east began screening last April.