over the initial shock...

mommy2diego

New member
my name is Andrea and my son Diego was diagnosed through newborn screening. He has mutattions DELf508 and d1152h. anybody have or have kids with these?

He's 4 months old...so far, pancreatic sufficient, but has respitory issues...wheezing and crackling....thought he had rsv but that came neg. not culturing any pseudo, but treated for 2 weeks on antibiotics for other positive cultures. i'm blessed that he's growing and gaining weight. he's on albuterol and hypertonic saline for now.

couple of questions:

1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?

2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.

3. also, how old when you transition to a vest?

thanks, and i hope to learn a lot from this board, as this is all brand new to me.
 

mommy2diego

New member
my name is Andrea and my son Diego was diagnosed through newborn screening. He has mutattions DELf508 and d1152h. anybody have or have kids with these?

He's 4 months old...so far, pancreatic sufficient, but has respitory issues...wheezing and crackling....thought he had rsv but that came neg. not culturing any pseudo, but treated for 2 weeks on antibiotics for other positive cultures. i'm blessed that he's growing and gaining weight. he's on albuterol and hypertonic saline for now.

couple of questions:

1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?

2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.

3. also, how old when you transition to a vest?

thanks, and i hope to learn a lot from this board, as this is all brand new to me.
 

mommy2diego

New member
my name is Andrea and my son Diego was diagnosed through newborn screening. He has mutattions DELf508 and d1152h. anybody have or have kids with these?

He's 4 months old...so far, pancreatic sufficient, but has respitory issues...wheezing and crackling....thought he had rsv but that came neg. not culturing any pseudo, but treated for 2 weeks on antibiotics for other positive cultures. i'm blessed that he's growing and gaining weight. he's on albuterol and hypertonic saline for now.

couple of questions:

1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?

2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.

3. also, how old when you transition to a vest?

thanks, and i hope to learn a lot from this board, as this is all brand new to me.
 

mommy2diego

New member
my name is Andrea and my son Diego was diagnosed through newborn screening. He has mutattions DELf508 and d1152h. anybody have or have kids with these?

He's 4 months old...so far, pancreatic sufficient, but has respitory issues...wheezing and crackling....thought he had rsv but that came neg. not culturing any pseudo, but treated for 2 weeks on antibiotics for other positive cultures. i'm blessed that he's growing and gaining weight. he's on albuterol and hypertonic saline for now.

couple of questions:

1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?

2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.

3. also, how old when you transition to a vest?

thanks, and i hope to learn a lot from this board, as this is all brand new to me.
 

mommy2diego

New member
my name is Andrea and my son Diego was diagnosed through newborn screening. He has mutattions DELf508 and d1152h. anybody have or have kids with these?
<br />
<br />He's 4 months old...so far, pancreatic sufficient, but has respitory issues...wheezing and crackling....thought he had rsv but that came neg. not culturing any pseudo, but treated for 2 weeks on antibiotics for other positive cultures. i'm blessed that he's growing and gaining weight. he's on albuterol and hypertonic saline for now.
<br />
<br />couple of questions:
<br />
<br />1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?
<br />
<br />2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.
<br />
<br />3. also, how old when you transition to a vest?
<br />
<br />thanks, and i hope to learn a lot from this board, as this is all brand new to me.
 

just1more

New member
I'm going to leave answers to some of the other members, but welcome to the site.

You will find a wealth of information and some great people here.
 

just1more

New member
I'm going to leave answers to some of the other members, but welcome to the site.

You will find a wealth of information and some great people here.
 

just1more

New member
I'm going to leave answers to some of the other members, but welcome to the site.

You will find a wealth of information and some great people here.
 

just1more

New member
I'm going to leave answers to some of the other members, but welcome to the site.

You will find a wealth of information and some great people here.
 

just1more

New member
I'm going to leave answers to some of the other members, but welcome to the site.
<br />
<br />You will find a wealth of information and some great people here.
 
B

brewz2

Guest
Hi Andrea,

Welcome to the site, you've found a great place to ask all your questions..Both of my children have ddf508 mutation. My daughter wasn't dx'd until two so I can't really say exactly when she became pancreatic insufficient, but I can tell you that my son was pancreatic sufficient for the entire first year of his life. He didn't need to start enzymes until he was about a year old. Both are in the high 90's for their BMI - it's wonderful that your son is growing and gaining weight!

As for the vest, both of my children started using it at around two years old. I know they have to have a certain chest circum. before they can use it. When it comes to the bronchoscopy, I can't really help you with it. They almost did one on my daughter about a year ago when she was six, but opted not to based on lab work that came back showing signs of improvement in something they were watching. So your doctor may have good reason for doing one, but just make sure to have a list of questions ready for them when the time comes to make sure you're in agreement with them. You can find a list of accredited CF clinics is you go to CFF.org if you haven't found a clinic yet.

Please feel free to ask any and every question, no matter how crazy it may sounds - there's lots of information out there to educate yourself with!
 
B

brewz2

Guest
Hi Andrea,

Welcome to the site, you've found a great place to ask all your questions..Both of my children have ddf508 mutation. My daughter wasn't dx'd until two so I can't really say exactly when she became pancreatic insufficient, but I can tell you that my son was pancreatic sufficient for the entire first year of his life. He didn't need to start enzymes until he was about a year old. Both are in the high 90's for their BMI - it's wonderful that your son is growing and gaining weight!

As for the vest, both of my children started using it at around two years old. I know they have to have a certain chest circum. before they can use it. When it comes to the bronchoscopy, I can't really help you with it. They almost did one on my daughter about a year ago when she was six, but opted not to based on lab work that came back showing signs of improvement in something they were watching. So your doctor may have good reason for doing one, but just make sure to have a list of questions ready for them when the time comes to make sure you're in agreement with them. You can find a list of accredited CF clinics is you go to CFF.org if you haven't found a clinic yet.

Please feel free to ask any and every question, no matter how crazy it may sounds - there's lots of information out there to educate yourself with!
 
B

brewz2

Guest
Hi Andrea,

Welcome to the site, you've found a great place to ask all your questions..Both of my children have ddf508 mutation. My daughter wasn't dx'd until two so I can't really say exactly when she became pancreatic insufficient, but I can tell you that my son was pancreatic sufficient for the entire first year of his life. He didn't need to start enzymes until he was about a year old. Both are in the high 90's for their BMI - it's wonderful that your son is growing and gaining weight!

As for the vest, both of my children started using it at around two years old. I know they have to have a certain chest circum. before they can use it. When it comes to the bronchoscopy, I can't really help you with it. They almost did one on my daughter about a year ago when she was six, but opted not to based on lab work that came back showing signs of improvement in something they were watching. So your doctor may have good reason for doing one, but just make sure to have a list of questions ready for them when the time comes to make sure you're in agreement with them. You can find a list of accredited CF clinics is you go to CFF.org if you haven't found a clinic yet.

Please feel free to ask any and every question, no matter how crazy it may sounds - there's lots of information out there to educate yourself with!
 
B

brewz2

Guest
Hi Andrea,

Welcome to the site, you've found a great place to ask all your questions..Both of my children have ddf508 mutation. My daughter wasn't dx'd until two so I can't really say exactly when she became pancreatic insufficient, but I can tell you that my son was pancreatic sufficient for the entire first year of his life. He didn't need to start enzymes until he was about a year old. Both are in the high 90's for their BMI - it's wonderful that your son is growing and gaining weight!

As for the vest, both of my children started using it at around two years old. I know they have to have a certain chest circum. before they can use it. When it comes to the bronchoscopy, I can't really help you with it. They almost did one on my daughter about a year ago when she was six, but opted not to based on lab work that came back showing signs of improvement in something they were watching. So your doctor may have good reason for doing one, but just make sure to have a list of questions ready for them when the time comes to make sure you're in agreement with them. You can find a list of accredited CF clinics is you go to CFF.org if you haven't found a clinic yet.

Please feel free to ask any and every question, no matter how crazy it may sounds - there's lots of information out there to educate yourself with!
 
B

brewz2

Guest
Hi Andrea,
<br />
<br />Welcome to the site, you've found a great place to ask all your questions..Both of my children have ddf508 mutation. My daughter wasn't dx'd until two so I can't really say exactly when she became pancreatic insufficient, but I can tell you that my son was pancreatic sufficient for the entire first year of his life. He didn't need to start enzymes until he was about a year old. Both are in the high 90's for their BMI - it's wonderful that your son is growing and gaining weight!
<br />
<br />As for the vest, both of my children started using it at around two years old. I know they have to have a certain chest circum. before they can use it. When it comes to the bronchoscopy, I can't really help you with it. They almost did one on my daughter about a year ago when she was six, but opted not to based on lab work that came back showing signs of improvement in something they were watching. So your doctor may have good reason for doing one, but just make sure to have a list of questions ready for them when the time comes to make sure you're in agreement with them. You can find a list of accredited CF clinics is you go to CFF.org if you haven't found a clinic yet.
<br />
<br />Please feel free to ask any and every question, no matter how crazy it may sounds - there's lots of information out there to educate yourself with!
 
M

Mommafirst

Guest
Hello Andrea --

Welcome to the place you never wanted to need or expected to be here, I suppose.

You asked:

1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?

I do. My daughter is still "technically" considered PS, but her numbers are very close now to insufficient, so she's treated with enzymes anyway. Our doctor recently told me that it is not uncommon for babies to be born sufficient and lost pancreatic sufficiency over time.

2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.

Yup, we've been through this as well. My daughter was 18 months old. It was very simple, seriously. The worst part was the coming out of anesthesia part and that was just a really tough hour. AFter that, she was back to normal in about another hour. The whole thing was WAY harder on me and my psyche than it was on my daughter.

3. also, how old when you transition to a vest?

My daughter was hospitalized at 13 months. That hospitalization pushed a process that allowed us to get the vest earlier than the CF center here usually does it. She was transitioned around 14 months.

Keep asking the questions. It does get easier, though there are good and bad days for sure.
 
M

Mommafirst

Guest
Hello Andrea --

Welcome to the place you never wanted to need or expected to be here, I suppose.

You asked:

1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?

I do. My daughter is still "technically" considered PS, but her numbers are very close now to insufficient, so she's treated with enzymes anyway. Our doctor recently told me that it is not uncommon for babies to be born sufficient and lost pancreatic sufficiency over time.

2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.

Yup, we've been through this as well. My daughter was 18 months old. It was very simple, seriously. The worst part was the coming out of anesthesia part and that was just a really tough hour. AFter that, she was back to normal in about another hour. The whole thing was WAY harder on me and my psyche than it was on my daughter.

3. also, how old when you transition to a vest?

My daughter was hospitalized at 13 months. That hospitalization pushed a process that allowed us to get the vest earlier than the CF center here usually does it. She was transitioned around 14 months.

Keep asking the questions. It does get easier, though there are good and bad days for sure.
 
M

Mommafirst

Guest
Hello Andrea --

Welcome to the place you never wanted to need or expected to be here, I suppose.

You asked:

1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?

I do. My daughter is still "technically" considered PS, but her numbers are very close now to insufficient, so she's treated with enzymes anyway. Our doctor recently told me that it is not uncommon for babies to be born sufficient and lost pancreatic sufficiency over time.

2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.

Yup, we've been through this as well. My daughter was 18 months old. It was very simple, seriously. The worst part was the coming out of anesthesia part and that was just a really tough hour. AFter that, she was back to normal in about another hour. The whole thing was WAY harder on me and my psyche than it was on my daughter.

3. also, how old when you transition to a vest?

My daughter was hospitalized at 13 months. That hospitalization pushed a process that allowed us to get the vest earlier than the CF center here usually does it. She was transitioned around 14 months.

Keep asking the questions. It does get easier, though there are good and bad days for sure.
 
M

Mommafirst

Guest
Hello Andrea --

Welcome to the place you never wanted to need or expected to be here, I suppose.

You asked:

1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?

I do. My daughter is still "technically" considered PS, but her numbers are very close now to insufficient, so she's treated with enzymes anyway. Our doctor recently told me that it is not uncommon for babies to be born sufficient and lost pancreatic sufficiency over time.

2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.

Yup, we've been through this as well. My daughter was 18 months old. It was very simple, seriously. The worst part was the coming out of anesthesia part and that was just a really tough hour. AFter that, she was back to normal in about another hour. The whole thing was WAY harder on me and my psyche than it was on my daughter.

3. also, how old when you transition to a vest?

My daughter was hospitalized at 13 months. That hospitalization pushed a process that allowed us to get the vest earlier than the CF center here usually does it. She was transitioned around 14 months.

Keep asking the questions. It does get easier, though there are good and bad days for sure.
 
M

Mommafirst

Guest
Hello Andrea --
<br />
<br />Welcome to the place you never wanted to need or expected to be here, I suppose.
<br />
<br />You asked:
<br />
<br />1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?
<br />
<br />I do. My daughter is still "technically" considered PS, but her numbers are very close now to insufficient, so she's treated with enzymes anyway. Our doctor recently told me that it is not uncommon for babies to be born sufficient and lost pancreatic sufficiency over time.
<br />
<br />2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.
<br />
<br />Yup, we've been through this as well. My daughter was 18 months old. It was very simple, seriously. The worst part was the coming out of anesthesia part and that was just a really tough hour. AFter that, she was back to normal in about another hour. The whole thing was WAY harder on me and my psyche than it was on my daughter.
<br />
<br />3. also, how old when you transition to a vest?
<br />
<br />My daughter was hospitalized at 13 months. That hospitalization pushed a process that allowed us to get the vest earlier than the CF center here usually does it. She was transitioned around 14 months.
<br />
<br />Keep asking the questions. It does get easier, though there are good and bad days for sure.
 
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