F508 and W1282x

[Rebjane]

Margeritachic,

I know all of this seems overwhelming right now. The good news is since the screening picked up those mutations; treatments start now; no missed diagnosis, avoiding things like failure to thrive. My daughter has deltaF508 and W1282X. She will be 5 at the end of this month. This message board is wonderful for suport and information from people who KNOW exactly where you are coming from. It's ok to feel angry, sad, depressed, pissed off , cheated, whatever. But know the outlook for a baby born with CF improves every year. The Cystic Fibrosis Foundation at www.cff.org is a reliable resource for CF information. Anyway, Please try and look at your baby girl and enjoy her. Come back for questions and support, lots of moms here just"get" it as well as there all lots of older CF'ers out there, you'll see.

 

[Rebjane]

Margeritachic,

I know all of this seems overwhelming right now. The good news is since the screening picked up those mutations; treatments start now; no missed diagnosis, avoiding things like failure to thrive. My daughter has deltaF508 and W1282X. She will be 5 at the end of this month. This message board is wonderful for suport and information from people who KNOW exactly where you are coming from. It's ok to feel angry, sad, depressed, pissed off , cheated, whatever. But know the outlook for a baby born with CF improves every year. The Cystic Fibrosis Foundation at www.cff.org is a reliable resource for CF information. Anyway, Please try and look at your baby girl and enjoy her. Come back for questions and support, lots of moms here just"get" it as well as there all lots of older CF'ers out there, you'll see.

 

[Rebjane]

Margeritachic,

I know all of this seems overwhelming right now. The good news is since the screening picked up those mutations; treatments start now; no missed diagnosis, avoiding things like failure to thrive. My daughter has deltaF508 and W1282X. She will be 5 at the end of this month. This message board is wonderful for suport and information from people who KNOW exactly where you are coming from. It's ok to feel angry, sad, depressed, pissed off , cheated, whatever. But know the outlook for a baby born with CF improves every year. The Cystic Fibrosis Foundation at www.cff.org is a reliable resource for CF information. Anyway, Please try and look at your baby girl and enjoy her. Come back for questions and support, lots of moms here just"get" it as well as there all lots of older CF'ers out there, you'll see.

 

[Rebjane]

Margeritachic,

I know all of this seems overwhelming right now. The good news is since the screening picked up those mutations; treatments start now; no missed diagnosis, avoiding things like failure to thrive. My daughter has deltaF508 and W1282X. She will be 5 at the end of this month. This message board is wonderful for suport and information from people who KNOW exactly where you are coming from. It's ok to feel angry, sad, depressed, pissed off , cheated, whatever. But know the outlook for a baby born with CF improves every year. The Cystic Fibrosis Foundation at www.cff.org is a reliable resource for CF information. Anyway, Please try and look at your baby girl and enjoy her. Come back for questions and support, lots of moms here just"get" it as well as there all lots of older CF'ers out there, you'll see.

 

[Rebjane]

Margeritachic,

I know all of this seems overwhelming right now. The good news is since the screening picked up those mutations; treatments start now; no missed diagnosis, avoiding things like failure to thrive. My daughter has deltaF508 and W1282X. She will be 5 at the end of this month. This message board is wonderful for suport and information from people who KNOW exactly where you are coming from. It's ok to feel angry, sad, depressed, pissed off , cheated, whatever. But know the outlook for a baby born with CF improves every year. The Cystic Fibrosis Foundation at www.cff.org is a reliable resource for CF information. Anyway, Please try and look at your baby girl and enjoy her. Come back for questions and support, lots of moms here just"get" it as well as there all lots of older CF'ers out there, you'll see.

 

[MargaritaChic]

How are you, your daughter, and her family doing?

You are in my thoughts and prayers.

 

[MargaritaChic]

How are you, your daughter, and her family doing?

You are in my thoughts and prayers.

 

[MargaritaChic]

How are you, your daughter, and her family doing?

You are in my thoughts and prayers.

 

[MargaritaChic]

How are you, your daughter, and her family doing?

You are in my thoughts and prayers.

 

[MargaritaChic]

How are you, your daughter, and her family doing?

You are in my thoughts and prayers.

 

[rnordlnd]

hello!
Well baby is now 5 weeks old and doing pretty well. She's still putting on weight but slowly. She had a positive sweat test and is to follow up with the CF Clinic specialist at Children's next week.

She is breastfed and having some issues after she eats. Crying from discomfort until she goes to the bathroom each time. They haven't started her on any enzemes yet. So hopefully after that she'll be feeling a little better. She's got an emormous appetite and my daughter suppliments with soy formula if needed.

How are you and your family doing?

I was able to spend a month with my daughter and her family after the birth and just left on Christmas Eve. Its been very tough not being there (for me lol I'm sure she was glad to have the time to just the 3 of them) I cried all the way to the airport lol.

 

[rnordlnd]

hello!
Well baby is now 5 weeks old and doing pretty well. She's still putting on weight but slowly. She had a positive sweat test and is to follow up with the CF Clinic specialist at Children's next week.

She is breastfed and having some issues after she eats. Crying from discomfort until she goes to the bathroom each time. They haven't started her on any enzemes yet. So hopefully after that she'll be feeling a little better. She's got an emormous appetite and my daughter suppliments with soy formula if needed.

How are you and your family doing?

I was able to spend a month with my daughter and her family after the birth and just left on Christmas Eve. Its been very tough not being there (for me lol I'm sure she was glad to have the time to just the 3 of them) I cried all the way to the airport lol.

 

[rnordlnd]

hello!
Well baby is now 5 weeks old and doing pretty well. She's still putting on weight but slowly. She had a positive sweat test and is to follow up with the CF Clinic specialist at Children's next week.

She is breastfed and having some issues after she eats. Crying from discomfort until she goes to the bathroom each time. They haven't started her on any enzemes yet. So hopefully after that she'll be feeling a little better. She's got an emormous appetite and my daughter suppliments with soy formula if needed.

How are you and your family doing?

I was able to spend a month with my daughter and her family after the birth and just left on Christmas Eve. Its been very tough not being there (for me lol I'm sure she was glad to have the time to just the 3 of them) I cried all the way to the airport lol.

 

[rnordlnd]

hello!
Well baby is now 5 weeks old and doing pretty well. She's still putting on weight but slowly. She had a positive sweat test and is to follow up with the CF Clinic specialist at Children's next week.

She is breastfed and having some issues after she eats. Crying from discomfort until she goes to the bathroom each time. They haven't started her on any enzemes yet. So hopefully after that she'll be feeling a little better. She's got an emormous appetite and my daughter suppliments with soy formula if needed.

How are you and your family doing?

I was able to spend a month with my daughter and her family after the birth and just left on Christmas Eve. Its been very tough not being there (for me lol I'm sure she was glad to have the time to just the 3 of them) I cried all the way to the airport lol.

 

[rnordlnd]

hello!
Well baby is now 5 weeks old and doing pretty well. She's still putting on weight but slowly. She had a positive sweat test and is to follow up with the CF Clinic specialist at Children's next week.

She is breastfed and having some issues after she eats. Crying from discomfort until she goes to the bathroom each time. They haven't started her on any enzemes yet. So hopefully after that she'll be feeling a little better. She's got an emormous appetite and my daughter suppliments with soy formula if needed.

How are you and your family doing?

I was able to spend a month with my daughter and her family after the birth and just left on Christmas Eve. Its been very tough not being there (for me lol I'm sure she was glad to have the time to just the 3 of them) I cried all the way to the airport lol.

 

[Alyssa]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rnordlnd</b></i>


I'd like some information on these two genes: F508 and W1282x.

With these 2 genes is it still possible that she doesn't? </end quote></div>

I'd have to say, no to that question....if she does in fact have both of those genes, she does have CF. Those are two very well known and common CF gene mutations.

Both genes are also very well known for pancreatic insufficiency -- she will most likely need enzymes. The good news is the early diagnosis. This really will help keep everyone ahead of the game by knowing to add the enzymes before she drops too much weight.

Welcome to the site

 

[Alyssa]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rnordlnd</b></i>


I'd like some information on these two genes: F508 and W1282x.

With these 2 genes is it still possible that she doesn't? </end quote></div>

I'd have to say, no to that question....if she does in fact have both of those genes, she does have CF. Those are two very well known and common CF gene mutations.

Both genes are also very well known for pancreatic insufficiency -- she will most likely need enzymes. The good news is the early diagnosis. This really will help keep everyone ahead of the game by knowing to add the enzymes before she drops too much weight.

Welcome to the site

 

[Alyssa]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rnordlnd</b></i>


I'd like some information on these two genes: F508 and W1282x.

With these 2 genes is it still possible that she doesn't? </end quote></div>

I'd have to say, no to that question....if she does in fact have both of those genes, she does have CF. Those are two very well known and common CF gene mutations.

Both genes are also very well known for pancreatic insufficiency -- she will most likely need enzymes. The good news is the early diagnosis. This really will help keep everyone ahead of the game by knowing to add the enzymes before she drops too much weight.

Welcome to the site

 

[Alyssa]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rnordlnd</b></i>


I'd like some information on these two genes: F508 and W1282x.

With these 2 genes is it still possible that she doesn't? </end quote>

I'd have to say, no to that question....if she does in fact have both of those genes, she does have CF. Those are two very well known and common CF gene mutations.

Both genes are also very well known for pancreatic insufficiency -- she will most likely need enzymes. The good news is the early diagnosis. This really will help keep everyone ahead of the game by knowing to add the enzymes before she drops too much weight.

Welcome to the site

 

[Alyssa]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rnordlnd</b></i>


I'd like some information on these two genes: F508 and W1282x.

With these 2 genes is it still possible that she doesn't? </end quote>

I'd have to say, no to that question....if she does in fact have both of those genes, she does have CF. Those are two very well known and common CF gene mutations.

Both genes are also very well known for pancreatic insufficiency -- she will most likely need enzymes. The good news is the early diagnosis. This really will help keep everyone ahead of the game by knowing to add the enzymes before she drops too much weight.

Welcome to the site