CVS Testing revealed baby will have CF.. HELP

D

Dori

New member
I can't stand my genetic counselor..can someone help answer some questions?

Are certain gene types/mutations worse than others?

How often are babies immediately born with CF?

If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis?

I am trying to be positive and not think the worse, does this ever get easier?

Do air purifiers help combat infections?



Mom 35/son Brandon 13 mos, gene carrier/new baby will have CF
 
D

Dori

New member
I can't stand my genetic counselor..can someone help answer some questions?

Are certain gene types/mutations worse than others?

How often are babies immediately born with CF?

If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis?

I am trying to be positive and not think the worse, does this ever get easier?

Do air purifiers help combat infections?



Mom 35/son Brandon 13 mos, gene carrier/new baby will have CF
 
D

Dori

New member
I can't stand my genetic counselor..can someone help answer some questions?

Are certain gene types/mutations worse than others?

How often are babies immediately born with CF?

If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis?

I am trying to be positive and not think the worse, does this ever get easier?

Do air purifiers help combat infections?



Mom 35/son Brandon 13 mos, gene carrier/new baby will have CF
 
D

Dori

New member
I can't stand my genetic counselor..can someone help answer some questions?

Are certain gene types/mutations worse than others?

How often are babies immediately born with CF?

If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis?

I am trying to be positive and not think the worse, does this ever get easier?

Do air purifiers help combat infections?



Mom 35/son Brandon 13 mos, gene carrier/new baby will have CF
 
D

Dori

New member
I can't stand my genetic counselor..can someone help answer some questions?
<br />
<br />Are certain gene types/mutations worse than others?
<br />
<br />How often are babies immediately born with CF?
<br />
<br />If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis?
<br />
<br />I am trying to be positive and not think the worse, does this ever get easier?
<br />
<br />Do air purifiers help combat infections?
<br />
<br />
<br />
<br />Mom 35/son Brandon 13 mos, gene carrier/new baby will have CF
 
M

Mommafirst

Guest
Hi Dori --

I'm sorry you got this bad news. I'll see if I can help answer your question. if not me, someone else can help...

<b>Are certain gene types/mutations worse than others? </b> I wish it was a clear yes/no answer. Sometimes. Some mutationsa are associated with more typical CF, some with more atypical, meaning a slower onset of symptoms. BUT, there seems to be other factors besides gene combinations because some siblings with the same mutations will have a different CF experience. Unfortunately, you just do preventative care and hope.

<b>How often are babies immediately born with CF? </b> All people with CF have it from birth. Most will have pancreatic issues from a very young age, but not all. Many don't develop lung issues right away. But it differs.

<b>If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis? </b> Unless your baby has two odd mutations (associated with atypical CF) you will have a diagnosis immediately. This is good and bad. Tracking down a diagnosis is tough work, but having it may limit your ability to get the baby life insurance.

It does get easier. Once you get to know your baby, you will be able to see him/her as a person and not just the CF. Its a hard road, but you will definitely get past this black cloud over your head feeling. Its hard to see your kid sick, but they have lots of great days. My daughter just turned 2 and hasn't been in the hospital for a year now. We have way more good days than bad ones.

<b>Do air purifiers help combat infections? </b> I have no clue.
 
M

Mommafirst

Guest
Hi Dori --

I'm sorry you got this bad news. I'll see if I can help answer your question. if not me, someone else can help...

<b>Are certain gene types/mutations worse than others? </b> I wish it was a clear yes/no answer. Sometimes. Some mutationsa are associated with more typical CF, some with more atypical, meaning a slower onset of symptoms. BUT, there seems to be other factors besides gene combinations because some siblings with the same mutations will have a different CF experience. Unfortunately, you just do preventative care and hope.

<b>How often are babies immediately born with CF? </b> All people with CF have it from birth. Most will have pancreatic issues from a very young age, but not all. Many don't develop lung issues right away. But it differs.

<b>If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis? </b> Unless your baby has two odd mutations (associated with atypical CF) you will have a diagnosis immediately. This is good and bad. Tracking down a diagnosis is tough work, but having it may limit your ability to get the baby life insurance.

It does get easier. Once you get to know your baby, you will be able to see him/her as a person and not just the CF. Its a hard road, but you will definitely get past this black cloud over your head feeling. Its hard to see your kid sick, but they have lots of great days. My daughter just turned 2 and hasn't been in the hospital for a year now. We have way more good days than bad ones.

<b>Do air purifiers help combat infections? </b> I have no clue.
 
M

Mommafirst

Guest
Hi Dori --

I'm sorry you got this bad news. I'll see if I can help answer your question. if not me, someone else can help...

<b>Are certain gene types/mutations worse than others? </b> I wish it was a clear yes/no answer. Sometimes. Some mutationsa are associated with more typical CF, some with more atypical, meaning a slower onset of symptoms. BUT, there seems to be other factors besides gene combinations because some siblings with the same mutations will have a different CF experience. Unfortunately, you just do preventative care and hope.

<b>How often are babies immediately born with CF? </b> All people with CF have it from birth. Most will have pancreatic issues from a very young age, but not all. Many don't develop lung issues right away. But it differs.

<b>If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis? </b> Unless your baby has two odd mutations (associated with atypical CF) you will have a diagnosis immediately. This is good and bad. Tracking down a diagnosis is tough work, but having it may limit your ability to get the baby life insurance.

It does get easier. Once you get to know your baby, you will be able to see him/her as a person and not just the CF. Its a hard road, but you will definitely get past this black cloud over your head feeling. Its hard to see your kid sick, but they have lots of great days. My daughter just turned 2 and hasn't been in the hospital for a year now. We have way more good days than bad ones.

<b>Do air purifiers help combat infections? </b> I have no clue.
 
M

Mommafirst

Guest
Hi Dori --

I'm sorry you got this bad news. I'll see if I can help answer your question. if not me, someone else can help...

<b>Are certain gene types/mutations worse than others? </b> I wish it was a clear yes/no answer. Sometimes. Some mutationsa are associated with more typical CF, some with more atypical, meaning a slower onset of symptoms. BUT, there seems to be other factors besides gene combinations because some siblings with the same mutations will have a different CF experience. Unfortunately, you just do preventative care and hope.

<b>How often are babies immediately born with CF? </b> All people with CF have it from birth. Most will have pancreatic issues from a very young age, but not all. Many don't develop lung issues right away. But it differs.

<b>If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis? </b> Unless your baby has two odd mutations (associated with atypical CF) you will have a diagnosis immediately. This is good and bad. Tracking down a diagnosis is tough work, but having it may limit your ability to get the baby life insurance.

It does get easier. Once you get to know your baby, you will be able to see him/her as a person and not just the CF. Its a hard road, but you will definitely get past this black cloud over your head feeling. Its hard to see your kid sick, but they have lots of great days. My daughter just turned 2 and hasn't been in the hospital for a year now. We have way more good days than bad ones.

<b>Do air purifiers help combat infections? </b> I have no clue.
 
M

Mommafirst

Guest
Hi Dori --
<br />
<br />I'm sorry you got this bad news. I'll see if I can help answer your question. if not me, someone else can help...
<br />
<br /><b>Are certain gene types/mutations worse than others? </b> I wish it was a clear yes/no answer. Sometimes. Some mutationsa are associated with more typical CF, some with more atypical, meaning a slower onset of symptoms. BUT, there seems to be other factors besides gene combinations because some siblings with the same mutations will have a different CF experience. Unfortunately, you just do preventative care and hope.
<br />
<br /><b>How often are babies immediately born with CF? </b> All people with CF have it from birth. Most will have pancreatic issues from a very young age, but not all. Many don't develop lung issues right away. But it differs.
<br />
<br /><b>If the baby is not born with it, is there something I can do to prepare for the eventual diagnosis? </b> Unless your baby has two odd mutations (associated with atypical CF) you will have a diagnosis immediately. This is good and bad. Tracking down a diagnosis is tough work, but having it may limit your ability to get the baby life insurance.
<br />
<br /> It does get easier. Once you get to know your baby, you will be able to see him/her as a person and not just the CF. Its a hard road, but you will definitely get past this black cloud over your head feeling. Its hard to see your kid sick, but they have lots of great days. My daughter just turned 2 and hasn't been in the hospital for a year now. We have way more good days than bad ones.
<br />
<br /><b>Do air purifiers help combat infections? </b> I have no clue.
 
D

Dori

New member
Heather~thanks so much for the info...it's a good start. I'm going to call my dr. and see if he can give me the specific type of gene for me and my husband. I knew that CF was associated with pancreatic problems, but I for some reason thought that was not usually the case.

My incompetent genetic counselor told me that the baby probably woud not develop CF until 2-5 years old, obviously, she sounds like she was wrong about that as well.

This is a great forum site, and I appreciate you taking the time to answer, I am going to use this site as a tool from now on, there is so much information to learn about. Thanks!
 
D

Dori

New member
Heather~thanks so much for the info...it's a good start. I'm going to call my dr. and see if he can give me the specific type of gene for me and my husband. I knew that CF was associated with pancreatic problems, but I for some reason thought that was not usually the case.

My incompetent genetic counselor told me that the baby probably woud not develop CF until 2-5 years old, obviously, she sounds like she was wrong about that as well.

This is a great forum site, and I appreciate you taking the time to answer, I am going to use this site as a tool from now on, there is so much information to learn about. Thanks!
 
D

Dori

New member
Heather~thanks so much for the info...it's a good start. I'm going to call my dr. and see if he can give me the specific type of gene for me and my husband. I knew that CF was associated with pancreatic problems, but I for some reason thought that was not usually the case.

My incompetent genetic counselor told me that the baby probably woud not develop CF until 2-5 years old, obviously, she sounds like she was wrong about that as well.

This is a great forum site, and I appreciate you taking the time to answer, I am going to use this site as a tool from now on, there is so much information to learn about. Thanks!
 
D

Dori

New member
Heather~thanks so much for the info...it's a good start. I'm going to call my dr. and see if he can give me the specific type of gene for me and my husband. I knew that CF was associated with pancreatic problems, but I for some reason thought that was not usually the case.

My incompetent genetic counselor told me that the baby probably woud not develop CF until 2-5 years old, obviously, she sounds like she was wrong about that as well.

This is a great forum site, and I appreciate you taking the time to answer, I am going to use this site as a tool from now on, there is so much information to learn about. Thanks!
 
D

Dori

New member
Heather~thanks so much for the info...it's a good start. I'm going to call my dr. and see if he can give me the specific type of gene for me and my husband. I knew that CF was associated with pancreatic problems, but I for some reason thought that was not usually the case.
<br />
<br />My incompetent genetic counselor told me that the baby probably woud not develop CF until 2-5 years old, obviously, she sounds like she was wrong about that as well.
<br />
<br />This is a great forum site, and I appreciate you taking the time to answer, I am going to use this site as a tool from now on, there is so much information to learn about. Thanks!
 
R

Rebjane

Super Moderator
Dori,

No one can predict the future of someone; CF or not. Genetic mutations can give us clues as to how Cf will present itself. However, lots of issues come into play as to when symptoms show for CF'ers. For example, compliance in treatments, economic issues, environment, social issues, quality of CF clinic(not all CF clinic are created equal, nor are all doctors). This site is a wonderful source of support and information on CF. Another source of information can be found at www.cff.org. It is the Cystic Fibrosis Foundation's website. I am sorry you got the CF diagnosis for your baby. Be careful when looking up about CF on the internet. Some information is outdated and just wrong. Not all doctors are up to date on Cf either. Feel free to ask lots and lots of questions. Someone here will know the answer. Oh, and I have a air purifier in my daughter's room. It does not combat infections, just cleans the dust out of the air(we have 2 cats and a dog<img src="i/expressions/face-icon-small-wink.gif" border="0">)
 
R

Rebjane

Super Moderator
Dori,

No one can predict the future of someone; CF or not. Genetic mutations can give us clues as to how Cf will present itself. However, lots of issues come into play as to when symptoms show for CF'ers. For example, compliance in treatments, economic issues, environment, social issues, quality of CF clinic(not all CF clinic are created equal, nor are all doctors). This site is a wonderful source of support and information on CF. Another source of information can be found at www.cff.org. It is the Cystic Fibrosis Foundation's website. I am sorry you got the CF diagnosis for your baby. Be careful when looking up about CF on the internet. Some information is outdated and just wrong. Not all doctors are up to date on Cf either. Feel free to ask lots and lots of questions. Someone here will know the answer. Oh, and I have a air purifier in my daughter's room. It does not combat infections, just cleans the dust out of the air(we have 2 cats and a dog<img src="i/expressions/face-icon-small-wink.gif" border="0">)
 
R

Rebjane

Super Moderator
Dori,

No one can predict the future of someone; CF or not. Genetic mutations can give us clues as to how Cf will present itself. However, lots of issues come into play as to when symptoms show for CF'ers. For example, compliance in treatments, economic issues, environment, social issues, quality of CF clinic(not all CF clinic are created equal, nor are all doctors). This site is a wonderful source of support and information on CF. Another source of information can be found at www.cff.org. It is the Cystic Fibrosis Foundation's website. I am sorry you got the CF diagnosis for your baby. Be careful when looking up about CF on the internet. Some information is outdated and just wrong. Not all doctors are up to date on Cf either. Feel free to ask lots and lots of questions. Someone here will know the answer. Oh, and I have a air purifier in my daughter's room. It does not combat infections, just cleans the dust out of the air(we have 2 cats and a dog<img src="i/expressions/face-icon-small-wink.gif" border="0">)
 
R

Rebjane

Super Moderator
Dori,

No one can predict the future of someone; CF or not. Genetic mutations can give us clues as to how Cf will present itself. However, lots of issues come into play as to when symptoms show for CF'ers. For example, compliance in treatments, economic issues, environment, social issues, quality of CF clinic(not all CF clinic are created equal, nor are all doctors). This site is a wonderful source of support and information on CF. Another source of information can be found at www.cff.org. It is the Cystic Fibrosis Foundation's website. I am sorry you got the CF diagnosis for your baby. Be careful when looking up about CF on the internet. Some information is outdated and just wrong. Not all doctors are up to date on Cf either. Feel free to ask lots and lots of questions. Someone here will know the answer. Oh, and I have a air purifier in my daughter's room. It does not combat infections, just cleans the dust out of the air(we have 2 cats and a dog<img src="i/expressions/face-icon-small-wink.gif" border="0">)
 
R

Rebjane

Super Moderator
Dori,

No one can predict the future of someone; CF or not. Genetic mutations can give us clues as to how Cf will present itself. However, lots of issues come into play as to when symptoms show for CF'ers. For example, compliance in treatments, economic issues, environment, social issues, quality of CF clinic(not all CF clinic are created equal, nor are all doctors). This site is a wonderful source of support and information on CF. Another source of information can be found at www.cff.org. It is the Cystic Fibrosis Foundation's website. I am sorry you got the CF diagnosis for your baby. Be careful when looking up about CF on the internet. Some information is outdated and just wrong. Not all doctors are up to date on Cf either. Feel free to ask lots and lots of questions. Someone here will know the answer. Oh, and I have a air purifier in my daughter's room. It does not combat infections, just cleans the dust out of the air(we have 2 cats and a dog<img src="i/expressions/face-icon-small-wink.gif" border="0">)
 
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