CVS Testing revealed baby will have CF.. HELP

[MargaritaChic]

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

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.</end quote></div>

Is it possible she said your child may not have symptoms of CF until then? Some children do not have a great number of symptoms when they are very young.

The majority of CF'ers have pancreatic insufficancy. My daughter is 3 months old and this is currently her only symptom. If it was not for Newborn Screening, we would never have known she has CF.

Sorry to hear about your baby's diagnosis. It is good that you are trying to find out as much about CF as you can. There are treatment options available to help your child.

{hugs}

 

[MargaritaChic]

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

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.</end quote></div>

Is it possible she said your child may not have symptoms of CF until then? Some children do not have a great number of symptoms when they are very young.

The majority of CF'ers have pancreatic insufficancy. My daughter is 3 months old and this is currently her only symptom. If it was not for Newborn Screening, we would never have known she has CF.

Sorry to hear about your baby's diagnosis. It is good that you are trying to find out as much about CF as you can. There are treatment options available to help your child.

{hugs}

 

[MargaritaChic]

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

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.</end quote></div>

Is it possible she said your child may not have symptoms of CF until then? Some children do not have a great number of symptoms when they are very young.

The majority of CF'ers have pancreatic insufficancy. My daughter is 3 months old and this is currently her only symptom. If it was not for Newborn Screening, we would never have known she has CF.

Sorry to hear about your baby's diagnosis. It is good that you are trying to find out as much about CF as you can. There are treatment options available to help your child.

{hugs}

 

[MargaritaChic]

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

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.</end quote>

Is it possible she said your child may not have symptoms of CF until then? Some children do not have a great number of symptoms when they are very young.

The majority of CF'ers have pancreatic insufficancy. My daughter is 3 months old and this is currently her only symptom. If it was not for Newborn Screening, we would never have known she has CF.

Sorry to hear about your baby's diagnosis. It is good that you are trying to find out as much about CF as you can. There are treatment options available to help your child.

{hugs}

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Dori</b></i>
<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.</end quote>
<br />
<br />Is it possible she said your child may not have symptoms of CF until then? Some children do not have a great number of symptoms when they are very young.
<br />
<br />The majority of CF'ers have pancreatic insufficancy. My daughter is 3 months old and this is currently her only symptom. If it was not for Newborn Screening, we would never have known she has CF.
<br />
<br />Sorry to hear about your baby's diagnosis. It is good that you are trying to find out as much about CF as you can. There are treatment options available to help your child.
<br />
<br />{hugs}

 

[kathiel]

Actually you can still get life insurance even with CF, and it is not ridiculously priced. I have forgotten the specifics, but I am in the process of getting it for anyone who is interested. For example for my 4 year old with CF a $15,000 policy is $18 a month.

 

[kathiel]

Actually you can still get life insurance even with CF, and it is not ridiculously priced. I have forgotten the specifics, but I am in the process of getting it for anyone who is interested. For example for my 4 year old with CF a $15,000 policy is $18 a month.

 

[kathiel]

Actually you can still get life insurance even with CF, and it is not ridiculously priced. I have forgotten the specifics, but I am in the process of getting it for anyone who is interested. For example for my 4 year old with CF a $15,000 policy is $18 a month.

 

[kathiel]

Actually you can still get life insurance even with CF, and it is not ridiculously priced. I have forgotten the specifics, but I am in the process of getting it for anyone who is interested. For example for my 4 year old with CF a $15,000 policy is $18 a month.

 

[kathiel]

Actually you can still get life insurance even with CF, and it is not ridiculously priced. I have forgotten the specifics, but I am in the process of getting it for anyone who is interested. For example for my 4 year old with CF a $15,000 policy is $18 a month.

 

[Mommafirst]

Kathiel -- I'd love additional information on companies that didn't charge crazy money for life insurance. I just know that the Gerber plan denied us. If you don't want to post it, can you PM me. Though I'd think there would be lots of folks interested on the family board. Thanks!!!

 

[Mommafirst]

Kathiel -- I'd love additional information on companies that didn't charge crazy money for life insurance. I just know that the Gerber plan denied us. If you don't want to post it, can you PM me. Though I'd think there would be lots of folks interested on the family board. Thanks!!!

 

[Mommafirst]

Kathiel -- I'd love additional information on companies that didn't charge crazy money for life insurance. I just know that the Gerber plan denied us. If you don't want to post it, can you PM me. Though I'd think there would be lots of folks interested on the family board. Thanks!!!

 

[Mommafirst]

Kathiel -- I'd love additional information on companies that didn't charge crazy money for life insurance. I just know that the Gerber plan denied us. If you don't want to post it, can you PM me. Though I'd think there would be lots of folks interested on the family board. Thanks!!!

 

[Mommafirst]

Kathiel -- I'd love additional information on companies that didn't charge crazy money for life insurance. I just know that the Gerber plan denied us. If you don't want to post it, can you PM me. Though I'd think there would be lots of folks interested on the family board. Thanks!!!

 

[Alyssa]

Yes, the genetic councilor was not using the correct verbiage.... some people don't show any symptoms until later on but actually if a person has two CF genes, they have CF from conception/birth..... some people do not get diagnosed until later because they never knew until then, but a person doesn't "develop CF" you either have it or you don't from conception.... when you figure it out or present with symptoms is a different story.

As others have said yes, genes do play a roll and sometimes you can glean a certain amount of information by the class of gene that a person with CF has... there are 5 classes.... the last two classes 4 and 5 are considered mild variant and most often cause later in life onset of symptoms because these genes allow the cells to function closer to normal than class 1, 2 or 3 genes. Also certain genes are know for pancreatic sufficiency or not.

My kids have one class 2 and one class 4 gene. My daughter presented with lung symptoms at age 5 but was misdiagnosed until age 14. My son was diagnosed at age 18 but didn't show any symptoms until age 21. They both are pancreatic sufficient and do not have any GI problems at all.

You just never know what you are going to get for sure!

Best wishes and please keep us posted on what is happening.

Oh, I forgot... do air purifiers help combat infection.... No stricktly speaking they will not help fight off an existing infection (antibiotics are the best course of action there) but often times people with CF also have an asthma and allergy component too and air purifiers definitely help with that. Be sure to get only a HEPA filter, they are the only filter recommended by the American Lung association. We have two whole house filters in our house (one upstairs and one down stairs) and a third on that our daughter kept for herself now that she lives alone.

We purchased our Austin Air units <a target=_blank class=ftalternatingbarlinklarge href="http://www.alerg.com/page/A/CTGY/AIR2">http://www.alerg.com/page/A/CTGY/AIR2</a> from Alerg.com

 

[Alyssa]

Yes, the genetic councilor was not using the correct verbiage.... some people don't show any symptoms until later on but actually if a person has two CF genes, they have CF from conception/birth..... some people do not get diagnosed until later because they never knew until then, but a person doesn't "develop CF" you either have it or you don't from conception.... when you figure it out or present with symptoms is a different story.

As others have said yes, genes do play a roll and sometimes you can glean a certain amount of information by the class of gene that a person with CF has... there are 5 classes.... the last two classes 4 and 5 are considered mild variant and most often cause later in life onset of symptoms because these genes allow the cells to function closer to normal than class 1, 2 or 3 genes. Also certain genes are know for pancreatic sufficiency or not.

My kids have one class 2 and one class 4 gene. My daughter presented with lung symptoms at age 5 but was misdiagnosed until age 14. My son was diagnosed at age 18 but didn't show any symptoms until age 21. They both are pancreatic sufficient and do not have any GI problems at all.

You just never know what you are going to get for sure!

Best wishes and please keep us posted on what is happening.

Oh, I forgot... do air purifiers help combat infection.... No stricktly speaking they will not help fight off an existing infection (antibiotics are the best course of action there) but often times people with CF also have an asthma and allergy component too and air purifiers definitely help with that. Be sure to get only a HEPA filter, they are the only filter recommended by the American Lung association. We have two whole house filters in our house (one upstairs and one down stairs) and a third on that our daughter kept for herself now that she lives alone.

We purchased our Austin Air units <a target=_blank class=ftalternatingbarlinklarge href="http://www.alerg.com/page/A/CTGY/AIR2">http://www.alerg.com/page/A/CTGY/AIR2</a> from Alerg.com

 

[Alyssa]

Yes, the genetic councilor was not using the correct verbiage.... some people don't show any symptoms until later on but actually if a person has two CF genes, they have CF from conception/birth..... some people do not get diagnosed until later because they never knew until then, but a person doesn't "develop CF" you either have it or you don't from conception.... when you figure it out or present with symptoms is a different story.

As others have said yes, genes do play a roll and sometimes you can glean a certain amount of information by the class of gene that a person with CF has... there are 5 classes.... the last two classes 4 and 5 are considered mild variant and most often cause later in life onset of symptoms because these genes allow the cells to function closer to normal than class 1, 2 or 3 genes. Also certain genes are know for pancreatic sufficiency or not.

My kids have one class 2 and one class 4 gene. My daughter presented with lung symptoms at age 5 but was misdiagnosed until age 14. My son was diagnosed at age 18 but didn't show any symptoms until age 21. They both are pancreatic sufficient and do not have any GI problems at all.

You just never know what you are going to get for sure!

Best wishes and please keep us posted on what is happening.

Oh, I forgot... do air purifiers help combat infection.... No stricktly speaking they will not help fight off an existing infection (antibiotics are the best course of action there) but often times people with CF also have an asthma and allergy component too and air purifiers definitely help with that. Be sure to get only a HEPA filter, they are the only filter recommended by the American Lung association. We have two whole house filters in our house (one upstairs and one down stairs) and a third on that our daughter kept for herself now that she lives alone.

We purchased our Austin Air units <a target=_blank class=ftalternatingbarlinklarge href="http://www.alerg.com/page/A/CTGY/AIR2">http://www.alerg.com/page/A/CTGY/AIR2</a> from Alerg.com

 

[Alyssa]

Yes, the genetic councilor was not using the correct verbiage.... some people don't show any symptoms until later on but actually if a person has two CF genes, they have CF from conception/birth..... some people do not get diagnosed until later because they never knew until then, but a person doesn't "develop CF" you either have it or you don't from conception.... when you figure it out or present with symptoms is a different story.

As others have said yes, genes do play a roll and sometimes you can glean a certain amount of information by the class of gene that a person with CF has... there are 5 classes.... the last two classes 4 and 5 are considered mild variant and most often cause later in life onset of symptoms because these genes allow the cells to function closer to normal than class 1, 2 or 3 genes. Also certain genes are know for pancreatic sufficiency or not.

My kids have one class 2 and one class 4 gene. My daughter presented with lung symptoms at age 5 but was misdiagnosed until age 14. My son was diagnosed at age 18 but didn't show any symptoms until age 21. They both are pancreatic sufficient and do not have any GI problems at all.

You just never know what you are going to get for sure!

Best wishes and please keep us posted on what is happening.

Oh, I forgot... do air purifiers help combat infection.... No stricktly speaking they will not help fight off an existing infection (antibiotics are the best course of action there) but often times people with CF also have an asthma and allergy component too and air purifiers definitely help with that. Be sure to get only a HEPA filter, they are the only filter recommended by the American Lung association. We have two whole house filters in our house (one upstairs and one down stairs) and a third on that our daughter kept for herself now that she lives alone.

We purchased our Austin Air units <a target=_blank class=ftalternatingbarlinklarge href="http://www.alerg.com/page/A/CTGY/AIR2">http://www.alerg.com/page/A/CTGY/AIR2</a> from Alerg.com

 

[Alyssa]

Yes, the genetic councilor was not using the correct verbiage.... some people don't show any symptoms until later on but actually if a person has two CF genes, they have CF from conception/birth..... some people do not get diagnosed until later because they never knew until then, but a person doesn't "develop CF" you either have it or you don't from conception.... when you figure it out or present with symptoms is a different story.
<br />
<br />As others have said yes, genes do play a roll and sometimes you can glean a certain amount of information by the class of gene that a person with CF has... there are 5 classes.... the last two classes 4 and 5 are considered mild variant and most often cause later in life onset of symptoms because these genes allow the cells to function closer to normal than class 1, 2 or 3 genes. Also certain genes are know for pancreatic sufficiency or not.
<br />
<br />My kids have one class 2 and one class 4 gene. My daughter presented with lung symptoms at age 5 but was misdiagnosed until age 14. My son was diagnosed at age 18 but didn't show any symptoms until age 21. They both are pancreatic sufficient and do not have any GI problems at all.
<br />
<br />You just never know what you are going to get for sure!
<br />
<br />Best wishes and please keep us posted on what is happening.
<br />
<br />Oh, I forgot... do air purifiers help combat infection.... No stricktly speaking they will not help fight off an existing infection (antibiotics are the best course of action there) but often times people with CF also have an asthma and allergy component too and air purifiers definitely help with that. Be sure to get only a HEPA filter, they are the only filter recommended by the American Lung association. We have two whole house filters in our house (one upstairs and one down stairs) and a third on that our daughter kept for herself now that she lives alone.
<br />
<br />We purchased our Austin Air units <a target=_blank class=ftalternatingbarlinklarge href="http://www.alerg.com/page/A/CTGY/AIR2">http://www.alerg.com/page/A/CTGY/AIR2</a> from Alerg.com