5 out 8 children have now been tested

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Chilemom

New member
Tina
I have been thinking on you all day. The only thing that occurs to me is that or all your childs that test positive has your mutation R117H, or you have CF so you have two mutations, which i don´t think so.

the thing is that your son has been ok , all of them. So we don´t have to think that in the future it will be diferent, especially because now you, and all of them will be able to prevent.
My husband said that the picture of your family is what a lot of people want ( like us) a nice and big family, and it will continue that way, no matter cf, or anything else.
and one day at the time.
muchos abrazos (lots of hugs)
fran
 
C

Chilemom

New member
Tina
I have been thinking on you all day. The only thing that occurs to me is that or all your childs that test positive has your mutation R117H, or you have CF so you have two mutations, which i don´t think so.

the thing is that your son has been ok , all of them. So we don´t have to think that in the future it will be diferent, especially because now you, and all of them will be able to prevent.
My husband said that the picture of your family is what a lot of people want ( like us) a nice and big family, and it will continue that way, no matter cf, or anything else.
and one day at the time.
muchos abrazos (lots of hugs)
fran
 
C

Chilemom

New member
Tina
I have been thinking on you all day. The only thing that occurs to me is that or all your childs that test positive has your mutation R117H, or you have CF so you have two mutations, which i don´t think so.

the thing is that your son has been ok , all of them. So we don´t have to think that in the future it will be diferent, especially because now you, and all of them will be able to prevent.
My husband said that the picture of your family is what a lot of people want ( like us) a nice and big family, and it will continue that way, no matter cf, or anything else.
and one day at the time.
muchos abrazos (lots of hugs)
fran
 
C

Chilemom

New member
Tina
I have been thinking on you all day. The only thing that occurs to me is that or all your childs that test positive has your mutation R117H, or you have CF so you have two mutations, which i don´t think so.

the thing is that your son has been ok , all of them. So we don´t have to think that in the future it will be diferent, especially because now you, and all of them will be able to prevent.
My husband said that the picture of your family is what a lot of people want ( like us) a nice and big family, and it will continue that way, no matter cf, or anything else.
and one day at the time.
muchos abrazos (lots of hugs)
fran
 
C

Chilemom

New member
Tina
<br /> I have been thinking on you all day. The only thing that occurs to me is that or all your childs that test positive has your mutation R117H, or you have CF so you have two mutations, which i don´t think so.
<br />
<br />the thing is that your son has been ok , all of them. So we don´t have to think that in the future it will be diferent, especially because now you, and all of them will be able to prevent.
<br />My husband said that the picture of your family is what a lot of people want ( like us) a nice and big family, and it will continue that way, no matter cf, or anything else.
<br />and one day at the time.
<br />muchos abrazos (lots of hugs)
<br />fran
 
H

holmfamily1992

New member
What I am wondering is, is it possible for me to have CF and test negative on the sweat chloride? My sweat Chloride was a 28. I had them test me yesterday because my asthma is getting worse the older I get.

Tina
 
H

holmfamily1992

New member
What I am wondering is, is it possible for me to have CF and test negative on the sweat chloride? My sweat Chloride was a 28. I had them test me yesterday because my asthma is getting worse the older I get.

Tina
 
H

holmfamily1992

New member
What I am wondering is, is it possible for me to have CF and test negative on the sweat chloride? My sweat Chloride was a 28. I had them test me yesterday because my asthma is getting worse the older I get.

Tina
 
H

holmfamily1992

New member
What I am wondering is, is it possible for me to have CF and test negative on the sweat chloride? My sweat Chloride was a 28. I had them test me yesterday because my asthma is getting worse the older I get.

Tina
 
H

holmfamily1992

New member
What I am wondering is, is it possible for me to have CF and test negative on the sweat chloride? My sweat Chloride was a 28. I had them test me yesterday because my asthma is getting worse the older I get.
<br />
<br />Tina
 
2

2005CFmom

Super Moderator
I am so sorry that your family is going through this. I can't even imagine the whirlwind you must be in right now.

Yes, it is true that you need to have 2 CF mutations in order to have CF. The problem is that even Ambry is not 100%. I have heard that there is a part of the gene that cannot be tested for mutations. So I believe even the full panel Ambry test with sequencing and deletions will only detect 99% of mutations. (I still don't completely understand this).

Good luck to you and your family.
 
2

2005CFmom

Super Moderator
I am so sorry that your family is going through this. I can't even imagine the whirlwind you must be in right now.

Yes, it is true that you need to have 2 CF mutations in order to have CF. The problem is that even Ambry is not 100%. I have heard that there is a part of the gene that cannot be tested for mutations. So I believe even the full panel Ambry test with sequencing and deletions will only detect 99% of mutations. (I still don't completely understand this).

Good luck to you and your family.
 
2

2005CFmom

Super Moderator
I am so sorry that your family is going through this. I can't even imagine the whirlwind you must be in right now.

Yes, it is true that you need to have 2 CF mutations in order to have CF. The problem is that even Ambry is not 100%. I have heard that there is a part of the gene that cannot be tested for mutations. So I believe even the full panel Ambry test with sequencing and deletions will only detect 99% of mutations. (I still don't completely understand this).

Good luck to you and your family.
 
2

2005CFmom

Super Moderator
I am so sorry that your family is going through this. I can't even imagine the whirlwind you must be in right now.

Yes, it is true that you need to have 2 CF mutations in order to have CF. The problem is that even Ambry is not 100%. I have heard that there is a part of the gene that cannot be tested for mutations. So I believe even the full panel Ambry test with sequencing and deletions will only detect 99% of mutations. (I still don't completely understand this).

Good luck to you and your family.
 
2

2005CFmom

Super Moderator
I am so sorry that your family is going through this. I can't even imagine the whirlwind you must be in right now.
<br />
<br />Yes, it is true that you need to have 2 CF mutations in order to have CF. The problem is that even Ambry is not 100%. I have heard that there is a part of the gene that cannot be tested for mutations. So I believe even the full panel Ambry test with sequencing and deletions will only detect 99% of mutations. (I still don't completely understand this).
<br />
<br />Good luck to you and your family.
 
B

BabyBeauty

New member
Wow! I am sorry you are going through this! My thoughts and prayers are with you!

You mentioned having to make a lot of phone calls. If the phone calls are to inform loved ones of what is going on I would suggest starting a caringbridge website if you haven't already. I find it much easier to let everyone know about my little ones progress through the site rather than phone calls.
 
B

BabyBeauty

New member
Wow! I am sorry you are going through this! My thoughts and prayers are with you!

You mentioned having to make a lot of phone calls. If the phone calls are to inform loved ones of what is going on I would suggest starting a caringbridge website if you haven't already. I find it much easier to let everyone know about my little ones progress through the site rather than phone calls.
 
B

BabyBeauty

New member
Wow! I am sorry you are going through this! My thoughts and prayers are with you!

You mentioned having to make a lot of phone calls. If the phone calls are to inform loved ones of what is going on I would suggest starting a caringbridge website if you haven't already. I find it much easier to let everyone know about my little ones progress through the site rather than phone calls.
 
B

BabyBeauty

New member
Wow! I am sorry you are going through this! My thoughts and prayers are with you!

You mentioned having to make a lot of phone calls. If the phone calls are to inform loved ones of what is going on I would suggest starting a caringbridge website if you haven't already. I find it much easier to let everyone know about my little ones progress through the site rather than phone calls.
 
B

BabyBeauty

New member
Wow! I am sorry you are going through this! My thoughts and prayers are with you!
<br />
<br />You mentioned having to make a lot of phone calls. If the phone calls are to inform loved ones of what is going on I would suggest starting a caringbridge website if you haven't already. I find it much easier to let everyone know about my little ones progress through the site rather than phone calls.
 
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