Question for Parents Diagnosed with CF after having a Child with CF

dyza

New member
Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.
They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.

Craig
 

dyza

New member
Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.
They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.

Craig
 

dyza

New member
Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.
They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.

Craig
 

dyza

New member
Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.
They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.

Craig
 

dyza

New member
Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.
<br />They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.
<br />
<br />Craig
 

Alyssa

New member
I think Craig has a great idea -- approach the CF team. When my daughter was first diagnosed we talked about my husbands symptoms and although we decided it was most likely not CF, the doctor did say that they have diagnosed two different parents after diagnosing their kids, so I would think that most CF docs would be open to the idea that you should be tested.

Heather also made an excellent point - if you did have another gene that was in say the class 4 or 5 it would account for the later onset of lung issues.

Best wishes -- I really feel you should move forward with asking for testing - you have everything to gain and based on your symptoms and carrier status it is a very reasonable request.
 

Alyssa

New member
I think Craig has a great idea -- approach the CF team. When my daughter was first diagnosed we talked about my husbands symptoms and although we decided it was most likely not CF, the doctor did say that they have diagnosed two different parents after diagnosing their kids, so I would think that most CF docs would be open to the idea that you should be tested.

Heather also made an excellent point - if you did have another gene that was in say the class 4 or 5 it would account for the later onset of lung issues.

Best wishes -- I really feel you should move forward with asking for testing - you have everything to gain and based on your symptoms and carrier status it is a very reasonable request.
 

Alyssa

New member
I think Craig has a great idea -- approach the CF team. When my daughter was first diagnosed we talked about my husbands symptoms and although we decided it was most likely not CF, the doctor did say that they have diagnosed two different parents after diagnosing their kids, so I would think that most CF docs would be open to the idea that you should be tested.

Heather also made an excellent point - if you did have another gene that was in say the class 4 or 5 it would account for the later onset of lung issues.

Best wishes -- I really feel you should move forward with asking for testing - you have everything to gain and based on your symptoms and carrier status it is a very reasonable request.
 

Alyssa

New member
I think Craig has a great idea -- approach the CF team. When my daughter was first diagnosed we talked about my husbands symptoms and although we decided it was most likely not CF, the doctor did say that they have diagnosed two different parents after diagnosing their kids, so I would think that most CF docs would be open to the idea that you should be tested.

Heather also made an excellent point - if you did have another gene that was in say the class 4 or 5 it would account for the later onset of lung issues.

Best wishes -- I really feel you should move forward with asking for testing - you have everything to gain and based on your symptoms and carrier status it is a very reasonable request.
 

Alyssa

New member
I think Craig has a great idea -- approach the CF team. When my daughter was first diagnosed we talked about my husbands symptoms and although we decided it was most likely not CF, the doctor did say that they have diagnosed two different parents after diagnosing their kids, so I would think that most CF docs would be open to the idea that you should be tested.
<br />
<br />Heather also made an excellent point - if you did have another gene that was in say the class 4 or 5 it would account for the later onset of lung issues.
<br />
<br />Best wishes -- I really feel you should move forward with asking for testing - you have everything to gain and based on your symptoms and carrier status it is a very reasonable request.
 

MargaritaChic

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

Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.

They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.



Craig</end quote></div>


Thank you for the suggestion. When we first went to the CF Clinic we met with a Genetics person who did discuss with us that we should consider getting tested to see which gene we each carry. She also told us we could get tested for just Emma's mutations, the most common mutations, or the Full genetic panel. But she said we would need to check with our insurance company to see if they would cover the tests.

I will look more into this option, if my Dr. is not receptive.

Thanks!
 

MargaritaChic

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

Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.

They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.



Craig</end quote></div>


Thank you for the suggestion. When we first went to the CF Clinic we met with a Genetics person who did discuss with us that we should consider getting tested to see which gene we each carry. She also told us we could get tested for just Emma's mutations, the most common mutations, or the Full genetic panel. But she said we would need to check with our insurance company to see if they would cover the tests.

I will look more into this option, if my Dr. is not receptive.

Thanks!
 

MargaritaChic

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

Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.

They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.



Craig</end quote></div>


Thank you for the suggestion. When we first went to the CF Clinic we met with a Genetics person who did discuss with us that we should consider getting tested to see which gene we each carry. She also told us we could get tested for just Emma's mutations, the most common mutations, or the Full genetic panel. But she said we would need to check with our insurance company to see if they would cover the tests.

I will look more into this option, if my Dr. is not receptive.

Thanks!
 

MargaritaChic

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

Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.

They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.



Craig</end quote>


Thank you for the suggestion. When we first went to the CF Clinic we met with a Genetics person who did discuss with us that we should consider getting tested to see which gene we each carry. She also told us we could get tested for just Emma's mutations, the most common mutations, or the Full genetic panel. But she said we would need to check with our insurance company to see if they would cover the tests.

I will look more into this option, if my Dr. is not receptive.

Thanks!
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dyza</b></i>
<br />
<br />Could you approach the subject with your daughters CF team. To me it would seem the obvious course of action to test for CF, considering your daughter has CF.
<br />
<br />They obviously do things different here in Scotland, when our boy was DX, our blood was taken and tested for mutations, that is how they found out that I had two mutations.
<br />
<br />
<br />
<br />Craig</end quote>
<br />
<br />
<br />Thank you for the suggestion. When we first went to the CF Clinic we met with a Genetics person who did discuss with us that we should consider getting tested to see which gene we each carry. She also told us we could get tested for just Emma's mutations, the most common mutations, or the Full genetic panel. But she said we would need to check with our insurance company to see if they would cover the tests.
<br />
<br />I will look more into this option, if my Dr. is not receptive.
<br />
<br />Thanks!
<br />
<br />
 

dyza

New member
Ah! The dreaded insurance system, I forget that we have social medicine here in the UK.
Our genetics person was very interested in our family history, we have a family number now, so anyone who is related to us can go and add their history to the family file ( and I'm sure that also includes screening)
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?month=3&year=2007
">http://blogs.cysticfibrosis.co...cfm?month=3&year=2007
</a>This from my blog about the genetics cousellor, oh incidently her name is Margarita

Craig
 

dyza

New member
Ah! The dreaded insurance system, I forget that we have social medicine here in the UK.
Our genetics person was very interested in our family history, we have a family number now, so anyone who is related to us can go and add their history to the family file ( and I'm sure that also includes screening)
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?month=3&year=2007
">http://blogs.cysticfibrosis.co...cfm?month=3&year=2007
</a>This from my blog about the genetics cousellor, oh incidently her name is Margarita

Craig
 

dyza

New member
Ah! The dreaded insurance system, I forget that we have social medicine here in the UK.
Our genetics person was very interested in our family history, we have a family number now, so anyone who is related to us can go and add their history to the family file ( and I'm sure that also includes screening)
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?month=3&year=2007
">http://blogs.cysticfibrosis.co...cfm?month=3&year=2007
</a>This from my blog about the genetics cousellor, oh incidently her name is Margarita

Craig
 

dyza

New member
Ah! The dreaded insurance system, I forget that we have social medicine here in the UK.
Our genetics person was very interested in our family history, we have a family number now, so anyone who is related to us can go and add their history to the family file ( and I'm sure that also includes screening)
<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?month=3&year=2007
">http://blogs.cysticfibrosis.co...cfm?month=3&year=2007
</a>This from my blog about the genetics cousellor, oh incidently her name is Margarita

Craig
 

dyza

New member
Ah! The dreaded insurance system, I forget that we have social medicine here in the UK.
<br />Our genetics person was very interested in our family history, we have a family number now, so anyone who is related to us can go and add their history to the family file ( and I'm sure that also includes screening)
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?month=3&year=2007
">http://blogs.cysticfibrosis.co...cfm?month=3&year=2007
</a><br />This from my blog about the genetics cousellor, oh incidently her name is Margarita
<br />
<br />Craig
 
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