Parents of CF child

[Beccamom]

I am wondering after a child is diagnosed with CF did any of the parents then find out that they too had CF. I think I have read at least one story on the forum like this. I have one child with G542X and one child with a 5T variant. After reading the carriers with symptoms posting recently I thought that could definately explain my symptoms. Then it hit me that a Cf mutation and the 5T variant together causes mild CF and if I passed both of these to my children rather than my husband having one and me having one of these to pass on then that could explain my symptomstoo.
So if you were tested who requested the test? Primary care doctor? ENT? Pulmonologist?
Who recommended the testing if you as the parent were tested?
Thanks for any advice. I am trying to get myself healthier so I have less illnesses and thus germs to pass on to my children.

 

[Beccamom]

I am wondering after a child is diagnosed with CF did any of the parents then find out that they too had CF. I think I have read at least one story on the forum like this. I have one child with G542X and one child with a 5T variant. After reading the carriers with symptoms posting recently I thought that could definately explain my symptoms. Then it hit me that a Cf mutation and the 5T variant together causes mild CF and if I passed both of these to my children rather than my husband having one and me having one of these to pass on then that could explain my symptomstoo.
So if you were tested who requested the test? Primary care doctor? ENT? Pulmonologist?
Who recommended the testing if you as the parent were tested?
Thanks for any advice. I am trying to get myself healthier so I have less illnesses and thus germs to pass on to my children.

 

[Ratatosk]

Neither of us have been tested. A friend of mine and her husband are in a carrier study thru the U of MN currently.

 

[Ratatosk]

Neither of us have been tested. A friend of mine and her husband are in a carrier study thru the U of MN currently.

 

[Havoc]

I tried to reply to your PM, but I'm not sure it worked. You cannot pass both of your copies to your child. One comes from dad and one from mom, always.

Could you have undiagnosed CF, possibly. If you would feel better being tested, then go for it, but you can't have given your daughter CF all by yourself.

 

[Havoc]

I tried to reply to your PM, but I'm not sure it worked. You cannot pass both of your copies to your child. One comes from dad and one from mom, always.

Could you have undiagnosed CF, possibly. If you would feel better being tested, then go for it, but you can't have given your daughter CF all by yourself.

 

[Mommafirst]

When my daughter was diagnosed they tested to make sure that her two mutations came from different alleles. BY knowing that I had one of her mutations, and my husband the other, they knew she had CF, vs. two mutations on one allele.

My point is that I was not tested for CF, just for the two mutations she has.

 

[Mommafirst]

When my daughter was diagnosed they tested to make sure that her two mutations came from different alleles. BY knowing that I had one of her mutations, and my husband the other, they knew she had CF, vs. two mutations on one allele.

My point is that I was not tested for CF, just for the two mutations she has.

 

[Beccamom]

Thank you all for posting. I understand that I alone cannot pass on CF, but since by genetics each of my children are carriers one child has a cf mutation and the other child the 5T variant I believe I could make them each a carrier without my husband contributing genetically. A person with CF could have two children each CF carriers each inheriting a different gene from the cf parent and no mutations or varients from the other parent. Please correct me if I am still not understanding the genetics since I am not a medical person.

 

[Beccamom]

Thank you all for posting. I understand that I alone cannot pass on CF, but since by genetics each of my children are carriers one child has a cf mutation and the other child the 5T variant I believe I could make them each a carrier without my husband contributing genetically. A person with CF could have two children each CF carriers each inheriting a different gene from the cf parent and no mutations or varients from the other parent. Please correct me if I am still not understanding the genetics since I am not a medical person.

 

[Gnome]

We didn't because it is obvious we don't have CF. But at the CF Clinic theytold methat once they diagnosed a baby with CF but they also realised the Mother had mild Cf. She was misdignosed with asthma for many years and never knew it was CF.

 

[Gnome]

We didn't because it is obvious we don't have CF. But at the CF Clinic theytold methat once they diagnosed a baby with CF but they also realised the Mother had mild Cf. She was misdignosed with asthma for many years and never knew it was CF.

 

[dyza]

In Scotland they diagnose from birth with the heel prick test, and subsequently they test the parents for the gene mutation being carried by each parent, I guess they are trying to formulate some kind of study into the genes and there 'movements' (for want of a better word).
This is how they found out that I had 2 mutations, the wife has the delta 508, and I have 2 copies of RH117(5T).
While I could be said to have CF genetically, I have no symtoms whatsoever, and while ,out of the doctors curiosity, I attended a CF clinic for 3 years, I have been released from them with no CF diagnosis.

You are correct if you have two mutations then each of your children will have either one or the other.
If you look at me with my two mutations, my daughter is a carrier with the RH117 and my son has CF with the RH117 and the delta 508

craig

 

[dyza]

In Scotland they diagnose from birth with the heel prick test, and subsequently they test the parents for the gene mutation being carried by each parent, I guess they are trying to formulate some kind of study into the genes and there 'movements' (for want of a better word).
This is how they found out that I had 2 mutations, the wife has the delta 508, and I have 2 copies of RH117(5T).
While I could be said to have CF genetically, I have no symtoms whatsoever, and while ,out of the doctors curiosity, I attended a CF clinic for 3 years, I have been released from them with no CF diagnosis.

You are correct if you have two mutations then each of your children will have either one or the other.
If you look at me with my two mutations, my daughter is a carrier with the RH117 and my son has CF with the RH117 and the delta 508

craig