Am I overreacting?

L

LouLou

New member
I can't remember was your husband sequenced (over 1000 mutations)? If not I would highly suggest top of the line testing for your baby.

If he was tested for 89 mutations which is 95% of the mutations then you still have a 1 in 500 chance of cf in Alex. If no carrier testing was done at all in dh your chance is much higher.

Your pediatrician and cf doc aren't going to be the ones to deal with the guilt and sick child down the road. You are! Get him tested. Seriously...why not? Oh and skip the sweat test or if they insist on it then insist both sweat and genetic happen on the same day.

And next time around bring the Ambry box to delivery for cord blood collection.

You having cf definitely qualifies your children to have amplified testing. That is if your dh was not already amplified tested. If he tested negative to all mutations the chances of Alex having it are very rare.

Do you know your mutations? Do you have just two? I think it's much more common than we think for people to have 3+ mutations. This of course ups the odds of our children having cf. If you haven't been sequenced you should be.
 
L

LouLou

New member
I can't remember was your husband sequenced (over 1000 mutations)? If not I would highly suggest top of the line testing for your baby.

If he was tested for 89 mutations which is 95% of the mutations then you still have a 1 in 500 chance of cf in Alex. If no carrier testing was done at all in dh your chance is much higher.

Your pediatrician and cf doc aren't going to be the ones to deal with the guilt and sick child down the road. You are! Get him tested. Seriously...why not? Oh and skip the sweat test or if they insist on it then insist both sweat and genetic happen on the same day.

And next time around bring the Ambry box to delivery for cord blood collection.

You having cf definitely qualifies your children to have amplified testing. That is if your dh was not already amplified tested. If he tested negative to all mutations the chances of Alex having it are very rare.

Do you know your mutations? Do you have just two? I think it's much more common than we think for people to have 3+ mutations. This of course ups the odds of our children having cf. If you haven't been sequenced you should be.
 
L

LouLou

New member
I can't remember was your husband sequenced (over 1000 mutations)? If not I would highly suggest top of the line testing for your baby.

If he was tested for 89 mutations which is 95% of the mutations then you still have a 1 in 500 chance of cf in Alex. If no carrier testing was done at all in dh your chance is much higher.

Your pediatrician and cf doc aren't going to be the ones to deal with the guilt and sick child down the road. You are! Get him tested. Seriously...why not? Oh and skip the sweat test or if they insist on it then insist both sweat and genetic happen on the same day.

And next time around bring the Ambry box to delivery for cord blood collection.

You having cf definitely qualifies your children to have amplified testing. That is if your dh was not already amplified tested. If he tested negative to all mutations the chances of Alex having it are very rare.

Do you know your mutations? Do you have just two? I think it's much more common than we think for people to have 3+ mutations. This of course ups the odds of our children having cf. If you haven't been sequenced you should be.
 
L

LouLou

New member
I can't remember was your husband sequenced (over 1000 mutations)? If not I would highly suggest top of the line testing for your baby.

If he was tested for 89 mutations which is 95% of the mutations then you still have a 1 in 500 chance of cf in Alex. If no carrier testing was done at all in dh your chance is much higher.

Your pediatrician and cf doc aren't going to be the ones to deal with the guilt and sick child down the road. You are! Get him tested. Seriously...why not? Oh and skip the sweat test or if they insist on it then insist both sweat and genetic happen on the same day.

And next time around bring the Ambry box to delivery for cord blood collection.

You having cf definitely qualifies your children to have amplified testing. That is if your dh was not already amplified tested. If he tested negative to all mutations the chances of Alex having it are very rare.

Do you know your mutations? Do you have just two? I think it's much more common than we think for people to have 3+ mutations. This of course ups the odds of our children having cf. If you haven't been sequenced you should be.
 
L

LouLou

New member
I can't remember was your husband sequenced (over 1000 mutations)? If not I would highly suggest top of the line testing for your baby.
<br />
<br />If he was tested for 89 mutations which is 95% of the mutations then you still have a 1 in 500 chance of cf in Alex. If no carrier testing was done at all in dh your chance is much higher.
<br />
<br />Your pediatrician and cf doc aren't going to be the ones to deal with the guilt and sick child down the road. You are! Get him tested. Seriously...why not? Oh and skip the sweat test or if they insist on it then insist both sweat and genetic happen on the same day.
<br />
<br />And next time around bring the Ambry box to delivery for cord blood collection.
<br />
<br />You having cf definitely qualifies your children to have amplified testing. That is if your dh was not already amplified tested. If he tested negative to all mutations the chances of Alex having it are very rare.
<br />
<br />Do you know your mutations? Do you have just two? I think it's much more common than we think for people to have 3+ mutations. This of course ups the odds of our children having cf. If you haven't been sequenced you should be.
 
J

Jeana

New member
LouLou,
My husband was carrier tested but only for 85 or was it 90% of the mutations. That was my doctor's recommendation. Now I realize that I should have gone for the whole shebang! I have ddF508. Oh and btw, there will be no next time. My husband had a vasectomy while I was still pregnant. Two is enough for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jeana

New member
LouLou,
My husband was carrier tested but only for 85 or was it 90% of the mutations. That was my doctor's recommendation. Now I realize that I should have gone for the whole shebang! I have ddF508. Oh and btw, there will be no next time. My husband had a vasectomy while I was still pregnant. Two is enough for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jeana

New member
LouLou,
My husband was carrier tested but only for 85 or was it 90% of the mutations. That was my doctor's recommendation. Now I realize that I should have gone for the whole shebang! I have ddF508. Oh and btw, there will be no next time. My husband had a vasectomy while I was still pregnant. Two is enough for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jeana

New member
LouLou,
My husband was carrier tested but only for 85 or was it 90% of the mutations. That was my doctor's recommendation. Now I realize that I should have gone for the whole shebang! I have ddF508. Oh and btw, there will be no next time. My husband had a vasectomy while I was still pregnant. Two is enough for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jeana

New member
LouLou,
<br />My husband was carrier tested but only for 85 or was it 90% of the mutations. That was my doctor's recommendation. Now I realize that I should have gone for the whole shebang! I have ddF508. Oh and btw, there will be no next time. My husband had a vasectomy while I was still pregnant. Two is enough for me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

bdd9623

Guest
I don't know what to tell you do. However, I fought for 6 weeks (8 drs appts and 2 er visits) to get my daughter diagnosed with lyme's. I had to fight for my youngest son because he was experiencing low grade fevers for 2 months before I got him to infectious disease at children's hospital and onto sweat test (double 56). We are now waiting on genetic testing.

If your worried, get it done, if for no other reason then to ease your worries. No one knows your kids like you do.
 
B

bdd9623

Guest
I don't know what to tell you do. However, I fought for 6 weeks (8 drs appts and 2 er visits) to get my daughter diagnosed with lyme's. I had to fight for my youngest son because he was experiencing low grade fevers for 2 months before I got him to infectious disease at children's hospital and onto sweat test (double 56). We are now waiting on genetic testing.

If your worried, get it done, if for no other reason then to ease your worries. No one knows your kids like you do.
 
B

bdd9623

Guest
I don't know what to tell you do. However, I fought for 6 weeks (8 drs appts and 2 er visits) to get my daughter diagnosed with lyme's. I had to fight for my youngest son because he was experiencing low grade fevers for 2 months before I got him to infectious disease at children's hospital and onto sweat test (double 56). We are now waiting on genetic testing.

If your worried, get it done, if for no other reason then to ease your worries. No one knows your kids like you do.
 
B

bdd9623

Guest
I don't know what to tell you do. However, I fought for 6 weeks (8 drs appts and 2 er visits) to get my daughter diagnosed with lyme's. I had to fight for my youngest son because he was experiencing low grade fevers for 2 months before I got him to infectious disease at children's hospital and onto sweat test (double 56). We are now waiting on genetic testing.

If your worried, get it done, if for no other reason then to ease your worries. No one knows your kids like you do.
 
B

bdd9623

Guest
I don't know what to tell you do. However, I fought for 6 weeks (8 drs appts and 2 er visits) to get my daughter diagnosed with lyme's. I had to fight for my youngest son because he was experiencing low grade fevers for 2 months before I got him to infectious disease at children's hospital and onto sweat test (double 56). We are now waiting on genetic testing.
<br />
<br />If your worried, get it done, if for no other reason then to ease your worries. No one knows your kids like you do.
 
H

hopesiris

Guest
I think you should call Ambry and ask them to check with your insurance carrier to see if further testing would be covered. After we found out I had a second mutation we collected Amelia's cord blood and looked for that second mutation. Insurance covered it and she does not have CF.
 
H

hopesiris

Guest
I think you should call Ambry and ask them to check with your insurance carrier to see if further testing would be covered. After we found out I had a second mutation we collected Amelia's cord blood and looked for that second mutation. Insurance covered it and she does not have CF.
 
H

hopesiris

Guest
I think you should call Ambry and ask them to check with your insurance carrier to see if further testing would be covered. After we found out I had a second mutation we collected Amelia's cord blood and looked for that second mutation. Insurance covered it and she does not have CF.
 
H

hopesiris

Guest
I think you should call Ambry and ask them to check with your insurance carrier to see if further testing would be covered. After we found out I had a second mutation we collected Amelia's cord blood and looked for that second mutation. Insurance covered it and she does not have CF.
 
H

hopesiris

Guest
I think you should call Ambry and ask them to check with your insurance carrier to see if further testing would be covered. After we found out I had a second mutation we collected Amelia's cord blood and looked for that second mutation. Insurance covered it and she does not have CF.
 
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