Newborn Screening advice...

Buckeye

New member
Assuming you know you and your husband's mutations I would ask the Pediatrician in the hospital to order the genetic test.As for choosing a regular Pediatrician I know how you feel. My son was born 10 weeks early and at that point I hadn't even begun to think about Pediatricians, so all of the sudden I was freaking out about the enormity of the choice and I somehow thought this choice would be set in stone. The whole decision was taking on monumental proportions and I might as well have been getting my MBA with as much work as I put into the research. After all that, that pediatrician moved out of state within a few months and we had to choose a new Pediatrician again.So in reality, I would just pick one out of the phone book, call them up and explain that you would like to do a phone interview with them. If you like them, go with that one. <b>You can always change Pediatricians later</b>. Personally, I prefer a pediatrician that is with a larger practice so that on the days his regular Pediatrician is super busy we can still see one of the other Peds.
 

Buckeye

New member
Assuming you know you and your husband's mutations I would ask the Pediatrician in the hospital to order the genetic test.As for choosing a regular Pediatrician I know how you feel. My son was born 10 weeks early and at that point I hadn't even begun to think about Pediatricians, so all of the sudden I was freaking out about the enormity of the choice and I somehow thought this choice would be set in stone. The whole decision was taking on monumental proportions and I might as well have been getting my MBA with as much work as I put into the research. After all that, that pediatrician moved out of state within a few months and we had to choose a new Pediatrician again.So in reality, I would just pick one out of the phone book, call them up and explain that you would like to do a phone interview with them. If you like them, go with that one. <b>You can always change Pediatricians later</b>. Personally, I prefer a pediatrician that is with a larger practice so that on the days his regular Pediatrician is super busy we can still see one of the other Peds.
 

Buckeye

New member
Assuming you know you and your husband's mutations I would ask the Pediatrician in the hospital to order the genetic test.As for choosing a regular Pediatrician I know how you feel. My son was born 10 weeks early and at that point I hadn't even begun to think about Pediatricians, so all of the sudden I was freaking out about the enormity of the choice and I somehow thought this choice would be set in stone. The whole decision was taking on monumental proportions and I might as well have been getting my MBA with as much work as I put into the research. After all that, that pediatrician moved out of state within a few months and we had to choose a new Pediatrician again.So in reality, I would just pick one out of the phone book, call them up and explain that you would like to do a phone interview with them. If you like them, go with that one. <b>You can always change Pediatricians later</b>. Personally, I prefer a pediatrician that is with a larger practice so that on the days his regular Pediatrician is super busy we can still see one of the other Peds.
 

Buckeye

New member
Assuming you know you and your husband's mutations I would ask the Pediatrician in the hospital to order the genetic test.As for choosing a regular Pediatrician I know how you feel. My son was born 10 weeks early and at that point I hadn't even begun to think about Pediatricians, so all of the sudden I was freaking out about the enormity of the choice and I somehow thought this choice would be set in stone. The whole decision was taking on monumental proportions and I might as well have been getting my MBA with as much work as I put into the research. After all that, that pediatrician moved out of state within a few months and we had to choose a new Pediatrician again.So in reality, I would just pick one out of the phone book, call them up and explain that you would like to do a phone interview with them. If you like them, go with that one. <b>You can always change Pediatricians later</b>. Personally, I prefer a pediatrician that is with a larger practice so that on the days his regular Pediatrician is super busy we can still see one of the other Peds.
 

Buckeye

New member
Assuming you know you and your husband's mutations I would ask the Pediatrician in the hospital to order the genetic test.<p>As for choosing a regular Pediatrician I know how you feel. My son was born 10 weeks early and at that point I hadn't even begun to think about Pediatricians, so all of the sudden I was freaking out about the enormity of the choice and I somehow thought this choice would be set in stone. The whole decision was taking on monumental proportions and I might as well have been getting my MBA with as much work as I put into the research. After all that, that pediatrician moved out of state within a few months and we had to choose a new Pediatrician again.<p>So in reality, I would just pick one out of the phone book, call them up and explain that you would like to do a phone interview with them. If you like them, go with that one. <b>You can always change Pediatricians later</b>. Personally, I prefer a pediatrician that is with a larger practice so that on the days his regular Pediatrician is super busy we can still see one of the other Peds.
 

ehtansky21

New member
We had a huge problem getting Caleb tested at birth, even though he has a brother with CF.
From my understanding there are a lot of families out there that actually had the cord blood immediately sent to Ambry Genetics and had results within a couple weeks.
I ended up getting my midwife to collect the cord blood and then could not getting a physician in the hospital to order the ambry testing. My mom even went to our CF clinic and got the whole packet for the testing but no physcian was willing to sign off on it.
So.....find a pediatrician now....if you can find a facility who has the actually Ambry packet, get it too.....and get the pediatrician to sign off on it as soon as possible.
Once your beautiful baby is born, you want to know as soon as possible if he/she has CF. The longer you wait the more your anxiety will go up and the longer your baby may suffer unnecessarily if he/she has digestive issues and needs enzymes.
!!!!!!!!!!REALLY IMPORTANT!!!!!!
GET LIFE INSURANCE!!!!!!! If your precious child is diagnosed with CF he/she will never be able to get life insurance.
A company can set the all the paper work set up and the day your baby is born you can sign the papers and you are good to go. Caleb has a WHOLE TERM policy, that can grow with him, when he gets married, has kids etc without ever being "judged" for his health.
Blessings,
Missa
 

ehtansky21

New member
We had a huge problem getting Caleb tested at birth, even though he has a brother with CF.
From my understanding there are a lot of families out there that actually had the cord blood immediately sent to Ambry Genetics and had results within a couple weeks.
I ended up getting my midwife to collect the cord blood and then could not getting a physician in the hospital to order the ambry testing. My mom even went to our CF clinic and got the whole packet for the testing but no physcian was willing to sign off on it.
So.....find a pediatrician now....if you can find a facility who has the actually Ambry packet, get it too.....and get the pediatrician to sign off on it as soon as possible.
Once your beautiful baby is born, you want to know as soon as possible if he/she has CF. The longer you wait the more your anxiety will go up and the longer your baby may suffer unnecessarily if he/she has digestive issues and needs enzymes.
!!!!!!!!!!REALLY IMPORTANT!!!!!!
GET LIFE INSURANCE!!!!!!! If your precious child is diagnosed with CF he/she will never be able to get life insurance.
A company can set the all the paper work set up and the day your baby is born you can sign the papers and you are good to go. Caleb has a WHOLE TERM policy, that can grow with him, when he gets married, has kids etc without ever being "judged" for his health.
Blessings,
Missa
 

ehtansky21

New member
We had a huge problem getting Caleb tested at birth, even though he has a brother with CF.
From my understanding there are a lot of families out there that actually had the cord blood immediately sent to Ambry Genetics and had results within a couple weeks.
I ended up getting my midwife to collect the cord blood and then could not getting a physician in the hospital to order the ambry testing. My mom even went to our CF clinic and got the whole packet for the testing but no physcian was willing to sign off on it.
So.....find a pediatrician now....if you can find a facility who has the actually Ambry packet, get it too.....and get the pediatrician to sign off on it as soon as possible.
Once your beautiful baby is born, you want to know as soon as possible if he/she has CF. The longer you wait the more your anxiety will go up and the longer your baby may suffer unnecessarily if he/she has digestive issues and needs enzymes.
!!!!!!!!!!REALLY IMPORTANT!!!!!!
GET LIFE INSURANCE!!!!!!! If your precious child is diagnosed with CF he/she will never be able to get life insurance.
A company can set the all the paper work set up and the day your baby is born you can sign the papers and you are good to go. Caleb has a WHOLE TERM policy, that can grow with him, when he gets married, has kids etc without ever being "judged" for his health.
Blessings,
Missa
 

ehtansky21

New member
We had a huge problem getting Caleb tested at birth, even though he has a brother with CF.
From my understanding there are a lot of families out there that actually had the cord blood immediately sent to Ambry Genetics and had results within a couple weeks.
I ended up getting my midwife to collect the cord blood and then could not getting a physician in the hospital to order the ambry testing. My mom even went to our CF clinic and got the whole packet for the testing but no physcian was willing to sign off on it.
So.....find a pediatrician now....if you can find a facility who has the actually Ambry packet, get it too.....and get the pediatrician to sign off on it as soon as possible.
Once your beautiful baby is born, you want to know as soon as possible if he/she has CF. The longer you wait the more your anxiety will go up and the longer your baby may suffer unnecessarily if he/she has digestive issues and needs enzymes.
!!!!!!!!!!REALLY IMPORTANT!!!!!!
GET LIFE INSURANCE!!!!!!! If your precious child is diagnosed with CF he/she will never be able to get life insurance.
A company can set the all the paper work set up and the day your baby is born you can sign the papers and you are good to go. Caleb has a WHOLE TERM policy, that can grow with him, when he gets married, has kids etc without ever being "judged" for his health.
Blessings,
Missa
 

ehtansky21

New member
We had a huge problem getting Caleb tested at birth, even though he has a brother with CF.
<br />From my understanding there are a lot of families out there that actually had the cord blood immediately sent to Ambry Genetics and had results within a couple weeks.
<br />I ended up getting my midwife to collect the cord blood and then could not getting a physician in the hospital to order the ambry testing. My mom even went to our CF clinic and got the whole packet for the testing but no physcian was willing to sign off on it.
<br />So.....find a pediatrician now....if you can find a facility who has the actually Ambry packet, get it too.....and get the pediatrician to sign off on it as soon as possible.
<br />Once your beautiful baby is born, you want to know as soon as possible if he/she has CF. The longer you wait the more your anxiety will go up and the longer your baby may suffer unnecessarily if he/she has digestive issues and needs enzymes.
<br />!!!!!!!!!!REALLY IMPORTANT!!!!!!
<br />GET LIFE INSURANCE!!!!!!! If your precious child is diagnosed with CF he/she will never be able to get life insurance.
<br />A company can set the all the paper work set up and the day your baby is born you can sign the papers and you are good to go. Caleb has a WHOLE TERM policy, that can grow with him, when he gets married, has kids etc without ever being "judged" for his health.
<br />Blessings,
<br />Missa
 
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bugsyroscoe

Guest
Of course one of the best ways to find a pediatrician is through word of mouth but....If you don't have connections with other mom's close by, you might check to see if there is a local online forum. Most people are very vocal about their opinions of docs, etc! You could then take some of the names and start calling. I found it to be extremely helpful. Best of luck.
 
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bugsyroscoe

Guest
Of course one of the best ways to find a pediatrician is through word of mouth but....If you don't have connections with other mom's close by, you might check to see if there is a local online forum. Most people are very vocal about their opinions of docs, etc! You could then take some of the names and start calling. I found it to be extremely helpful. Best of luck.
 
B

bugsyroscoe

Guest
Of course one of the best ways to find a pediatrician is through word of mouth but....If you don't have connections with other mom's close by, you might check to see if there is a local online forum. Most people are very vocal about their opinions of docs, etc! You could then take some of the names and start calling. I found it to be extremely helpful. Best of luck.
 
B

bugsyroscoe

Guest
Of course one of the best ways to find a pediatrician is through word of mouth but....If you don't have connections with other mom's close by, you might check to see if there is a local online forum. Most people are very vocal about their opinions of docs, etc! You could then take some of the names and start calling. I found it to be extremely helpful. Best of luck.
 
B

bugsyroscoe

Guest
Of course one of the best ways to find a pediatrician is through word of mouth but....If you don't have connections with other mom's close by, you might check to see if there is a local online forum. Most people are very vocal about their opinions of docs, etc! You could then take some of the names and start calling. I found it to be extremely helpful. Best of luck.
 

alsfields

New member
Thanks for all your responses and advice! We live in Texas and as far as I know, CF is not something they automatically test for, unfortunately. We got a list of the doctors covered by our insurance and narrowed it down to the ones that work at the hospital we'll be at and will pick one and call. I don't know why I didn't even think that of course we can switch later on. I guess I'm just so overwhelmed with it all...

And yes, we do know the mutations. We both carry Df508 (I think. Its been so long since they told us, but I do know we carry the same one.) I've read that's the most common, is that correct?

Thanks again!
 

alsfields

New member
Thanks for all your responses and advice! We live in Texas and as far as I know, CF is not something they automatically test for, unfortunately. We got a list of the doctors covered by our insurance and narrowed it down to the ones that work at the hospital we'll be at and will pick one and call. I don't know why I didn't even think that of course we can switch later on. I guess I'm just so overwhelmed with it all...

And yes, we do know the mutations. We both carry Df508 (I think. Its been so long since they told us, but I do know we carry the same one.) I've read that's the most common, is that correct?

Thanks again!
 

alsfields

New member
Thanks for all your responses and advice! We live in Texas and as far as I know, CF is not something they automatically test for, unfortunately. We got a list of the doctors covered by our insurance and narrowed it down to the ones that work at the hospital we'll be at and will pick one and call. I don't know why I didn't even think that of course we can switch later on. I guess I'm just so overwhelmed with it all...

And yes, we do know the mutations. We both carry Df508 (I think. Its been so long since they told us, but I do know we carry the same one.) I've read that's the most common, is that correct?

Thanks again!
 

alsfields

New member
Thanks for all your responses and advice! We live in Texas and as far as I know, CF is not something they automatically test for, unfortunately. We got a list of the doctors covered by our insurance and narrowed it down to the ones that work at the hospital we'll be at and will pick one and call. I don't know why I didn't even think that of course we can switch later on. I guess I'm just so overwhelmed with it all...

And yes, we do know the mutations. We both carry Df508 (I think. Its been so long since they told us, but I do know we carry the same one.) I've read that's the most common, is that correct?

Thanks again!
 

alsfields

New member
Thanks for all your responses and advice! We live in Texas and as far as I know, CF is not something they automatically test for, unfortunately. We got a list of the doctors covered by our insurance and narrowed it down to the ones that work at the hospital we'll be at and will pick one and call. I don't know why I didn't even think that of course we can switch later on. I guess I'm just so overwhelmed with it all...
<br />
<br />And yes, we do know the mutations. We both carry Df508 (I think. Its been so long since they told us, but I do know we carry the same one.) I've read that's the most common, is that correct?
<br />
<br />Thanks again!
 
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