Just a reminder that if they carrier test the dh they will only do partial genetic testing most likely because this the standard. Unless she's considering terminating, I would suggest no amnio and no testing of dh. Just monitoring the pregnancy as high risk (looking for blight bowel) and then delivery with high level neonatal in case of emergency bowel surgery need. Then once baby is born sweat testing and genetic testing for over 1K mutations. Too often I hear, "Dh was tested and was found to not be a carrier so our child will not have cf." This is untrue and if my dh and I had our blinders on like this we wouldn't know of our son's cf.
Mom's of CF'ers ...come in
- Thread starter jdprecious
- Start date
Just a reminder that if they carrier test the dh they will only do partial genetic testing most likely because this the standard. Unless she's considering terminating, I would suggest no amnio and no testing of dh. Just monitoring the pregnancy as high risk (looking for blight bowel) and then delivery with high level neonatal in case of emergency bowel surgery need. Then once baby is born sweat testing and genetic testing for over 1K mutations. Too often I hear, "Dh was tested and was found to not be a carrier so our child will not have cf." This is untrue and if my dh and I had our blinders on like this we wouldn't know of our son's cf.
Just a reminder that if they carrier test the dh they will only do partial genetic testing most likely because this the standard. Unless she's considering terminating, I would suggest no amnio and no testing of dh. Just monitoring the pregnancy as high risk (looking for blight bowel) and then delivery with high level neonatal in case of emergency bowel surgery need. Then once baby is born sweat testing and genetic testing for over 1K mutations. Too often I hear, "Dh was tested and was found to not be a carrier so our child will not have cf." This is untrue and if my dh and I had our blinders on like this we wouldn't know of our son's cf.
Just a reminder that if they carrier test the dh they will only do partial genetic testing most likely because this the standard. Unless she's considering terminating, I would suggest no amnio and no testing of dh. Just monitoring the pregnancy as high risk (looking for blight bowel) and then delivery with high level neonatal in case of emergency bowel surgery need. Then once baby is born sweat testing and genetic testing for over 1K mutations. Too often I hear, "Dh was tested and was found to not be a carrier so our child will not have cf." This is untrue and if my dh and I had our blinders on like this we wouldn't know of our son's cf.
Just a reminder that if they carrier test the dh they will only do partial genetic testing most likely because this the standard. Unless she's considering terminating, I would suggest no amnio and no testing of dh. Just monitoring the pregnancy as high risk (looking for blight bowel) and then delivery with high level neonatal in case of emergency bowel surgery need. Then once baby is born sweat testing and genetic testing for over 1K mutations. Too often I hear, "Dh was tested and was found to not be a carrier so our child will not have cf." This is untrue and if my dh and I had our blinders on like this we wouldn't know of our son's cf.
My daughter was born with CF. We had no family hx of it. My insurace at that time didn't pay for the testing, so we weren't tested prenatally b/c of the lack of history. We finally found out when KC was 6 weeks old. After alot of crying, failure to gain weight, loose, fatty stools....I WISH I would have known....we could've started enzymes right away instead of @ 6 weeks.
I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
KC is now 2 and doing very well!
Hope this helps and good luck!
****** Kim, mother of CFer KC {dog}
I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
KC is now 2 and doing very well!
Hope this helps and good luck!
****** Kim, mother of CFer KC {dog}
My daughter was born with CF. We had no family hx of it. My insurace at that time didn't pay for the testing, so we weren't tested prenatally b/c of the lack of history. We finally found out when KC was 6 weeks old. After alot of crying, failure to gain weight, loose, fatty stools....I WISH I would have known....we could've started enzymes right away instead of @ 6 weeks.
I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
KC is now 2 and doing very well!
Hope this helps and good luck!
****** Kim, mother of CFer KC {dog}
I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
KC is now 2 and doing very well!
Hope this helps and good luck!
****** Kim, mother of CFer KC {dog}
My daughter was born with CF. We had no family hx of it. My insurace at that time didn't pay for the testing, so we weren't tested prenatally b/c of the lack of history. We finally found out when KC was 6 weeks old. After alot of crying, failure to gain weight, loose, fatty stools....I WISH I would have known....we could've started enzymes right away instead of @ 6 weeks.
I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
KC is now 2 and doing very well!
Hope this helps and good luck!
****** Kim, mother of CFer KC {dog}
I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
KC is now 2 and doing very well!
Hope this helps and good luck!
****** Kim, mother of CFer KC {dog}
My daughter was born with CF. We had no family hx of it. My insurace at that time didn't pay for the testing, so we weren't tested prenatally b/c of the lack of history. We finally found out when KC was 6 weeks old. After alot of crying, failure to gain weight, loose, fatty stools....I WISH I would have known....we could've started enzymes right away instead of @ 6 weeks.
I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
KC is now 2 and doing very well!
Hope this helps and good luck!
****** Kim, mother of CFer KC {dog}
I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
KC is now 2 and doing very well!
Hope this helps and good luck!
****** Kim, mother of CFer KC {dog}
My daughter was born with CF. We had no family hx of it. My insurace at that time didn't pay for the testing, so we weren't tested prenatally b/c of the lack of history. We finally found out when KC was 6 weeks old. After alot of crying, failure to gain weight, loose, fatty stools....I WISH I would have known....we could've started enzymes right away instead of @ 6 weeks.
<br />I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
<br />My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
<br />I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
<br />Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
<br />KC is now 2 and doing very well!
<br />Hope this helps and good luck!
<br />
<br />****** Kim, mother of CFer KC {dog}
<br />
<br />
<br />
<br />I did not have any problems with my sodium. But, on the US, the doc found an echogenic bowel, which he said was ok, but later, I found out can be common in CF kids in utero. I also had polyhydraminos, and meconium fluid when my water broke.
<br />My husband and I were tested to see which one of us had what mutation. Insurance did not cover it, and it cost $1200. for each of us. You sister's husband could request a CF test thru his primary/family doctor....although depending on the insurance, he may have to pay out of pocket.
<br />I also think the genetic consult is a good idea. My husband's neice is pregnant. Her doc is doing CF tests on both her and her hubby. When our neice told her doc about our KC, the doc was very open and aware about the possibility that it could happen again.
<br />Tell your sis to not be afraid to get a 2nd opinion if she has the gut feeling/intuition to do so.
<br />KC is now 2 and doing very well!
<br />Hope this helps and good luck!
<br />
<br />****** Kim, mother of CFer KC {dog}
<br />
<br />
<br />
jdprecious
New member
Lou Lou, she is six almost seven months pregnant. Termination was never a thought or option here.
jdprecious
New member
Lou Lou, she is six almost seven months pregnant. Termination was never a thought or option here.
jdprecious
New member
Lou Lou, she is six almost seven months pregnant. Termination was never a thought or option here.
jdprecious
New member
Lou Lou, she is six almost seven months pregnant. Termination was never a thought or option here.
jdprecious
New member
Lou Lou, she is six almost seven months pregnant. Termination was never a thought or option here.
I agree-- our son was not diagnosed until 3 years, and only because his little sister almost died from MI after birth. Where were the doctors? Where was the diagnosis? Every symptom-- breathing problems documented from 2 weeks old! Bowel problems from 1 month old! Why do the doctors say this is "so rare" when it is the most common genetically inherited disease in all of America, England, Europe, Canada and Australia? Do the doctors know anything?
I agree-- our son was not diagnosed until 3 years, and only because his little sister almost died from MI after birth. Where were the doctors? Where was the diagnosis? Every symptom-- breathing problems documented from 2 weeks old! Bowel problems from 1 month old! Why do the doctors say this is "so rare" when it is the most common genetically inherited disease in all of America, England, Europe, Canada and Australia? Do the doctors know anything?
I agree-- our son was not diagnosed until 3 years, and only because his little sister almost died from MI after birth. Where were the doctors? Where was the diagnosis? Every symptom-- breathing problems documented from 2 weeks old! Bowel problems from 1 month old! Why do the doctors say this is "so rare" when it is the most common genetically inherited disease in all of America, England, Europe, Canada and Australia? Do the doctors know anything?
I agree-- our son was not diagnosed until 3 years, and only because his little sister almost died from MI after birth. Where were the doctors? Where was the diagnosis? Every symptom-- breathing problems documented from 2 weeks old! Bowel problems from 1 month old! Why do the doctors say this is "so rare" when it is the most common genetically inherited disease in all of America, England, Europe, Canada and Australia? Do the doctors know anything?
I agree-- our son was not diagnosed until 3 years, and only because his little sister almost died from MI after birth. Where were the doctors? Where was the diagnosis? Every symptom-- breathing problems documented from 2 weeks old! Bowel problems from 1 month old! Why do the doctors say this is "so rare" when it is the most common genetically inherited disease in all of America, England, Europe, Canada and Australia? Do the doctors know anything?