Awhile back I wrote about my daughter having a sweat test result of 68 and having problems w/ her ped's office and how we were being sent to a CF center. Well yesterday we made our 2 1/2 hour trip to the cf center. I went there thinking they were going to do testing and i would leave knowing more about what was going on w/ my daughter. Well the only thing they really did was weigh her she did gain a pound, 1 pound in 6 months. They did a throat culture and the fellow there did manage to make me feel like an awful mother. Well the dr came in sat down and said we don't think she has CF they didn't catch it in the newborn screening and therefore we don't think she has it. They said they will do a sweat just to make sure, but they can't do it now. So on the 24th a day before her 1st b-day we have to drive all the way back up there for the sweat test, and if it comes back positive again drive up again when they can get us in. So i guess what my question is has anyone heard of a child having cf even though it wasn't caught in the newborn screening?
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newborn screening
- Thread starter avee725
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Awhile back I wrote about my daughter having a sweat test result of 68 and having problems w/ her ped's office and how we were being sent to a CF center. Well yesterday we made our 2 1/2 hour trip to the cf center. I went there thinking they were going to do testing and i would leave knowing more about what was going on w/ my daughter. Well the only thing they really did was weigh her she did gain a pound, 1 pound in 6 months. They did a throat culture and the fellow there did manage to make me feel like an awful mother. Well the dr came in sat down and said we don't think she has CF they didn't catch it in the newborn screening and therefore we don't think she has it. They said they will do a sweat just to make sure, but they can't do it now. So on the 24th a day before her 1st b-day we have to drive all the way back up there for the sweat test, and if it comes back positive again drive up again when they can get us in. So i guess what my question is has anyone heard of a child having cf even though it wasn't caught in the newborn screening?
Awhile back I wrote about my daughter having a sweat test result of 68 and having problems w/ her ped's office and how we were being sent to a CF center. Well yesterday we made our 2 1/2 hour trip to the cf center. I went there thinking they were going to do testing and i would leave knowing more about what was going on w/ my daughter. Well the only thing they really did was weigh her she did gain a pound, 1 pound in 6 months. They did a throat culture and the fellow there did manage to make me feel like an awful mother. Well the dr came in sat down and said we don't think she has CF they didn't catch it in the newborn screening and therefore we don't think she has it. They said they will do a sweat just to make sure, but they can't do it now. So on the 24th a day before her 1st b-day we have to drive all the way back up there for the sweat test, and if it comes back positive again drive up again when they can get us in. So i guess what my question is has anyone heard of a child having cf even though it wasn't caught in the newborn screening?
Awhile back I wrote about my daughter having a sweat test result of 68 and having problems w/ her ped's office and how we were being sent to a CF center. Well yesterday we made our 2 1/2 hour trip to the cf center. I went there thinking they were going to do testing and i would leave knowing more about what was going on w/ my daughter. Well the only thing they really did was weigh her she did gain a pound, 1 pound in 6 months. They did a throat culture and the fellow there did manage to make me feel like an awful mother. Well the dr came in sat down and said we don't think she has CF they didn't catch it in the newborn screening and therefore we don't think she has it. They said they will do a sweat just to make sure, but they can't do it now. So on the 24th a day before her 1st b-day we have to drive all the way back up there for the sweat test, and if it comes back positive again drive up again when they can get us in. So i guess what my question is has anyone heard of a child having cf even though it wasn't caught in the newborn screening?
Awhile back I wrote about my daughter having a sweat test result of 68 and having problems w/ her ped's office and how we were being sent to a CF center. Well yesterday we made our 2 1/2 hour trip to the cf center. I went there thinking they were going to do testing and i would leave knowing more about what was going on w/ my daughter. Well the only thing they really did was weigh her she did gain a pound, 1 pound in 6 months. They did a throat culture and the fellow there did manage to make me feel like an awful mother. Well the dr came in sat down and said we don't think she has CF they didn't catch it in the newborn screening and therefore we don't think she has it. They said they will do a sweat just to make sure, but they can't do it now. So on the 24th a day before her 1st b-day we have to drive all the way back up there for the sweat test, and if it comes back positive again drive up again when they can get us in. So i guess what my question is has anyone heard of a child having cf even though it wasn't caught in the newborn screening?
Awhile back I wrote about my daughter having a sweat test result of 68 and having problems w/ her ped's office and how we were being sent to a CF center. Well yesterday we made our 2 1/2 hour trip to the cf center. I went there thinking they were going to do testing and i would leave knowing more about what was going on w/ my daughter. Well the only thing they really did was weigh her she did gain a pound, 1 pound in 6 months. They did a throat culture and the fellow there did manage to make me feel like an awful mother. Well the dr came in sat down and said we don't think she has CF they didn't catch it in the newborn screening and therefore we don't think she has it. They said they will do a sweat just to make sure, but they can't do it now. So on the 24th a day before her 1st b-day we have to drive all the way back up there for the sweat test, and if it comes back positive again drive up again when they can get us in. So i guess what my question is has anyone heard of a child having cf even though it wasn't caught in the newborn screening?
How frustrating for you to have to go back for the sweat test. It would have made sense to make it part of that first clinic appt. I've heard so many conflicting theories about newborn screenings. On this site, I have seen so many sweat tests that are very low and still the genetic test confirms CF. It seems odd to me that a CF clinic would say they don't think she has it just because it didn't show up in newborn screening. They of all people should know that CF doesn't always follow a recognizable pattern.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
How frustrating for you to have to go back for the sweat test. It would have made sense to make it part of that first clinic appt. I've heard so many conflicting theories about newborn screenings. On this site, I have seen so many sweat tests that are very low and still the genetic test confirms CF. It seems odd to me that a CF clinic would say they don't think she has it just because it didn't show up in newborn screening. They of all people should know that CF doesn't always follow a recognizable pattern.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
How frustrating for you to have to go back for the sweat test. It would have made sense to make it part of that first clinic appt. I've heard so many conflicting theories about newborn screenings. On this site, I have seen so many sweat tests that are very low and still the genetic test confirms CF. It seems odd to me that a CF clinic would say they don't think she has it just because it didn't show up in newborn screening. They of all people should know that CF doesn't always follow a recognizable pattern.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
How frustrating for you to have to go back for the sweat test. It would have made sense to make it part of that first clinic appt. I've heard so many conflicting theories about newborn screenings. On this site, I have seen so many sweat tests that are very low and still the genetic test confirms CF. It seems odd to me that a CF clinic would say they don't think she has it just because it didn't show up in newborn screening. They of all people should know that CF doesn't always follow a recognizable pattern.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
How frustrating for you to have to go back for the sweat test. It would have made sense to make it part of that first clinic appt. I've heard so many conflicting theories about newborn screenings. On this site, I have seen so many sweat tests that are very low and still the genetic test confirms CF. It seems odd to me that a CF clinic would say they don't think she has it just because it didn't show up in newborn screening. They of all people should know that CF doesn't always follow a recognizable pattern.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
How frustrating for you to have to go back for the sweat test. It would have made sense to make it part of that first clinic appt. I've heard so many conflicting theories about newborn screenings. On this site, I have seen so many sweat tests that are very low and still the genetic test confirms CF. It seems odd to me that a CF clinic would say they don't think she has it just because it didn't show up in newborn screening. They of all people should know that CF doesn't always follow a recognizable pattern.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
I am assuming there are other health issues that caused you to be sent to the clinic. In my experience, my son was sweat tested twice (both pos) and then had the dna test through Ambry. That was the order of things so that insurance would cover all tests. To answer your question, yes it is possible. CF is a very tricky disease to dx in some cases. The most important thing you can do is educate yourself as much as possible about it. Be "pushy" with the docs. I know the traveling is hard, but if it eventually gets your baby the treatment she needs, it will be worth it. Hang in there and keep us posted.
M
Mommafirst
Guest
To answer your question, I don't know. But our doc told us that my daughter probably wouldn't have been caught on the newborn screen because the levels of IRT (??) that they test for are for some reason NOT catching babies with meconium plugs. I don't understand the science behind it, no one has tried to explain it to me, but I do think its possible (not highly likely, but possible) to not trip the newborn screen and still have CF.
I wanted to caution you a little that our doctors kept saying the same kinda thing "We don't think she has CF, but let's do this test..." etc. I put a lot of stock into it and was truly shocked when my daughters genetics revealed two CF mutations. I'm not saying this is going to happen to you, but I thought you should know that sometimes doctors may cushion their wording a bit.
I can understand the frustration of all the travel, they really should have thought this through better for you. Is your CF center associated with a Children's Hospital? I know at our CF center, if we had to travel far, we would be able to stay at the Ronald McDonald house. Children with CF and their families are pretty high on the priority listing for Ronald McDonald house. I don't know if testing is included, but its worth checking into.
Hope this helps.
I wanted to caution you a little that our doctors kept saying the same kinda thing "We don't think she has CF, but let's do this test..." etc. I put a lot of stock into it and was truly shocked when my daughters genetics revealed two CF mutations. I'm not saying this is going to happen to you, but I thought you should know that sometimes doctors may cushion their wording a bit.
I can understand the frustration of all the travel, they really should have thought this through better for you. Is your CF center associated with a Children's Hospital? I know at our CF center, if we had to travel far, we would be able to stay at the Ronald McDonald house. Children with CF and their families are pretty high on the priority listing for Ronald McDonald house. I don't know if testing is included, but its worth checking into.
Hope this helps.
M
Mommafirst
Guest
To answer your question, I don't know. But our doc told us that my daughter probably wouldn't have been caught on the newborn screen because the levels of IRT (??) that they test for are for some reason NOT catching babies with meconium plugs. I don't understand the science behind it, no one has tried to explain it to me, but I do think its possible (not highly likely, but possible) to not trip the newborn screen and still have CF.
I wanted to caution you a little that our doctors kept saying the same kinda thing "We don't think she has CF, but let's do this test..." etc. I put a lot of stock into it and was truly shocked when my daughters genetics revealed two CF mutations. I'm not saying this is going to happen to you, but I thought you should know that sometimes doctors may cushion their wording a bit.
I can understand the frustration of all the travel, they really should have thought this through better for you. Is your CF center associated with a Children's Hospital? I know at our CF center, if we had to travel far, we would be able to stay at the Ronald McDonald house. Children with CF and their families are pretty high on the priority listing for Ronald McDonald house. I don't know if testing is included, but its worth checking into.
Hope this helps.
I wanted to caution you a little that our doctors kept saying the same kinda thing "We don't think she has CF, but let's do this test..." etc. I put a lot of stock into it and was truly shocked when my daughters genetics revealed two CF mutations. I'm not saying this is going to happen to you, but I thought you should know that sometimes doctors may cushion their wording a bit.
I can understand the frustration of all the travel, they really should have thought this through better for you. Is your CF center associated with a Children's Hospital? I know at our CF center, if we had to travel far, we would be able to stay at the Ronald McDonald house. Children with CF and their families are pretty high on the priority listing for Ronald McDonald house. I don't know if testing is included, but its worth checking into.
Hope this helps.