Most thorough test?

[Alyssa]

Run away from the doctor as quickly as possible - he truly is ignorant.

Sweat tests are wonderful when you get a clearly positive number, but as others have said, many people including my two kids just don't test in the positive range.

Do you by chance know what her test result number was? What are her symptoms?

I didn't go to the website that sakasuka posted to see if the answer is there - but there has been another thread (I think) before about how much it costs, you could search the site here for that post. Also post on the Ask Ambry thread here - Steve always answers everyone on there. It seems to me that when my kids were tested it was around $1800.00. But you would probably be far better off getting her to a different doctor who would order the test and get it covered by insurance. If at all possible go straight for a CF certified clinic. Go to CFF.org and find a clinic near you.

 

[Alyssa]

Run away from the doctor as quickly as possible - he truly is ignorant.

Sweat tests are wonderful when you get a clearly positive number, but as others have said, many people including my two kids just don't test in the positive range.

Do you by chance know what her test result number was? What are her symptoms?

I didn't go to the website that sakasuka posted to see if the answer is there - but there has been another thread (I think) before about how much it costs, you could search the site here for that post. Also post on the Ask Ambry thread here - Steve always answers everyone on there. It seems to me that when my kids were tested it was around $1800.00. But you would probably be far better off getting her to a different doctor who would order the test and get it covered by insurance. If at all possible go straight for a CF certified clinic. Go to CFF.org and find a clinic near you.

 

[Alyssa]

Run away from the doctor as quickly as possible - he truly is ignorant.

Sweat tests are wonderful when you get a clearly positive number, but as others have said, many people including my two kids just don't test in the positive range.

Do you by chance know what her test result number was? What are her symptoms?

I didn't go to the website that sakasuka posted to see if the answer is there - but there has been another thread (I think) before about how much it costs, you could search the site here for that post. Also post on the Ask Ambry thread here - Steve always answers everyone on there. It seems to me that when my kids were tested it was around $1800.00. But you would probably be far better off getting her to a different doctor who would order the test and get it covered by insurance. If at all possible go straight for a CF certified clinic. Go to CFF.org and find a clinic near you.

 

[Alyssa]

Run away from the doctor as quickly as possible - he truly is ignorant.

Sweat tests are wonderful when you get a clearly positive number, but as others have said, many people including my two kids just don't test in the positive range.

Do you by chance know what her test result number was? What are her symptoms?

I didn't go to the website that sakasuka posted to see if the answer is there - but there has been another thread (I think) before about how much it costs, you could search the site here for that post. Also post on the Ask Ambry thread here - Steve always answers everyone on there. It seems to me that when my kids were tested it was around $1800.00. But you would probably be far better off getting her to a different doctor who would order the test and get it covered by insurance. If at all possible go straight for a CF certified clinic. Go to CFF.org and find a clinic near you.

 

[Alyssa]

Run away from the doctor as quickly as possible - he truly is ignorant.

Sweat tests are wonderful when you get a clearly positive number, but as others have said, many people including my two kids just don't test in the positive range.

Do you by chance know what her test result number was? What are her symptoms?

I didn't go to the website that sakasuka posted to see if the answer is there - but there has been another thread (I think) before about how much it costs, you could search the site here for that post. Also post on the Ask Ambry thread here - Steve always answers everyone on there. It seems to me that when my kids were tested it was around $1800.00. But you would probably be far better off getting her to a different doctor who would order the test and get it covered by insurance. If at all possible go straight for a CF certified clinic. Go to CFF.org and find a clinic near you.

 

[mlejcbs]

Chloe's sweat test was a 10 - She has had stools filled with mucus since shortly after birth. - She even went several times while we were still in the hospital. She had extremely low initial gain but is now gaining while consuming large quantities of formula. Any solids she eats seem to pass right through her body. I have no idea what to feed her that will not make it worse (sometimes it gets really bad) so for now she almost always just has Elecare. She also has an underlying congested sound - it is not always audible but definitely when she gets excited and usually in the morning. She has never had pulmonary troubles though. I think we can only go to another GI at this point - unless her ped can give us another referral. I think though that he is supposed to have some reason to give Tricare that he wants to send us to another place. Otherwise they will not approve it - I am going to talk to him about it, and see if he can order the Ambry test when we meet with him in 2 weeks - Sincethe GI doctor referred us to an Allergist and that appt is Wednesday, I am going to see what they think as well- maybe they can order the test. Either way, I hope they will give her a prescription for Elecare b/c the GI told me just to give her regular formula now so he won't be doing it and we are almost out but when I tried the milk based formula it was just too harsh for her. Please let this new doc not be a jerk!

 

[mlejcbs]

Chloe's sweat test was a 10 - She has had stools filled with mucus since shortly after birth. - She even went several times while we were still in the hospital. She had extremely low initial gain but is now gaining while consuming large quantities of formula. Any solids she eats seem to pass right through her body. I have no idea what to feed her that will not make it worse (sometimes it gets really bad) so for now she almost always just has Elecare. She also has an underlying congested sound - it is not always audible but definitely when she gets excited and usually in the morning. She has never had pulmonary troubles though. I think we can only go to another GI at this point - unless her ped can give us another referral. I think though that he is supposed to have some reason to give Tricare that he wants to send us to another place. Otherwise they will not approve it - I am going to talk to him about it, and see if he can order the Ambry test when we meet with him in 2 weeks - Sincethe GI doctor referred us to an Allergist and that appt is Wednesday, I am going to see what they think as well- maybe they can order the test. Either way, I hope they will give her a prescription for Elecare b/c the GI told me just to give her regular formula now so he won't be doing it and we are almost out but when I tried the milk based formula it was just too harsh for her. Please let this new doc not be a jerk!

 

[mlejcbs]

Chloe's sweat test was a 10 - She has had stools filled with mucus since shortly after birth. - She even went several times while we were still in the hospital. She had extremely low initial gain but is now gaining while consuming large quantities of formula. Any solids she eats seem to pass right through her body. I have no idea what to feed her that will not make it worse (sometimes it gets really bad) so for now she almost always just has Elecare. She also has an underlying congested sound - it is not always audible but definitely when she gets excited and usually in the morning. She has never had pulmonary troubles though. I think we can only go to another GI at this point - unless her ped can give us another referral. I think though that he is supposed to have some reason to give Tricare that he wants to send us to another place. Otherwise they will not approve it - I am going to talk to him about it, and see if he can order the Ambry test when we meet with him in 2 weeks - Sincethe GI doctor referred us to an Allergist and that appt is Wednesday, I am going to see what they think as well- maybe they can order the test. Either way, I hope they will give her a prescription for Elecare b/c the GI told me just to give her regular formula now so he won't be doing it and we are almost out but when I tried the milk based formula it was just too harsh for her. Please let this new doc not be a jerk!

 

[mlejcbs]

Chloe's sweat test was a 10 - She has had stools filled with mucus since shortly after birth. - She even went several times while we were still in the hospital. She had extremely low initial gain but is now gaining while consuming large quantities of formula. Any solids she eats seem to pass right through her body. I have no idea what to feed her that will not make it worse (sometimes it gets really bad) so for now she almost always just has Elecare. She also has an underlying congested sound - it is not always audible but definitely when she gets excited and usually in the morning. She has never had pulmonary troubles though. I think we can only go to another GI at this point - unless her ped can give us another referral. I think though that he is supposed to have some reason to give Tricare that he wants to send us to another place. Otherwise they will not approve it - I am going to talk to him about it, and see if he can order the Ambry test when we meet with him in 2 weeks - Sincethe GI doctor referred us to an Allergist and that appt is Wednesday, I am going to see what they think as well- maybe they can order the test. Either way, I hope they will give her a prescription for Elecare b/c the GI told me just to give her regular formula now so he won't be doing it and we are almost out but when I tried the milk based formula it was just too harsh for her. Please let this new doc not be a jerk!

 

[mlejcbs]

Chloe's sweat test was a 10 - She has had stools filled with mucus since shortly after birth. - She even went several times while we were still in the hospital. She had extremely low initial gain but is now gaining while consuming large quantities of formula. Any solids she eats seem to pass right through her body. I have no idea what to feed her that will not make it worse (sometimes it gets really bad) so for now she almost always just has Elecare. She also has an underlying congested sound - it is not always audible but definitely when she gets excited and usually in the morning. She has never had pulmonary troubles though. I think we can only go to another GI at this point - unless her ped can give us another referral. I think though that he is supposed to have some reason to give Tricare that he wants to send us to another place. Otherwise they will not approve it - I am going to talk to him about it, and see if he can order the Ambry test when we meet with him in 2 weeks - Sincethe GI doctor referred us to an Allergist and that appt is Wednesday, I am going to see what they think as well- maybe they can order the test. Either way, I hope they will give her a prescription for Elecare b/c the GI told me just to give her regular formula now so he won't be doing it and we are almost out but when I tried the milk based formula it was just too harsh for her. Please let this new doc not be a jerk!

 

[mlejcbs]

oh - and thank you for posting about the cost- the only threads I could find said to call and didn't say even a ball park. I will certainly do my best to have the doctor order it. DH would be a hard sell for that much. He is not as on board with finding an answer as I am.

 

[mlejcbs]

oh - and thank you for posting about the cost- the only threads I could find said to call and didn't say even a ball park. I will certainly do my best to have the doctor order it. DH would be a hard sell for that much. He is not as on board with finding an answer as I am.

 

[mlejcbs]

oh - and thank you for posting about the cost- the only threads I could find said to call and didn't say even a ball park. I will certainly do my best to have the doctor order it. DH would be a hard sell for that much. He is not as on board with finding an answer as I am.

 

[mlejcbs]

oh - and thank you for posting about the cost- the only threads I could find said to call and didn't say even a ball park. I will certainly do my best to have the doctor order it. DH would be a hard sell for that much. He is not as on board with finding an answer as I am.

 

[mlejcbs]

oh - and thank you for posting about the cost- the only threads I could find said to call and didn't say even a ball park. I will certainly do my best to have the doctor order it. DH would be a hard sell for that much. He is not as on board with finding an answer as I am.

 

[pjspiegle]

I don't know if they still make it or not, but if so, you might want to try pergesteron formula. It can be bought in the regular grocery store. Its the formula that they put Nathan on when he was a baby and having problems. It use to be recommended for a lot of babies with CF.

The allergist might be able to help. Our pulmonologist see allergy kids as well, and the allergist might very well be able to give you a referral to a pulmonary doc at a CF center since the two are pretty closely related to one another.

When we did Nathans sweat test our doc sent us to see a pulmonologist for the sweat test to be done. And then they sent the genetic testing off automatically, in our case to find out which gene types of CF he had, but were going to do it either way that the sweat test turned out because we were told that was the only absolute way that they could rule out CF. I remember that we were in such shock that we were hoping that the genetic test were going to come back and contradicte the sweat test, which of course did not happen. I am surprised that any doctor would refuse the testing unless there are just no signs or symptoms at all of CF.

I'll keep you in my prayers,

 

[pjspiegle]

I don't know if they still make it or not, but if so, you might want to try pergesteron formula. It can be bought in the regular grocery store. Its the formula that they put Nathan on when he was a baby and having problems. It use to be recommended for a lot of babies with CF.

The allergist might be able to help. Our pulmonologist see allergy kids as well, and the allergist might very well be able to give you a referral to a pulmonary doc at a CF center since the two are pretty closely related to one another.

When we did Nathans sweat test our doc sent us to see a pulmonologist for the sweat test to be done. And then they sent the genetic testing off automatically, in our case to find out which gene types of CF he had, but were going to do it either way that the sweat test turned out because we were told that was the only absolute way that they could rule out CF. I remember that we were in such shock that we were hoping that the genetic test were going to come back and contradicte the sweat test, which of course did not happen. I am surprised that any doctor would refuse the testing unless there are just no signs or symptoms at all of CF.

I'll keep you in my prayers,

 

[pjspiegle]

I don't know if they still make it or not, but if so, you might want to try pergesteron formula. It can be bought in the regular grocery store. Its the formula that they put Nathan on when he was a baby and having problems. It use to be recommended for a lot of babies with CF.

The allergist might be able to help. Our pulmonologist see allergy kids as well, and the allergist might very well be able to give you a referral to a pulmonary doc at a CF center since the two are pretty closely related to one another.

When we did Nathans sweat test our doc sent us to see a pulmonologist for the sweat test to be done. And then they sent the genetic testing off automatically, in our case to find out which gene types of CF he had, but were going to do it either way that the sweat test turned out because we were told that was the only absolute way that they could rule out CF. I remember that we were in such shock that we were hoping that the genetic test were going to come back and contradicte the sweat test, which of course did not happen. I am surprised that any doctor would refuse the testing unless there are just no signs or symptoms at all of CF.

I'll keep you in my prayers,

 

[pjspiegle]

I don't know if they still make it or not, but if so, you might want to try pergesteron formula. It can be bought in the regular grocery store. Its the formula that they put Nathan on when he was a baby and having problems. It use to be recommended for a lot of babies with CF.

The allergist might be able to help. Our pulmonologist see allergy kids as well, and the allergist might very well be able to give you a referral to a pulmonary doc at a CF center since the two are pretty closely related to one another.

When we did Nathans sweat test our doc sent us to see a pulmonologist for the sweat test to be done. And then they sent the genetic testing off automatically, in our case to find out which gene types of CF he had, but were going to do it either way that the sweat test turned out because we were told that was the only absolute way that they could rule out CF. I remember that we were in such shock that we were hoping that the genetic test were going to come back and contradicte the sweat test, which of course did not happen. I am surprised that any doctor would refuse the testing unless there are just no signs or symptoms at all of CF.

I'll keep you in my prayers,

 

[pjspiegle]

I don't know if they still make it or not, but if so, you might want to try pergesteron formula. It can be bought in the regular grocery store. Its the formula that they put Nathan on when he was a baby and having problems. It use to be recommended for a lot of babies with CF.

The allergist might be able to help. Our pulmonologist see allergy kids as well, and the allergist might very well be able to give you a referral to a pulmonary doc at a CF center since the two are pretty closely related to one another.

When we did Nathans sweat test our doc sent us to see a pulmonologist for the sweat test to be done. And then they sent the genetic testing off automatically, in our case to find out which gene types of CF he had, but were going to do it either way that the sweat test turned out because we were told that was the only absolute way that they could rule out CF. I remember that we were in such shock that we were hoping that the genetic test were going to come back and contradicte the sweat test, which of course did not happen. I am surprised that any doctor would refuse the testing unless there are just no signs or symptoms at all of CF.

I'll keep you in my prayers,