Need support, what can I expect?

okok

New member
Momja,

I am so sorry, i am must have confused you with someone else whose child scored a 7 on the sweat test!! They were also pursuing genetic testing just to be sure but unfortunately the doctors didn't support them. I am so sorry i mixed was mixed up. I'll remember next time to read all posts even if i think i remeber what was going on in the thread just to be sure. For some reason i thought the sweat test was going to happen soon.


Anyway i'm glad everyone is giving you such great help. I hope it all works out soon!
 

okok

New member
Momja,

I am so sorry, i am must have confused you with someone else whose child scored a 7 on the sweat test!! They were also pursuing genetic testing just to be sure but unfortunately the doctors didn't support them. I am so sorry i mixed was mixed up. I'll remember next time to read all posts even if i think i remeber what was going on in the thread just to be sure. For some reason i thought the sweat test was going to happen soon.


Anyway i'm glad everyone is giving you such great help. I hope it all works out soon!
 

okok

New member
Momja,

I am so sorry, i am must have confused you with someone else whose child scored a 7 on the sweat test!! They were also pursuing genetic testing just to be sure but unfortunately the doctors didn't support them. I am so sorry i mixed was mixed up. I'll remember next time to read all posts even if i think i remeber what was going on in the thread just to be sure. For some reason i thought the sweat test was going to happen soon.


Anyway i'm glad everyone is giving you such great help. I hope it all works out soon!
 

okok

New member
Momja,

I am so sorry, i am must have confused you with someone else whose child scored a 7 on the sweat test!! They were also pursuing genetic testing just to be sure but unfortunately the doctors didn't support them. I am so sorry i mixed was mixed up. I'll remember next time to read all posts even if i think i remeber what was going on in the thread just to be sure. For some reason i thought the sweat test was going to happen soon.


Anyway i'm glad everyone is giving you such great help. I hope it all works out soon!
 

okok

New member
Momja,

I am so sorry, i am must have confused you with someone else whose child scored a 7 on the sweat test!! They were also pursuing genetic testing just to be sure but unfortunately the doctors didn't support them. I am so sorry i mixed was mixed up. I'll remember next time to read all posts even if i think i remeber what was going on in the thread just to be sure. For some reason i thought the sweat test was going to happen soon.


Anyway i'm glad everyone is giving you such great help. I hope it all works out soon!
 

okok

New member
Momja,

I am so sorry, i am must have confused you with someone else whose child scored a 7 on the sweat test!! They were also pursuing genetic testing just to be sure but unfortunately the doctors didn't support them. I am so sorry i mixed was mixed up. I'll remember next time to read all posts even if i think i remeber what was going on in the thread just to be sure. For some reason i thought the sweat test was going to happen soon.


Anyway i'm glad everyone is giving you such great help. I hope it all works out soon!
 

okok

New member
Hi again Momja,

There is nothing wrong with skipping the sweat test but if the doctor is already ordering genetics testing (which they absolutely should), i don't think it would hurt to attempt the sweat test again. Ambry amplified can take quite a while to get the results back and most likely, even if your child is positive on the ambry test, the doctors will want the information provided by the sweat test at some point. Personally i would also want this information if i was in your position. It is true the sweat test can be flawed but you are at a great facility so you know they are doing it properly which reduces the error. The other problem with sweat tests comes up when the results are borderline (above 30 for most young childern) but since you have already got them to order genetic testing i don't think this should be too much a problem for you.

The great thing about the sweat test is if it is clearly positive they can start treating your little one right away AND they will know your child most likely has CF even if the genetic tests can't find any mutations. If it is really negative, you can rest your mind somewhat while the genetics testing is still going through. Your doctors can start looking for other causes of your child's symptoms AND since genetic testing has already been ordered you don't have to worry about your doctors dismissing CF in the event of a false negative result.

I hope your doctor will order genetic testing from ambry (ambry amplified) although i wouldn't be surprised if she is reluctant. Push hard and i am sure she will have no choice.
Good luck!
 

okok

New member
Hi again Momja,

There is nothing wrong with skipping the sweat test but if the doctor is already ordering genetics testing (which they absolutely should), i don't think it would hurt to attempt the sweat test again. Ambry amplified can take quite a while to get the results back and most likely, even if your child is positive on the ambry test, the doctors will want the information provided by the sweat test at some point. Personally i would also want this information if i was in your position. It is true the sweat test can be flawed but you are at a great facility so you know they are doing it properly which reduces the error. The other problem with sweat tests comes up when the results are borderline (above 30 for most young childern) but since you have already got them to order genetic testing i don't think this should be too much a problem for you.

The great thing about the sweat test is if it is clearly positive they can start treating your little one right away AND they will know your child most likely has CF even if the genetic tests can't find any mutations. If it is really negative, you can rest your mind somewhat while the genetics testing is still going through. Your doctors can start looking for other causes of your child's symptoms AND since genetic testing has already been ordered you don't have to worry about your doctors dismissing CF in the event of a false negative result.

I hope your doctor will order genetic testing from ambry (ambry amplified) although i wouldn't be surprised if she is reluctant. Push hard and i am sure she will have no choice.
Good luck!
 

okok

New member
Hi again Momja,

There is nothing wrong with skipping the sweat test but if the doctor is already ordering genetics testing (which they absolutely should), i don't think it would hurt to attempt the sweat test again. Ambry amplified can take quite a while to get the results back and most likely, even if your child is positive on the ambry test, the doctors will want the information provided by the sweat test at some point. Personally i would also want this information if i was in your position. It is true the sweat test can be flawed but you are at a great facility so you know they are doing it properly which reduces the error. The other problem with sweat tests comes up when the results are borderline (above 30 for most young childern) but since you have already got them to order genetic testing i don't think this should be too much a problem for you.

The great thing about the sweat test is if it is clearly positive they can start treating your little one right away AND they will know your child most likely has CF even if the genetic tests can't find any mutations. If it is really negative, you can rest your mind somewhat while the genetics testing is still going through. Your doctors can start looking for other causes of your child's symptoms AND since genetic testing has already been ordered you don't have to worry about your doctors dismissing CF in the event of a false negative result.

I hope your doctor will order genetic testing from ambry (ambry amplified) although i wouldn't be surprised if she is reluctant. Push hard and i am sure she will have no choice.
Good luck!
 

okok

New member
Hi again Momja,

There is nothing wrong with skipping the sweat test but if the doctor is already ordering genetics testing (which they absolutely should), i don't think it would hurt to attempt the sweat test again. Ambry amplified can take quite a while to get the results back and most likely, even if your child is positive on the ambry test, the doctors will want the information provided by the sweat test at some point. Personally i would also want this information if i was in your position. It is true the sweat test can be flawed but you are at a great facility so you know they are doing it properly which reduces the error. The other problem with sweat tests comes up when the results are borderline (above 30 for most young childern) but since you have already got them to order genetic testing i don't think this should be too much a problem for you.

The great thing about the sweat test is if it is clearly positive they can start treating your little one right away AND they will know your child most likely has CF even if the genetic tests can't find any mutations. If it is really negative, you can rest your mind somewhat while the genetics testing is still going through. Your doctors can start looking for other causes of your child's symptoms AND since genetic testing has already been ordered you don't have to worry about your doctors dismissing CF in the event of a false negative result.

I hope your doctor will order genetic testing from ambry (ambry amplified) although i wouldn't be surprised if she is reluctant. Push hard and i am sure she will have no choice.
Good luck!
 

okok

New member
Hi again Momja,

There is nothing wrong with skipping the sweat test but if the doctor is already ordering genetics testing (which they absolutely should), i don't think it would hurt to attempt the sweat test again. Ambry amplified can take quite a while to get the results back and most likely, even if your child is positive on the ambry test, the doctors will want the information provided by the sweat test at some point. Personally i would also want this information if i was in your position. It is true the sweat test can be flawed but you are at a great facility so you know they are doing it properly which reduces the error. The other problem with sweat tests comes up when the results are borderline (above 30 for most young childern) but since you have already got them to order genetic testing i don't think this should be too much a problem for you.

The great thing about the sweat test is if it is clearly positive they can start treating your little one right away AND they will know your child most likely has CF even if the genetic tests can't find any mutations. If it is really negative, you can rest your mind somewhat while the genetics testing is still going through. Your doctors can start looking for other causes of your child's symptoms AND since genetic testing has already been ordered you don't have to worry about your doctors dismissing CF in the event of a false negative result.

I hope your doctor will order genetic testing from ambry (ambry amplified) although i wouldn't be surprised if she is reluctant. Push hard and i am sure she will have no choice.
Good luck!
 

okok

New member
Hi again Momja,

There is nothing wrong with skipping the sweat test but if the doctor is already ordering genetics testing (which they absolutely should), i don't think it would hurt to attempt the sweat test again. Ambry amplified can take quite a while to get the results back and most likely, even if your child is positive on the ambry test, the doctors will want the information provided by the sweat test at some point. Personally i would also want this information if i was in your position. It is true the sweat test can be flawed but you are at a great facility so you know they are doing it properly which reduces the error. The other problem with sweat tests comes up when the results are borderline (above 30 for most young childern) but since you have already got them to order genetic testing i don't think this should be too much a problem for you.

The great thing about the sweat test is if it is clearly positive they can start treating your little one right away AND they will know your child most likely has CF even if the genetic tests can't find any mutations. If it is really negative, you can rest your mind somewhat while the genetics testing is still going through. Your doctors can start looking for other causes of your child's symptoms AND since genetic testing has already been ordered you don't have to worry about your doctors dismissing CF in the event of a false negative result.

I hope your doctor will order genetic testing from ambry (ambry amplified) although i wouldn't be surprised if she is reluctant. Push hard and i am sure she will have no choice.
Good luck!
 

momja

New member
Everyone is so helpful and I'm taking it all in. I'll be sure to ask for the Full Gene Analysis. I'm not sure if I'll have a choice with Ambry or not. Does anyone know who Seattle Childrens testing is done by? I think lilismom is here in Seattle....

I realize that it will be another wait for the results to be completed but I'm getting closer.

Thanks again everyone.

I never remember changing so many stinky poopies a day with my last son. Man do they stink!
 

momja

New member
Everyone is so helpful and I'm taking it all in. I'll be sure to ask for the Full Gene Analysis. I'm not sure if I'll have a choice with Ambry or not. Does anyone know who Seattle Childrens testing is done by? I think lilismom is here in Seattle....

I realize that it will be another wait for the results to be completed but I'm getting closer.

Thanks again everyone.

I never remember changing so many stinky poopies a day with my last son. Man do they stink!
 

momja

New member
Everyone is so helpful and I'm taking it all in. I'll be sure to ask for the Full Gene Analysis. I'm not sure if I'll have a choice with Ambry or not. Does anyone know who Seattle Childrens testing is done by? I think lilismom is here in Seattle....

I realize that it will be another wait for the results to be completed but I'm getting closer.

Thanks again everyone.

I never remember changing so many stinky poopies a day with my last son. Man do they stink!
 

momja

New member
Everyone is so helpful and I'm taking it all in. I'll be sure to ask for the Full Gene Analysis. I'm not sure if I'll have a choice with Ambry or not. Does anyone know who Seattle Childrens testing is done by? I think lilismom is here in Seattle....

I realize that it will be another wait for the results to be completed but I'm getting closer.

Thanks again everyone.

I never remember changing so many stinky poopies a day with my last son. Man do they stink!
 

momja

New member
Everyone is so helpful and I'm taking it all in. I'll be sure to ask for the Full Gene Analysis. I'm not sure if I'll have a choice with Ambry or not. Does anyone know who Seattle Childrens testing is done by? I think lilismom is here in Seattle....

I realize that it will be another wait for the results to be completed but I'm getting closer.

Thanks again everyone.

I never remember changing so many stinky poopies a day with my last son. Man do they stink!
 

momja

New member
Everyone is so helpful and I'm taking it all in. I'll be sure to ask for the Full Gene Analysis. I'm not sure if I'll have a choice with Ambry or not. Does anyone know who Seattle Childrens testing is done by? I think lilismom is here in Seattle....

I realize that it will be another wait for the results to be completed but I'm getting closer.

Thanks again everyone.

I never remember changing so many stinky poopies a day with my last son. Man do they stink!
 

momja

New member
<b>okok</b>-I just realized there was a second page....Thanks so much for the info on the sweat test. After reading your post I will keep that appt. I was unsure what to do about it but it makes sense that eventually sweat results will be wanted.
Believe me I will push for the Ambry test. I think I'll download the pamphlet and take that with me....
 

momja

New member
<b>okok</b>-I just realized there was a second page....Thanks so much for the info on the sweat test. After reading your post I will keep that appt. I was unsure what to do about it but it makes sense that eventually sweat results will be wanted.
Believe me I will push for the Ambry test. I think I'll download the pamphlet and take that with me....
 
Top