Going CRAZY!!!!! NEED HELP!

Z

Zakarymom

New member
I have a 13 month old son named Zakary. He went in for his sweat test on Wed of this week. Today we hear back from the doctor that his test will need to be repeated due to the fact there was not enough sweat. He is supposed to have 79 something and only had like 49. I am not sure excactly what they mean but I know he didn't sweat enough. My question is does this having any meaning. I did request rather then doing another sweat test that we do genetic testing. Although I am not excactly sure what that intells. What I have gathered is a blood test or swab test, is this right? It just seems like this is ongoing and my husband and are just going crazy not knowing the "for sure" anwser. I knwo you all know excactly how that is. I just wanted some advice. I am just rather nervous about the results we heard today because she clearly stated that it was bad news and they also have talked to me about treatment therapy. I just WANT TO KNOW CF or no CF! Any help good or bad thoughts would be greatly appriciated!
Thanks Everyone!
 
Z

Zakarymom

New member
I have a 13 month old son named Zakary. He went in for his sweat test on Wed of this week. Today we hear back from the doctor that his test will need to be repeated due to the fact there was not enough sweat. He is supposed to have 79 something and only had like 49. I am not sure excactly what they mean but I know he didn't sweat enough. My question is does this having any meaning. I did request rather then doing another sweat test that we do genetic testing. Although I am not excactly sure what that intells. What I have gathered is a blood test or swab test, is this right? It just seems like this is ongoing and my husband and are just going crazy not knowing the "for sure" anwser. I knwo you all know excactly how that is. I just wanted some advice. I am just rather nervous about the results we heard today because she clearly stated that it was bad news and they also have talked to me about treatment therapy. I just WANT TO KNOW CF or no CF! Any help good or bad thoughts would be greatly appriciated!
Thanks Everyone!
 
Z

Zakarymom

New member
I have a 13 month old son named Zakary. He went in for his sweat test on Wed of this week. Today we hear back from the doctor that his test will need to be repeated due to the fact there was not enough sweat. He is supposed to have 79 something and only had like 49. I am not sure excactly what they mean but I know he didn't sweat enough. My question is does this having any meaning. I did request rather then doing another sweat test that we do genetic testing. Although I am not excactly sure what that intells. What I have gathered is a blood test or swab test, is this right? It just seems like this is ongoing and my husband and are just going crazy not knowing the "for sure" anwser. I knwo you all know excactly how that is. I just wanted some advice. I am just rather nervous about the results we heard today because she clearly stated that it was bad news and they also have talked to me about treatment therapy. I just WANT TO KNOW CF or no CF! Any help good or bad thoughts would be greatly appriciated!
Thanks Everyone!
 
J

julie

New member
49 is in the lower half of the borderline section, although depending on who you talk to you might hear that is a negative. If they gave you a number, then their excuse that they didn't get enough sweat is a lie. Although they might have just told you taht to keep you from panicking, they MUST be honest with you as a patient (can you tell this is a pet peeve of mine????). The reapeat sweat test is probably for a confirmation of the 49, or to see if the second test is higher or lower or the same, But if they got a reading, I guarantee you they got enough sweat.
 
J

julie

New member
49 is in the lower half of the borderline section, although depending on who you talk to you might hear that is a negative. If they gave you a number, then their excuse that they didn't get enough sweat is a lie. Although they might have just told you taht to keep you from panicking, they MUST be honest with you as a patient (can you tell this is a pet peeve of mine????). The reapeat sweat test is probably for a confirmation of the 49, or to see if the second test is higher or lower or the same, But if they got a reading, I guarantee you they got enough sweat.
 
J

julie

New member
49 is in the lower half of the borderline section, although depending on who you talk to you might hear that is a negative. If they gave you a number, then their excuse that they didn't get enough sweat is a lie. Although they might have just told you taht to keep you from panicking, they MUST be honest with you as a patient (can you tell this is a pet peeve of mine????). The reapeat sweat test is probably for a confirmation of the 49, or to see if the second test is higher or lower or the same, But if they got a reading, I guarantee you they got enough sweat.
 
M

Mommafirst

Guest
I agree with everything Julie said. A 49 is a borderline result and would require a second test. AFter 2 borderlines, they'll want to do the genetic work. I'm sorry you are caught in limbo right now, I totally totally know how it feels and it stinks!!! I hope you hear no cf soon, or at least get some answers.
 
M

Mommafirst

Guest
I agree with everything Julie said. A 49 is a borderline result and would require a second test. AFter 2 borderlines, they'll want to do the genetic work. I'm sorry you are caught in limbo right now, I totally totally know how it feels and it stinks!!! I hope you hear no cf soon, or at least get some answers.
 
M

Mommafirst

Guest
I agree with everything Julie said. A 49 is a borderline result and would require a second test. AFter 2 borderlines, they'll want to do the genetic work. I'm sorry you are caught in limbo right now, I totally totally know how it feels and it stinks!!! I hope you hear no cf soon, or at least get some answers.
 
P

PACmommy

New member
After our daughter was diagnosed with (152 - definately not borderline), we took our 2 sons for a sweat test to rule them out. Our younger one did fine, but our older boy, the nurse thought there might be a problem with an insufficient amount of sweat. She repeated the test on his arm rather than his back ( she said that alot of times children react better there) and we got lots of sweat. I figure if you're already doing the test, and there is a concern as to whether there is enough sweat, ask them to repeat it on the arm.
 
P

PACmommy

New member
After our daughter was diagnosed with (152 - definately not borderline), we took our 2 sons for a sweat test to rule them out. Our younger one did fine, but our older boy, the nurse thought there might be a problem with an insufficient amount of sweat. She repeated the test on his arm rather than his back ( she said that alot of times children react better there) and we got lots of sweat. I figure if you're already doing the test, and there is a concern as to whether there is enough sweat, ask them to repeat it on the arm.
 
P

PACmommy

New member
After our daughter was diagnosed with (152 - definately not borderline), we took our 2 sons for a sweat test to rule them out. Our younger one did fine, but our older boy, the nurse thought there might be a problem with an insufficient amount of sweat. She repeated the test on his arm rather than his back ( she said that alot of times children react better there) and we got lots of sweat. I figure if you're already doing the test, and there is a concern as to whether there is enough sweat, ask them to repeat it on the arm.
 
C

concernedmom

New member
Actually, I have to respectfully disagree with Julie. When our middle DS was sweat tested, they barely got enough sweat. I'm not sure what measurement they use to discuss the quantity of sweat - I think maybe miligrams??? Anyway, DS had 78 mg or whatever of sweat. They needed at least 75 at our lab. <b>That number was very different from the actual result </b>that DS got (a 10 which is negative). There was discussion over whether we should repeat the sweat test since they <i>barely collected enough sweat</i>. I don't think your doctor is misleading you at all. Your DS just did not sweat enough. My suggestion is to repeat the sweat test. Dress him very warmly - ie t-shirt, turtleneck, sweater, thick pants, heavy jacket, sock hat. Then, if he is walking (even with help), walk him all over the hospital, let him climb stairs, jump, run, crawl (whatever he can physically do) to make him sweat. With sweat tests, you get the results much quicker (frequently the same day). Vs. genetic testing which takes at least 2 weeks. Plus, <b><i>very few doctors will order an extended panel until they've first completed a cheaper, less comprehensive panel</i></b>. The cheaper, less comprehensive panels only test for a small fraction of mutations. <b><i>A negative on these panels doesn't mean anything except that your child does not have the mutations you tested for. </i></b> Just my opinion, but I'd try the sweat test again. If it's positive, borderline, or high negative (30 or above), or they don't collect enough sweat again, then request the genetic panel.
Good luck. I know waiting is so hard!
 
C

concernedmom

New member
Actually, I have to respectfully disagree with Julie. When our middle DS was sweat tested, they barely got enough sweat. I'm not sure what measurement they use to discuss the quantity of sweat - I think maybe miligrams??? Anyway, DS had 78 mg or whatever of sweat. They needed at least 75 at our lab. <b>That number was very different from the actual result </b>that DS got (a 10 which is negative). There was discussion over whether we should repeat the sweat test since they <i>barely collected enough sweat</i>. I don't think your doctor is misleading you at all. Your DS just did not sweat enough. My suggestion is to repeat the sweat test. Dress him very warmly - ie t-shirt, turtleneck, sweater, thick pants, heavy jacket, sock hat. Then, if he is walking (even with help), walk him all over the hospital, let him climb stairs, jump, run, crawl (whatever he can physically do) to make him sweat. With sweat tests, you get the results much quicker (frequently the same day). Vs. genetic testing which takes at least 2 weeks. Plus, <b><i>very few doctors will order an extended panel until they've first completed a cheaper, less comprehensive panel</i></b>. The cheaper, less comprehensive panels only test for a small fraction of mutations. <b><i>A negative on these panels doesn't mean anything except that your child does not have the mutations you tested for. </i></b> Just my opinion, but I'd try the sweat test again. If it's positive, borderline, or high negative (30 or above), or they don't collect enough sweat again, then request the genetic panel.
Good luck. I know waiting is so hard!
 
C

concernedmom

New member
Actually, I have to respectfully disagree with Julie. When our middle DS was sweat tested, they barely got enough sweat. I'm not sure what measurement they use to discuss the quantity of sweat - I think maybe miligrams??? Anyway, DS had 78 mg or whatever of sweat. They needed at least 75 at our lab. <b>That number was very different from the actual result </b>that DS got (a 10 which is negative). There was discussion over whether we should repeat the sweat test since they <i>barely collected enough sweat</i>. I don't think your doctor is misleading you at all. Your DS just did not sweat enough. My suggestion is to repeat the sweat test. Dress him very warmly - ie t-shirt, turtleneck, sweater, thick pants, heavy jacket, sock hat. Then, if he is walking (even with help), walk him all over the hospital, let him climb stairs, jump, run, crawl (whatever he can physically do) to make him sweat. With sweat tests, you get the results much quicker (frequently the same day). Vs. genetic testing which takes at least 2 weeks. Plus, <b><i>very few doctors will order an extended panel until they've first completed a cheaper, less comprehensive panel</i></b>. The cheaper, less comprehensive panels only test for a small fraction of mutations. <b><i>A negative on these panels doesn't mean anything except that your child does not have the mutations you tested for. </i></b> Just my opinion, but I'd try the sweat test again. If it's positive, borderline, or high negative (30 or above), or they don't collect enough sweat again, then request the genetic panel.
Good luck. I know waiting is so hard!
 
J

JennifersHope

New member
I agree with the last poster.. They need to have a certain amount of MeQ in weight to get a proper reading..I think those numbers were measuring the amount of sweat, not the amount of Chloride in them. I don't believe for one minute that they would lie to you, that is unethical, plus they have no reason to.

For me, when I was sweat tested, when they took the gauze off of me, the lady actually measured it on a scale to see if it was enough. She zeroed out the scale, weighed the gauze, then after I was finished with my test, she measured it with the sweat on it.. (highly specialized scale) That is when she said okay you have X amount of sweat that is enough...

Don't read into it. It is good that they want to make sure they have accurate information.

Jennifer
 
J

JennifersHope

New member
I agree with the last poster.. They need to have a certain amount of MeQ in weight to get a proper reading..I think those numbers were measuring the amount of sweat, not the amount of Chloride in them. I don't believe for one minute that they would lie to you, that is unethical, plus they have no reason to.

For me, when I was sweat tested, when they took the gauze off of me, the lady actually measured it on a scale to see if it was enough. She zeroed out the scale, weighed the gauze, then after I was finished with my test, she measured it with the sweat on it.. (highly specialized scale) That is when she said okay you have X amount of sweat that is enough...

Don't read into it. It is good that they want to make sure they have accurate information.

Jennifer
 
J

JennifersHope

New member
I agree with the last poster.. They need to have a certain amount of MeQ in weight to get a proper reading..I think those numbers were measuring the amount of sweat, not the amount of Chloride in them. I don't believe for one minute that they would lie to you, that is unethical, plus they have no reason to.

For me, when I was sweat tested, when they took the gauze off of me, the lady actually measured it on a scale to see if it was enough. She zeroed out the scale, weighed the gauze, then after I was finished with my test, she measured it with the sweat on it.. (highly specialized scale) That is when she said okay you have X amount of sweat that is enough...

Don't read into it. It is good that they want to make sure they have accurate information.

Jennifer
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>concernedmom</b></i>
<b><i>very few doctors will order an extended panel until they've first completed a cheaper, less comprehensive panel</i></b>. The cheaper, less comprehensive panels only test for a small fraction of mutations. <b><i>A negative on these panels doesn't mean anything except that your child does not have the mutations you tested for. </i></b> </end quote></div>

this part blows my mind. it's not like the doc is paying for it. the patient pays. so why would the doc care?

i don't know why they do sweat testing at all. too much variability.

want to know if someone has CF? get a full CF gene panel right off the bat.

why mess around?????
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>concernedmom</b></i>
<b><i>very few doctors will order an extended panel until they've first completed a cheaper, less comprehensive panel</i></b>. The cheaper, less comprehensive panels only test for a small fraction of mutations. <b><i>A negative on these panels doesn't mean anything except that your child does not have the mutations you tested for. </i></b> </end quote></div>

this part blows my mind. it's not like the doc is paying for it. the patient pays. so why would the doc care?

i don't know why they do sweat testing at all. too much variability.

want to know if someone has CF? get a full CF gene panel right off the bat.

why mess around?????
 
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