Sweat test results - Very Frustrated - Vent

Paige3 · May 30, 2009

Thanks a lot everyone for the understanding and good wishes.

hmw, I know it's very difficult not knowing for sure if your son has cf, are there other tests you can have to find out? May I ask how you know your younger son does not have cf? I am very concerned about my older son and not sure if we should go ahead and have him tested now or wait for his brothers results.

bdd, I hope your wait flys by and you receive good news.

asiewny, my son also has asthma and allergies which he receives treatment for at an asthma and allergy clinic. Also for about the last 3 years he has quite a few GI issues as well. His older brother was diag. with H. pylori through an endoscopic stomach biopsy and the ped. gastro. wanted the entire family to be treated for it and since that time younger son has had problems. His older brother also has a genetic marker for crohns disease and we have to watch that closely and thought maybe he might be affected as well. I guess there are many different things that have similar symptoms.

Wishing the best of health to all.<img src="i/expressions/sun.gif" border="0">

Paige3 · May 30, 2009

Thanks a lot everyone for the understanding and good wishes.

hmw, I know it's very difficult not knowing for sure if your son has cf, are there other tests you can have to find out? May I ask how you know your younger son does not have cf? I am very concerned about my older son and not sure if we should go ahead and have him tested now or wait for his brothers results.

bdd, I hope your wait flys by and you receive good news.

asiewny, my son also has asthma and allergies which he receives treatment for at an asthma and allergy clinic. Also for about the last 3 years he has quite a few GI issues as well. His older brother was diag. with H. pylori through an endoscopic stomach biopsy and the ped. gastro. wanted the entire family to be treated for it and since that time younger son has had problems. His older brother also has a genetic marker for crohns disease and we have to watch that closely and thought maybe he might be affected as well. I guess there are many different things that have similar symptoms.

Wishing the best of health to all.<img src="i/expressions/sun.gif" border="0">

Paige3 · May 30, 2009

Thanks a lot everyone for the understanding and good wishes.

hmw, I know it's very difficult not knowing for sure if your son has cf, are there other tests you can have to find out? May I ask how you know your younger son does not have cf? I am very concerned about my older son and not sure if we should go ahead and have him tested now or wait for his brothers results.

bdd, I hope your wait flys by and you receive good news.

asiewny, my son also has asthma and allergies which he receives treatment for at an asthma and allergy clinic. Also for about the last 3 years he has quite a few GI issues as well. His older brother was diag. with H. pylori through an endoscopic stomach biopsy and the ped. gastro. wanted the entire family to be treated for it and since that time younger son has had problems. His older brother also has a genetic marker for crohns disease and we have to watch that closely and thought maybe he might be affected as well. I guess there are many different things that have similar symptoms.

Wishing the best of health to all.<img src="i/expressions/sun.gif" border="0">

Paige3 · May 30, 2009

Thanks a lot everyone for the understanding and good wishes.

hmw, I know it's very difficult not knowing for sure if your son has cf, are there other tests you can have to find out? May I ask how you know your younger son does not have cf? I am very concerned about my older son and not sure if we should go ahead and have him tested now or wait for his brothers results.

bdd, I hope your wait flys by and you receive good news.

asiewny, my son also has asthma and allergies which he receives treatment for at an asthma and allergy clinic. Also for about the last 3 years he has quite a few GI issues as well. His older brother was diag. with H. pylori through an endoscopic stomach biopsy and the ped. gastro. wanted the entire family to be treated for it and since that time younger son has had problems. His older brother also has a genetic marker for crohns disease and we have to watch that closely and thought maybe he might be affected as well. I guess there are many different things that have similar symptoms.

Wishing the best of health to all.<img src="i/expressions/sun.gif" border="0">

Paige3 · May 30, 2009

Thanks a lot everyone for the understanding and good wishes.
 
 hmw, I know it's very difficult not knowing for sure if your son has cf, are there other tests you can have to find out? May I ask how you know your younger son does not have cf? I am very concerned about my older son and not sure if we should go ahead and have him tested now or wait for his brothers results.
 
 bdd, I hope your wait flys by and you receive good news.
 
 asiewny, my son also has asthma and allergies which he receives treatment for at an asthma and allergy clinic. Also for about the last 3 years he has quite a few GI issues as well. His older brother was diag. with H. pylori through an endoscopic stomach biopsy and the ped. gastro. wanted the entire family to be treated for it and since that time younger son has had problems. His older brother also has a genetic marker for crohns disease and we have to watch that closely and thought maybe he might be affected as well. I guess there are many different things that have similar symptoms.
 
 Wishing the best of health to all.<img src="i/expressions/sun.gif" border="0">

hmw · May 30, 2009

All three of my kids had full genetic testing. Emily and Shawn both carry a DF508 and Timothy does not, so we know he doesn't have CF. There is, of course, a chance that he is a carrier of the unknown 2nd mutation that Emily has (hopefully they will have identified it by the time family planning is an issue for him) but we at least know for a certainty that he does not have CF.

For Shawn. His sweat tests were 48 and 54, taken only a couple weeks apart. I will probably ask for a 3rd sweat test at some point, a little farther down the road (i.e. in 6 months, so it falls about a yr after the first two.) It's an inexpensive, non-invasive test and well... who knows, maybe it would help. I know it's taken repeated tests for some kids to get accurately dx'ed and I want accuracy either way.

He also had a really fun (NOT) appointment for a boy... Emily's clinic sent him to a urologist, since most (95% or more) of males with CF have absence of the vas deferens. So this would have been considered diagnostic for him, if it was discovered this was the case with him. Well, it was a really embarrassing appt. with a jerk of a dr- and all for nothing, since they couldn't determine either way whether he had what they were looking for. One of Emily's drs briefly mentioned <a target=_blank class=ftalternatingbarlinklarge href="http://www.hopkinscf.org/main/whatiscf/diag_testnasal.html">Nasal Potential Difference</a> testing, but around here Hopkins is the closest place that does it and insurance approval would likely be an issue... we will try other things first before attempting that.

Sputum culture can be diagnostic if it turns up positive for certain bugs; he really should have one of those. Some also pursue a CT scan of the sinuses to check for nasal polyps- which are very rare among children in general but occur in a much higher percentage of kids with CF. Shawn's primary symptom is chronic sinus congestion for the last several yrs so I have wondered about this, although nothing suggesting this has ever showed up during routine exams.

Re. testing for your other son: our clinic automatically wanted the boys tested once Emily's sweat test came back positive. At least in her case, she was properly tested the first time at our clinic's lab. It was still repeated just to confirm (also routine for this clinic, even though her first test was 108- not 'borderline' in the least.) So the decision was made easy for me. How has your older child been in the time since his first test? (Growth, etc?) Given the combo of gi and respiratory issues in your children & how symptoms can, indeed, overlap for many different conditions you might want to call the kids' dr and ask about getting one done.

Just as an 'fwiw' kind of thing; Timothy's result was a 36. That is under 40 and therefore 'negative', but it was not low enough for Emily's doctor to relax about until after the Ambry test cleared him. So I think it's very good that this is being followed through on; scores in this range can definitely go either way...

hmw · May 30, 2009

All three of my kids had full genetic testing. Emily and Shawn both carry a DF508 and Timothy does not, so we know he doesn't have CF. There is, of course, a chance that he is a carrier of the unknown 2nd mutation that Emily has (hopefully they will have identified it by the time family planning is an issue for him) but we at least know for a certainty that he does not have CF.

For Shawn. His sweat tests were 48 and 54, taken only a couple weeks apart. I will probably ask for a 3rd sweat test at some point, a little farther down the road (i.e. in 6 months, so it falls about a yr after the first two.) It's an inexpensive, non-invasive test and well... who knows, maybe it would help. I know it's taken repeated tests for some kids to get accurately dx'ed and I want accuracy either way.

He also had a really fun (NOT) appointment for a boy... Emily's clinic sent him to a urologist, since most (95% or more) of males with CF have absence of the vas deferens. So this would have been considered diagnostic for him, if it was discovered this was the case with him. Well, it was a really embarrassing appt. with a jerk of a dr- and all for nothing, since they couldn't determine either way whether he had what they were looking for. One of Emily's drs briefly mentioned <a target=_blank class=ftalternatingbarlinklarge href="http://www.hopkinscf.org/main/whatiscf/diag_testnasal.html">Nasal Potential Difference</a> testing, but around here Hopkins is the closest place that does it and insurance approval would likely be an issue... we will try other things first before attempting that.

Sputum culture can be diagnostic if it turns up positive for certain bugs; he really should have one of those. Some also pursue a CT scan of the sinuses to check for nasal polyps- which are very rare among children in general but occur in a much higher percentage of kids with CF. Shawn's primary symptom is chronic sinus congestion for the last several yrs so I have wondered about this, although nothing suggesting this has ever showed up during routine exams.

Re. testing for your other son: our clinic automatically wanted the boys tested once Emily's sweat test came back positive. At least in her case, she was properly tested the first time at our clinic's lab. It was still repeated just to confirm (also routine for this clinic, even though her first test was 108- not 'borderline' in the least.) So the decision was made easy for me. How has your older child been in the time since his first test? (Growth, etc?) Given the combo of gi and respiratory issues in your children & how symptoms can, indeed, overlap for many different conditions you might want to call the kids' dr and ask about getting one done.

Just as an 'fwiw' kind of thing; Timothy's result was a 36. That is under 40 and therefore 'negative', but it was not low enough for Emily's doctor to relax about until after the Ambry test cleared him. So I think it's very good that this is being followed through on; scores in this range can definitely go either way...

hmw · May 30, 2009

All three of my kids had full genetic testing. Emily and Shawn both carry a DF508 and Timothy does not, so we know he doesn't have CF. There is, of course, a chance that he is a carrier of the unknown 2nd mutation that Emily has (hopefully they will have identified it by the time family planning is an issue for him) but we at least know for a certainty that he does not have CF.

For Shawn. His sweat tests were 48 and 54, taken only a couple weeks apart. I will probably ask for a 3rd sweat test at some point, a little farther down the road (i.e. in 6 months, so it falls about a yr after the first two.) It's an inexpensive, non-invasive test and well... who knows, maybe it would help. I know it's taken repeated tests for some kids to get accurately dx'ed and I want accuracy either way.

He also had a really fun (NOT) appointment for a boy... Emily's clinic sent him to a urologist, since most (95% or more) of males with CF have absence of the vas deferens. So this would have been considered diagnostic for him, if it was discovered this was the case with him. Well, it was a really embarrassing appt. with a jerk of a dr- and all for nothing, since they couldn't determine either way whether he had what they were looking for. One of Emily's drs briefly mentioned <a target=_blank class=ftalternatingbarlinklarge href="http://www.hopkinscf.org/main/whatiscf/diag_testnasal.html">Nasal Potential Difference</a> testing, but around here Hopkins is the closest place that does it and insurance approval would likely be an issue... we will try other things first before attempting that.

Sputum culture can be diagnostic if it turns up positive for certain bugs; he really should have one of those. Some also pursue a CT scan of the sinuses to check for nasal polyps- which are very rare among children in general but occur in a much higher percentage of kids with CF. Shawn's primary symptom is chronic sinus congestion for the last several yrs so I have wondered about this, although nothing suggesting this has ever showed up during routine exams.

Re. testing for your other son: our clinic automatically wanted the boys tested once Emily's sweat test came back positive. At least in her case, she was properly tested the first time at our clinic's lab. It was still repeated just to confirm (also routine for this clinic, even though her first test was 108- not 'borderline' in the least.) So the decision was made easy for me. How has your older child been in the time since his first test? (Growth, etc?) Given the combo of gi and respiratory issues in your children & how symptoms can, indeed, overlap for many different conditions you might want to call the kids' dr and ask about getting one done.

Just as an 'fwiw' kind of thing; Timothy's result was a 36. That is under 40 and therefore 'negative', but it was not low enough for Emily's doctor to relax about until after the Ambry test cleared him. So I think it's very good that this is being followed through on; scores in this range can definitely go either way...

hmw · May 30, 2009

All three of my kids had full genetic testing. Emily and Shawn both carry a DF508 and Timothy does not, so we know he doesn't have CF. There is, of course, a chance that he is a carrier of the unknown 2nd mutation that Emily has (hopefully they will have identified it by the time family planning is an issue for him) but we at least know for a certainty that he does not have CF.

For Shawn. His sweat tests were 48 and 54, taken only a couple weeks apart. I will probably ask for a 3rd sweat test at some point, a little farther down the road (i.e. in 6 months, so it falls about a yr after the first two.) It's an inexpensive, non-invasive test and well... who knows, maybe it would help. I know it's taken repeated tests for some kids to get accurately dx'ed and I want accuracy either way.

He also had a really fun (NOT) appointment for a boy... Emily's clinic sent him to a urologist, since most (95% or more) of males with CF have absence of the vas deferens. So this would have been considered diagnostic for him, if it was discovered this was the case with him. Well, it was a really embarrassing appt. with a jerk of a dr- and all for nothing, since they couldn't determine either way whether he had what they were looking for. One of Emily's drs briefly mentioned <a target=_blank class=ftalternatingbarlinklarge href="http://www.hopkinscf.org/main/whatiscf/diag_testnasal.html">Nasal Potential Difference</a> testing, but around here Hopkins is the closest place that does it and insurance approval would likely be an issue... we will try other things first before attempting that.

Sputum culture can be diagnostic if it turns up positive for certain bugs; he really should have one of those. Some also pursue a CT scan of the sinuses to check for nasal polyps- which are very rare among children in general but occur in a much higher percentage of kids with CF. Shawn's primary symptom is chronic sinus congestion for the last several yrs so I have wondered about this, although nothing suggesting this has ever showed up during routine exams.

Re. testing for your other son: our clinic automatically wanted the boys tested once Emily's sweat test came back positive. At least in her case, she was properly tested the first time at our clinic's lab. It was still repeated just to confirm (also routine for this clinic, even though her first test was 108- not 'borderline' in the least.) So the decision was made easy for me. How has your older child been in the time since his first test? (Growth, etc?) Given the combo of gi and respiratory issues in your children & how symptoms can, indeed, overlap for many different conditions you might want to call the kids' dr and ask about getting one done.

Just as an 'fwiw' kind of thing; Timothy's result was a 36. That is under 40 and therefore 'negative', but it was not low enough for Emily's doctor to relax about until after the Ambry test cleared him. So I think it's very good that this is being followed through on; scores in this range can definitely go either way...

hmw · May 30, 2009

All three of my kids had full genetic testing. Emily and Shawn both carry a DF508 and Timothy does not, so we know he doesn't have CF. There is, of course, a chance that he is a carrier of the unknown 2nd mutation that Emily has (hopefully they will have identified it by the time family planning is an issue for him) but we at least know for a certainty that he does not have CF.
 
 For Shawn. His sweat tests were 48 and 54, taken only a couple weeks apart. I will probably ask for a 3rd sweat test at some point, a little farther down the road (i.e. in 6 months, so it falls about a yr after the first two.) It's an inexpensive, non-invasive test and well... who knows, maybe it would help. I know it's taken repeated tests for some kids to get accurately dx'ed and I want accuracy either way.
 
 He also had a really fun (NOT) appointment for a boy... Emily's clinic sent him to a urologist, since most (95% or more) of males with CF have absence of the vas deferens. So this would have been considered diagnostic for him, if it was discovered this was the case with him. Well, it was a really embarrassing appt. with a jerk of a dr- and all for nothing, since they couldn't determine either way whether he had what they were looking for. One of Emily's drs briefly mentioned <a target=_blank class=ftalternatingbarlinklarge href="http://www.hopkinscf.org/main/whatiscf/diag_testnasal.html">Nasal Potential Difference</a> testing, but around here Hopkins is the closest place that does it and insurance approval would likely be an issue... we will try other things first before attempting that.
 
 Sputum culture can be diagnostic if it turns up positive for certain bugs; he really should have one of those. Some also pursue a CT scan of the sinuses to check for nasal polyps- which are very rare among children in general but occur in a much higher percentage of kids with CF. Shawn's primary symptom is chronic sinus congestion for the last several yrs so I have wondered about this, although nothing suggesting this has ever showed up during routine exams.
 
 Re. testing for your other son: our clinic automatically wanted the boys tested once Emily's sweat test came back positive. At least in her case, she was properly tested the first time at our clinic's lab. It was still repeated just to confirm (also routine for this clinic, even though her first test was 108- not 'borderline' in the least.) So the decision was made easy for me. How has your older child been in the time since his first test? (Growth, etc?) Given the combo of gi and respiratory issues in your children & how symptoms can, indeed, overlap for many different conditions you might want to call the kids' dr and ask about getting one done.
 
 Just as an 'fwiw' kind of thing; Timothy's result was a 36. That is under 40 and therefore 'negative', but it was not low enough for Emily's doctor to relax about until after the Ambry test cleared him. So I think it's very good that this is being followed through on; scores in this range can definitely go either way...

MaksNana · Jun 1, 2009

Hi Paige, Sorry you are going through so much confusion...It would help to know how old your child is.That can play a role on the sweat test...Well,actually alot of things can play a role on sweat testing....You may need many sweat test done...But I'v always been told, if a sweat test comes back positive ,it's positive..
Ambry's genetic lab is the best on looking for any rare gene's...My grandbaby went trough the basic lab that the insurance pd for and they found the most common one which is the DF508,but when it was sent to Ambry's (which we had to pay some) they found a rare gene..So far to this day only 3other kids have the rare gene and Makailyn is one of them....
It is time comsumeing,and you think,why can't they just know...
I wish for the best for you and your family,, and please keep us posted..<img src="">

MaksNana · Jun 1, 2009

Hi Paige, Sorry you are going through so much confusion...It would help to know how old your child is.That can play a role on the sweat test...Well,actually alot of things can play a role on sweat testing....You may need many sweat test done...But I'v always been told, if a sweat test comes back positive ,it's positive..
Ambry's genetic lab is the best on looking for any rare gene's...My grandbaby went trough the basic lab that the insurance pd for and they found the most common one which is the DF508,but when it was sent to Ambry's (which we had to pay some) they found a rare gene..So far to this day only 3other kids have the rare gene and Makailyn is one of them....
It is time comsumeing,and you think,why can't they just know...
I wish for the best for you and your family,, and please keep us posted..<img src="">

MaksNana · Jun 1, 2009

Hi Paige, Sorry you are going through so much confusion...It would help to know how old your child is.That can play a role on the sweat test...Well,actually alot of things can play a role on sweat testing....You may need many sweat test done...But I'v always been told, if a sweat test comes back positive ,it's positive..
Ambry's genetic lab is the best on looking for any rare gene's...My grandbaby went trough the basic lab that the insurance pd for and they found the most common one which is the DF508,but when it was sent to Ambry's (which we had to pay some) they found a rare gene..So far to this day only 3other kids have the rare gene and Makailyn is one of them....
It is time comsumeing,and you think,why can't they just know...
I wish for the best for you and your family,, and please keep us posted..<img src="">

MaksNana · Jun 1, 2009

Hi Paige, Sorry you are going through so much confusion...It would help to know how old your child is.That can play a role on the sweat test...Well,actually alot of things can play a role on sweat testing....You may need many sweat test done...But I'v always been told, if a sweat test comes back positive ,it's positive..
Ambry's genetic lab is the best on looking for any rare gene's...My grandbaby went trough the basic lab that the insurance pd for and they found the most common one which is the DF508,but when it was sent to Ambry's (which we had to pay some) they found a rare gene..So far to this day only 3other kids have the rare gene and Makailyn is one of them....
It is time comsumeing,and you think,why can't they just know...
I wish for the best for you and your family,, and please keep us posted..<img src="">

MaksNana · Jun 1, 2009

Hi Paige, Sorry you are going through so much confusion...It would help to know how old your child is.That can play a role on the sweat test...Well,actually alot of things can play a role on sweat testing....You may need many sweat test done...But I'v always been told, if a sweat test comes back positive ,it's positive..
 Ambry's genetic lab is the best on looking for any rare gene's...My grandbaby went trough the basic lab that the insurance pd for and they found the most common one which is the DF508,but when it was sent to Ambry's (which we had to pay some) they found a rare gene..So far to this day only 3other kids have the rare gene and Makailyn is one of them....
 It is time comsumeing,and you think,why can't they just know...
 I wish for the best for you and your family,, and please keep us posted..<img src="">

Paige3 · Jun 1, 2009

Hmw,thanks for the information about your kids tests. It is very helpful to know what to expect. I hope you can get a definite answer for your son very soon.

MaksNana, my son is 11 yrs old and I do wonder if that might be causing the numbers to be higher than they would be if he were a baby. Thanks for your good wishes.

Paige3 · Jun 1, 2009

Hmw,thanks for the information about your kids tests. It is very helpful to know what to expect. I hope you can get a definite answer for your son very soon.

MaksNana, my son is 11 yrs old and I do wonder if that might be causing the numbers to be higher than they would be if he were a baby. Thanks for your good wishes.

Paige3 · Jun 1, 2009

Hmw,thanks for the information about your kids tests. It is very helpful to know what to expect. I hope you can get a definite answer for your son very soon.

MaksNana, my son is 11 yrs old and I do wonder if that might be causing the numbers to be higher than they would be if he were a baby. Thanks for your good wishes.

Paige3 · Jun 1, 2009

Hmw,thanks for the information about your kids tests. It is very helpful to know what to expect. I hope you can get a definite answer for your son very soon.

MaksNana, my son is 11 yrs old and I do wonder if that might be causing the numbers to be higher than they would be if he were a baby. Thanks for your good wishes.

Paige3 · Jun 1, 2009

Hmw,thanks for the information about your kids tests. It is very helpful to know what to expect. I hope you can get a definite answer for your son very soon.
 
 MaksNana, my son is 11 yrs old and I do wonder if that might be causing the numbers to be higher than they would be if he were a baby. Thanks for your good wishes.

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