What's lowest sweat test result,but was still DX w/CF thru genetic testing

mom2lillian

New member
alexsmom-Please I beg you to take action and get a new doctor RIGHT AWAY, it sounds like your mother's instincts are spot on and you will never regret trusting them--even if & you are wrong (& I hope that you are).

Please find a list of accredited CF Centers at www.cff.org

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
call that clinic and ask to speak to the cystic fibrosis clinic director, tell them your problem. Or if your insurance allows it refer yourself to a new pulmonologist. Or if your center is the same as mine my CF clinic is an asthma clinci for the worst asthma patients around on MWF so try to get in to them since then either way you will be in the best hands.

The quickest route might be to completely go ballistic on your current pulmonologist --this is probably the route I would take <img src="i/expressions/devil.gif" border="0"> but I dont know your personality.

I was not diagnosed utnil I was 21 years old and there are no 'rules' as to what your sweat test can be and sitll have it or at what age a diagnosis is made. Tell that dumbass of a doctor to read up a bit about 'mild' and 'atypical' and late diagnosis cases. Sorry but this topic gets me in an uproar.

So basically whatever route you take stick to your guns you know what is best for your child, my mom wishes in hindsight something else woudl have been done but she trusted docotrs knew best and then her and my grandma felt terrible when I was diagnosed. If you need any info about the ambry panel or are interested to read about my diagnosis please see my blog.
 

mom2lillian

New member
alexsmom-Please I beg you to take action and get a new doctor RIGHT AWAY, it sounds like your mother's instincts are spot on and you will never regret trusting them--even if & you are wrong (& I hope that you are).

Please find a list of accredited CF Centers at www.cff.org

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
call that clinic and ask to speak to the cystic fibrosis clinic director, tell them your problem. Or if your insurance allows it refer yourself to a new pulmonologist. Or if your center is the same as mine my CF clinic is an asthma clinci for the worst asthma patients around on MWF so try to get in to them since then either way you will be in the best hands.

The quickest route might be to completely go ballistic on your current pulmonologist --this is probably the route I would take <img src="i/expressions/devil.gif" border="0"> but I dont know your personality.

I was not diagnosed utnil I was 21 years old and there are no 'rules' as to what your sweat test can be and sitll have it or at what age a diagnosis is made. Tell that dumbass of a doctor to read up a bit about 'mild' and 'atypical' and late diagnosis cases. Sorry but this topic gets me in an uproar.

So basically whatever route you take stick to your guns you know what is best for your child, my mom wishes in hindsight something else woudl have been done but she trusted docotrs knew best and then her and my grandma felt terrible when I was diagnosed. If you need any info about the ambry panel or are interested to read about my diagnosis please see my blog.
 

mom2lillian

New member
alexsmom-Please I beg you to take action and get a new doctor RIGHT AWAY, it sounds like your mother's instincts are spot on and you will never regret trusting them--even if & you are wrong (& I hope that you are).

Please find a list of accredited CF Centers at www.cff.org

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
call that clinic and ask to speak to the cystic fibrosis clinic director, tell them your problem. Or if your insurance allows it refer yourself to a new pulmonologist. Or if your center is the same as mine my CF clinic is an asthma clinci for the worst asthma patients around on MWF so try to get in to them since then either way you will be in the best hands.

The quickest route might be to completely go ballistic on your current pulmonologist --this is probably the route I would take <img src="i/expressions/devil.gif" border="0"> but I dont know your personality.

I was not diagnosed utnil I was 21 years old and there are no 'rules' as to what your sweat test can be and sitll have it or at what age a diagnosis is made. Tell that dumbass of a doctor to read up a bit about 'mild' and 'atypical' and late diagnosis cases. Sorry but this topic gets me in an uproar.

So basically whatever route you take stick to your guns you know what is best for your child, my mom wishes in hindsight something else woudl have been done but she trusted docotrs knew best and then her and my grandma felt terrible when I was diagnosed. If you need any info about the ambry panel or are interested to read about my diagnosis please see my blog.
 

mom2lillian

New member
alexsmom-Please I beg you to take action and get a new doctor RIGHT AWAY, it sounds like your mother's instincts are spot on and you will never regret trusting them--even if & you are wrong (& I hope that you are).

Please find a list of accredited CF Centers at www.cff.org

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
call that clinic and ask to speak to the cystic fibrosis clinic director, tell them your problem. Or if your insurance allows it refer yourself to a new pulmonologist. Or if your center is the same as mine my CF clinic is an asthma clinci for the worst asthma patients around on MWF so try to get in to them since then either way you will be in the best hands.

The quickest route might be to completely go ballistic on your current pulmonologist --this is probably the route I would take <img src="i/expressions/devil.gif" border="0"> but I dont know your personality.

I was not diagnosed utnil I was 21 years old and there are no 'rules' as to what your sweat test can be and sitll have it or at what age a diagnosis is made. Tell that dumbass of a doctor to read up a bit about 'mild' and 'atypical' and late diagnosis cases. Sorry but this topic gets me in an uproar.

So basically whatever route you take stick to your guns you know what is best for your child, my mom wishes in hindsight something else woudl have been done but she trusted docotrs knew best and then her and my grandma felt terrible when I was diagnosed. If you need any info about the ambry panel or are interested to read about my diagnosis please see my blog.
 

mom2lillian

New member
alexsmom-Please I beg you to take action and get a new doctor RIGHT AWAY, it sounds like your mother's instincts are spot on and you will never regret trusting them--even if & you are wrong (& I hope that you are).

Please find a list of accredited CF Centers at www.cff.org

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>
call that clinic and ask to speak to the cystic fibrosis clinic director, tell them your problem. Or if your insurance allows it refer yourself to a new pulmonologist. Or if your center is the same as mine my CF clinic is an asthma clinci for the worst asthma patients around on MWF so try to get in to them since then either way you will be in the best hands.

The quickest route might be to completely go ballistic on your current pulmonologist --this is probably the route I would take <img src="i/expressions/devil.gif" border="0"> but I dont know your personality.

I was not diagnosed utnil I was 21 years old and there are no 'rules' as to what your sweat test can be and sitll have it or at what age a diagnosis is made. Tell that dumbass of a doctor to read up a bit about 'mild' and 'atypical' and late diagnosis cases. Sorry but this topic gets me in an uproar.

So basically whatever route you take stick to your guns you know what is best for your child, my mom wishes in hindsight something else woudl have been done but she trusted docotrs knew best and then her and my grandma felt terrible when I was diagnosed. If you need any info about the ambry panel or are interested to read about my diagnosis please see my blog.
 

3gr8kids

New member
hello.....i have children w/ cf and my son sweat test is in the 60's and my daughtors is 16....when my dau was born hers was only 9....Hope this helps
 

3gr8kids

New member
hello.....i have children w/ cf and my son sweat test is in the 60's and my daughtors is 16....when my dau was born hers was only 9....Hope this helps
 

3gr8kids

New member
hello.....i have children w/ cf and my son sweat test is in the 60's and my daughtors is 16....when my dau was born hers was only 9....Hope this helps
 

3gr8kids

New member
hello.....i have children w/ cf and my son sweat test is in the 60's and my daughtors is 16....when my dau was born hers was only 9....Hope this helps
 

3gr8kids

New member
hello.....i have children w/ cf and my son sweat test is in the 60's and my daughtors is 16....when my dau was born hers was only 9....Hope this helps
 

Alyssa

New member
my kids sweat test numbers are 38 & 41

Ditto to mom2lillians post ! My daughter was misdiagnosed for 8 years because I believed the doctors when they said "negative sweat test"
 

Alyssa

New member
my kids sweat test numbers are 38 & 41

Ditto to mom2lillians post ! My daughter was misdiagnosed for 8 years because I believed the doctors when they said "negative sweat test"
 

Alyssa

New member
my kids sweat test numbers are 38 & 41

Ditto to mom2lillians post ! My daughter was misdiagnosed for 8 years because I believed the doctors when they said "negative sweat test"
 

Alyssa

New member
my kids sweat test numbers are 38 & 41

Ditto to mom2lillians post ! My daughter was misdiagnosed for 8 years because I believed the doctors when they said "negative sweat test"
 

Alyssa

New member
my kids sweat test numbers are 38 & 41

Ditto to mom2lillians post ! My daughter was misdiagnosed for 8 years because I believed the doctors when they said "negative sweat test"
 

JORDYSMOM

New member
Hi there

I have to agree with everyone else. My son wasn't dx until 15 because he is atypical and "mild". We were told it was allergies and asthma blah blah blah! I was uninformed and of course didn't even consider questioning the docs. Hind sight really is 20/20.

I had trouble with the insurance company not wanting to pay for Ambry. Ambry called me to let me know that and what my options were. They were awesome!! They worked with me on doing the test which I paid for myself. They gave me a reduced price and let me pay 1/2 up front and then billed me the rest. They were just very kind to me when I desperately needed something positive to happen!

I hope you get the answers you need. It really sounds like CF. That mommy instinct is very rarely wrong. Keep us posted.

Stacey
 

JORDYSMOM

New member
Hi there

I have to agree with everyone else. My son wasn't dx until 15 because he is atypical and "mild". We were told it was allergies and asthma blah blah blah! I was uninformed and of course didn't even consider questioning the docs. Hind sight really is 20/20.

I had trouble with the insurance company not wanting to pay for Ambry. Ambry called me to let me know that and what my options were. They were awesome!! They worked with me on doing the test which I paid for myself. They gave me a reduced price and let me pay 1/2 up front and then billed me the rest. They were just very kind to me when I desperately needed something positive to happen!

I hope you get the answers you need. It really sounds like CF. That mommy instinct is very rarely wrong. Keep us posted.

Stacey
 

JORDYSMOM

New member
Hi there

I have to agree with everyone else. My son wasn't dx until 15 because he is atypical and "mild". We were told it was allergies and asthma blah blah blah! I was uninformed and of course didn't even consider questioning the docs. Hind sight really is 20/20.

I had trouble with the insurance company not wanting to pay for Ambry. Ambry called me to let me know that and what my options were. They were awesome!! They worked with me on doing the test which I paid for myself. They gave me a reduced price and let me pay 1/2 up front and then billed me the rest. They were just very kind to me when I desperately needed something positive to happen!

I hope you get the answers you need. It really sounds like CF. That mommy instinct is very rarely wrong. Keep us posted.

Stacey
 

JORDYSMOM

New member
Hi there

I have to agree with everyone else. My son wasn't dx until 15 because he is atypical and "mild". We were told it was allergies and asthma blah blah blah! I was uninformed and of course didn't even consider questioning the docs. Hind sight really is 20/20.

I had trouble with the insurance company not wanting to pay for Ambry. Ambry called me to let me know that and what my options were. They were awesome!! They worked with me on doing the test which I paid for myself. They gave me a reduced price and let me pay 1/2 up front and then billed me the rest. They were just very kind to me when I desperately needed something positive to happen!

I hope you get the answers you need. It really sounds like CF. That mommy instinct is very rarely wrong. Keep us posted.

Stacey
 

JORDYSMOM

New member
Hi there

I have to agree with everyone else. My son wasn't dx until 15 because he is atypical and "mild". We were told it was allergies and asthma blah blah blah! I was uninformed and of course didn't even consider questioning the docs. Hind sight really is 20/20.

I had trouble with the insurance company not wanting to pay for Ambry. Ambry called me to let me know that and what my options were. They were awesome!! They worked with me on doing the test which I paid for myself. They gave me a reduced price and let me pay 1/2 up front and then billed me the rest. They were just very kind to me when I desperately needed something positive to happen!

I hope you get the answers you need. It really sounds like CF. That mommy instinct is very rarely wrong. Keep us posted.

Stacey
 
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