Cf dx w/ "normal" sweat test

Sakem

New member
Cf dx w/ "normal

I know the RH117 is a milder mutation, but I would think even without smyptoms, they would still be considered having CF if the mutations were on both strands. As far as there not being an "official" diagnosis for the Coast Guard purpose, I am not sure what that is preventing. It they was to get his medical records they would still see where he had two mutations for CF.
 

Sakem

New member
Cf dx w/ "normal

I know the RH117 is a milder mutation, but I would think even without smyptoms, they would still be considered having CF if the mutations were on both strands. As far as there not being an "official" diagnosis for the Coast Guard purpose, I am not sure what that is preventing. It they was to get his medical records they would still see where he had two mutations for CF.
 

Sakem

New member
Cf dx w/ "normal

I know the RH117 is a milder mutation, but I would think even without smyptoms, they would still be considered having CF if the mutations were on both strands. As far as there not being an "official" diagnosis for the Coast Guard purpose, I am not sure what that is preventing. It they was to get his medical records they would still see where he had two mutations for CF.
 

Sakem

New member
Cf dx w/ "normal

I know the RH117 is a milder mutation, but I would think even without smyptoms, they would still be considered having CF if the mutations were on both strands. As far as there not being an "official" diagnosis for the Coast Guard purpose, I am not sure what that is preventing. It they was to get his medical records they would still see where he had two mutations for CF.
 

Sakem

New member
Cf dx w/ "normal

I know the RH117 is a milder mutation, but I would think even without smyptoms, they would still be considered having CF if the mutations were on both strands. As far as there not being an "official" diagnosis for the Coast Guard purpose, I am not sure what that is preventing. It they was to get his medical records they would still see where he had two mutations for CF.
 

LouLou

New member
Cf dx w/ "normal

This article provides the criteria for a cf diagnosis.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.rsmpress.co.uk/S43_2.pdf
">http://www.rsmpress.co.uk/S43_2.pdf
</a>It also might help you understand why not all people with two mutations are given a diagnosis. Simply seeing in medical records that a person has two mutations would not signify a cf diagnosis. As my dad said recently, "it might just be that a majority of us have some shade of gray of cf." My husband and I are choosing to get my son followed as if he was diagnosed with cf to prevent any early symptoms from going undetected. I realize not all people are as proactive so a diagnosis might be good for some "borderline" cases to make sure the patient is followed. I find this subject very interesting. Jada, I had no idea about your sons.
 

LouLou

New member
Cf dx w/ "normal

This article provides the criteria for a cf diagnosis.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.rsmpress.co.uk/S43_2.pdf
">http://www.rsmpress.co.uk/S43_2.pdf
</a>It also might help you understand why not all people with two mutations are given a diagnosis. Simply seeing in medical records that a person has two mutations would not signify a cf diagnosis. As my dad said recently, "it might just be that a majority of us have some shade of gray of cf." My husband and I are choosing to get my son followed as if he was diagnosed with cf to prevent any early symptoms from going undetected. I realize not all people are as proactive so a diagnosis might be good for some "borderline" cases to make sure the patient is followed. I find this subject very interesting. Jada, I had no idea about your sons.
 

LouLou

New member
Cf dx w/ "normal

This article provides the criteria for a cf diagnosis.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.rsmpress.co.uk/S43_2.pdf
">http://www.rsmpress.co.uk/S43_2.pdf
</a>It also might help you understand why not all people with two mutations are given a diagnosis. Simply seeing in medical records that a person has two mutations would not signify a cf diagnosis. As my dad said recently, "it might just be that a majority of us have some shade of gray of cf." My husband and I are choosing to get my son followed as if he was diagnosed with cf to prevent any early symptoms from going undetected. I realize not all people are as proactive so a diagnosis might be good for some "borderline" cases to make sure the patient is followed. I find this subject very interesting. Jada, I had no idea about your sons.
 

LouLou

New member
Cf dx w/ "normal

This article provides the criteria for a cf diagnosis.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.rsmpress.co.uk/S43_2.pdf
">http://www.rsmpress.co.uk/S43_2.pdf
</a>It also might help you understand why not all people with two mutations are given a diagnosis. Simply seeing in medical records that a person has two mutations would not signify a cf diagnosis. As my dad said recently, "it might just be that a majority of us have some shade of gray of cf." My husband and I are choosing to get my son followed as if he was diagnosed with cf to prevent any early symptoms from going undetected. I realize not all people are as proactive so a diagnosis might be good for some "borderline" cases to make sure the patient is followed. I find this subject very interesting. Jada, I had no idea about your sons.
 

LouLou

New member
Cf dx w/ "normal

This article provides the criteria for a cf diagnosis.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.rsmpress.co.uk/S43_2.pdf
">http://www.rsmpress.co.uk/S43_2.pdf
</a>It also might help you understand why not all people with two mutations are given a diagnosis. Simply seeing in medical records that a person has two mutations would not signify a cf diagnosis. As my dad said recently, "it might just be that a majority of us have some shade of gray of cf." My husband and I are choosing to get my son followed as if he was diagnosed with cf to prevent any early symptoms from going undetected. I realize not all people are as proactive so a diagnosis might be good for some "borderline" cases to make sure the patient is followed. I find this subject very interesting. Jada, I had no idea about your sons.
 

cosmokramer

New member
Cf dx w/ "normal

My daughter who is now 2 years old had a normal sweat test, 29 and 36. Because the doctor felt that the numbers were "normal" but higher then what they expected, we did genetic testing. Two mutations were found. She is atypical, no signs no sypmtoms. We were prescribed the vest, and after fighting two appeals with the insurance, we opted for independant review of the claim, and the outside firm agreed that we should have the vest. We use the vest for preventative maintenance. Because CF is so unpredictable, I do anything I can to keep her healthy as long as possible.
 

cosmokramer

New member
Cf dx w/ "normal

My daughter who is now 2 years old had a normal sweat test, 29 and 36. Because the doctor felt that the numbers were "normal" but higher then what they expected, we did genetic testing. Two mutations were found. She is atypical, no signs no sypmtoms. We were prescribed the vest, and after fighting two appeals with the insurance, we opted for independant review of the claim, and the outside firm agreed that we should have the vest. We use the vest for preventative maintenance. Because CF is so unpredictable, I do anything I can to keep her healthy as long as possible.
 

cosmokramer

New member
Cf dx w/ "normal

My daughter who is now 2 years old had a normal sweat test, 29 and 36. Because the doctor felt that the numbers were "normal" but higher then what they expected, we did genetic testing. Two mutations were found. She is atypical, no signs no sypmtoms. We were prescribed the vest, and after fighting two appeals with the insurance, we opted for independant review of the claim, and the outside firm agreed that we should have the vest. We use the vest for preventative maintenance. Because CF is so unpredictable, I do anything I can to keep her healthy as long as possible.
 

cosmokramer

New member
Cf dx w/ "normal

My daughter who is now 2 years old had a normal sweat test, 29 and 36. Because the doctor felt that the numbers were "normal" but higher then what they expected, we did genetic testing. Two mutations were found. She is atypical, no signs no sypmtoms. We were prescribed the vest, and after fighting two appeals with the insurance, we opted for independant review of the claim, and the outside firm agreed that we should have the vest. We use the vest for preventative maintenance. Because CF is so unpredictable, I do anything I can to keep her healthy as long as possible.
 

cosmokramer

New member
Cf dx w/ "normal

My daughter who is now 2 years old had a normal sweat test, 29 and 36. Because the doctor felt that the numbers were "normal" but higher then what they expected, we did genetic testing. Two mutations were found. She is atypical, no signs no sypmtoms. We were prescribed the vest, and after fighting two appeals with the insurance, we opted for independant review of the claim, and the outside firm agreed that we should have the vest. We use the vest for preventative maintenance. Because CF is so unpredictable, I do anything I can to keep her healthy as long as possible.
 
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