Help?

C

chrissyd

New member
Hey guys! I work with a lady who has a 20 month old daughter. Her daughter is contstantly sick...
random low grade fevers
loads of breathing issues (Been told it asthma)
ear infections

The list goes on. Anyway she went to a "specialist" (I think pulminary) for the issues (they have tried so much medicine on this little girl and none of it is working.) As she was talking to this new Dr, he asked about all of the tests that were done. She told him all of them and at the end she said "Oh I forgot the most important one. They did a CF sweat test, but it was inconclusive"

This Dr laughed in her face and asked why they did a CF test and then added, "black people don't get CF"

I was livid and so was my supervisor (whose daughter has CF). I have been looking around for a someone who can help this little girl, CF or not they need an answer. I guess what I'm asking is that if any one here has any suggestions or names or *anything*...
We are in the Maryland area.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
Hey guys! I work with a lady who has a 20 month old daughter. Her daughter is contstantly sick...
random low grade fevers
loads of breathing issues (Been told it asthma)
ear infections

The list goes on. Anyway she went to a "specialist" (I think pulminary) for the issues (they have tried so much medicine on this little girl and none of it is working.) As she was talking to this new Dr, he asked about all of the tests that were done. She told him all of them and at the end she said "Oh I forgot the most important one. They did a CF sweat test, but it was inconclusive"

This Dr laughed in her face and asked why they did a CF test and then added, "black people don't get CF"

I was livid and so was my supervisor (whose daughter has CF). I have been looking around for a someone who can help this little girl, CF or not they need an answer. I guess what I'm asking is that if any one here has any suggestions or names or *anything*...
We are in the Maryland area.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
Hey guys! I work with a lady who has a 20 month old daughter. Her daughter is contstantly sick...
random low grade fevers
loads of breathing issues (Been told it asthma)
ear infections

The list goes on. Anyway she went to a "specialist" (I think pulminary) for the issues (they have tried so much medicine on this little girl and none of it is working.) As she was talking to this new Dr, he asked about all of the tests that were done. She told him all of them and at the end she said "Oh I forgot the most important one. They did a CF sweat test, but it was inconclusive"

This Dr laughed in her face and asked why they did a CF test and then added, "black people don't get CF"

I was livid and so was my supervisor (whose daughter has CF). I have been looking around for a someone who can help this little girl, CF or not they need an answer. I guess what I'm asking is that if any one here has any suggestions or names or *anything*...
We are in the Maryland area.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
Hey guys! I work with a lady who has a 20 month old daughter. Her daughter is contstantly sick...
random low grade fevers
loads of breathing issues (Been told it asthma)
ear infections

The list goes on. Anyway she went to a "specialist" (I think pulminary) for the issues (they have tried so much medicine on this little girl and none of it is working.) As she was talking to this new Dr, he asked about all of the tests that were done. She told him all of them and at the end she said "Oh I forgot the most important one. They did a CF sweat test, but it was inconclusive"

This Dr laughed in her face and asked why they did a CF test and then added, "black people don't get CF"

I was livid and so was my supervisor (whose daughter has CF). I have been looking around for a someone who can help this little girl, CF or not they need an answer. I guess what I'm asking is that if any one here has any suggestions or names or *anything*...
We are in the Maryland area.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
Hey guys! I work with a lady who has a 20 month old daughter. Her daughter is contstantly sick...
random low grade fevers
loads of breathing issues (Been told it asthma)
ear infections

The list goes on. Anyway she went to a "specialist" (I think pulminary) for the issues (they have tried so much medicine on this little girl and none of it is working.) As she was talking to this new Dr, he asked about all of the tests that were done. She told him all of them and at the end she said "Oh I forgot the most important one. They did a CF sweat test, but it was inconclusive"

This Dr laughed in her face and asked why they did a CF test and then added, "black people don't get CF"

I was livid and so was my supervisor (whose daughter has CF). I have been looking around for a someone who can help this little girl, CF or not they need an answer. I guess what I'm asking is that if any one here has any suggestions or names or *anything*...
We are in the Maryland area.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
Hey guys! I work with a lady who has a 20 month old daughter. Her daughter is contstantly sick...
random low grade fevers
loads of breathing issues (Been told it asthma)
ear infections

The list goes on. Anyway she went to a "specialist" (I think pulminary) for the issues (they have tried so much medicine on this little girl and none of it is working.) As she was talking to this new Dr, he asked about all of the tests that were done. She told him all of them and at the end she said "Oh I forgot the most important one. They did a CF sweat test, but it was inconclusive"

This Dr laughed in her face and asked why they did a CF test and then added, "black people don't get CF"

I was livid and so was my supervisor (whose daughter has CF). I have been looking around for a someone who can help this little girl, CF or not they need an answer. I guess what I'm asking is that if any one here has any suggestions or names or *anything*...
We are in the Maryland area.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
J

JazzysMom

New member
I AM OUTRAGED......although the likelyhood is lower its not impossible. Please have her contact the nearest accredited CF center near her to discuss another sweat test &/or genetic testing. Here is the link of US centers:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cf_centers.cfm
">http://www.cysticfibrosis.com/cf_centers.cfm
</a>
She needs to stay away from that doctor. Even if an accredited center doesnt give a positive CF dx they could probably guide her to someone that will give the proper care.

Let us know what happens if you can!
 
J

JazzysMom

New member
I AM OUTRAGED......although the likelyhood is lower its not impossible. Please have her contact the nearest accredited CF center near her to discuss another sweat test &/or genetic testing. Here is the link of US centers:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cf_centers.cfm
">http://www.cysticfibrosis.com/cf_centers.cfm
</a>
She needs to stay away from that doctor. Even if an accredited center doesnt give a positive CF dx they could probably guide her to someone that will give the proper care.

Let us know what happens if you can!
 
J

JazzysMom

New member
I AM OUTRAGED......although the likelyhood is lower its not impossible. Please have her contact the nearest accredited CF center near her to discuss another sweat test &/or genetic testing. Here is the link of US centers:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cf_centers.cfm
">http://www.cysticfibrosis.com/cf_centers.cfm
</a>
She needs to stay away from that doctor. Even if an accredited center doesnt give a positive CF dx they could probably guide her to someone that will give the proper care.

Let us know what happens if you can!
 
J

JazzysMom

New member
I AM OUTRAGED......although the likelyhood is lower its not impossible. Please have her contact the nearest accredited CF center near her to discuss another sweat test &/or genetic testing. Here is the link of US centers:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cf_centers.cfm
">http://www.cysticfibrosis.com/cf_centers.cfm
</a>
She needs to stay away from that doctor. Even if an accredited center doesnt give a positive CF dx they could probably guide her to someone that will give the proper care.

Let us know what happens if you can!
 
J

JazzysMom

New member
I AM OUTRAGED......although the likelyhood is lower its not impossible. Please have her contact the nearest accredited CF center near her to discuss another sweat test &/or genetic testing. Here is the link of US centers:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cf_centers.cfm
">http://www.cysticfibrosis.com/cf_centers.cfm
</a>
She needs to stay away from that doctor. Even if an accredited center doesnt give a positive CF dx they could probably guide her to someone that will give the proper care.

Let us know what happens if you can!
 
J

JazzysMom

New member
I AM OUTRAGED......although the likelyhood is lower its not impossible. Please have her contact the nearest accredited CF center near her to discuss another sweat test &/or genetic testing. Here is the link of US centers:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cf_centers.cfm
">http://www.cysticfibrosis.com/cf_centers.cfm
</a>
She needs to stay away from that doctor. Even if an accredited center doesnt give a positive CF dx they could probably guide her to someone that will give the proper care.

Let us know what happens if you can!
 
S

Sakem

New member
A perfect example of doctors not knowing everything. Maybe u could print of statistics of races w/ CF, that shows the percentage of blacks w/ CF and then she could show it to her doc and ask him where those black people got CF from. If an inconclusive sweat test was done, have her ask doc for genetic test
 
S

Sakem

New member
A perfect example of doctors not knowing everything. Maybe u could print of statistics of races w/ CF, that shows the percentage of blacks w/ CF and then she could show it to her doc and ask him where those black people got CF from. If an inconclusive sweat test was done, have her ask doc for genetic test
 
S

Sakem

New member
A perfect example of doctors not knowing everything. Maybe u could print of statistics of races w/ CF, that shows the percentage of blacks w/ CF and then she could show it to her doc and ask him where those black people got CF from. If an inconclusive sweat test was done, have her ask doc for genetic test
 
S

Sakem

New member
A perfect example of doctors not knowing everything. Maybe u could print of statistics of races w/ CF, that shows the percentage of blacks w/ CF and then she could show it to her doc and ask him where those black people got CF from. If an inconclusive sweat test was done, have her ask doc for genetic test
 
S

Sakem

New member
A perfect example of doctors not knowing everything. Maybe u could print of statistics of races w/ CF, that shows the percentage of blacks w/ CF and then she could show it to her doc and ask him where those black people got CF from. If an inconclusive sweat test was done, have her ask doc for genetic test
 
S

Sakem

New member
A perfect example of doctors not knowing everything. Maybe u could print of statistics of races w/ CF, that shows the percentage of blacks w/ CF and then she could show it to her doc and ask him where those black people got CF from. If an inconclusive sweat test was done, have her ask doc for genetic test
 
N

NoExcuses

New member
I agree, that's rediculous.

So many people are mixed in race as well (and may not know it).

But really, that's not the point. Get this little girl an Ambry Full Panel genetic test!!!!!!
 
N

NoExcuses

New member
I agree, that's rediculous.

So many people are mixed in race as well (and may not know it).

But really, that's not the point. Get this little girl an Ambry Full Panel genetic test!!!!!!
 
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