I vented in a letter to the editor.

S

shealeighsmom

New member
I posted this last week <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=53586&enterthread=y
">http://www.cysticfibrosis.com/...d=53586&enterthread=y
</a>
And afterwards I vented my frustrations with our long wait for diagnosis in a letter to the editor of our local paper.

They just called and asked if I would be willing to do a story with them. It is a current topic with some new proposed cutbacks and the long standing frustrations with the wait times in this province.
We saw our doctor yesterday and he said he can't order a genetic test and to ask the gastro ped. I told him how frustrated we are and had a good long vent, his response was "frustrating, isn't it"
Yes it is.
 
S

shealeighsmom

New member
I posted this last week <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=53586&enterthread=y
">http://www.cysticfibrosis.com/...d=53586&enterthread=y
</a>
And afterwards I vented my frustrations with our long wait for diagnosis in a letter to the editor of our local paper.

They just called and asked if I would be willing to do a story with them. It is a current topic with some new proposed cutbacks and the long standing frustrations with the wait times in this province.
We saw our doctor yesterday and he said he can't order a genetic test and to ask the gastro ped. I told him how frustrated we are and had a good long vent, his response was "frustrating, isn't it"
Yes it is.
 
S

shealeighsmom

New member
I posted this last week <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=53586&enterthread=y
">http://www.cysticfibrosis.com/...d=53586&enterthread=y
</a>
And afterwards I vented my frustrations with our long wait for diagnosis in a letter to the editor of our local paper.

They just called and asked if I would be willing to do a story with them. It is a current topic with some new proposed cutbacks and the long standing frustrations with the wait times in this province.
We saw our doctor yesterday and he said he can't order a genetic test and to ask the gastro ped. I told him how frustrated we are and had a good long vent, his response was "frustrating, isn't it"
Yes it is.
 
S

shealeighsmom

New member
I posted this last week <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=53586&enterthread=y
">http://www.cysticfibrosis.com/...d=53586&enterthread=y
</a>
And afterwards I vented my frustrations with our long wait for diagnosis in a letter to the editor of our local paper.

They just called and asked if I would be willing to do a story with them. It is a current topic with some new proposed cutbacks and the long standing frustrations with the wait times in this province.
We saw our doctor yesterday and he said he can't order a genetic test and to ask the gastro ped. I told him how frustrated we are and had a good long vent, his response was "frustrating, isn't it"
Yes it is.
 
S

shealeighsmom

New member
I posted this last week <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=53586&enterthread=y
">http://www.cysticfibrosis.com/...d=53586&enterthread=y
</a><br />
<br />And afterwards I vented my frustrations with our long wait for diagnosis in a letter to the editor of our local paper.
<br />
<br />They just called and asked if I would be willing to do a story with them. It is a current topic with some new proposed cutbacks and the long standing frustrations with the wait times in this province.
<br />We saw our doctor yesterday and he said he can't order a genetic test and to ask the gastro ped. I told him how frustrated we are and had a good long vent, his response was "frustrating, isn't it"
<br /> Yes it is.
<br />
 
B

BaylorCrew07

New member
UGH, that's frustrating!! Sorry they can't order a test for you; did he say why he can't do it? Crazy people. Maybe the publicity from your local paper will motivate the docs to get their act together.

I'm sorry for all the stress and frustration they are putting you through <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
B

BaylorCrew07

New member
UGH, that's frustrating!! Sorry they can't order a test for you; did he say why he can't do it? Crazy people. Maybe the publicity from your local paper will motivate the docs to get their act together.

I'm sorry for all the stress and frustration they are putting you through <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
B

BaylorCrew07

New member
UGH, that's frustrating!! Sorry they can't order a test for you; did he say why he can't do it? Crazy people. Maybe the publicity from your local paper will motivate the docs to get their act together.

I'm sorry for all the stress and frustration they are putting you through <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
B

BaylorCrew07

New member
UGH, that's frustrating!! Sorry they can't order a test for you; did he say why he can't do it? Crazy people. Maybe the publicity from your local paper will motivate the docs to get their act together.

I'm sorry for all the stress and frustration they are putting you through <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
B

BaylorCrew07

New member
UGH, that's frustrating!! Sorry they can't order a test for you; did he say why he can't do it? Crazy people. Maybe the publicity from your local paper will motivate the docs to get their act together.
<br />
<br />I'm sorry for all the stress and frustration they are putting you through <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
M

MaksNana

New member
Dear Robin,
I pray your little one does not have CF. I can not tell you how difficult it was to get Makailyn diagnoised. She had probably 10 sweat test at accredited CF clinics. She had 3 positives, and the rest didn't collect enough sweat. It was nuts........ Then they found one gene...... And finally went through Ambry's lab and found the 2nd gene.......... That baby had fallen down to 1%on the charts around age 18months of age , which is very common in CF kids..........She had pnumonia several times when she was a baby and severe wheezing.
Have they done any cultures on her???? Go to another CF center if you have to.
It is vital to get the ambry genetic testing. Have a chest xray, cultures are a big key .... There are people on here that have never found a second gene. I would never count on a sweat test,,,,,,never ! There are many other ways to get diagnoised.
Like I said, I pray your child does not have CF, but I also pray that if your child does that she get's the treatments and you start the process of learning all about CF.........And if a CF doctor told you they can't order a genetic test they are full of crap !!!!!!!!!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">

Many blessings,,,,,,,,,,,Karla
 
M

MaksNana

New member
Dear Robin,
I pray your little one does not have CF. I can not tell you how difficult it was to get Makailyn diagnoised. She had probably 10 sweat test at accredited CF clinics. She had 3 positives, and the rest didn't collect enough sweat. It was nuts........ Then they found one gene...... And finally went through Ambry's lab and found the 2nd gene.......... That baby had fallen down to 1%on the charts around age 18months of age , which is very common in CF kids..........She had pnumonia several times when she was a baby and severe wheezing.
Have they done any cultures on her???? Go to another CF center if you have to.
It is vital to get the ambry genetic testing. Have a chest xray, cultures are a big key .... There are people on here that have never found a second gene. I would never count on a sweat test,,,,,,never ! There are many other ways to get diagnoised.
Like I said, I pray your child does not have CF, but I also pray that if your child does that she get's the treatments and you start the process of learning all about CF.........And if a CF doctor told you they can't order a genetic test they are full of crap !!!!!!!!!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">

Many blessings,,,,,,,,,,,Karla
 
M

MaksNana

New member
Dear Robin,
I pray your little one does not have CF. I can not tell you how difficult it was to get Makailyn diagnoised. She had probably 10 sweat test at accredited CF clinics. She had 3 positives, and the rest didn't collect enough sweat. It was nuts........ Then they found one gene...... And finally went through Ambry's lab and found the 2nd gene.......... That baby had fallen down to 1%on the charts around age 18months of age , which is very common in CF kids..........She had pnumonia several times when she was a baby and severe wheezing.
Have they done any cultures on her???? Go to another CF center if you have to.
It is vital to get the ambry genetic testing. Have a chest xray, cultures are a big key .... There are people on here that have never found a second gene. I would never count on a sweat test,,,,,,never ! There are many other ways to get diagnoised.
Like I said, I pray your child does not have CF, but I also pray that if your child does that she get's the treatments and you start the process of learning all about CF.........And if a CF doctor told you they can't order a genetic test they are full of crap !!!!!!!!!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">

Many blessings,,,,,,,,,,,Karla
 
M

MaksNana

New member
Dear Robin,
I pray your little one does not have CF. I can not tell you how difficult it was to get Makailyn diagnoised. She had probably 10 sweat test at accredited CF clinics. She had 3 positives, and the rest didn't collect enough sweat. It was nuts........ Then they found one gene...... And finally went through Ambry's lab and found the 2nd gene.......... That baby had fallen down to 1%on the charts around age 18months of age , which is very common in CF kids..........She had pnumonia several times when she was a baby and severe wheezing.
Have they done any cultures on her???? Go to another CF center if you have to.
It is vital to get the ambry genetic testing. Have a chest xray, cultures are a big key .... There are people on here that have never found a second gene. I would never count on a sweat test,,,,,,never ! There are many other ways to get diagnoised.
Like I said, I pray your child does not have CF, but I also pray that if your child does that she get's the treatments and you start the process of learning all about CF.........And if a CF doctor told you they can't order a genetic test they are full of crap !!!!!!!!!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">

Many blessings,,,,,,,,,,,Karla
 
M

MaksNana

New member
Dear Robin,
<br />I pray your little one does not have CF. I can not tell you how difficult it was to get Makailyn diagnoised. She had probably 10 sweat test at accredited CF clinics. She had 3 positives, and the rest didn't collect enough sweat. It was nuts........ Then they found one gene...... And finally went through Ambry's lab and found the 2nd gene.......... That baby had fallen down to 1%on the charts around age 18months of age , which is very common in CF kids..........She had pnumonia several times when she was a baby and severe wheezing.
<br />Have they done any cultures on her???? Go to another CF center if you have to.
<br />It is vital to get the ambry genetic testing. Have a chest xray, cultures are a big key .... There are people on here that have never found a second gene. I would never count on a sweat test,,,,,,never ! There are many other ways to get diagnoised.
<br />Like I said, I pray your child does not have CF, but I also pray that if your child does that she get's the treatments and you start the process of learning all about CF.........And if a CF doctor told you they can't order a genetic test they are full of crap !!!!!!!!!!!<img src="i/expressions/face-icon-small-mad.gif" border="0">
<br />
<br />Many blessings,,,,,,,,,,,Karla
<br />
<br />
<br />
 
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