CF Center Woes

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valigirl21

Guest
I'm very upset w/ my local CF center. I called today and explained my son's situation to them, and they told me he could not get seen there unless a)he was positively dx w/ CF, and b)he saw the specialist, Dr. Willey-Couran in her pulm clinic! For those who don't know Noah hasn't been positively dx w/ CF, but he's being treated as if he has. He has an elevated sweat chloride of 44, symptomology consistant w/ CF, but no known genetic mutations. I'm just really upset after going through the whole schpeel w/ the nurse, I got sent to the voicemail of Dr. Willey-couran's MA or whatever she is to get her permission to be seen at the clinic! This is supposed to be a good clinic, but I guess its only for ppl w/ typical CF! Thanks for letting me rant.
 
V

valigirl21

Guest
I'm very upset w/ my local CF center. I called today and explained my son's situation to them, and they told me he could not get seen there unless a)he was positively dx w/ CF, and b)he saw the specialist, Dr. Willey-Couran in her pulm clinic! For those who don't know Noah hasn't been positively dx w/ CF, but he's being treated as if he has. He has an elevated sweat chloride of 44, symptomology consistant w/ CF, but no known genetic mutations. I'm just really upset after going through the whole schpeel w/ the nurse, I got sent to the voicemail of Dr. Willey-couran's MA or whatever she is to get her permission to be seen at the clinic! This is supposed to be a good clinic, but I guess its only for ppl w/ typical CF! Thanks for letting me rant.
 
V

valigirl21

Guest
I'm very upset w/ my local CF center. I called today and explained my son's situation to them, and they told me he could not get seen there unless a)he was positively dx w/ CF, and b)he saw the specialist, Dr. Willey-Couran in her pulm clinic! For those who don't know Noah hasn't been positively dx w/ CF, but he's being treated as if he has. He has an elevated sweat chloride of 44, symptomology consistant w/ CF, but no known genetic mutations. I'm just really upset after going through the whole schpeel w/ the nurse, I got sent to the voicemail of Dr. Willey-couran's MA or whatever she is to get her permission to be seen at the clinic! This is supposed to be a good clinic, but I guess its only for ppl w/ typical CF! Thanks for letting me rant.
 
V

valigirl21

Guest
I'm very upset w/ my local CF center. I called today and explained my son's situation to them, and they told me he could not get seen there unless a)he was positively dx w/ CF, and b)he saw the specialist, Dr. Willey-Couran in her pulm clinic! For those who don't know Noah hasn't been positively dx w/ CF, but he's being treated as if he has. He has an elevated sweat chloride of 44, symptomology consistant w/ CF, but no known genetic mutations. I'm just really upset after going through the whole schpeel w/ the nurse, I got sent to the voicemail of Dr. Willey-couran's MA or whatever she is to get her permission to be seen at the clinic! This is supposed to be a good clinic, but I guess its only for ppl w/ typical CF! Thanks for letting me rant.
 
V

valigirl21

Guest
I'm very upset w/ my local CF center. I called today and explained my son's situation to them, and they told me he could not get seen there unless a)he was positively dx w/ CF, and b)he saw the specialist, Dr. Willey-Couran in her pulm clinic! For those who don't know Noah hasn't been positively dx w/ CF, but he's being treated as if he has. He has an elevated sweat chloride of 44, symptomology consistant w/ CF, but no known genetic mutations. I'm just really upset after going through the whole schpeel w/ the nurse, I got sent to the voicemail of Dr. Willey-couran's MA or whatever she is to get her permission to be seen at the clinic! This is supposed to be a good clinic, but I guess its only for ppl w/ typical CF! Thanks for letting me rant.
 
B

Buckeye

New member
That is weird. Has your son been officially diagnosed with Atypical CF or is that just a term that his previous doctor threw out there? The reason I'm asking is that my son has Atypical CF and he is followed by the cf center and they definately consider him to have CF. There is no question of him not being officially diagnosed, the official diagnosis is Atypical CF. They are just using the term Atypical to refer to the fact that they haven't found genetic mutations although he has had many very positive sweat tests, some lung issues, FTT and some GI issues. They even have a special clinic day for the Atypical CF kids and once the kiddos culture something they start going to one of the other clinic days. I find it confusing that so many centers have different definitions for Atypical CF!!!!!
 
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Buckeye

New member
That is weird. Has your son been officially diagnosed with Atypical CF or is that just a term that his previous doctor threw out there? The reason I'm asking is that my son has Atypical CF and he is followed by the cf center and they definately consider him to have CF. There is no question of him not being officially diagnosed, the official diagnosis is Atypical CF. They are just using the term Atypical to refer to the fact that they haven't found genetic mutations although he has had many very positive sweat tests, some lung issues, FTT and some GI issues. They even have a special clinic day for the Atypical CF kids and once the kiddos culture something they start going to one of the other clinic days. I find it confusing that so many centers have different definitions for Atypical CF!!!!!
 
B

Buckeye

New member
That is weird. Has your son been officially diagnosed with Atypical CF or is that just a term that his previous doctor threw out there? The reason I'm asking is that my son has Atypical CF and he is followed by the cf center and they definately consider him to have CF. There is no question of him not being officially diagnosed, the official diagnosis is Atypical CF. They are just using the term Atypical to refer to the fact that they haven't found genetic mutations although he has had many very positive sweat tests, some lung issues, FTT and some GI issues. They even have a special clinic day for the Atypical CF kids and once the kiddos culture something they start going to one of the other clinic days. I find it confusing that so many centers have different definitions for Atypical CF!!!!!
 
B

Buckeye

New member
That is weird. Has your son been officially diagnosed with Atypical CF or is that just a term that his previous doctor threw out there? The reason I'm asking is that my son has Atypical CF and he is followed by the cf center and they definately consider him to have CF. There is no question of him not being officially diagnosed, the official diagnosis is Atypical CF. They are just using the term Atypical to refer to the fact that they haven't found genetic mutations although he has had many very positive sweat tests, some lung issues, FTT and some GI issues. They even have a special clinic day for the Atypical CF kids and once the kiddos culture something they start going to one of the other clinic days. I find it confusing that so many centers have different definitions for Atypical CF!!!!!
 
B

Buckeye

New member
That is weird. Has your son been officially diagnosed with Atypical CF or is that just a term that his previous doctor threw out there? The reason I'm asking is that my son has Atypical CF and he is followed by the cf center and they definately consider him to have CF. There is no question of him not being officially diagnosed, the official diagnosis is Atypical CF. They are just using the term Atypical to refer to the fact that they haven't found genetic mutations although he has had many very positive sweat tests, some lung issues, FTT and some GI issues. They even have a special clinic day for the Atypical CF kids and once the kiddos culture something they start going to one of the other clinic days. I find it confusing that so many centers have different definitions for Atypical CF!!!!!
 
J

JazzysMom

New member
I would imagine once you speak with this doctor that you will get it. I do find it scary that you need a definite dx to be seen as a rule. IMHO that is what CF centers are for. OR at least mine is!

Is this the closest or only option?

HUGS
 
J

JazzysMom

New member
I would imagine once you speak with this doctor that you will get it. I do find it scary that you need a definite dx to be seen as a rule. IMHO that is what CF centers are for. OR at least mine is!

Is this the closest or only option?

HUGS
 
J

JazzysMom

New member
I would imagine once you speak with this doctor that you will get it. I do find it scary that you need a definite dx to be seen as a rule. IMHO that is what CF centers are for. OR at least mine is!

Is this the closest or only option?

HUGS
 
J

JazzysMom

New member
I would imagine once you speak with this doctor that you will get it. I do find it scary that you need a definite dx to be seen as a rule. IMHO that is what CF centers are for. OR at least mine is!

Is this the closest or only option?

HUGS
 
J

JazzysMom

New member
I would imagine once you speak with this doctor that you will get it. I do find it scary that you need a definite dx to be seen as a rule. IMHO that is what CF centers are for. OR at least mine is!
<br />
<br />Is this the closest or only option?
<br />
<br />HUGS
 
M

Mommafirst

Guest
Hi Valerie -- This is the WORST week to call the CF clinic. All the regulars are away at the CF conference. I always get the least knowledgable people and very little information. Call again next week and ask to speak with the CF nurse, instead of just a scheduler.

I'd be angry as well!!! But hopefully this is just ignorance on their part.
 
M

Mommafirst

Guest
Hi Valerie -- This is the WORST week to call the CF clinic. All the regulars are away at the CF conference. I always get the least knowledgable people and very little information. Call again next week and ask to speak with the CF nurse, instead of just a scheduler.

I'd be angry as well!!! But hopefully this is just ignorance on their part.
 
M

Mommafirst

Guest
Hi Valerie -- This is the WORST week to call the CF clinic. All the regulars are away at the CF conference. I always get the least knowledgable people and very little information. Call again next week and ask to speak with the CF nurse, instead of just a scheduler.

I'd be angry as well!!! But hopefully this is just ignorance on their part.
 
M

Mommafirst

Guest
Hi Valerie -- This is the WORST week to call the CF clinic. All the regulars are away at the CF conference. I always get the least knowledgable people and very little information. Call again next week and ask to speak with the CF nurse, instead of just a scheduler.

I'd be angry as well!!! But hopefully this is just ignorance on their part.
 
M

Mommafirst

Guest
Hi Valerie -- This is the WORST week to call the CF clinic. All the regulars are away at the CF conference. I always get the least knowledgable people and very little information. Call again next week and ask to speak with the CF nurse, instead of just a scheduler.
<br />
<br />I'd be angry as well!!! But hopefully this is just ignorance on their part.
 
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