Our Dx changed

H

hmw

New member
WHAT?! Even telling you cpt won't help tells me how misinformed he is. CPT is routinely prescribed for those with pneumonia and for those on vents, etc.. nothing to do with CF. This really, REALLY concerns me. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I echo others here- your children don't have 'negative' sweat tests by a long shot, they are borderline and pretty high at that. And as posted, your kids have more symptoms at their ages than *many* children. This whole new CRMS thing scares me... so many implications and as far as I can tell, NONE good.

Emily goes to CCMC in Hartford. They are excellent, as another consideration for a place to try. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
WHAT?! Even telling you cpt won't help tells me how misinformed he is. CPT is routinely prescribed for those with pneumonia and for those on vents, etc.. nothing to do with CF. This really, REALLY concerns me. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I echo others here- your children don't have 'negative' sweat tests by a long shot, they are borderline and pretty high at that. And as posted, your kids have more symptoms at their ages than *many* children. This whole new CRMS thing scares me... so many implications and as far as I can tell, NONE good.
<br />
<br />Emily goes to CCMC in Hartford. They are excellent, as another consideration for a place to try. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SarahProcter

Guest
At my center your kids would have a CF diagnosis.

My kid has a CF diagnosis with lower sweat tests and a vest and close follow-up at the CF clinic even though she's pancreatic sufficient and has never been sick and has never cultured anything!

We are on the west coast though so not convenient for a second opinion for you.
 
S

SarahProcter

Guest
At my center your kids would have a CF diagnosis.

My kid has a CF diagnosis with lower sweat tests and a vest and close follow-up at the CF clinic even though she's pancreatic sufficient and has never been sick and has never cultured anything!

We are on the west coast though so not convenient for a second opinion for you.
 
S

SarahProcter

Guest
At my center your kids would have a CF diagnosis.
<br />
<br />My kid has a CF diagnosis with lower sweat tests and a vest and close follow-up at the CF clinic even though she's pancreatic sufficient and has never been sick and has never cultured anything!
<br />
<br />We are on the west coast though so not convenient for a second opinion for you.
 
P

Printer

Active member
There are 3 CF Clinics in Boston and 1 in Worcester. Childrens Hospial, Massachusetts General Hospital and Tufts Medical Center in Boston. There is University of Massachusetts Hospital in Worcester.

I agree with eveone who has replied, run, don't walk, to another CF Center.

As you may guess, I am in the Boston Area also. If you want to send a private message, perhaps I can be of more assistance.

Bill
 
P

Printer

Active member
There are 3 CF Clinics in Boston and 1 in Worcester. Childrens Hospial, Massachusetts General Hospital and Tufts Medical Center in Boston. There is University of Massachusetts Hospital in Worcester.

I agree with eveone who has replied, run, don't walk, to another CF Center.

As you may guess, I am in the Boston Area also. If you want to send a private message, perhaps I can be of more assistance.

Bill
 
P

Printer

Active member
There are 3 CF Clinics in Boston and 1 in Worcester. Childrens Hospial, Massachusetts General Hospital and Tufts Medical Center in Boston. There is University of Massachusetts Hospital in Worcester.
<br />
<br />I agree with eveone who has replied, run, don't walk, to another CF Center.
<br />
<br />As you may guess, I am in the Boston Area also. If you want to send a private message, perhaps I can be of more assistance.
<br />
<br />Bill
 
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