It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr. Marie Egan at Yale. I think it is worth your while to come down to see her for a consult. You should be treating your children more aggresively. What 's the harm? I really wonder with your dr's motivation is? Why would you not want to arm a parent with how to do CPT? Is he looking to minimize the nubmer of CF patients he follows? My husband and I wonder if statistically speaking it would look better for the center to give a CRMS diagnosis than an CF diagnosis. Do yu know if CRMS cases are entered into the registry? I really wonder if late diagnoses are going to become like the ***** child of the cf world where no one wants them (like ceapcia cfers seeking transplant) since the statistical outcomes are so much poorer. It sounds like your kids cases are quite advanced. I'm sorry. Please do smething for them. Call Dr. Egan tommorrow. Or something.
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Our Dx changed
- Thread starter Lilliansmom
- Start date
I am so sorry for this. I can relate to the ever-changing diagnosis and it is worse, at times, than knowing and being able to settle in to something, even if that something isn't what anyone would want. I hope very much that you get the help you need and that the treatments are still available no matter what it is called. I have been told that certain lung damage results from a CT scan, etc. can qualify you for a vest. Even if it is not a smooth situation, I hold out hope for you that the treatments are available. Good luck. I will be thinking of you.
I am so sorry for this. I can relate to the ever-changing diagnosis and it is worse, at times, than knowing and being able to settle in to something, even if that something isn't what anyone would want. I hope very much that you get the help you need and that the treatments are still available no matter what it is called. I have been told that certain lung damage results from a CT scan, etc. can qualify you for a vest. Even if it is not a smooth situation, I hold out hope for you that the treatments are available. Good luck. I will be thinking of you.
I am so sorry for this. I can relate to the ever-changing diagnosis and it is worse, at times, than knowing and being able to settle in to something, even if that something isn't what anyone would want. I hope very much that you get the help you need and that the treatments are still available no matter what it is called. I have been told that certain lung damage results from a CT scan, etc. can qualify you for a vest. Even if it is not a smooth situation, I hold out hope for you that the treatments are available. Good luck. I will be thinking of you.
Lilliansmom
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr. Marie Egan at Yale. I think it is worth your while to come down to see her for a consult. You should be treating your children more aggresively. What 's the harm? I really wonder with your dr's motivation is? Why would you not want to arm a parent with how to do CPT? Is he looking to minimize the nubmer of CF patients he follows? My husband and I wonder if statistically speaking it would look better for the center to give a CRMS diagnosis than an CF diagnosis. Do yu know if CRMS cases are entered into the registry? I really wonder if late diagnoses are going to become like the ***** child of the cf world where no one wants them (like ceapcia cfers seeking transplant) since the statistical outcomes are so much poorer. It sounds like your kids cases are quite advanced. I'm sorry. Please do smething for them. Call Dr. Egan tommorrow. Or something.</end quote></div>
Thank you for her name. I will give her a call. To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. INsurance will not cover a vest, b/c they do not have a cf dx. He did say that if they culture something that will change everything. I just want to do whats best for them. DD, especially has fought so hard since she was a baby. I want to make sure that we do everything we can for her.
It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr. Marie Egan at Yale. I think it is worth your while to come down to see her for a consult. You should be treating your children more aggresively. What 's the harm? I really wonder with your dr's motivation is? Why would you not want to arm a parent with how to do CPT? Is he looking to minimize the nubmer of CF patients he follows? My husband and I wonder if statistically speaking it would look better for the center to give a CRMS diagnosis than an CF diagnosis. Do yu know if CRMS cases are entered into the registry? I really wonder if late diagnoses are going to become like the ***** child of the cf world where no one wants them (like ceapcia cfers seeking transplant) since the statistical outcomes are so much poorer. It sounds like your kids cases are quite advanced. I'm sorry. Please do smething for them. Call Dr. Egan tommorrow. Or something.</end quote></div>
Thank you for her name. I will give her a call. To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. INsurance will not cover a vest, b/c they do not have a cf dx. He did say that if they culture something that will change everything. I just want to do whats best for them. DD, especially has fought so hard since she was a baby. I want to make sure that we do everything we can for her.
Lilliansmom
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr. Marie Egan at Yale. I think it is worth your while to come down to see her for a consult. You should be treating your children more aggresively. What 's the harm? I really wonder with your dr's motivation is? Why would you not want to arm a parent with how to do CPT? Is he looking to minimize the nubmer of CF patients he follows? My husband and I wonder if statistically speaking it would look better for the center to give a CRMS diagnosis than an CF diagnosis. Do yu know if CRMS cases are entered into the registry? I really wonder if late diagnoses are going to become like the ***** child of the cf world where no one wants them (like ceapcia cfers seeking transplant) since the statistical outcomes are so much poorer. It sounds like your kids cases are quite advanced. I'm sorry. Please do smething for them. Call Dr. Egan tommorrow. Or something.</end quote>
Thank you for her name. I will give her a call. To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. INsurance will not cover a vest, b/c they do not have a cf dx. He did say that if they culture something that will change everything. I just want to do whats best for them. DD, especially has fought so hard since she was a baby. I want to make sure that we do everything we can for her.
It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr. Marie Egan at Yale. I think it is worth your while to come down to see her for a consult. You should be treating your children more aggresively. What 's the harm? I really wonder with your dr's motivation is? Why would you not want to arm a parent with how to do CPT? Is he looking to minimize the nubmer of CF patients he follows? My husband and I wonder if statistically speaking it would look better for the center to give a CRMS diagnosis than an CF diagnosis. Do yu know if CRMS cases are entered into the registry? I really wonder if late diagnoses are going to become like the ***** child of the cf world where no one wants them (like ceapcia cfers seeking transplant) since the statistical outcomes are so much poorer. It sounds like your kids cases are quite advanced. I'm sorry. Please do smething for them. Call Dr. Egan tommorrow. Or something.</end quote>
Thank you for her name. I will give her a call. To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. INsurance will not cover a vest, b/c they do not have a cf dx. He did say that if they culture something that will change everything. I just want to do whats best for them. DD, especially has fought so hard since she was a baby. I want to make sure that we do everything we can for her.
Lilliansmom
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
<br />
<br />It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr. Marie Egan at Yale. I think it is worth your while to come down to see her for a consult. You should be treating your children more aggresively. What 's the harm? I really wonder with your dr's motivation is? Why would you not want to arm a parent with how to do CPT? Is he looking to minimize the nubmer of CF patients he follows? My husband and I wonder if statistically speaking it would look better for the center to give a CRMS diagnosis than an CF diagnosis. Do yu know if CRMS cases are entered into the registry? I really wonder if late diagnoses are going to become like the ***** child of the cf world where no one wants them (like ceapcia cfers seeking transplant) since the statistical outcomes are so much poorer. It sounds like your kids cases are quite advanced. I'm sorry. Please do smething for them. Call Dr. Egan tommorrow. Or something.</end quote>
<br />
<br />Thank you for her name. I will give her a call. To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. INsurance will not cover a vest, b/c they do not have a cf dx. He did say that if they culture something that will change everything. I just want to do whats best for them. DD, especially has fought so hard since she was a baby. I want to make sure that we do everything we can for her.
<br />
<br />It's not about diagnosis it's about keeping our kids healthy. Has your children been with this care center through this previous winter with infections that turned to pneumonia? My son has S1235R and G551D. He sees Dr. Marie Egan at Yale. I think it is worth your while to come down to see her for a consult. You should be treating your children more aggresively. What 's the harm? I really wonder with your dr's motivation is? Why would you not want to arm a parent with how to do CPT? Is he looking to minimize the nubmer of CF patients he follows? My husband and I wonder if statistically speaking it would look better for the center to give a CRMS diagnosis than an CF diagnosis. Do yu know if CRMS cases are entered into the registry? I really wonder if late diagnoses are going to become like the ***** child of the cf world where no one wants them (like ceapcia cfers seeking transplant) since the statistical outcomes are so much poorer. It sounds like your kids cases are quite advanced. I'm sorry. Please do smething for them. Call Dr. Egan tommorrow. Or something.</end quote>
<br />
<br />Thank you for her name. I will give her a call. To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. INsurance will not cover a vest, b/c they do not have a cf dx. He did say that if they culture something that will change everything. I just want to do whats best for them. DD, especially has fought so hard since she was a baby. I want to make sure that we do everything we can for her.
I totally agree with the others here and am glad you are going to seek out a second opinion.
You mentioned that if they culture something, the diagnosis will change. Not all CF patients culture PA or other bugs from early ages. My 13 year old daughter still only cultures staph (not MRSA). And she has typical CF...DDF508.
I especially don't understand why they are not doing any airway clearance. Even IF it is determined that they do not have CF, they definitely have lung issues and Chest PT could be beneficially anyway.
Best of luck getting to the bottom of this.
You mentioned that if they culture something, the diagnosis will change. Not all CF patients culture PA or other bugs from early ages. My 13 year old daughter still only cultures staph (not MRSA). And she has typical CF...DDF508.
I especially don't understand why they are not doing any airway clearance. Even IF it is determined that they do not have CF, they definitely have lung issues and Chest PT could be beneficially anyway.
Best of luck getting to the bottom of this.
I totally agree with the others here and am glad you are going to seek out a second opinion.
You mentioned that if they culture something, the diagnosis will change. Not all CF patients culture PA or other bugs from early ages. My 13 year old daughter still only cultures staph (not MRSA). And she has typical CF...DDF508.
I especially don't understand why they are not doing any airway clearance. Even IF it is determined that they do not have CF, they definitely have lung issues and Chest PT could be beneficially anyway.
Best of luck getting to the bottom of this.
You mentioned that if they culture something, the diagnosis will change. Not all CF patients culture PA or other bugs from early ages. My 13 year old daughter still only cultures staph (not MRSA). And she has typical CF...DDF508.
I especially don't understand why they are not doing any airway clearance. Even IF it is determined that they do not have CF, they definitely have lung issues and Chest PT could be beneficially anyway.
Best of luck getting to the bottom of this.
I totally agree with the others here and am glad you are going to seek out a second opinion.
<br />
<br />You mentioned that if they culture something, the diagnosis will change. Not all CF patients culture PA or other bugs from early ages. My 13 year old daughter still only cultures staph (not MRSA). And she has typical CF...DDF508.
<br />
<br />I especially don't understand why they are not doing any airway clearance. Even IF it is determined that they do not have CF, they definitely have lung issues and Chest PT could be beneficially anyway.
<br />
<br />Best of luck getting to the bottom of this.
<br />
<br />
<br />
<br />You mentioned that if they culture something, the diagnosis will change. Not all CF patients culture PA or other bugs from early ages. My 13 year old daughter still only cultures staph (not MRSA). And she has typical CF...DDF508.
<br />
<br />I especially don't understand why they are not doing any airway clearance. Even IF it is determined that they do not have CF, they definitely have lung issues and Chest PT could be beneficially anyway.
<br />
<br />Best of luck getting to the bottom of this.
<br />
<br />
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilliansmom</b></i>
...To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. ....</end quote></div>
Wow, I've even had DH do a little CPT on me when I've gotten bronchitis in the past because I was choking on stuff!
I hope you are able to get some answers soon with the individual Lou Lou suggested.
...To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. ....</end quote></div>
Wow, I've even had DH do a little CPT on me when I've gotten bronchitis in the past because I was choking on stuff!
I hope you are able to get some answers soon with the individual Lou Lou suggested.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilliansmom</b></i>
...To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. ....</end quote>
Wow, I've even had DH do a little CPT on me when I've gotten bronchitis in the past because I was choking on stuff!
I hope you are able to get some answers soon with the individual Lou Lou suggested.
...To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. ....</end quote>
Wow, I've even had DH do a little CPT on me when I've gotten bronchitis in the past because I was choking on stuff!
I hope you are able to get some answers soon with the individual Lou Lou suggested.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilliansmom</b></i>
<br />...To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. ....</end quote>
<br />
<br />Wow, I've even had DH do a little CPT on me when I've gotten bronchitis in the past because I was choking on stuff!
<br />
<br />I hope you are able to get some answers soon with the individual Lou Lou suggested.
<br />...To answer your question, yes he has seen them through this past winter, and dx pnuemoia in both. He said he does not want them starting chest PT, b/c he believes that it will not make a difference in their case, since they do not have cf. ....</end quote>
<br />
<br />Wow, I've even had DH do a little CPT on me when I've gotten bronchitis in the past because I was choking on stuff!
<br />
<br />I hope you are able to get some answers soon with the individual Lou Lou suggested.
I am so sorry you are going through this! Our diagnosis has changed several times and all that does to me is add a whole lot of confusion and gives me a "false" sense of security. I am trying really hard to get "atypical cf" to become an "official" diagnosis to account for people like us. I am very fortunate in that my kids have never had a problem getting the meds and treatments they need despite not having an "official" CF diagnosis but I know there are lots of less fortunate people out there.
I will keep fighting for mom's like you! Hang in there and stay strong for your kiddos! Have you ever used a flutter or acapella with your kids since you can't get a vest? I would request one of those. My daughter uses them when she is junky at school and although nothing replaces the vest for airway clearance they can be a helpful alternative in the meantime..Just a thought.
I will keep fighting for mom's like you! Hang in there and stay strong for your kiddos! Have you ever used a flutter or acapella with your kids since you can't get a vest? I would request one of those. My daughter uses them when she is junky at school and although nothing replaces the vest for airway clearance they can be a helpful alternative in the meantime..Just a thought.
I am so sorry you are going through this! Our diagnosis has changed several times and all that does to me is add a whole lot of confusion and gives me a "false" sense of security. I am trying really hard to get "atypical cf" to become an "official" diagnosis to account for people like us. I am very fortunate in that my kids have never had a problem getting the meds and treatments they need despite not having an "official" CF diagnosis but I know there are lots of less fortunate people out there.
I will keep fighting for mom's like you! Hang in there and stay strong for your kiddos! Have you ever used a flutter or acapella with your kids since you can't get a vest? I would request one of those. My daughter uses them when she is junky at school and although nothing replaces the vest for airway clearance they can be a helpful alternative in the meantime..Just a thought.
I will keep fighting for mom's like you! Hang in there and stay strong for your kiddos! Have you ever used a flutter or acapella with your kids since you can't get a vest? I would request one of those. My daughter uses them when she is junky at school and although nothing replaces the vest for airway clearance they can be a helpful alternative in the meantime..Just a thought.
I am so sorry you are going through this! Our diagnosis has changed several times and all that does to me is add a whole lot of confusion and gives me a "false" sense of security. I am trying really hard to get "atypical cf" to become an "official" diagnosis to account for people like us. I am very fortunate in that my kids have never had a problem getting the meds and treatments they need despite not having an "official" CF diagnosis but I know there are lots of less fortunate people out there.
<br />
<br />I will keep fighting for mom's like you! Hang in there and stay strong for your kiddos! Have you ever used a flutter or acapella with your kids since you can't get a vest? I would request one of those. My daughter uses them when she is junky at school and although nothing replaces the vest for airway clearance they can be a helpful alternative in the meantime..Just a thought.
<br />
<br />
<br />I will keep fighting for mom's like you! Hang in there and stay strong for your kiddos! Have you ever used a flutter or acapella with your kids since you can't get a vest? I would request one of those. My daughter uses them when she is junky at school and although nothing replaces the vest for airway clearance they can be a helpful alternative in the meantime..Just a thought.
<br />
3LilFightersmom
New member
has this doctor not heard of unidentified mutations??? by the way those sweat test numbers are high borderline.. so, not knowing why he as counting them as complete negative. hello. I would find another clinic fast... you children sound symptomatic to me... and pi... with scarring in their lungs and no pt? definitely seek a second opinion...
3LilFightersmom
New member
has this doctor not heard of unidentified mutations??? by the way those sweat test numbers are high borderline.. so, not knowing why he as counting them as complete negative. hello. I would find another clinic fast... you children sound symptomatic to me... and pi... with scarring in their lungs and no pt? definitely seek a second opinion...
3LilFightersmom
New member
has this doctor not heard of unidentified mutations??? by the way those sweat test numbers are high borderline.. so, not knowing why he as counting them as complete negative. hello. I would find another clinic fast... you children sound symptomatic to me... and pi... with scarring in their lungs and no pt? definitely seek a second opinion...
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">
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">