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mommy2jack

New member
Hi - I dont mean to hijack this thread but I wasnt sure how to start a new one. My son Jack (5yo) has had lung concerns since birth. He has always made a lot of mucus and had a rattling in his chest. He was dx'd with asthma as a very young infant and lived on oripred and tons of neb treatments. He was sweat tested at 6 months old...negative. The next few years he always suffered with bouts of asthma - he has become barrel chested and more recently had Pnuemonia. We started to see a pulmo and she did a bronch. The bronch results showed severe inflamation with a high count of inflammatory cells, a massive amount of mucus that was so thick it was hard to get a sample out and tons of bacteria. She sent him for another sweat test and again it came out normal. She then sent him to an ENT. He took a look in his nose and said "I'm looking at a kid with CF" (nice huh?) He then sent us for a CT of the sinus. To my surprise it showed that Jack has Pansinusitis. He has NEVER had a sinus symptom!!!!! IM SHOCKED!!!!!! The doctor felt that he could make a dx of CF or Cilia Dyskenesia by the look of the bronch and CT????????? He is sending Jack for the Ambry Long Panel and another Bronch and nasal endoscopy on the 29th. Jack's ONLY symptoms are thick mucus in his lungs and this pansinusitis???? Wouldnt he be sick????? I am so confused??? Can a doctor really tell if a child has cf by the look of their sinus ct?
Thanks,
Amy
 
M

mommy2jack

New member
Hi - I dont mean to hijack this thread but I wasnt sure how to start a new one. My son Jack (5yo) has had lung concerns since birth. He has always made a lot of mucus and had a rattling in his chest. He was dx'd with asthma as a very young infant and lived on oripred and tons of neb treatments. He was sweat tested at 6 months old...negative. The next few years he always suffered with bouts of asthma - he has become barrel chested and more recently had Pnuemonia. We started to see a pulmo and she did a bronch. The bronch results showed severe inflamation with a high count of inflammatory cells, a massive amount of mucus that was so thick it was hard to get a sample out and tons of bacteria. She sent him for another sweat test and again it came out normal. She then sent him to an ENT. He took a look in his nose and said "I'm looking at a kid with CF" (nice huh?) He then sent us for a CT of the sinus. To my surprise it showed that Jack has Pansinusitis. He has NEVER had a sinus symptom!!!!! IM SHOCKED!!!!!! The doctor felt that he could make a dx of CF or Cilia Dyskenesia by the look of the bronch and CT????????? He is sending Jack for the Ambry Long Panel and another Bronch and nasal endoscopy on the 29th. Jack's ONLY symptoms are thick mucus in his lungs and this pansinusitis???? Wouldnt he be sick????? I am so confused??? Can a doctor really tell if a child has cf by the look of their sinus ct?
Thanks,
Amy
 
M

mommy2jack

New member
Hi - I dont mean to hijack this thread but I wasnt sure how to start a new one. My son Jack (5yo) has had lung concerns since birth. He has always made a lot of mucus and had a rattling in his chest. He was dx'd with asthma as a very young infant and lived on oripred and tons of neb treatments. He was sweat tested at 6 months old...negative. The next few years he always suffered with bouts of asthma - he has become barrel chested and more recently had Pnuemonia. We started to see a pulmo and she did a bronch. The bronch results showed severe inflamation with a high count of inflammatory cells, a massive amount of mucus that was so thick it was hard to get a sample out and tons of bacteria. She sent him for another sweat test and again it came out normal. She then sent him to an ENT. He took a look in his nose and said "I'm looking at a kid with CF" (nice huh?) He then sent us for a CT of the sinus. To my surprise it showed that Jack has Pansinusitis. He has NEVER had a sinus symptom!!!!! IM SHOCKED!!!!!! The doctor felt that he could make a dx of CF or Cilia Dyskenesia by the look of the bronch and CT????????? He is sending Jack for the Ambry Long Panel and another Bronch and nasal endoscopy on the 29th. Jack's ONLY symptoms are thick mucus in his lungs and this pansinusitis???? Wouldnt he be sick????? I am so confused??? Can a doctor really tell if a child has cf by the look of their sinus ct?
Thanks,
Amy
 
M

mommy2jack

New member
Hi - I dont mean to hijack this thread but I wasnt sure how to start a new one. My son Jack (5yo) has had lung concerns since birth. He has always made a lot of mucus and had a rattling in his chest. He was dx'd with asthma as a very young infant and lived on oripred and tons of neb treatments. He was sweat tested at 6 months old...negative. The next few years he always suffered with bouts of asthma - he has become barrel chested and more recently had Pnuemonia. We started to see a pulmo and she did a bronch. The bronch results showed severe inflamation with a high count of inflammatory cells, a massive amount of mucus that was so thick it was hard to get a sample out and tons of bacteria. She sent him for another sweat test and again it came out normal. She then sent him to an ENT. He took a look in his nose and said "I'm looking at a kid with CF" (nice huh?) He then sent us for a CT of the sinus. To my surprise it showed that Jack has Pansinusitis. He has NEVER had a sinus symptom!!!!! IM SHOCKED!!!!!! The doctor felt that he could make a dx of CF or Cilia Dyskenesia by the look of the bronch and CT????????? He is sending Jack for the Ambry Long Panel and another Bronch and nasal endoscopy on the 29th. Jack's ONLY symptoms are thick mucus in his lungs and this pansinusitis???? Wouldnt he be sick????? I am so confused??? Can a doctor really tell if a child has cf by the look of their sinus ct?
Thanks,
Amy
 
M

mommy2jack

New member
Hi - I dont mean to hijack this thread but I wasnt sure how to start a new one. My son Jack (5yo) has had lung concerns since birth. He has always made a lot of mucus and had a rattling in his chest. He was dx'd with asthma as a very young infant and lived on oripred and tons of neb treatments. He was sweat tested at 6 months old...negative. The next few years he always suffered with bouts of asthma - he has become barrel chested and more recently had Pnuemonia. We started to see a pulmo and she did a bronch. The bronch results showed severe inflamation with a high count of inflammatory cells, a massive amount of mucus that was so thick it was hard to get a sample out and tons of bacteria. She sent him for another sweat test and again it came out normal. She then sent him to an ENT. He took a look in his nose and said "I'm looking at a kid with CF" (nice huh?) He then sent us for a CT of the sinus. To my surprise it showed that Jack has Pansinusitis. He has NEVER had a sinus symptom!!!!! IM SHOCKED!!!!!! The doctor felt that he could make a dx of CF or Cilia Dyskenesia by the look of the bronch and CT????????? He is sending Jack for the Ambry Long Panel and another Bronch and nasal endoscopy on the 29th. Jack's ONLY symptoms are thick mucus in his lungs and this pansinusitis???? Wouldnt he be sick????? I am so confused??? Can a doctor really tell if a child has cf by the look of their sinus ct?
<br />Thanks,
<br />Amy
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eye2797</b></i>
can someone with CF have it but not real strong
</end quote></div>

A little over 7 years ago, I was diagnosed with "atypical CF" based on medical history and a sweat chloride of 41. They tested both sons and I told them which had it and which didn't before they ran the tests. He also has a sweat chloride of 41. Having a diagnosis of "atypical CF" has been life-changing in the most wonderfully positive way. We were prescribed digestive enzymes and I quit feeling like I was "starving" all the time, began being able to eat better, my blood sugar stabilized some for the first time in my life (I had always been severely hypoglycemic, which is a miserable thing to live with). My sons put on 20 pounds and quit acting so anti-social and scared of his own shadow. We have made a lot of dietary and lifestyle changes since then and gotten off the enzymes and drugs. (Well, I still take one medication but he takes none.)

YES, you absolutely can have a form of CF that is "mild". I believe the diagnosis of "atypical" or "variant" CF has been around about 11 or 12 years. Yes, "mild" CF is still a serious condition. Having the right diagnosis can be a wonderful thing. Solid information is waaaay better than living in doubt and trying to guess how to cope.

Good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eye2797</b></i>
can someone with CF have it but not real strong
</end quote></div>

A little over 7 years ago, I was diagnosed with "atypical CF" based on medical history and a sweat chloride of 41. They tested both sons and I told them which had it and which didn't before they ran the tests. He also has a sweat chloride of 41. Having a diagnosis of "atypical CF" has been life-changing in the most wonderfully positive way. We were prescribed digestive enzymes and I quit feeling like I was "starving" all the time, began being able to eat better, my blood sugar stabilized some for the first time in my life (I had always been severely hypoglycemic, which is a miserable thing to live with). My sons put on 20 pounds and quit acting so anti-social and scared of his own shadow. We have made a lot of dietary and lifestyle changes since then and gotten off the enzymes and drugs. (Well, I still take one medication but he takes none.)

YES, you absolutely can have a form of CF that is "mild". I believe the diagnosis of "atypical" or "variant" CF has been around about 11 or 12 years. Yes, "mild" CF is still a serious condition. Having the right diagnosis can be a wonderful thing. Solid information is waaaay better than living in doubt and trying to guess how to cope.

Good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eye2797</b></i>
can someone with CF have it but not real strong
</end quote></div>

A little over 7 years ago, I was diagnosed with "atypical CF" based on medical history and a sweat chloride of 41. They tested both sons and I told them which had it and which didn't before they ran the tests. He also has a sweat chloride of 41. Having a diagnosis of "atypical CF" has been life-changing in the most wonderfully positive way. We were prescribed digestive enzymes and I quit feeling like I was "starving" all the time, began being able to eat better, my blood sugar stabilized some for the first time in my life (I had always been severely hypoglycemic, which is a miserable thing to live with). My sons put on 20 pounds and quit acting so anti-social and scared of his own shadow. We have made a lot of dietary and lifestyle changes since then and gotten off the enzymes and drugs. (Well, I still take one medication but he takes none.)

YES, you absolutely can have a form of CF that is "mild". I believe the diagnosis of "atypical" or "variant" CF has been around about 11 or 12 years. Yes, "mild" CF is still a serious condition. Having the right diagnosis can be a wonderful thing. Solid information is waaaay better than living in doubt and trying to guess how to cope.

Good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eye2797</b></i>
can someone with CF have it but not real strong
</end quote>

A little over 7 years ago, I was diagnosed with "atypical CF" based on medical history and a sweat chloride of 41. They tested both sons and I told them which had it and which didn't before they ran the tests. He also has a sweat chloride of 41. Having a diagnosis of "atypical CF" has been life-changing in the most wonderfully positive way. We were prescribed digestive enzymes and I quit feeling like I was "starving" all the time, began being able to eat better, my blood sugar stabilized some for the first time in my life (I had always been severely hypoglycemic, which is a miserable thing to live with). My sons put on 20 pounds and quit acting so anti-social and scared of his own shadow. We have made a lot of dietary and lifestyle changes since then and gotten off the enzymes and drugs. (Well, I still take one medication but he takes none.)

YES, you absolutely can have a form of CF that is "mild". I believe the diagnosis of "atypical" or "variant" CF has been around about 11 or 12 years. Yes, "mild" CF is still a serious condition. Having the right diagnosis can be a wonderful thing. Solid information is waaaay better than living in doubt and trying to guess how to cope.

Good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eye2797</b></i>
<br />can someone with CF have it but not real strong
<br /></end quote>
<br />
<br />A little over 7 years ago, I was diagnosed with "atypical CF" based on medical history and a sweat chloride of 41. They tested both sons and I told them which had it and which didn't before they ran the tests. He also has a sweat chloride of 41. Having a diagnosis of "atypical CF" has been life-changing in the most wonderfully positive way. We were prescribed digestive enzymes and I quit feeling like I was "starving" all the time, began being able to eat better, my blood sugar stabilized some for the first time in my life (I had always been severely hypoglycemic, which is a miserable thing to live with). My sons put on 20 pounds and quit acting so anti-social and scared of his own shadow. We have made a lot of dietary and lifestyle changes since then and gotten off the enzymes and drugs. (Well, I still take one medication but he takes none.)
<br />
<br />YES, you absolutely can have a form of CF that is "mild". I believe the diagnosis of "atypical" or "variant" CF has been around about 11 or 12 years. Yes, "mild" CF is still a serious condition. Having the right diagnosis can be a wonderful thing. Solid information is waaaay better than living in doubt and trying to guess how to cope.
<br />
<br />Good luck with this.
 
A

Alyssa

New member
I think you should repost this in a new post - since the old one was dated exactly the same date only one year ago and I'm sure it is confusing... people will not see your post and will be replying to the original poster, not you.

How to create your own post:
click on the Category of "Newly diagnosed"
look up near the top of the page - do you see the row that start with Home Forums Blogs Videos etc.
look at the blue strip just below that, you will see new topic then profile, then help etc.
click on the "new topic" from there you can decide what title and subject you want to use, then in the body you can paste the same information you already have typed out if you don't want to type it all again (highlight with the left mouse button and choose copy - then go to your new post and right click and choose paste)

To answer your questions about what is happening with your child and your doctor - I don't know if a doctor could give a 100% diagnosis with just the CT scan, but he is probably just speaking from experience for now - you will want to proceed with the genetic testing - the good news is that he has ordered that. Many people struggle with getting a doctor to order the correct tests.

The other insight I have to offer is that yes, many people with CF are not "that sick"

If you have time, check out my blog for details on my kids - other people here have many stories of sinus issues only etc too. For my kids we have only seen the mucus in the lungs, which has gotten quite a bit easier to manage with the correct diagnosis and treatments.

Best wishes and keep in touch - try and get your own post going, also you might get more replies if you post it in both the newly diagnosed section and the family section.
 
A

Alyssa

New member
I think you should repost this in a new post - since the old one was dated exactly the same date only one year ago and I'm sure it is confusing... people will not see your post and will be replying to the original poster, not you.

How to create your own post:
click on the Category of "Newly diagnosed"
look up near the top of the page - do you see the row that start with Home Forums Blogs Videos etc.
look at the blue strip just below that, you will see new topic then profile, then help etc.
click on the "new topic" from there you can decide what title and subject you want to use, then in the body you can paste the same information you already have typed out if you don't want to type it all again (highlight with the left mouse button and choose copy - then go to your new post and right click and choose paste)

To answer your questions about what is happening with your child and your doctor - I don't know if a doctor could give a 100% diagnosis with just the CT scan, but he is probably just speaking from experience for now - you will want to proceed with the genetic testing - the good news is that he has ordered that. Many people struggle with getting a doctor to order the correct tests.

The other insight I have to offer is that yes, many people with CF are not "that sick"

If you have time, check out my blog for details on my kids - other people here have many stories of sinus issues only etc too. For my kids we have only seen the mucus in the lungs, which has gotten quite a bit easier to manage with the correct diagnosis and treatments.

Best wishes and keep in touch - try and get your own post going, also you might get more replies if you post it in both the newly diagnosed section and the family section.
 
A

Alyssa

New member
I think you should repost this in a new post - since the old one was dated exactly the same date only one year ago and I'm sure it is confusing... people will not see your post and will be replying to the original poster, not you.

How to create your own post:
click on the Category of "Newly diagnosed"
look up near the top of the page - do you see the row that start with Home Forums Blogs Videos etc.
look at the blue strip just below that, you will see new topic then profile, then help etc.
click on the "new topic" from there you can decide what title and subject you want to use, then in the body you can paste the same information you already have typed out if you don't want to type it all again (highlight with the left mouse button and choose copy - then go to your new post and right click and choose paste)

To answer your questions about what is happening with your child and your doctor - I don't know if a doctor could give a 100% diagnosis with just the CT scan, but he is probably just speaking from experience for now - you will want to proceed with the genetic testing - the good news is that he has ordered that. Many people struggle with getting a doctor to order the correct tests.

The other insight I have to offer is that yes, many people with CF are not "that sick"

If you have time, check out my blog for details on my kids - other people here have many stories of sinus issues only etc too. For my kids we have only seen the mucus in the lungs, which has gotten quite a bit easier to manage with the correct diagnosis and treatments.

Best wishes and keep in touch - try and get your own post going, also you might get more replies if you post it in both the newly diagnosed section and the family section.
 
A

Alyssa

New member
I think you should repost this in a new post - since the old one was dated exactly the same date only one year ago and I'm sure it is confusing... people will not see your post and will be replying to the original poster, not you.

How to create your own post:
click on the Category of "Newly diagnosed"
look up near the top of the page - do you see the row that start with Home Forums Blogs Videos etc.
look at the blue strip just below that, you will see new topic then profile, then help etc.
click on the "new topic" from there you can decide what title and subject you want to use, then in the body you can paste the same information you already have typed out if you don't want to type it all again (highlight with the left mouse button and choose copy - then go to your new post and right click and choose paste)

To answer your questions about what is happening with your child and your doctor - I don't know if a doctor could give a 100% diagnosis with just the CT scan, but he is probably just speaking from experience for now - you will want to proceed with the genetic testing - the good news is that he has ordered that. Many people struggle with getting a doctor to order the correct tests.

The other insight I have to offer is that yes, many people with CF are not "that sick"

If you have time, check out my blog for details on my kids - other people here have many stories of sinus issues only etc too. For my kids we have only seen the mucus in the lungs, which has gotten quite a bit easier to manage with the correct diagnosis and treatments.

Best wishes and keep in touch - try and get your own post going, also you might get more replies if you post it in both the newly diagnosed section and the family section.
 
A

Alyssa

New member
I think you should repost this in a new post - since the old one was dated exactly the same date only one year ago and I'm sure it is confusing... people will not see your post and will be replying to the original poster, not you.
<br />
<br />How to create your own post:
<br />click on the Category of "Newly diagnosed"
<br />look up near the top of the page - do you see the row that start with Home Forums Blogs Videos etc.
<br />look at the blue strip just below that, you will see new topic then profile, then help etc.
<br />click on the "new topic" from there you can decide what title and subject you want to use, then in the body you can paste the same information you already have typed out if you don't want to type it all again (highlight with the left mouse button and choose copy - then go to your new post and right click and choose paste)
<br />
<br />To answer your questions about what is happening with your child and your doctor - I don't know if a doctor could give a 100% diagnosis with just the CT scan, but he is probably just speaking from experience for now - you will want to proceed with the genetic testing - the good news is that he has ordered that. Many people struggle with getting a doctor to order the correct tests.
<br />
<br />The other insight I have to offer is that yes, many people with CF are not "that sick"
<br />
<br />If you have time, check out my blog for details on my kids - other people here have many stories of sinus issues only etc too. For my kids we have only seen the mucus in the lungs, which has gotten quite a bit easier to manage with the correct diagnosis and treatments.
<br />
<br />Best wishes and keep in touch - try and get your own post going, also you might get more replies if you post it in both the newly diagnosed section and the family section.
 
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