Chronic sinusitis--could it possibly be CF?

J

jerse0440

New member
My eight year old son has chronic sinus infections seen on CAT scan despite sinus surgery, negative allergy testing and negative immune system testing (immune subclasses). He occasionally has a moist cough with an acute sinus infection but has never been diagnosed with any respiratory infection. He is thin and has a poor appetite and is lactose intolerant. He has had chronic ear infections which is managed with tubes. His E.N.T. is treating him for reflux though no testing has been done for this and he doesn't really have any reflux symptoms. The doctor says that he could be refluxing into his sinus' causing the chronic infection, but he doesn't put much weight in this theory. Otherwise, the doctor says he has no where else to turn for a reason for these sinus issues. A friend mentioned CF.
Has anyone ever heard of a child's chronic sinus infections being caused by CF when they have no significant respiratory problems? I found some research from Johns Hopkins stating a higher incidence of sinus disease in those that carry a single CF gene. I am looking for any insight if this has been the case for any other children with similar situations. Otherwise, is it possible for some type of atypical CF to present this way? Any insight from your experience will be greatly appreciated. I may be completely wrong by looking this direction however the research from Johns Hopkins has me very curious. Thank you for any information that you are able to provide, I am eager to find any hope for relief for my child.
Jerse0440
 
J

jerse0440

New member
My eight year old son has chronic sinus infections seen on CAT scan despite sinus surgery, negative allergy testing and negative immune system testing (immune subclasses). He occasionally has a moist cough with an acute sinus infection but has never been diagnosed with any respiratory infection. He is thin and has a poor appetite and is lactose intolerant. He has had chronic ear infections which is managed with tubes. His E.N.T. is treating him for reflux though no testing has been done for this and he doesn't really have any reflux symptoms. The doctor says that he could be refluxing into his sinus' causing the chronic infection, but he doesn't put much weight in this theory. Otherwise, the doctor says he has no where else to turn for a reason for these sinus issues. A friend mentioned CF.
Has anyone ever heard of a child's chronic sinus infections being caused by CF when they have no significant respiratory problems? I found some research from Johns Hopkins stating a higher incidence of sinus disease in those that carry a single CF gene. I am looking for any insight if this has been the case for any other children with similar situations. Otherwise, is it possible for some type of atypical CF to present this way? Any insight from your experience will be greatly appreciated. I may be completely wrong by looking this direction however the research from Johns Hopkins has me very curious. Thank you for any information that you are able to provide, I am eager to find any hope for relief for my child.
Jerse0440
 
J

jerse0440

New member
My eight year old son has chronic sinus infections seen on CAT scan despite sinus surgery, negative allergy testing and negative immune system testing (immune subclasses). He occasionally has a moist cough with an acute sinus infection but has never been diagnosed with any respiratory infection. He is thin and has a poor appetite and is lactose intolerant. He has had chronic ear infections which is managed with tubes. His E.N.T. is treating him for reflux though no testing has been done for this and he doesn't really have any reflux symptoms. The doctor says that he could be refluxing into his sinus' causing the chronic infection, but he doesn't put much weight in this theory. Otherwise, the doctor says he has no where else to turn for a reason for these sinus issues. A friend mentioned CF.
Has anyone ever heard of a child's chronic sinus infections being caused by CF when they have no significant respiratory problems? I found some research from Johns Hopkins stating a higher incidence of sinus disease in those that carry a single CF gene. I am looking for any insight if this has been the case for any other children with similar situations. Otherwise, is it possible for some type of atypical CF to present this way? Any insight from your experience will be greatly appreciated. I may be completely wrong by looking this direction however the research from Johns Hopkins has me very curious. Thank you for any information that you are able to provide, I am eager to find any hope for relief for my child.
Jerse0440
 
J

jerse0440

New member
My eight year old son has chronic sinus infections seen on CAT scan despite sinus surgery, negative allergy testing and negative immune system testing (immune subclasses). He occasionally has a moist cough with an acute sinus infection but has never been diagnosed with any respiratory infection. He is thin and has a poor appetite and is lactose intolerant. He has had chronic ear infections which is managed with tubes. His E.N.T. is treating him for reflux though no testing has been done for this and he doesn't really have any reflux symptoms. The doctor says that he could be refluxing into his sinus' causing the chronic infection, but he doesn't put much weight in this theory. Otherwise, the doctor says he has no where else to turn for a reason for these sinus issues. A friend mentioned CF.
Has anyone ever heard of a child's chronic sinus infections being caused by CF when they have no significant respiratory problems? I found some research from Johns Hopkins stating a higher incidence of sinus disease in those that carry a single CF gene. I am looking for any insight if this has been the case for any other children with similar situations. Otherwise, is it possible for some type of atypical CF to present this way? Any insight from your experience will be greatly appreciated. I may be completely wrong by looking this direction however the research from Johns Hopkins has me very curious. Thank you for any information that you are able to provide, I am eager to find any hope for relief for my child.
Jerse0440
 
J

jerse0440

New member
My eight year old son has chronic sinus infections seen on CAT scan despite sinus surgery, negative allergy testing and negative immune system testing (immune subclasses). He occasionally has a moist cough with an acute sinus infection but has never been diagnosed with any respiratory infection. He is thin and has a poor appetite and is lactose intolerant. He has had chronic ear infections which is managed with tubes. His E.N.T. is treating him for reflux though no testing has been done for this and he doesn't really have any reflux symptoms. The doctor says that he could be refluxing into his sinus' causing the chronic infection, but he doesn't put much weight in this theory. Otherwise, the doctor says he has no where else to turn for a reason for these sinus issues. A friend mentioned CF.
<br /> Has anyone ever heard of a child's chronic sinus infections being caused by CF when they have no significant respiratory problems? I found some research from Johns Hopkins stating a higher incidence of sinus disease in those that carry a single CF gene. I am looking for any insight if this has been the case for any other children with similar situations. Otherwise, is it possible for some type of atypical CF to present this way? Any insight from your experience will be greatly appreciated. I may be completely wrong by looking this direction however the research from Johns Hopkins has me very curious. Thank you for any information that you are able to provide, I am eager to find any hope for relief for my child.
<br />Jerse0440
 
A

Alyssa

New member
The short answer is "Yes" It is entirely possible that his sinus issues are a result of having CF, especially when you have eliminated so many other possibilities.

It would be a very good idea to pursue complete genetic testing -- be sure they check for ALL CF genes...often times the doctor and/or insurance company want to start with the cheaper screenings of less than 100 genes - This is usually a waste of time, money and effort and only leaves you with more questions and in limbo for a longer period of time. Be sure to ask for testing of all known mutations -- that should include a minimum of 1,561 genes.
 
A

Alyssa

New member
The short answer is "Yes" It is entirely possible that his sinus issues are a result of having CF, especially when you have eliminated so many other possibilities.

It would be a very good idea to pursue complete genetic testing -- be sure they check for ALL CF genes...often times the doctor and/or insurance company want to start with the cheaper screenings of less than 100 genes - This is usually a waste of time, money and effort and only leaves you with more questions and in limbo for a longer period of time. Be sure to ask for testing of all known mutations -- that should include a minimum of 1,561 genes.
 
A

Alyssa

New member
The short answer is "Yes" It is entirely possible that his sinus issues are a result of having CF, especially when you have eliminated so many other possibilities.

It would be a very good idea to pursue complete genetic testing -- be sure they check for ALL CF genes...often times the doctor and/or insurance company want to start with the cheaper screenings of less than 100 genes - This is usually a waste of time, money and effort and only leaves you with more questions and in limbo for a longer period of time. Be sure to ask for testing of all known mutations -- that should include a minimum of 1,561 genes.
 
A

Alyssa

New member
The short answer is "Yes" It is entirely possible that his sinus issues are a result of having CF, especially when you have eliminated so many other possibilities.

It would be a very good idea to pursue complete genetic testing -- be sure they check for ALL CF genes...often times the doctor and/or insurance company want to start with the cheaper screenings of less than 100 genes - This is usually a waste of time, money and effort and only leaves you with more questions and in limbo for a longer period of time. Be sure to ask for testing of all known mutations -- that should include a minimum of 1,561 genes.
 
A

Alyssa

New member
The short answer is "Yes" It is entirely possible that his sinus issues are a result of having CF, especially when you have eliminated so many other possibilities.
<br />
<br />It would be a very good idea to pursue complete genetic testing -- be sure they check for ALL CF genes...often times the doctor and/or insurance company want to start with the cheaper screenings of less than 100 genes - This is usually a waste of time, money and effort and only leaves you with more questions and in limbo for a longer period of time. Be sure to ask for testing of all known mutations -- that should include a minimum of 1,561 genes.
 
J

JazzysMom

New member
One of the first members I met on this forum was a Mom with CF who only had sinus issues.

Her diagnosis was made late because she had none of the "classic" symptoms so if nothing else I would demand genetic testing to rule out CF.
 
J

JazzysMom

New member
One of the first members I met on this forum was a Mom with CF who only had sinus issues.

Her diagnosis was made late because she had none of the "classic" symptoms so if nothing else I would demand genetic testing to rule out CF.
 
J

JazzysMom

New member
One of the first members I met on this forum was a Mom with CF who only had sinus issues.

Her diagnosis was made late because she had none of the "classic" symptoms so if nothing else I would demand genetic testing to rule out CF.
 
J

JazzysMom

New member
One of the first members I met on this forum was a Mom with CF who only had sinus issues.

Her diagnosis was made late because she had none of the "classic" symptoms so if nothing else I would demand genetic testing to rule out CF.
 
J

JazzysMom

New member
One of the first members I met on this forum was a Mom with CF who only had sinus issues.
<br />
<br />Her diagnosis was made late because she had none of the "classic" symptoms so if nothing else I would demand genetic testing to rule out CF.
 
J

jerse0440

New member
Thank you both for your thoughts. How do they do the testing? Is it with sweat and blood tests? I am very new to all of this, please forgive my ignorance. I will ask for them to test him, at this point it sure can't hurt.
Also, I also will try the sinus flush that I saw other parents are using, it really sounds like the children get good results.
Currently he is really having a lot of drainage, ever since he started swimming last Fri. I can't figure out if the swimming is causing the junk from the chronic infection to begin to drain or if is has set off another acute infection. He is such a trooper and keeps on going.

Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.
Thanks again for your feedback.
 
J

jerse0440

New member
Thank you both for your thoughts. How do they do the testing? Is it with sweat and blood tests? I am very new to all of this, please forgive my ignorance. I will ask for them to test him, at this point it sure can't hurt.
Also, I also will try the sinus flush that I saw other parents are using, it really sounds like the children get good results.
Currently he is really having a lot of drainage, ever since he started swimming last Fri. I can't figure out if the swimming is causing the junk from the chronic infection to begin to drain or if is has set off another acute infection. He is such a trooper and keeps on going.

Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.
Thanks again for your feedback.
 
J

jerse0440

New member
Thank you both for your thoughts. How do they do the testing? Is it with sweat and blood tests? I am very new to all of this, please forgive my ignorance. I will ask for them to test him, at this point it sure can't hurt.
Also, I also will try the sinus flush that I saw other parents are using, it really sounds like the children get good results.
Currently he is really having a lot of drainage, ever since he started swimming last Fri. I can't figure out if the swimming is causing the junk from the chronic infection to begin to drain or if is has set off another acute infection. He is such a trooper and keeps on going.

Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.
Thanks again for your feedback.
 
J

jerse0440

New member
Thank you both for your thoughts. How do they do the testing? Is it with sweat and blood tests? I am very new to all of this, please forgive my ignorance. I will ask for them to test him, at this point it sure can't hurt.
Also, I also will try the sinus flush that I saw other parents are using, it really sounds like the children get good results.
Currently he is really having a lot of drainage, ever since he started swimming last Fri. I can't figure out if the swimming is causing the junk from the chronic infection to begin to drain or if is has set off another acute infection. He is such a trooper and keeps on going.

Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.
Thanks again for your feedback.
 
J

jerse0440

New member
Thank you both for your thoughts. How do they do the testing? Is it with sweat and blood tests? I am very new to all of this, please forgive my ignorance. I will ask for them to test him, at this point it sure can't hurt.
<br />Also, I also will try the sinus flush that I saw other parents are using, it really sounds like the children get good results.
<br />Currently he is really having a lot of drainage, ever since he started swimming last Fri. I can't figure out if the swimming is causing the junk from the chronic infection to begin to drain or if is has set off another acute infection. He is such a trooper and keeps on going.
<br />
<br />Melissa, do you know if the mom that you spoke of is still on this board? I would love to hear what her history is, or anyone who may have been down a similar path.
<br />Thanks again for your feedback.
 
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