Strep throat and CF?

[Twogreatkids]

Hi all. I am searching for possible answers for my son. He is 6 and since entering kindergarten this year has had strep throat 5 times. We are scheduled to have his tonsils out in a few weeks. My question is this: do CF kids get strep more frequently than others? He has NOT been dx. with CF, and the docs have ruled it out after one low borderline sweat test, and one normal (17) sweat test. Additionally, he has no mutations found with the 97 mutation panel. Why I am not letting go of it is because he seems to be "sick" all the time. He has asthma and extensive allergies. It seems like every "bug" out there he gets, and he has had several sinus infections. All of the previous reasons led us to test for CF to begin with. The docs say he is fine, just needs to build his immune system (he wasn't in daycare before kindergarten). I just can't let go of the nagging feeling that we are missing something. BUT, because he was "cleared" on the 97 panel, and one sweat test was very normal, they won't even listen to me when I bring up CF. So, back to my original question. Any of you deal excessively with strep, or is that just a normal kid thing? thanks.

 

[Twogreatkids]

Hi all. I am searching for possible answers for my son. He is 6 and since entering kindergarten this year has had strep throat 5 times. We are scheduled to have his tonsils out in a few weeks. My question is this: do CF kids get strep more frequently than others? He has NOT been dx. with CF, and the docs have ruled it out after one low borderline sweat test, and one normal (17) sweat test. Additionally, he has no mutations found with the 97 mutation panel. Why I am not letting go of it is because he seems to be "sick" all the time. He has asthma and extensive allergies. It seems like every "bug" out there he gets, and he has had several sinus infections. All of the previous reasons led us to test for CF to begin with. The docs say he is fine, just needs to build his immune system (he wasn't in daycare before kindergarten). I just can't let go of the nagging feeling that we are missing something. BUT, because he was "cleared" on the 97 panel, and one sweat test was very normal, they won't even listen to me when I bring up CF. So, back to my original question. Any of you deal excessively with strep, or is that just a normal kid thing? thanks.

 

[Twogreatkids]

Hi all. I am searching for possible answers for my son. He is 6 and since entering kindergarten this year has had strep throat 5 times. We are scheduled to have his tonsils out in a few weeks. My question is this: do CF kids get strep more frequently than others? He has NOT been dx. with CF, and the docs have ruled it out after one low borderline sweat test, and one normal (17) sweat test. Additionally, he has no mutations found with the 97 mutation panel. Why I am not letting go of it is because he seems to be "sick" all the time. He has asthma and extensive allergies. It seems like every "bug" out there he gets, and he has had several sinus infections. All of the previous reasons led us to test for CF to begin with. The docs say he is fine, just needs to build his immune system (he wasn't in daycare before kindergarten). I just can't let go of the nagging feeling that we are missing something. BUT, because he was "cleared" on the 97 panel, and one sweat test was very normal, they won't even listen to me when I bring up CF. So, back to my original question. Any of you deal excessively with strep, or is that just a normal kid thing? thanks.

 

[NoExcuses]

1. There are <b> 1500 </b> CF mutations. So testing for 97 isn't going to give you a definitive yes or no answer on the CF question

2. CF patients don't get more strep throat than other patients. We do colonize strep pneumoniae in our lungs frequently, though

 

[NoExcuses]

1. There are <b> 1500 </b> CF mutations. So testing for 97 isn't going to give you a definitive yes or no answer on the CF question

2. CF patients don't get more strep throat than other patients. We do colonize strep pneumoniae in our lungs frequently, though

 

[NoExcuses]

1. There are <b> 1500 </b> CF mutations. So testing for 97 isn't going to give you a definitive yes or no answer on the CF question

2. CF patients don't get more strep throat than other patients. We do colonize strep pneumoniae in our lungs frequently, though

 

[CFMOM65]

my daughter 16 mths w/ cf cultered pos for strep when she was 12 mths old im not sure if its a cf thing i know they can easily catch different bacterias. i have heard that when a child doesnt go to daycare or preschool before they go to reg school that they tend to catch alot of everything because there not used to being exposed to all the germs. i do beleive though in a mothers instinct i would get a thorogh dna screening of all mutations of cf , i wish u the best keep us posted




cfmom65

9 yr old daughter w/o cf & baby girl 16 mnths old w/ cf

 

[CFMOM65]

my daughter 16 mths w/ cf cultered pos for strep when she was 12 mths old im not sure if its a cf thing i know they can easily catch different bacterias. i have heard that when a child doesnt go to daycare or preschool before they go to reg school that they tend to catch alot of everything because there not used to being exposed to all the germs. i do beleive though in a mothers instinct i would get a thorogh dna screening of all mutations of cf , i wish u the best keep us posted




cfmom65

9 yr old daughter w/o cf & baby girl 16 mnths old w/ cf

 

[CFMOM65]

my daughter 16 mths w/ cf cultered pos for strep when she was 12 mths old im not sure if its a cf thing i know they can easily catch different bacterias. i have heard that when a child doesnt go to daycare or preschool before they go to reg school that they tend to catch alot of everything because there not used to being exposed to all the germs. i do beleive though in a mothers instinct i would get a thorogh dna screening of all mutations of cf , i wish u the best keep us posted




cfmom65

9 yr old daughter w/o cf & baby girl 16 mnths old w/ cf

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFMOM65</b></i>
have heard that when a child doesnt go to daycare or preschool before they go to reg school that they tend to catch alot of everything because there not used to being exposed to all the germs.</end quote></div>

that is absolutely not true.

kids who attend daycare tend to get multri drug resistant bugs more frequently than those who do not attend day care.

ask any infectious disease physician - they will tell you this is the case.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFMOM65</b></i>
have heard that when a child doesnt go to daycare or preschool before they go to reg school that they tend to catch alot of everything because there not used to being exposed to all the germs.</end quote></div>

that is absolutely not true.

kids who attend daycare tend to get multri drug resistant bugs more frequently than those who do not attend day care.

ask any infectious disease physician - they will tell you this is the case.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFMOM65</b></i>
have heard that when a child doesnt go to daycare or preschool before they go to reg school that they tend to catch alot of everything because there not used to being exposed to all the germs.</end quote></div>

that is absolutely not true.

kids who attend daycare tend to get multri drug resistant bugs more frequently than those who do not attend day care.

ask any infectious disease physician - they will tell you this is the case.

 

[amber682]

Kids with CF don't catch strep more easily, but like Sakasuka said, they can colonize it in their lungs. So if the medicine didn't completely erradicate it, it would still be living in there and could easily flare back up.

Just the fact that he had a borderline sweat test, along with repeated infections, asthma, and allergies should be more than enough reasons for the doctors to do an extended panel. Please don't take no for an answer and fight until someone listens and does full gene sequence testing. I think they should stop using sweat test all together because they can and do give false negatives. Don't let them tell you testing for 97 out of 1400+ mutations is adequate either. My math could be off, but that's what, like 7% of known mutations? Trust those mommy instincts!

 

[amber682]

Kids with CF don't catch strep more easily, but like Sakasuka said, they can colonize it in their lungs. So if the medicine didn't completely erradicate it, it would still be living in there and could easily flare back up.

Just the fact that he had a borderline sweat test, along with repeated infections, asthma, and allergies should be more than enough reasons for the doctors to do an extended panel. Please don't take no for an answer and fight until someone listens and does full gene sequence testing. I think they should stop using sweat test all together because they can and do give false negatives. Don't let them tell you testing for 97 out of 1400+ mutations is adequate either. My math could be off, but that's what, like 7% of known mutations? Trust those mommy instincts!

 

[amber682]

Kids with CF don't catch strep more easily, but like Sakasuka said, they can colonize it in their lungs. So if the medicine didn't completely erradicate it, it would still be living in there and could easily flare back up.

Just the fact that he had a borderline sweat test, along with repeated infections, asthma, and allergies should be more than enough reasons for the doctors to do an extended panel. Please don't take no for an answer and fight until someone listens and does full gene sequence testing. I think they should stop using sweat test all together because they can and do give false negatives. Don't let them tell you testing for 97 out of 1400+ mutations is adequate either. My math could be off, but that's what, like 7% of known mutations? Trust those mommy instincts!

 

[Twogreatkids]

Thanks to all, but you bring up one more question for me. I agree that I would like to have the extended panel done. BUT HOW DO I GET A DOCTOR TO ORDER THAT FOR ME WHEN THEY DON'T BELIEVE IT IS NECESSARY. Any suggestions? It was a doc at a very well-respected CF clinic who said we absolutly did not need to do an extended panel with such a low sweat test result, and no mutations on the 97 panel. I would appreciate any strategies you all could give. I have even tried to simply go to another CF clinic, and "start over" again, but my primary won't give me a referral, and they won't make an appt. without one. I feel very defeated at this point, and that all of my advocacy for my son is to no avail.

 

[Twogreatkids]

Thanks to all, but you bring up one more question for me. I agree that I would like to have the extended panel done. BUT HOW DO I GET A DOCTOR TO ORDER THAT FOR ME WHEN THEY DON'T BELIEVE IT IS NECESSARY. Any suggestions? It was a doc at a very well-respected CF clinic who said we absolutly did not need to do an extended panel with such a low sweat test result, and no mutations on the 97 panel. I would appreciate any strategies you all could give. I have even tried to simply go to another CF clinic, and "start over" again, but my primary won't give me a referral, and they won't make an appt. without one. I feel very defeated at this point, and that all of my advocacy for my son is to no avail.

 

[Twogreatkids]

Thanks to all, but you bring up one more question for me. I agree that I would like to have the extended panel done. BUT HOW DO I GET A DOCTOR TO ORDER THAT FOR ME WHEN THEY DON'T BELIEVE IT IS NECESSARY. Any suggestions? It was a doc at a very well-respected CF clinic who said we absolutly did not need to do an extended panel with such a low sweat test result, and no mutations on the 97 panel. I would appreciate any strategies you all could give. I have even tried to simply go to another CF clinic, and "start over" again, but my primary won't give me a referral, and they won't make an appt. without one. I feel very defeated at this point, and that all of my advocacy for my son is to no avail.

 

[JazzysMom]

HMMM for the first time in a long time I ?? CF testing here. I will say that if in doubt keep pushing, BUT I also can say that my daughter (no CF) had 2 bouts of strep & 2 bouts of uncontrolled fevers within a 6 week span this year. In addition she has bad seasonal allergies that often lead to her getting sick. She hasnt been dx with asmtha since most of her problems are in the head (she is her mothers daugher LOL) and havent reached her chest chronically. My daughter has always been the one to get the viral things more then bacterial. Like I said if in doubt push for additional testing. I always find it difficult when there is no digestive issues since that is what my whole dx was based on. I have limited exposure/knowledge of sinus issues with CF. Good Luck & let us know.

 

[JazzysMom]

HMMM for the first time in a long time I ?? CF testing here. I will say that if in doubt keep pushing, BUT I also can say that my daughter (no CF) had 2 bouts of strep & 2 bouts of uncontrolled fevers within a 6 week span this year. In addition she has bad seasonal allergies that often lead to her getting sick. She hasnt been dx with asmtha since most of her problems are in the head (she is her mothers daugher LOL) and havent reached her chest chronically. My daughter has always been the one to get the viral things more then bacterial. Like I said if in doubt push for additional testing. I always find it difficult when there is no digestive issues since that is what my whole dx was based on. I have limited exposure/knowledge of sinus issues with CF. Good Luck & let us know.