Not sure what to do??

D

Dylan000

New member
Hi my name is Cristin. My son is 8 yrs old and has been sick with sinus infections since he has been 3. We have had several surgeries, antibodics, he got staph in his sinuses, polups, and 4 sets of tubes. We have had two sweat test come back borderline and the last one came back negitive. We thought oh we are out of the woods. So he got sick again and had another sinus surgery and removal of polyps. Two weeks later he was in with infection again and the polyps came back. Now he is having diffuctly breathing. Like he can't seem to get a deep breathe. I asked his sinus dr if we should have the gene test done and he said if the cf clinical didn't say to do it then they don't think he has it but i think that he has a very very mild case of cf and we will just treat him in the office for that. I want to get him tested so i think i am going to call the cf clinical and demand a gene test. i am 7 months pregnant and i would really like to know if i need to get my newborn test as well. Has anyone else not been diagonis but the dr is going to treat you as if you had a mild case of cf? Its just the wildest thing i have ever heard. I enjoy gettin on here and reading yall post i have really learned alot from you guys.. Thanks for listening

Cristin~~son dylan 8yr unsure if he has cf
 
D

Dylan000

New member
Hi my name is Cristin. My son is 8 yrs old and has been sick with sinus infections since he has been 3. We have had several surgeries, antibodics, he got staph in his sinuses, polups, and 4 sets of tubes. We have had two sweat test come back borderline and the last one came back negitive. We thought oh we are out of the woods. So he got sick again and had another sinus surgery and removal of polyps. Two weeks later he was in with infection again and the polyps came back. Now he is having diffuctly breathing. Like he can't seem to get a deep breathe. I asked his sinus dr if we should have the gene test done and he said if the cf clinical didn't say to do it then they don't think he has it but i think that he has a very very mild case of cf and we will just treat him in the office for that. I want to get him tested so i think i am going to call the cf clinical and demand a gene test. i am 7 months pregnant and i would really like to know if i need to get my newborn test as well. Has anyone else not been diagonis but the dr is going to treat you as if you had a mild case of cf? Its just the wildest thing i have ever heard. I enjoy gettin on here and reading yall post i have really learned alot from you guys.. Thanks for listening

Cristin~~son dylan 8yr unsure if he has cf
 
D

Dylan000

New member
Hi my name is Cristin. My son is 8 yrs old and has been sick with sinus infections since he has been 3. We have had several surgeries, antibodics, he got staph in his sinuses, polups, and 4 sets of tubes. We have had two sweat test come back borderline and the last one came back negitive. We thought oh we are out of the woods. So he got sick again and had another sinus surgery and removal of polyps. Two weeks later he was in with infection again and the polyps came back. Now he is having diffuctly breathing. Like he can't seem to get a deep breathe. I asked his sinus dr if we should have the gene test done and he said if the cf clinical didn't say to do it then they don't think he has it but i think that he has a very very mild case of cf and we will just treat him in the office for that. I want to get him tested so i think i am going to call the cf clinical and demand a gene test. i am 7 months pregnant and i would really like to know if i need to get my newborn test as well. Has anyone else not been diagonis but the dr is going to treat you as if you had a mild case of cf? Its just the wildest thing i have ever heard. I enjoy gettin on here and reading yall post i have really learned alot from you guys.. Thanks for listening

Cristin~~son dylan 8yr unsure if he has cf
 
D

Dylan000

New member
Hi my name is Cristin. My son is 8 yrs old and has been sick with sinus infections since he has been 3. We have had several surgeries, antibodics, he got staph in his sinuses, polups, and 4 sets of tubes. We have had two sweat test come back borderline and the last one came back negitive. We thought oh we are out of the woods. So he got sick again and had another sinus surgery and removal of polyps. Two weeks later he was in with infection again and the polyps came back. Now he is having diffuctly breathing. Like he can't seem to get a deep breathe. I asked his sinus dr if we should have the gene test done and he said if the cf clinical didn't say to do it then they don't think he has it but i think that he has a very very mild case of cf and we will just treat him in the office for that. I want to get him tested so i think i am going to call the cf clinical and demand a gene test. i am 7 months pregnant and i would really like to know if i need to get my newborn test as well. Has anyone else not been diagonis but the dr is going to treat you as if you had a mild case of cf? Its just the wildest thing i have ever heard. I enjoy gettin on here and reading yall post i have really learned alot from you guys.. Thanks for listening

Cristin~~son dylan 8yr unsure if he has cf
 
D

Dylan000

New member
Hi my name is Cristin. My son is 8 yrs old and has been sick with sinus infections since he has been 3. We have had several surgeries, antibodics, he got staph in his sinuses, polups, and 4 sets of tubes. We have had two sweat test come back borderline and the last one came back negitive. We thought oh we are out of the woods. So he got sick again and had another sinus surgery and removal of polyps. Two weeks later he was in with infection again and the polyps came back. Now he is having diffuctly breathing. Like he can't seem to get a deep breathe. I asked his sinus dr if we should have the gene test done and he said if the cf clinical didn't say to do it then they don't think he has it but i think that he has a very very mild case of cf and we will just treat him in the office for that. I want to get him tested so i think i am going to call the cf clinical and demand a gene test. i am 7 months pregnant and i would really like to know if i need to get my newborn test as well. Has anyone else not been diagonis but the dr is going to treat you as if you had a mild case of cf? Its just the wildest thing i have ever heard. I enjoy gettin on here and reading yall post i have really learned alot from you guys.. Thanks for listening
<br />
<br />Cristin~~son dylan 8yr unsure if he has cf
 
2

2sickkids

Guest
Yes I've know someone treated before the offical diagnosis. You won't be able to call a cf clinic and get visit. Can only be done though the primary doctor. So you will need to pressure them. Many states do a basic cf screening on newborns now so ask your dr if you live in one that does. You maybe able to request it if not. However if it's not you may have to pay for the test.
 
2

2sickkids

Guest
Yes I've know someone treated before the offical diagnosis. You won't be able to call a cf clinic and get visit. Can only be done though the primary doctor. So you will need to pressure them. Many states do a basic cf screening on newborns now so ask your dr if you live in one that does. You maybe able to request it if not. However if it's not you may have to pay for the test.
 
2

2sickkids

Guest
Yes I've know someone treated before the offical diagnosis. You won't be able to call a cf clinic and get visit. Can only be done though the primary doctor. So you will need to pressure them. Many states do a basic cf screening on newborns now so ask your dr if you live in one that does. You maybe able to request it if not. However if it's not you may have to pay for the test.
 
2

2sickkids

Guest
Yes I've know someone treated before the offical diagnosis. You won't be able to call a cf clinic and get visit. Can only be done though the primary doctor. So you will need to pressure them. Many states do a basic cf screening on newborns now so ask your dr if you live in one that does. You maybe able to request it if not. However if it's not you may have to pay for the test.
 
2

2sickkids

Guest
Yes I've know someone treated before the offical diagnosis. You won't be able to call a cf clinic and get visit. Can only be done though the primary doctor. So you will need to pressure them. Many states do a basic cf screening on newborns now so ask your dr if you live in one that does. You maybe able to request it if not. However if it's not you may have to pay for the test.
 
C

crickit715

New member
my obgyn doc did a cf carrier test on me as a standard procedure when i was pregnant. you should ask your doc if he can do one on you, its just bloodwork...then if you come back pos as a carrier you can have your husband get a bloodtest too.....maybe if both test for guys are positive that would help your "case" with your childs dr, and get them to pursue genetic testing....(does that make sense???lol)
 
C

crickit715

New member
my obgyn doc did a cf carrier test on me as a standard procedure when i was pregnant. you should ask your doc if he can do one on you, its just bloodwork...then if you come back pos as a carrier you can have your husband get a bloodtest too.....maybe if both test for guys are positive that would help your "case" with your childs dr, and get them to pursue genetic testing....(does that make sense???lol)
 
C

crickit715

New member
my obgyn doc did a cf carrier test on me as a standard procedure when i was pregnant. you should ask your doc if he can do one on you, its just bloodwork...then if you come back pos as a carrier you can have your husband get a bloodtest too.....maybe if both test for guys are positive that would help your "case" with your childs dr, and get them to pursue genetic testing....(does that make sense???lol)
 
C

crickit715

New member
my obgyn doc did a cf carrier test on me as a standard procedure when i was pregnant. you should ask your doc if he can do one on you, its just bloodwork...then if you come back pos as a carrier you can have your husband get a bloodtest too.....maybe if both test for guys are positive that would help your "case" with your childs dr, and get them to pursue genetic testing....(does that make sense???lol)
 
C

crickit715

New member
my obgyn doc did a cf carrier test on me as a standard procedure when i was pregnant. you should ask your doc if he can do one on you, its just bloodwork...then if you come back pos as a carrier you can have your husband get a bloodtest too.....maybe if both test for guys are positive that would help your "case" with your childs dr, and get them to pursue genetic testing....(does that make sense???lol)
 
R

Ratatosk

Administrator
Staff member
You could ask your doctor about carrier testing for yourself and your husband, though I'm not sure exactly how many mutations that would actually cover. Plus, DH's cousin tried to get carrier testing when she was planning and pregnancy and got the run around -- couldn't get a clear answer from her OB/GYN and the pediatrician who runs our local CF clinic pretty much discouraged doing so -- suggested that she needs to think long and hard as to WHY she would want to be tested. Hello?!

Being that my son's sweat test was normal, I'm not a fan. So IMO, I'd push for genetic testing for your son -- the amplified testing, not the one that tests for the basic mutations..

Plus I have issues with the whole mild cf debate. As far as I'm concerned CF is CF.

Your doctor can order the genetic test, so you could try to pursue it thru his office. If he's not willing to do so, ask him to put it in writing and in your son's file "patient's parents requested CF testing, we refused because..."
 
R

Ratatosk

Administrator
Staff member
You could ask your doctor about carrier testing for yourself and your husband, though I'm not sure exactly how many mutations that would actually cover. Plus, DH's cousin tried to get carrier testing when she was planning and pregnancy and got the run around -- couldn't get a clear answer from her OB/GYN and the pediatrician who runs our local CF clinic pretty much discouraged doing so -- suggested that she needs to think long and hard as to WHY she would want to be tested. Hello?!

Being that my son's sweat test was normal, I'm not a fan. So IMO, I'd push for genetic testing for your son -- the amplified testing, not the one that tests for the basic mutations..

Plus I have issues with the whole mild cf debate. As far as I'm concerned CF is CF.

Your doctor can order the genetic test, so you could try to pursue it thru his office. If he's not willing to do so, ask him to put it in writing and in your son's file "patient's parents requested CF testing, we refused because..."
 
R

Ratatosk

Administrator
Staff member
You could ask your doctor about carrier testing for yourself and your husband, though I'm not sure exactly how many mutations that would actually cover. Plus, DH's cousin tried to get carrier testing when she was planning and pregnancy and got the run around -- couldn't get a clear answer from her OB/GYN and the pediatrician who runs our local CF clinic pretty much discouraged doing so -- suggested that she needs to think long and hard as to WHY she would want to be tested. Hello?!

Being that my son's sweat test was normal, I'm not a fan. So IMO, I'd push for genetic testing for your son -- the amplified testing, not the one that tests for the basic mutations..

Plus I have issues with the whole mild cf debate. As far as I'm concerned CF is CF.

Your doctor can order the genetic test, so you could try to pursue it thru his office. If he's not willing to do so, ask him to put it in writing and in your son's file "patient's parents requested CF testing, we refused because..."
 
R

Ratatosk

Administrator
Staff member
You could ask your doctor about carrier testing for yourself and your husband, though I'm not sure exactly how many mutations that would actually cover. Plus, DH's cousin tried to get carrier testing when she was planning and pregnancy and got the run around -- couldn't get a clear answer from her OB/GYN and the pediatrician who runs our local CF clinic pretty much discouraged doing so -- suggested that she needs to think long and hard as to WHY she would want to be tested. Hello?!

Being that my son's sweat test was normal, I'm not a fan. So IMO, I'd push for genetic testing for your son -- the amplified testing, not the one that tests for the basic mutations..

Plus I have issues with the whole mild cf debate. As far as I'm concerned CF is CF.

Your doctor can order the genetic test, so you could try to pursue it thru his office. If he's not willing to do so, ask him to put it in writing and in your son's file "patient's parents requested CF testing, we refused because..."
 
R

Ratatosk

Administrator
Staff member
You could ask your doctor about carrier testing for yourself and your husband, though I'm not sure exactly how many mutations that would actually cover. Plus, DH's cousin tried to get carrier testing when she was planning and pregnancy and got the run around -- couldn't get a clear answer from her OB/GYN and the pediatrician who runs our local CF clinic pretty much discouraged doing so -- suggested that she needs to think long and hard as to WHY she would want to be tested. Hello?!
<br />
<br />Being that my son's sweat test was normal, I'm not a fan. So IMO, I'd push for genetic testing for your son -- the amplified testing, not the one that tests for the basic mutations..
<br />
<br />Plus I have issues with the whole mild cf debate. As far as I'm concerned CF is CF.
<br />
<br />Your doctor can order the genetic test, so you could try to pursue it thru his office. If he's not willing to do so, ask him to put it in writing and in your son's file "patient's parents requested CF testing, we refused because..."
 
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