questions--next step

[anonymous]

Hi,

I posted before asking about the borderline sweat test. I have a couple of questions:

Exactly what do I do to get a full genetic test (extended mutation panel w/Quest diagnostics?) Does insurance cover it? If not, how much does it cost? Is it a blood test that can be drawn anywhere? How long does it take to get results?

The nurse at the pediatrician's office said that my son's sweat test was 44 and normal which I knew wasn't accurate from googling "sweat test" before I found this site. Do you think the doctor really thought that 44 is normal or just having his nurse say that so we didn't worry? It really bothers me because he must know it's borderline and he wouldn't have tested for cf if he didn't have a thought that my son could have cf, right?

Does cf affect blood tests in other ways? My son's blood tests have shown very low immunoglobulins among other abnormalities.

On a previous post, someone said that steroids can affect the results--he is on Pulmicort and Rhinocort, would that (possibly) make his result higher or lower?

Last but not least, my son had a severe ear infection on Dec 28th that moved into his sinuses which moved into his lungs. The doctor says his lungs now sound clear, but he is still really sick after 8 rounds of antibiotics. I can't even describe how nasty and red and mucousy his throat looks and now he has polyps somewhere in his sinuses and the doc says there isn't anything more he can do until they find out what is wrong w/him. He's allergic to Omnicef, but aren't there stronger antibiotics or something? It seems like a bad idea to let a really bad sinus and ear infection (no fever) go without at least trying to do something else.

Thanks, Laura

 

[anonymous]

Hi,

I posted before asking about the borderline sweat test. I have a couple of questions:

Exactly what do I do to get a full genetic test (extended mutation panel w/Quest diagnostics?) Does insurance cover it? If not, how much does it cost? Is it a blood test that can be drawn anywhere? How long does it take to get results?

The nurse at the pediatrician's office said that my son's sweat test was 44 and normal which I knew wasn't accurate from googling "sweat test" before I found this site. Do you think the doctor really thought that 44 is normal or just having his nurse say that so we didn't worry? It really bothers me because he must know it's borderline and he wouldn't have tested for cf if he didn't have a thought that my son could have cf, right?

Does cf affect blood tests in other ways? My son's blood tests have shown very low immunoglobulins among other abnormalities.

On a previous post, someone said that steroids can affect the results--he is on Pulmicort and Rhinocort, would that (possibly) make his result higher or lower?

Last but not least, my son had a severe ear infection on Dec 28th that moved into his sinuses which moved into his lungs. The doctor says his lungs now sound clear, but he is still really sick after 8 rounds of antibiotics. I can't even describe how nasty and red and mucousy his throat looks and now he has polyps somewhere in his sinuses and the doc says there isn't anything more he can do until they find out what is wrong w/him. He's allergic to Omnicef, but aren't there stronger antibiotics or something? It seems like a bad idea to let a really bad sinus and ear infection (no fever) go without at least trying to do something else.

Thanks, Laura

 

[julie]

Laura, I'll answer your questions in caps.


Exactly what do I do to get a full genetic test (extended mutation panel w/Quest diagnostics?) Does insurance cover it? If not, how much does it cost? Is it a blood test that can be drawn anywhere? How long does it take to get results? YES, MOST INSURANCE COMPANIES DO COVER IT, ALTHOUGH IT USUALLY REQUIRES A PREAUTHORIZATION AND I WOULD HIGHLY RECOMMEND YOU LOOK INTO THAT FIRST. YES, IT CAN BE DRAWN ANYWHERE PROVIDED THAT YOUR LOCAL LAB IS WILLING TO SEND IT TO QUEST DIAGNOSTICS LABORATORY FOR PROCESSING (THEY WOULD JUST NEED TO CALL QUEST CUSTOMER SERVICE IF THEY ARE NOT FAMILIAR WITH THE PROCESS). THE RESULTS USUALLY TAKE 4-6 WEEKS BECAUSE IT IS SUCH AN EXTENSIVE TEST. A NON EXTENDED PANEL TEST TAKES ANYWHERE FROM 1-4 WEEKS. YOUR INSURANCE COMPANY MIGHT HAVE YOU DO A NON-EXTENDED PANEL FIRST IF YOU HAVEN'T ALREADY DONE SO.

The nurse at the pediatrician's office said that my son's sweat test was 44 and normal which I knew wasn't accurate from googling "sweat test" before I found this site. Do you think the doctor really thought that 44 is normal or just having his nurse say that so we didn't worry? It really bothers me because he must know it's borderline and he wouldn't have tested for cf if he didn't have a thought that my son could have cf, right? A NURSE AT A PEDIATRICIANS OFFICE SHOULD NOT BE TRUSTED TO MAKE THE A STATEMENT REGARDING THE NORMALACY OF A SWEAT TEST, THEY AREN'T TRAINED IN THE SPECIFICS OF CF AND THEY DON'T YOUR SITUATION EVERYDAY. THIS IS WHY ACCREDITED CF CENTERS EXIST AND YOUR REALLY SHOULD VISIT ONE. I WOULD RECOMMEND YOU GET A REFERRAL TO A LOCAL CF CENTER (<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org">www.cff.org</a>) AND HAVE YOUR SON TESTED AGAIN THERE. I AM PRETTY CERTAIN THAT THE DOCTOR REALLY THOUGHT THAT 44 IS NORMAL, NON-CF DOCTORS ARE CLUELESS AS A GENERAL RULE OF THUMB AND CAN MAKE YOU CF EXPERIENCE VERY FRUSTRATING!

Does cf affect blood tests in other ways? My son's blood tests have shown very low immunoglobulins among other abnormalities. NOT SURE ON THIS ONE

On a previous post, someone said that steroids can affect the results--he is on Pulmicort and Rhinocort, would that (possibly) make his result higher or lower? AGAIN, NOT SURE ON THIS ONE

Last but not least, my son had a severe ear infection on Dec 28th that moved into his sinuses which moved into his lungs. The doctor says his lungs now sound clear, but he is still really sick after 8 rounds of antibiotics. I can't even describe how nasty and red and mucousy his throat looks and now he has polyps somewhere in his sinuses and the doc says there isn't anything more he can do until they find out what is wrong w/him. He's allergic to Omnicef, but aren't there stronger antibiotics or something? It seems like a bad idea to let a really bad sinus and ear infection (no fever) go without at least trying to do something else. INHALED TOBI IS AN ANTIBIOTIC FOR LUNG INFECTIONS. HOW OLD IS YOUR SON? SOME YOUNG CHILDREN HAVE PROBLEMS WITH IT, RINGING IN THE EARS... PULMOZYME (DNASE) WHICH THINS THE MUCUS WHICH MAKES IT EASIER FOR A CFER TO COUGH UP THE CRAP THAT SETTLES IN THEIR LUNGS. CIPRO IS ALSO USUALLY EFFECTIVE AGAINST WHAT CFERS GROW.
<b>I CAN'T BELIEVE YOUR DOCTOR WOULD TELL YOU THAT THEY CAN'T DO ANYTHING MORE UNTIL THEY KNOW WHAT IT IS. WHAT A CROCK. GET A NEW DOCTOR ASAP. BETTER YET, GET INTO A CF CLINIC!!!!!!!!!!!!!!!!</b>. FURTHERMORE, POLYPS ARE GENERALLY ASSOCIATED WITH CF, NOT SOLELY ASSOCIATED BUT MANY CFERS HAVE THEM. I'M PRETTY SURE THAT YOUR SON HAS CF AND IT ONLY MAKES SENSE TO TREAT HIM AS SUCH UNTIL PROVED OTHERWISE.

THINK OF IF HE DOES HAVE CF, AND YOUR PEDI. PLAYS AROUND WITH THE CONDITION FOR THE NEXT 3-6 MONTHS AND THEN IT IS DISCOVERED HE DOES HAVE CF. THAT IS VALUABLE TREATMENT TIME LOST!!! VALUABLE THAT YOU CAN NEVER GET BACK. IF HE IS TREATED AS IF HE HAS CF, AND HE REALLY DOESN'T, NOTHING LOST.

I wish you luck and keep coming back for more answers when you need to! Don't let your doctor jerk you around, fight for your child's health!

 

[julie]

Laura, I'll answer your questions in caps.


Exactly what do I do to get a full genetic test (extended mutation panel w/Quest diagnostics?) Does insurance cover it? If not, how much does it cost? Is it a blood test that can be drawn anywhere? How long does it take to get results? YES, MOST INSURANCE COMPANIES DO COVER IT, ALTHOUGH IT USUALLY REQUIRES A PREAUTHORIZATION AND I WOULD HIGHLY RECOMMEND YOU LOOK INTO THAT FIRST. YES, IT CAN BE DRAWN ANYWHERE PROVIDED THAT YOUR LOCAL LAB IS WILLING TO SEND IT TO QUEST DIAGNOSTICS LABORATORY FOR PROCESSING (THEY WOULD JUST NEED TO CALL QUEST CUSTOMER SERVICE IF THEY ARE NOT FAMILIAR WITH THE PROCESS). THE RESULTS USUALLY TAKE 4-6 WEEKS BECAUSE IT IS SUCH AN EXTENSIVE TEST. A NON EXTENDED PANEL TEST TAKES ANYWHERE FROM 1-4 WEEKS. YOUR INSURANCE COMPANY MIGHT HAVE YOU DO A NON-EXTENDED PANEL FIRST IF YOU HAVEN'T ALREADY DONE SO.

The nurse at the pediatrician's office said that my son's sweat test was 44 and normal which I knew wasn't accurate from googling "sweat test" before I found this site. Do you think the doctor really thought that 44 is normal or just having his nurse say that so we didn't worry? It really bothers me because he must know it's borderline and he wouldn't have tested for cf if he didn't have a thought that my son could have cf, right? A NURSE AT A PEDIATRICIANS OFFICE SHOULD NOT BE TRUSTED TO MAKE THE A STATEMENT REGARDING THE NORMALACY OF A SWEAT TEST, THEY AREN'T TRAINED IN THE SPECIFICS OF CF AND THEY DON'T YOUR SITUATION EVERYDAY. THIS IS WHY ACCREDITED CF CENTERS EXIST AND YOUR REALLY SHOULD VISIT ONE. I WOULD RECOMMEND YOU GET A REFERRAL TO A LOCAL CF CENTER (<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org">www.cff.org</a>) AND HAVE YOUR SON TESTED AGAIN THERE. I AM PRETTY CERTAIN THAT THE DOCTOR REALLY THOUGHT THAT 44 IS NORMAL, NON-CF DOCTORS ARE CLUELESS AS A GENERAL RULE OF THUMB AND CAN MAKE YOU CF EXPERIENCE VERY FRUSTRATING!

Does cf affect blood tests in other ways? My son's blood tests have shown very low immunoglobulins among other abnormalities. NOT SURE ON THIS ONE

On a previous post, someone said that steroids can affect the results--he is on Pulmicort and Rhinocort, would that (possibly) make his result higher or lower? AGAIN, NOT SURE ON THIS ONE

Last but not least, my son had a severe ear infection on Dec 28th that moved into his sinuses which moved into his lungs. The doctor says his lungs now sound clear, but he is still really sick after 8 rounds of antibiotics. I can't even describe how nasty and red and mucousy his throat looks and now he has polyps somewhere in his sinuses and the doc says there isn't anything more he can do until they find out what is wrong w/him. He's allergic to Omnicef, but aren't there stronger antibiotics or something? It seems like a bad idea to let a really bad sinus and ear infection (no fever) go without at least trying to do something else. INHALED TOBI IS AN ANTIBIOTIC FOR LUNG INFECTIONS. HOW OLD IS YOUR SON? SOME YOUNG CHILDREN HAVE PROBLEMS WITH IT, RINGING IN THE EARS... PULMOZYME (DNASE) WHICH THINS THE MUCUS WHICH MAKES IT EASIER FOR A CFER TO COUGH UP THE CRAP THAT SETTLES IN THEIR LUNGS. CIPRO IS ALSO USUALLY EFFECTIVE AGAINST WHAT CFERS GROW.
<b>I CAN'T BELIEVE YOUR DOCTOR WOULD TELL YOU THAT THEY CAN'T DO ANYTHING MORE UNTIL THEY KNOW WHAT IT IS. WHAT A CROCK. GET A NEW DOCTOR ASAP. BETTER YET, GET INTO A CF CLINIC!!!!!!!!!!!!!!!!</b>. FURTHERMORE, POLYPS ARE GENERALLY ASSOCIATED WITH CF, NOT SOLELY ASSOCIATED BUT MANY CFERS HAVE THEM. I'M PRETTY SURE THAT YOUR SON HAS CF AND IT ONLY MAKES SENSE TO TREAT HIM AS SUCH UNTIL PROVED OTHERWISE.

THINK OF IF HE DOES HAVE CF, AND YOUR PEDI. PLAYS AROUND WITH THE CONDITION FOR THE NEXT 3-6 MONTHS AND THEN IT IS DISCOVERED HE DOES HAVE CF. THAT IS VALUABLE TREATMENT TIME LOST!!! VALUABLE THAT YOU CAN NEVER GET BACK. IF HE IS TREATED AS IF HE HAS CF, AND HE REALLY DOESN'T, NOTHING LOST.

I wish you luck and keep coming back for more answers when you need to! Don't let your doctor jerk you around, fight for your child's health!

 

[anonymous]

Hi,

Thank you for answering. You can bet I'm on the phone at 8:00 a.m. figuring out how to get the genetic testing done and talking to my ped about doing SOMETHING, ANYTHING to help my son feel better! At this point I am afraid to say too much about cf to my ped because I'm guessing he is convinced it ISN'T cf. I've seen that glazed-over look doctors get when you ask too many questions and then they assume that you are wanting to pin your hopes on having a certain diagnosis. That's definately not the case. I can handle anything other than not knowing why my son is wasting away. He is such a trooper and has a good attitude and is always talking about playing football again and "when I get better" but I know he is scared to death.

My son is 13 years old now and I really think because he is a tough kid that he isn't taken serious. We'll tell the doctor that he can't breathe and they act like they think he's exaggerating. Our endocrinologist said--and I quote--"Oh, you must be able to breathe or you wouldn't be talking". Nice, huh? He's no longer our endocrinologist. I have also taken him to the ER and to an urgent care office when my ped wasn't available and they act like it's no big deal but I think it's a big deal that his throat looks so yucky and his head hurts so bad he can't hardly stand it and he has heaviness in his chest and he's not getting ANY better.

Also, our pediatrician, believe it or not, is the best we've found. He HAS tried to help him, but I'm just not convinced that waiting while he gets sicker every day is a good option. I'm thinking he should be on IV antibiotics or something really strong but at this point I don't know what else to insist on and I know that they have tried every antibiotic and with his immune system problems, nothing is helping. PLUS, if I change doctors (again) then I have to go through explaining his medical situation all over and then they will try all of the things that haven't worked. He has been out of school for 6 months and most of his time (except to go to the bathroom and to get something to eat) he is down in bed. I am so frustrated and scared plus I have very little faith in doctors right now.

Sorry for the vent but thanks.

Laura

 

[anonymous]

Hi,

Thank you for answering. You can bet I'm on the phone at 8:00 a.m. figuring out how to get the genetic testing done and talking to my ped about doing SOMETHING, ANYTHING to help my son feel better! At this point I am afraid to say too much about cf to my ped because I'm guessing he is convinced it ISN'T cf. I've seen that glazed-over look doctors get when you ask too many questions and then they assume that you are wanting to pin your hopes on having a certain diagnosis. That's definately not the case. I can handle anything other than not knowing why my son is wasting away. He is such a trooper and has a good attitude and is always talking about playing football again and "when I get better" but I know he is scared to death.

My son is 13 years old now and I really think because he is a tough kid that he isn't taken serious. We'll tell the doctor that he can't breathe and they act like they think he's exaggerating. Our endocrinologist said--and I quote--"Oh, you must be able to breathe or you wouldn't be talking". Nice, huh? He's no longer our endocrinologist. I have also taken him to the ER and to an urgent care office when my ped wasn't available and they act like it's no big deal but I think it's a big deal that his throat looks so yucky and his head hurts so bad he can't hardly stand it and he has heaviness in his chest and he's not getting ANY better.

Also, our pediatrician, believe it or not, is the best we've found. He HAS tried to help him, but I'm just not convinced that waiting while he gets sicker every day is a good option. I'm thinking he should be on IV antibiotics or something really strong but at this point I don't know what else to insist on and I know that they have tried every antibiotic and with his immune system problems, nothing is helping. PLUS, if I change doctors (again) then I have to go through explaining his medical situation all over and then they will try all of the things that haven't worked. He has been out of school for 6 months and most of his time (except to go to the bathroom and to get something to eat) he is down in bed. I am so frustrated and scared plus I have very little faith in doctors right now.

Sorry for the vent but thanks.

Laura

 

[anonymous]

Best Wishes to you and your son Laura. I really hope you get some answers soon, I know this must very hard for you all.

 

[anonymous]

Best Wishes to you and your son Laura. I really hope you get some answers soon, I know this must very hard for you all.

 

[anonymous]

Laura,

So sorry for you and your son. Are you near a CF clinic? (cff.org lists locations) Even if you are not near a clinic, you can try to call and speak to someone. Tell them about the borderline result. At our clinic in Chicago, our nurse practitioner told me that they genetically test any child who has a borderline result and is showing symptoms.

Also has your son ever had a throat culture done? CF patients get cultured often because they tend to harbor certain bacteria in their lungs. A throat culture that is positive for pseudomonas is a strong indicator of CF.

Along with the borderline result, your son has respiratory symptoms, diabetes, nasal polyps, weight loss, how much more evidence does the doctor need for further testing? If the end result is negative for cf the doctor loses nothing. But if your son does have cf, and he goes on without treatment, he is losing so much more.

Could the numbness and weakness be attributed to the diabetes?

Good luck and keep advocating for your son,

Maria (mother of three daughters, the youngest w/cf)

 

[anonymous]

Laura,

So sorry for you and your son. Are you near a CF clinic? (cff.org lists locations) Even if you are not near a clinic, you can try to call and speak to someone. Tell them about the borderline result. At our clinic in Chicago, our nurse practitioner told me that they genetically test any child who has a borderline result and is showing symptoms.

Also has your son ever had a throat culture done? CF patients get cultured often because they tend to harbor certain bacteria in their lungs. A throat culture that is positive for pseudomonas is a strong indicator of CF.

Along with the borderline result, your son has respiratory symptoms, diabetes, nasal polyps, weight loss, how much more evidence does the doctor need for further testing? If the end result is negative for cf the doctor loses nothing. But if your son does have cf, and he goes on without treatment, he is losing so much more.

Could the numbness and weakness be attributed to the diabetes?

Good luck and keep advocating for your son,

Maria (mother of three daughters, the youngest w/cf)

 

[anonymous]

Hi,

Yes, I looked at the cff website and we are near a cf clinic. I am going to call in the morning. I'm just hoping to have the ped refer us in that direction so he's in the loop.

We have no answers for his neurologic problems. He has had headaches every day for over a year and raised intracranial pressure. We don't think his numbness/weakness are from diabetes since he has only had it for a little over 2 years and it is fairly well controlled. Every doctor we have seen says they're "stumped". Boy do I hate that word!<img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks, Laura

 

[anonymous]

Hi,

Yes, I looked at the cff website and we are near a cf clinic. I am going to call in the morning. I'm just hoping to have the ped refer us in that direction so he's in the loop.

We have no answers for his neurologic problems. He has had headaches every day for over a year and raised intracranial pressure. We don't think his numbness/weakness are from diabetes since he has only had it for a little over 2 years and it is fairly well controlled. Every doctor we have seen says they're "stumped". Boy do I hate that word!<img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks, Laura

 

[anonymous]

Hi Laura,

I was just wondering if you had the opportunity to talk to the CF clinic. If you did, how did it go?

Maria

 

[anonymous]

Hi Laura,

I was just wondering if you had the opportunity to talk to the CF clinic. If you did, how did it go?

Maria

 

[anonymous]

Hi,

Thanks for asking. I called and they said he should have another sweat test at their facility because it is more conclusive. It would be nice to know one way or the other rather than a big maybe <img src="i/expressions/face-icon-small-wink.gif" border="0"> This message board is so great with so much information. I don't know if cf is the answer to my son's medical problems, but it sure has been a nice place to get info.

Thanks again, Laura

 

[anonymous]

Hi,

Thanks for asking. I called and they said he should have another sweat test at their facility because it is more conclusive. It would be nice to know one way or the other rather than a big maybe <img src="i/expressions/face-icon-small-wink.gif" border="0"> This message board is so great with so much information. I don't know if cf is the answer to my son's medical problems, but it sure has been a nice place to get info.

Thanks again, Laura

 

[JazzysMom]

I definitely would mention the neurological problems also. You never know what might click for them in possibilities! Good Luck & keep us posted!

 

[JazzysMom]

I definitely would mention the neurological problems also. You never know what might click for them in possibilities! Good Luck & keep us posted!

 

[hhhhhmom]

Hi,

Thanks for the posts. We are going (hopefully tomorrow) to have the sweat test done at a cf place.

Another question, are ear infections a problem related to cf?

Thanks,

 

[hhhhhmom]

Hi,

Thanks for the posts. We are going (hopefully tomorrow) to have the sweat test done at a cf place.

Another question, are ear infections a problem related to cf?

Thanks,