Just asthma? or could it be CF?

Mommafirst · Oct 19, 2007

I would definitely push for testing!!!! Even one hospitalization for pnuemonia is a lot. My CF daughter hasn't had pneumonia yet. HUGS. You deserve to feel that you have the right diagnosis. Push for the CF testing and if its clear, you can relax. Start with a sweat test, but you may need to have genetic work done to really clear the possibility. Good luck.

Mommafirst · Oct 19, 2007

I would definitely push for testing!!!! Even one hospitalization for pnuemonia is a lot. My CF daughter hasn't had pneumonia yet. HUGS. You deserve to feel that you have the right diagnosis. Push for the CF testing and if its clear, you can relax. Start with a sweat test, but you may need to have genetic work done to really clear the possibility. Good luck.

Mommafirst · Oct 19, 2007

I would definitely push for testing!!!! Even one hospitalization for pnuemonia is a lot. My CF daughter hasn't had pneumonia yet. HUGS. You deserve to feel that you have the right diagnosis. Push for the CF testing and if its clear, you can relax. Start with a sweat test, but you may need to have genetic work done to really clear the possibility. Good luck.

Mommafirst · Oct 19, 2007

I would definitely push for testing!!!! Even one hospitalization for pnuemonia is a lot. My CF daughter hasn't had pneumonia yet. HUGS. You deserve to feel that you have the right diagnosis. Push for the CF testing and if its clear, you can relax. Start with a sweat test, but you may need to have genetic work done to really clear the possibility. Good luck.

Mommafirst · Oct 19, 2007

I would definitely push for testing!!!! Even one hospitalization for pnuemonia is a lot. My CF daughter hasn't had pneumonia yet. HUGS. You deserve to feel that you have the right diagnosis. Push for the CF testing and if its clear, you can relax. Start with a sweat test, but you may need to have genetic work done to really clear the possibility. Good luck.

MYBOY · Oct 19, 2007

PLEASE get him tested. Do the full panel genetic test. Your story sounds alot like my son - spit up alot, didn't sleep well, had bronchitis at 8 weeks and at 6 months old. He probably wouldn't have gotten diagnosed if I didn't take him to the city doctor because my docs wouldn't listen that there was something wrong. The city doc guessed it right away and took us to Children's to run the test and get him over his coughing and bronchietis. He was 6 months old - Ya we were devistated but I would have felt much worse torchoring my kid without the right treatments!

We found out later that my Dad had 2 cousins die of CF when he was only 8 or so. He didn't remember but his older sis did. We have never traced it in my husbands - but his niece got tested and she is a carrier too. So at least they know it's in the family now.

My son has done so good since diagnosis. He is 10 now - very active and mainly has sinus issues. Nasal Polyp surgery 4 times. Good luck and let us know. Remember we have to do everything we can for our kids - don't stop til you get answers and can ease your mind.

MYBOY · Oct 19, 2007

PLEASE get him tested. Do the full panel genetic test. Your story sounds alot like my son - spit up alot, didn't sleep well, had bronchitis at 8 weeks and at 6 months old. He probably wouldn't have gotten diagnosed if I didn't take him to the city doctor because my docs wouldn't listen that there was something wrong. The city doc guessed it right away and took us to Children's to run the test and get him over his coughing and bronchietis. He was 6 months old - Ya we were devistated but I would have felt much worse torchoring my kid without the right treatments!

We found out later that my Dad had 2 cousins die of CF when he was only 8 or so. He didn't remember but his older sis did. We have never traced it in my husbands - but his niece got tested and she is a carrier too. So at least they know it's in the family now.

My son has done so good since diagnosis. He is 10 now - very active and mainly has sinus issues. Nasal Polyp surgery 4 times. Good luck and let us know. Remember we have to do everything we can for our kids - don't stop til you get answers and can ease your mind.

MYBOY · Oct 19, 2007

PLEASE get him tested. Do the full panel genetic test. Your story sounds alot like my son - spit up alot, didn't sleep well, had bronchitis at 8 weeks and at 6 months old. He probably wouldn't have gotten diagnosed if I didn't take him to the city doctor because my docs wouldn't listen that there was something wrong. The city doc guessed it right away and took us to Children's to run the test and get him over his coughing and bronchietis. He was 6 months old - Ya we were devistated but I would have felt much worse torchoring my kid without the right treatments!

We found out later that my Dad had 2 cousins die of CF when he was only 8 or so. He didn't remember but his older sis did. We have never traced it in my husbands - but his niece got tested and she is a carrier too. So at least they know it's in the family now.

My son has done so good since diagnosis. He is 10 now - very active and mainly has sinus issues. Nasal Polyp surgery 4 times. Good luck and let us know. Remember we have to do everything we can for our kids - don't stop til you get answers and can ease your mind.

MYBOY · Oct 19, 2007

PLEASE get him tested. Do the full panel genetic test. Your story sounds alot like my son - spit up alot, didn't sleep well, had bronchitis at 8 weeks and at 6 months old. He probably wouldn't have gotten diagnosed if I didn't take him to the city doctor because my docs wouldn't listen that there was something wrong. The city doc guessed it right away and took us to Children's to run the test and get him over his coughing and bronchietis. He was 6 months old - Ya we were devistated but I would have felt much worse torchoring my kid without the right treatments!

We found out later that my Dad had 2 cousins die of CF when he was only 8 or so. He didn't remember but his older sis did. We have never traced it in my husbands - but his niece got tested and she is a carrier too. So at least they know it's in the family now.

My son has done so good since diagnosis. He is 10 now - very active and mainly has sinus issues. Nasal Polyp surgery 4 times. Good luck and let us know. Remember we have to do everything we can for our kids - don't stop til you get answers and can ease your mind.

MYBOY · Oct 19, 2007

PLEASE get him tested. Do the full panel genetic test. Your story sounds alot like my son - spit up alot, didn't sleep well, had bronchitis at 8 weeks and at 6 months old. He probably wouldn't have gotten diagnosed if I didn't take him to the city doctor because my docs wouldn't listen that there was something wrong. The city doc guessed it right away and took us to Children's to run the test and get him over his coughing and bronchietis. He was 6 months old - Ya we were devistated but I would have felt much worse torchoring my kid without the right treatments!

We found out later that my Dad had 2 cousins die of CF when he was only 8 or so. He didn't remember but his older sis did. We have never traced it in my husbands - but his niece got tested and she is a carrier too. So at least they know it's in the family now.

My son has done so good since diagnosis. He is 10 now - very active and mainly has sinus issues. Nasal Polyp surgery 4 times. Good luck and let us know. Remember we have to do everything we can for our kids - don't stop til you get answers and can ease your mind.

Alyssa · Oct 19, 2007

Ditto to everyone else
1) yep - sounds like CF is a possibility - needs to be checked out
2) nope - not your fault -- doctors should have tested him
3) family history - not important, was kind of a silly thing for the doctor to ask - they know better. More often than not there is no family history.
4) my daughter was misdiagnosed with asthma w/productive cough for 8 years because she has a normal sweat test number
5) yep - many people here have CF and asthma
6) yep - insist on FULL testing. There are 1,541 gene mutations to test for - many doctor's and insurance companies like to start with a test which only looks for 100 or less -- it's a complete waste of time as you will never know for sure unless you test for all of the known genes!

If you do get sweat testing done be sure to ask what the number is, not just positive or negative. Read my blog for more details, the chart says anything under 40 is normal, but many many people here have genetically confirmed CF and have sweat test numbers as low as the teens (most often in the 20's and 30's)

Keep bugging them - sooner or later someone will test him.

Alyssa · Oct 19, 2007

Ditto to everyone else
1) yep - sounds like CF is a possibility - needs to be checked out
2) nope - not your fault -- doctors should have tested him
3) family history - not important, was kind of a silly thing for the doctor to ask - they know better. More often than not there is no family history.
4) my daughter was misdiagnosed with asthma w/productive cough for 8 years because she has a normal sweat test number
5) yep - many people here have CF and asthma
6) yep - insist on FULL testing. There are 1,541 gene mutations to test for - many doctor's and insurance companies like to start with a test which only looks for 100 or less -- it's a complete waste of time as you will never know for sure unless you test for all of the known genes!

If you do get sweat testing done be sure to ask what the number is, not just positive or negative. Read my blog for more details, the chart says anything under 40 is normal, but many many people here have genetically confirmed CF and have sweat test numbers as low as the teens (most often in the 20's and 30's)

Keep bugging them - sooner or later someone will test him.

Alyssa · Oct 19, 2007

Ditto to everyone else
1) yep - sounds like CF is a possibility - needs to be checked out
2) nope - not your fault -- doctors should have tested him
3) family history - not important, was kind of a silly thing for the doctor to ask - they know better. More often than not there is no family history.
4) my daughter was misdiagnosed with asthma w/productive cough for 8 years because she has a normal sweat test number
5) yep - many people here have CF and asthma
6) yep - insist on FULL testing. There are 1,541 gene mutations to test for - many doctor's and insurance companies like to start with a test which only looks for 100 or less -- it's a complete waste of time as you will never know for sure unless you test for all of the known genes!

If you do get sweat testing done be sure to ask what the number is, not just positive or negative. Read my blog for more details, the chart says anything under 40 is normal, but many many people here have genetically confirmed CF and have sweat test numbers as low as the teens (most often in the 20's and 30's)

Keep bugging them - sooner or later someone will test him.

Alyssa · Oct 19, 2007

Ditto to everyone else
1) yep - sounds like CF is a possibility - needs to be checked out
2) nope - not your fault -- doctors should have tested him
3) family history - not important, was kind of a silly thing for the doctor to ask - they know better. More often than not there is no family history.
4) my daughter was misdiagnosed with asthma w/productive cough for 8 years because she has a normal sweat test number
5) yep - many people here have CF and asthma
6) yep - insist on FULL testing. There are 1,541 gene mutations to test for - many doctor's and insurance companies like to start with a test which only looks for 100 or less -- it's a complete waste of time as you will never know for sure unless you test for all of the known genes!

If you do get sweat testing done be sure to ask what the number is, not just positive or negative. Read my blog for more details, the chart says anything under 40 is normal, but many many people here have genetically confirmed CF and have sweat test numbers as low as the teens (most often in the 20's and 30's)

Keep bugging them - sooner or later someone will test him.

Alyssa · Oct 19, 2007

Ditto to everyone else
1) yep - sounds like CF is a possibility - needs to be checked out
2) nope - not your fault -- doctors should have tested him
3) family history - not important, was kind of a silly thing for the doctor to ask - they know better. More often than not there is no family history.
4) my daughter was misdiagnosed with asthma w/productive cough for 8 years because she has a normal sweat test number
5) yep - many people here have CF and asthma
6) yep - insist on FULL testing. There are 1,541 gene mutations to test for - many doctor's and insurance companies like to start with a test which only looks for 100 or less -- it's a complete waste of time as you will never know for sure unless you test for all of the known genes!

If you do get sweat testing done be sure to ask what the number is, not just positive or negative. Read my blog for more details, the chart says anything under 40 is normal, but many many people here have genetically confirmed CF and have sweat test numbers as low as the teens (most often in the 20's and 30's)

Keep bugging them - sooner or later someone will test him.

ginandbrea · Oct 21, 2007

Hi Miranda,

Yes, TELL the Dr. to do the tests. My daughter is 9 and has suffered for 7 years being told she has asthma. Because my husband is Active Duty Military we have to see Military Drs, sometimes thats not such a great thing. I have been telling them there is something wrong more than asthma, they tell me there is not and just continue to change her meds. I visited a civilian Dr 2 weeks ago, never met him before. He evaluated my daughter for 20 minutes or so and ordered a chest XRay. Within 30 minutes the Dr. was convinced my daughter has CF. We did a sweat test and yes, she was diagnosed last week. Good Luck to you!

ginandbrea · Oct 21, 2007

Hi Miranda,

Yes, TELL the Dr. to do the tests. My daughter is 9 and has suffered for 7 years being told she has asthma. Because my husband is Active Duty Military we have to see Military Drs, sometimes thats not such a great thing. I have been telling them there is something wrong more than asthma, they tell me there is not and just continue to change her meds. I visited a civilian Dr 2 weeks ago, never met him before. He evaluated my daughter for 20 minutes or so and ordered a chest XRay. Within 30 minutes the Dr. was convinced my daughter has CF. We did a sweat test and yes, she was diagnosed last week. Good Luck to you!

ginandbrea · Oct 21, 2007

Hi Miranda,

Yes, TELL the Dr. to do the tests. My daughter is 9 and has suffered for 7 years being told she has asthma. Because my husband is Active Duty Military we have to see Military Drs, sometimes thats not such a great thing. I have been telling them there is something wrong more than asthma, they tell me there is not and just continue to change her meds. I visited a civilian Dr 2 weeks ago, never met him before. He evaluated my daughter for 20 minutes or so and ordered a chest XRay. Within 30 minutes the Dr. was convinced my daughter has CF. We did a sweat test and yes, she was diagnosed last week. Good Luck to you!

ginandbrea · Oct 21, 2007

Hi Miranda,

Yes, TELL the Dr. to do the tests. My daughter is 9 and has suffered for 7 years being told she has asthma. Because my husband is Active Duty Military we have to see Military Drs, sometimes thats not such a great thing. I have been telling them there is something wrong more than asthma, they tell me there is not and just continue to change her meds. I visited a civilian Dr 2 weeks ago, never met him before. He evaluated my daughter for 20 minutes or so and ordered a chest XRay. Within 30 minutes the Dr. was convinced my daughter has CF. We did a sweat test and yes, she was diagnosed last week. Good Luck to you!

ginandbrea · Oct 21, 2007

Hi Miranda,

Yes, TELL the Dr. to do the tests. My daughter is 9 and has suffered for 7 years being told she has asthma. Because my husband is Active Duty Military we have to see Military Drs, sometimes thats not such a great thing. I have been telling them there is something wrong more than asthma, they tell me there is not and just continue to change her meds. I visited a civilian Dr 2 weeks ago, never met him before. He evaluated my daughter for 20 minutes or so and ordered a chest XRay. Within 30 minutes the Dr. was convinced my daughter has CF. We did a sweat test and yes, she was diagnosed last week. Good Luck to you!

Just asthma? or could it be CF?

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