any thoughts on this please?

tdubb

New member
My daughter is 7 and when she was about 2 she was diagnosed with 'asthma' also since she was a baby she's had major problems going #2. She was prescribed miralax at age 2 and has been on it ever since. We can't even try to taper her off or she gets completely backed up. For the last 2 years she's had a cough that will not go away. I kept taking her in to the dr and they kept trying different combos of meds and nothing worked, nothing would get rid of this cough. They gave her an allergy test about a yr and half ago which was negative.

finally we found a dr who seems to want to figure out what's going on with her. he sent us to an allergy specialist who did a lung function test. Her lower lungs were at 55% he also did another allergy test (50 different things) and everything came up negative again. This is when he ordered the sweat test. We had it done yesterday at a local hospital. I called today to get the results and the nurse told me that she's normal. I asked her what the number was, she said 59!! I told her that I had read on ALL the cf websites that 40-59 is BORDERLINE not 'normal'. not to mention that 59 is very high, one more number higher and she would be practically diagnosed. Needless to say I'm pretty upset about this. I want to speak to the dr and see what he says.

I feel very strongly about getting further testing done. I'm so worried that if in fact this is what she has then that means she's had it now for years. which means that her lungs could have tissue damage.

btw her cough and bowel problems are not the only symptoms. She has lots of sinus infections, skinny and doesn't gain weight, sleeps a lot- and again- a cough for TWO YEARS!

I'm sorry to go on and on with my first post, I've been reading on here now for a couple weeks and you all seem to have been through so much that I trust your opinions and I just wanted to hear your thoughts.

Thank you in advance
 

tdubb

New member
My daughter is 7 and when she was about 2 she was diagnosed with 'asthma' also since she was a baby she's had major problems going #2. She was prescribed miralax at age 2 and has been on it ever since. We can't even try to taper her off or she gets completely backed up. For the last 2 years she's had a cough that will not go away. I kept taking her in to the dr and they kept trying different combos of meds and nothing worked, nothing would get rid of this cough. They gave her an allergy test about a yr and half ago which was negative.

finally we found a dr who seems to want to figure out what's going on with her. he sent us to an allergy specialist who did a lung function test. Her lower lungs were at 55% he also did another allergy test (50 different things) and everything came up negative again. This is when he ordered the sweat test. We had it done yesterday at a local hospital. I called today to get the results and the nurse told me that she's normal. I asked her what the number was, she said 59!! I told her that I had read on ALL the cf websites that 40-59 is BORDERLINE not 'normal'. not to mention that 59 is very high, one more number higher and she would be practically diagnosed. Needless to say I'm pretty upset about this. I want to speak to the dr and see what he says.

I feel very strongly about getting further testing done. I'm so worried that if in fact this is what she has then that means she's had it now for years. which means that her lungs could have tissue damage.

btw her cough and bowel problems are not the only symptoms. She has lots of sinus infections, skinny and doesn't gain weight, sleeps a lot- and again- a cough for TWO YEARS!

I'm sorry to go on and on with my first post, I've been reading on here now for a couple weeks and you all seem to have been through so much that I trust your opinions and I just wanted to hear your thoughts.

Thank you in advance
 

tdubb

New member
My daughter is 7 and when she was about 2 she was diagnosed with 'asthma' also since she was a baby she's had major problems going #2. She was prescribed miralax at age 2 and has been on it ever since. We can't even try to taper her off or she gets completely backed up. For the last 2 years she's had a cough that will not go away. I kept taking her in to the dr and they kept trying different combos of meds and nothing worked, nothing would get rid of this cough. They gave her an allergy test about a yr and half ago which was negative.

finally we found a dr who seems to want to figure out what's going on with her. he sent us to an allergy specialist who did a lung function test. Her lower lungs were at 55% he also did another allergy test (50 different things) and everything came up negative again. This is when he ordered the sweat test. We had it done yesterday at a local hospital. I called today to get the results and the nurse told me that she's normal. I asked her what the number was, she said 59!! I told her that I had read on ALL the cf websites that 40-59 is BORDERLINE not 'normal'. not to mention that 59 is very high, one more number higher and she would be practically diagnosed. Needless to say I'm pretty upset about this. I want to speak to the dr and see what he says.

I feel very strongly about getting further testing done. I'm so worried that if in fact this is what she has then that means she's had it now for years. which means that her lungs could have tissue damage.

btw her cough and bowel problems are not the only symptoms. She has lots of sinus infections, skinny and doesn't gain weight, sleeps a lot- and again- a cough for TWO YEARS!

I'm sorry to go on and on with my first post, I've been reading on here now for a couple weeks and you all seem to have been through so much that I trust your opinions and I just wanted to hear your thoughts.

Thank you in advance
 

tdubb

New member
My daughter is 7 and when she was about 2 she was diagnosed with 'asthma' also since she was a baby she's had major problems going #2. She was prescribed miralax at age 2 and has been on it ever since. We can't even try to taper her off or she gets completely backed up. For the last 2 years she's had a cough that will not go away. I kept taking her in to the dr and they kept trying different combos of meds and nothing worked, nothing would get rid of this cough. They gave her an allergy test about a yr and half ago which was negative.

finally we found a dr who seems to want to figure out what's going on with her. he sent us to an allergy specialist who did a lung function test. Her lower lungs were at 55% he also did another allergy test (50 different things) and everything came up negative again. This is when he ordered the sweat test. We had it done yesterday at a local hospital. I called today to get the results and the nurse told me that she's normal. I asked her what the number was, she said 59!! I told her that I had read on ALL the cf websites that 40-59 is BORDERLINE not 'normal'. not to mention that 59 is very high, one more number higher and she would be practically diagnosed. Needless to say I'm pretty upset about this. I want to speak to the dr and see what he says.

I feel very strongly about getting further testing done. I'm so worried that if in fact this is what she has then that means she's had it now for years. which means that her lungs could have tissue damage.

btw her cough and bowel problems are not the only symptoms. She has lots of sinus infections, skinny and doesn't gain weight, sleeps a lot- and again- a cough for TWO YEARS!

I'm sorry to go on and on with my first post, I've been reading on here now for a couple weeks and you all seem to have been through so much that I trust your opinions and I just wanted to hear your thoughts.

Thank you in advance
 

tdubb

New member
My daughter is 7 and when she was about 2 she was diagnosed with 'asthma' also since she was a baby she's had major problems going #2. She was prescribed miralax at age 2 and has been on it ever since. We can't even try to taper her off or she gets completely backed up. For the last 2 years she's had a cough that will not go away. I kept taking her in to the dr and they kept trying different combos of meds and nothing worked, nothing would get rid of this cough. They gave her an allergy test about a yr and half ago which was negative.
<br />
<br />finally we found a dr who seems to want to figure out what's going on with her. he sent us to an allergy specialist who did a lung function test. Her lower lungs were at 55% he also did another allergy test (50 different things) and everything came up negative again. This is when he ordered the sweat test. We had it done yesterday at a local hospital. I called today to get the results and the nurse told me that she's normal. I asked her what the number was, she said 59!! I told her that I had read on ALL the cf websites that 40-59 is BORDERLINE not 'normal'. not to mention that 59 is very high, one more number higher and she would be practically diagnosed. Needless to say I'm pretty upset about this. I want to speak to the dr and see what he says.
<br />
<br />I feel very strongly about getting further testing done. I'm so worried that if in fact this is what she has then that means she's had it now for years. which means that her lungs could have tissue damage.
<br />
<br />btw her cough and bowel problems are not the only symptoms. She has lots of sinus infections, skinny and doesn't gain weight, sleeps a lot- and again- a cough for TWO YEARS!
<br />
<br />I'm sorry to go on and on with my first post, I've been reading on here now for a couple weeks and you all seem to have been through so much that I trust your opinions and I just wanted to hear your thoughts.
<br />
<br />Thank you in advance
 

jaimers

Super Moderator
It would probably be a good idea to try and get some genetic testing done. Ideally you want the full ambry panel that tests for 1000+ mutations, unfortunately lots of insurance companies don't like to pay for that one right off the bat but it's the best one to get. hope yall get things figured out! welcome to the site.... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jaimers

Super Moderator
It would probably be a good idea to try and get some genetic testing done. Ideally you want the full ambry panel that tests for 1000+ mutations, unfortunately lots of insurance companies don't like to pay for that one right off the bat but it's the best one to get. hope yall get things figured out! welcome to the site.... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jaimers

Super Moderator
It would probably be a good idea to try and get some genetic testing done. Ideally you want the full ambry panel that tests for 1000+ mutations, unfortunately lots of insurance companies don't like to pay for that one right off the bat but it's the best one to get. hope yall get things figured out! welcome to the site.... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jaimers

Super Moderator
It would probably be a good idea to try and get some genetic testing done. Ideally you want the full ambry panel that tests for 1000+ mutations, unfortunately lots of insurance companies don't like to pay for that one right off the bat but it's the best one to get. hope yall get things figured out! welcome to the site.... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jaimers

Super Moderator
It would probably be a good idea to try and get some genetic testing done. Ideally you want the full ambry panel that tests for 1000+ mutations, unfortunately lots of insurance companies don't like to pay for that one right off the bat but it's the best one to get. hope yall get things figured out! welcome to the site.... <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

Mommafirst

Guest
Sounds like you are a smart mom who knows when its time to fight for your kiddo. You are right a 59 can not in any way shape or form be a decidedly negative result. At best, it was a faulty test done by a non-accredited CF lab. Regardless, you need to get yourself to a CF doctor, not the pedi and you need to get genetics done. Just based on symptoms alone, you should be able to get a referral.

I'm sorry you are dealing with this. Its true she may have some tissue damage, but many are diagnosed much older than 7 and get great results once they begin the proper meds and treatments.

Do keep in mind that PFTs are a learned skill. Some of those low numbers can be a result of just not knowing what to do. I took PFTs for my asthma, and had a 30% FEV1 the first time -- once I learned what I had to do, my FEV1 was well over 110%

Hang in there and keep fighting. ((((hugs))))
 
M

Mommafirst

Guest
Sounds like you are a smart mom who knows when its time to fight for your kiddo. You are right a 59 can not in any way shape or form be a decidedly negative result. At best, it was a faulty test done by a non-accredited CF lab. Regardless, you need to get yourself to a CF doctor, not the pedi and you need to get genetics done. Just based on symptoms alone, you should be able to get a referral.

I'm sorry you are dealing with this. Its true she may have some tissue damage, but many are diagnosed much older than 7 and get great results once they begin the proper meds and treatments.

Do keep in mind that PFTs are a learned skill. Some of those low numbers can be a result of just not knowing what to do. I took PFTs for my asthma, and had a 30% FEV1 the first time -- once I learned what I had to do, my FEV1 was well over 110%

Hang in there and keep fighting. ((((hugs))))
 
M

Mommafirst

Guest
Sounds like you are a smart mom who knows when its time to fight for your kiddo. You are right a 59 can not in any way shape or form be a decidedly negative result. At best, it was a faulty test done by a non-accredited CF lab. Regardless, you need to get yourself to a CF doctor, not the pedi and you need to get genetics done. Just based on symptoms alone, you should be able to get a referral.

I'm sorry you are dealing with this. Its true she may have some tissue damage, but many are diagnosed much older than 7 and get great results once they begin the proper meds and treatments.

Do keep in mind that PFTs are a learned skill. Some of those low numbers can be a result of just not knowing what to do. I took PFTs for my asthma, and had a 30% FEV1 the first time -- once I learned what I had to do, my FEV1 was well over 110%

Hang in there and keep fighting. ((((hugs))))
 
M

Mommafirst

Guest
Sounds like you are a smart mom who knows when its time to fight for your kiddo. You are right a 59 can not in any way shape or form be a decidedly negative result. At best, it was a faulty test done by a non-accredited CF lab. Regardless, you need to get yourself to a CF doctor, not the pedi and you need to get genetics done. Just based on symptoms alone, you should be able to get a referral.

I'm sorry you are dealing with this. Its true she may have some tissue damage, but many are diagnosed much older than 7 and get great results once they begin the proper meds and treatments.

Do keep in mind that PFTs are a learned skill. Some of those low numbers can be a result of just not knowing what to do. I took PFTs for my asthma, and had a 30% FEV1 the first time -- once I learned what I had to do, my FEV1 was well over 110%

Hang in there and keep fighting. ((((hugs))))
 
M

Mommafirst

Guest
Sounds like you are a smart mom who knows when its time to fight for your kiddo. You are right a 59 can not in any way shape or form be a decidedly negative result. At best, it was a faulty test done by a non-accredited CF lab. Regardless, you need to get yourself to a CF doctor, not the pedi and you need to get genetics done. Just based on symptoms alone, you should be able to get a referral.
<br />
<br />I'm sorry you are dealing with this. Its true she may have some tissue damage, but many are diagnosed much older than 7 and get great results once they begin the proper meds and treatments.
<br />
<br />Do keep in mind that PFTs are a learned skill. Some of those low numbers can be a result of just not knowing what to do. I took PFTs for my asthma, and had a 30% FEV1 the first time -- once I learned what I had to do, my FEV1 was well over 110%
<br />
<br />Hang in there and keep fighting. ((((hugs))))
 

tdubb

New member
Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...
 

tdubb

New member
Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...
 

tdubb

New member
Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...
 

tdubb

New member
Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...
 

tdubb

New member
Thank you both so much, we go to the dr on Monday. I've been allowing the dr's to blow us off for so long, I am not going to allow it anymore. She just got off a strong antibiotic for a bad sinus infection and her cough has continued to get worse. Hopefully with some pushing we can get the tests she needs...
 
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