Anyone dx with no respiratory symptoms?

M

mythernal

New member
My one year old has always had trouble gaining weight and FTT. She was born around 50 percentile but fell off the charts around 3 months. Now she's 14 pounds. She had a hole in the heart which is why they told us she was so small. But that has healed with medication and she is still not gaining. She also had a milk allergy but even off the milk she still isn't gaining. She has never had any respiratory symptoms which I thought was the most common thing with CF. She does cough or gag sometimes, especially while eating, but she also has reflux and dysphagia (uncoordinated swallow reflex) so I always blamed that. This makes it sound like she has a lot of problems, but she is actually a smart happy baby and meets all her milestones, even ahead of some.

We are about to repeat her sweat chloride test. She had one before around 9 months old that came back "insufficient" as in, she did not sweat enough for them to get a reading. Her newborn screening was also negative for CF. We have no family history of it that I know of. The ped said it was unlikely she had CF so never sent us to repeat the test until now. I am wondering if anyone or their child has been diagnosed with CF and never had respiratory symptoms? She was on Synagis all winter for the heart so maybe that helped her not to get sick. I am driving myself crazy wondering and torturing myself thinking "Well she loves salty snacks, maybe she does have it!" Is the doctor just grasping at straws?
 
M

mythernal

New member
My one year old has always had trouble gaining weight and FTT. She was born around 50 percentile but fell off the charts around 3 months. Now she's 14 pounds. She had a hole in the heart which is why they told us she was so small. But that has healed with medication and she is still not gaining. She also had a milk allergy but even off the milk she still isn't gaining. She has never had any respiratory symptoms which I thought was the most common thing with CF. She does cough or gag sometimes, especially while eating, but she also has reflux and dysphagia (uncoordinated swallow reflex) so I always blamed that. This makes it sound like she has a lot of problems, but she is actually a smart happy baby and meets all her milestones, even ahead of some.

We are about to repeat her sweat chloride test. She had one before around 9 months old that came back "insufficient" as in, she did not sweat enough for them to get a reading. Her newborn screening was also negative for CF. We have no family history of it that I know of. The ped said it was unlikely she had CF so never sent us to repeat the test until now. I am wondering if anyone or their child has been diagnosed with CF and never had respiratory symptoms? She was on Synagis all winter for the heart so maybe that helped her not to get sick. I am driving myself crazy wondering and torturing myself thinking "Well she loves salty snacks, maybe she does have it!" Is the doctor just grasping at straws?
 
M

mythernal

New member
My one year old has always had trouble gaining weight and FTT. She was born around 50 percentile but fell off the charts around 3 months. Now she's 14 pounds. She had a hole in the heart which is why they told us she was so small. But that has healed with medication and she is still not gaining. She also had a milk allergy but even off the milk she still isn't gaining. She has never had any respiratory symptoms which I thought was the most common thing with CF. She does cough or gag sometimes, especially while eating, but she also has reflux and dysphagia (uncoordinated swallow reflex) so I always blamed that. This makes it sound like she has a lot of problems, but she is actually a smart happy baby and meets all her milestones, even ahead of some.

We are about to repeat her sweat chloride test. She had one before around 9 months old that came back "insufficient" as in, she did not sweat enough for them to get a reading. Her newborn screening was also negative for CF. We have no family history of it that I know of. The ped said it was unlikely she had CF so never sent us to repeat the test until now. I am wondering if anyone or their child has been diagnosed with CF and never had respiratory symptoms? She was on Synagis all winter for the heart so maybe that helped her not to get sick. I am driving myself crazy wondering and torturing myself thinking "Well she loves salty snacks, maybe she does have it!" Is the doctor just grasping at straws?
 
M

mythernal

New member
My one year old has always had trouble gaining weight and FTT. She was born around 50 percentile but fell off the charts around 3 months. Now she's 14 pounds. She had a hole in the heart which is why they told us she was so small. But that has healed with medication and she is still not gaining. She also had a milk allergy but even off the milk she still isn't gaining. She has never had any respiratory symptoms which I thought was the most common thing with CF. She does cough or gag sometimes, especially while eating, but she also has reflux and dysphagia (uncoordinated swallow reflex) so I always blamed that. This makes it sound like she has a lot of problems, but she is actually a smart happy baby and meets all her milestones, even ahead of some.

We are about to repeat her sweat chloride test. She had one before around 9 months old that came back "insufficient" as in, she did not sweat enough for them to get a reading. Her newborn screening was also negative for CF. We have no family history of it that I know of. The ped said it was unlikely she had CF so never sent us to repeat the test until now. I am wondering if anyone or their child has been diagnosed with CF and never had respiratory symptoms? She was on Synagis all winter for the heart so maybe that helped her not to get sick. I am driving myself crazy wondering and torturing myself thinking "Well she loves salty snacks, maybe she does have it!" Is the doctor just grasping at straws?
 
M

mythernal

New member
My one year old has always had trouble gaining weight and FTT. She was born around 50 percentile but fell off the charts around 3 months. Now she's 14 pounds. She had a hole in the heart which is why they told us she was so small. But that has healed with medication and she is still not gaining. She also had a milk allergy but even off the milk she still isn't gaining. She has never had any respiratory symptoms which I thought was the most common thing with CF. She does cough or gag sometimes, especially while eating, but she also has reflux and dysphagia (uncoordinated swallow reflex) so I always blamed that. This makes it sound like she has a lot of problems, but she is actually a smart happy baby and meets all her milestones, even ahead of some.
<br />
<br />We are about to repeat her sweat chloride test. She had one before around 9 months old that came back "insufficient" as in, she did not sweat enough for them to get a reading. Her newborn screening was also negative for CF. We have no family history of it that I know of. The ped said it was unlikely she had CF so never sent us to repeat the test until now. I am wondering if anyone or their child has been diagnosed with CF and never had respiratory symptoms? She was on Synagis all winter for the heart so maybe that helped her not to get sick. I am driving myself crazy wondering and torturing myself thinking "Well she loves salty snacks, maybe she does have it!" Is the doctor just grasping at straws?
 
J

JennyCoulon

New member
My oldest son who is now 8 years old was born with meconium elias and has never had any kind of lung symptoms. He is negative for PA but awaiting test culture results from his visit yesterday. My 3 year old also has no lung symptoms. The doctors still have us doing CPT 1 x daily, albuterol 1 x daily, and my 8 year old does Pulmozyme. The doctor has told me that their lung disease is very mild. My oldest PFT's are 104% his highest being last March at 110%. I see it first hand that you can have CF without the lung issues.

I am not saying that they will not have lung issues in the future but as of now they really do not. Hope this helps.
 
J

JennyCoulon

New member
My oldest son who is now 8 years old was born with meconium elias and has never had any kind of lung symptoms. He is negative for PA but awaiting test culture results from his visit yesterday. My 3 year old also has no lung symptoms. The doctors still have us doing CPT 1 x daily, albuterol 1 x daily, and my 8 year old does Pulmozyme. The doctor has told me that their lung disease is very mild. My oldest PFT's are 104% his highest being last March at 110%. I see it first hand that you can have CF without the lung issues.

I am not saying that they will not have lung issues in the future but as of now they really do not. Hope this helps.
 
J

JennyCoulon

New member
My oldest son who is now 8 years old was born with meconium elias and has never had any kind of lung symptoms. He is negative for PA but awaiting test culture results from his visit yesterday. My 3 year old also has no lung symptoms. The doctors still have us doing CPT 1 x daily, albuterol 1 x daily, and my 8 year old does Pulmozyme. The doctor has told me that their lung disease is very mild. My oldest PFT's are 104% his highest being last March at 110%. I see it first hand that you can have CF without the lung issues.

I am not saying that they will not have lung issues in the future but as of now they really do not. Hope this helps.
 
J

JennyCoulon

New member
My oldest son who is now 8 years old was born with meconium elias and has never had any kind of lung symptoms. He is negative for PA but awaiting test culture results from his visit yesterday. My 3 year old also has no lung symptoms. The doctors still have us doing CPT 1 x daily, albuterol 1 x daily, and my 8 year old does Pulmozyme. The doctor has told me that their lung disease is very mild. My oldest PFT's are 104% his highest being last March at 110%. I see it first hand that you can have CF without the lung issues.

I am not saying that they will not have lung issues in the future but as of now they really do not. Hope this helps.
 
J

JennyCoulon

New member
My oldest son who is now 8 years old was born with meconium elias and has never had any kind of lung symptoms. He is negative for PA but awaiting test culture results from his visit yesterday. My 3 year old also has no lung symptoms. The doctors still have us doing CPT 1 x daily, albuterol 1 x daily, and my 8 year old does Pulmozyme. The doctor has told me that their lung disease is very mild. My oldest PFT's are 104% his highest being last March at 110%. I see it first hand that you can have CF without the lung issues.
<br />
<br />I am not saying that they will not have lung issues in the future but as of now they really do not. Hope this helps.
 
T

tammykrumrey

Guest
My oldest daughter was diagnosed due to a rectal prolapse. When she turned 14 months old, she weighed about 18-19 pounds, and was starting having a lot of digestive problems. But even with the beginnings of weight loss, she went undiagnosed until she had the prolapse. She had no lung issues at that time. Her lung issues didn't start until she was about 7 years old.

My youngest daughter still has no lung issues that would cause someone to think she has CF, but she has a lot of digestive issues.
 
T

tammykrumrey

Guest
My oldest daughter was diagnosed due to a rectal prolapse. When she turned 14 months old, she weighed about 18-19 pounds, and was starting having a lot of digestive problems. But even with the beginnings of weight loss, she went undiagnosed until she had the prolapse. She had no lung issues at that time. Her lung issues didn't start until she was about 7 years old.

My youngest daughter still has no lung issues that would cause someone to think she has CF, but she has a lot of digestive issues.
 
T

tammykrumrey

Guest
My oldest daughter was diagnosed due to a rectal prolapse. When she turned 14 months old, she weighed about 18-19 pounds, and was starting having a lot of digestive problems. But even with the beginnings of weight loss, she went undiagnosed until she had the prolapse. She had no lung issues at that time. Her lung issues didn't start until she was about 7 years old.

My youngest daughter still has no lung issues that would cause someone to think she has CF, but she has a lot of digestive issues.
 
T

tammykrumrey

Guest
My oldest daughter was diagnosed due to a rectal prolapse. When she turned 14 months old, she weighed about 18-19 pounds, and was starting having a lot of digestive problems. But even with the beginnings of weight loss, she went undiagnosed until she had the prolapse. She had no lung issues at that time. Her lung issues didn't start until she was about 7 years old.

My youngest daughter still has no lung issues that would cause someone to think she has CF, but she has a lot of digestive issues.
 
T

tammykrumrey

Guest
My oldest daughter was diagnosed due to a rectal prolapse. When she turned 14 months old, she weighed about 18-19 pounds, and was starting having a lot of digestive problems. But even with the beginnings of weight loss, she went undiagnosed until she had the prolapse. She had no lung issues at that time. Her lung issues didn't start until she was about 7 years old.
<br />
<br />My youngest daughter still has no lung issues that would cause someone to think she has CF, but she has a lot of digestive issues.
 
M

Mommafirst

Guest
I actually think you have an awesome doctor who is covering all bases. CF can absolutely present for years (and for some even longer) with no lung symptoms. My daughter has none.

I have read that false negatives on the newborn screen are virtually unheard of, but ANYTHING is possible. I hope its not CF, but if it is, you can thank your persistent doctor for getting her care before irreversible lung damage begins.
 
M

Mommafirst

Guest
I actually think you have an awesome doctor who is covering all bases. CF can absolutely present for years (and for some even longer) with no lung symptoms. My daughter has none.

I have read that false negatives on the newborn screen are virtually unheard of, but ANYTHING is possible. I hope its not CF, but if it is, you can thank your persistent doctor for getting her care before irreversible lung damage begins.
 
M

Mommafirst

Guest
I actually think you have an awesome doctor who is covering all bases. CF can absolutely present for years (and for some even longer) with no lung symptoms. My daughter has none.

I have read that false negatives on the newborn screen are virtually unheard of, but ANYTHING is possible. I hope its not CF, but if it is, you can thank your persistent doctor for getting her care before irreversible lung damage begins.
 
M

Mommafirst

Guest
I actually think you have an awesome doctor who is covering all bases. CF can absolutely present for years (and for some even longer) with no lung symptoms. My daughter has none.

I have read that false negatives on the newborn screen are virtually unheard of, but ANYTHING is possible. I hope its not CF, but if it is, you can thank your persistent doctor for getting her care before irreversible lung damage begins.
 
M

Mommafirst

Guest
I actually think you have an awesome doctor who is covering all bases. CF can absolutely present for years (and for some even longer) with no lung symptoms. My daughter has none.
<br />
<br />I have read that false negatives on the newborn screen are virtually unheard of, but ANYTHING is possible. I hope its not CF, but if it is, you can thank your persistent doctor for getting her care before irreversible lung damage begins.
 
You must log in or register to reply here.
Top