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CarrieBear
12-11-2006, 06:59 PM
Hi everyone. I have posted here before in the Springtime. At the time my daughter was about 4 months old and was coughing terribly since she was at least one month old. I scheduled an appointment with a Pulminologist (which took 4 months to see him) By the time my daughter saw him in September she had a month of no coughing. I thought she might be better. He did a sweat test which came back negative and that was that. Well, since then her cough has come back. She is coughing terribly. It is affecting her sleep. She will have big coughing spells which sound like she is about to cough up a lung. It is not normal. It is not related to a cold. It is worse when she is moving around or laying down, say for her nap or to sleep. The weird thing is (which is why I am posting) is that when I took her to see her pediatrician, he says that she is not wheezing. When she goes into a coughing fit, albeutorol helps relieve her symptoms. The doctor seems to think that it is not asthma because no wheezing and because she is so young and has been having these symptoms all along. But now I am confused because I don't understand why the med would be helping her if it is not something going on with her lungs. Has anyone experienced anything like this? I saw a doctor last week (second opinion) who gave her prescriptions for inhalers and says she needs to see the specialist again. I am wondering if I should pursue more CF testing or if the wheezing thing means that is not it. Does anybody have a clue what might be going on or had a similar experience?

Thanks,
Carrie

CarrieBear
12-11-2006, 06:59 PM
Hi everyone. I have posted here before in the Springtime. At the time my daughter was about 4 months old and was coughing terribly since she was at least one month old. I scheduled an appointment with a Pulminologist (which took 4 months to see him) By the time my daughter saw him in September she had a month of no coughing. I thought she might be better. He did a sweat test which came back negative and that was that. Well, since then her cough has come back. She is coughing terribly. It is affecting her sleep. She will have big coughing spells which sound like she is about to cough up a lung. It is not normal. It is not related to a cold. It is worse when she is moving around or laying down, say for her nap or to sleep. The weird thing is (which is why I am posting) is that when I took her to see her pediatrician, he says that she is not wheezing. When she goes into a coughing fit, albeutorol helps relieve her symptoms. The doctor seems to think that it is not asthma because no wheezing and because she is so young and has been having these symptoms all along. But now I am confused because I don't understand why the med would be helping her if it is not something going on with her lungs. Has anyone experienced anything like this? I saw a doctor last week (second opinion) who gave her prescriptions for inhalers and says she needs to see the specialist again. I am wondering if I should pursue more CF testing or if the wheezing thing means that is not it. Does anybody have a clue what might be going on or had a similar experience?

Thanks,
Carrie

CarrieBear
12-11-2006, 06:59 PM
Hi everyone. I have posted here before in the Springtime. At the time my daughter was about 4 months old and was coughing terribly since she was at least one month old. I scheduled an appointment with a Pulminologist (which took 4 months to see him) By the time my daughter saw him in September she had a month of no coughing. I thought she might be better. He did a sweat test which came back negative and that was that. Well, since then her cough has come back. She is coughing terribly. It is affecting her sleep. She will have big coughing spells which sound like she is about to cough up a lung. It is not normal. It is not related to a cold. It is worse when she is moving around or laying down, say for her nap or to sleep. The weird thing is (which is why I am posting) is that when I took her to see her pediatrician, he says that she is not wheezing. When she goes into a coughing fit, albeutorol helps relieve her symptoms. The doctor seems to think that it is not asthma because no wheezing and because she is so young and has been having these symptoms all along. But now I am confused because I don't understand why the med would be helping her if it is not something going on with her lungs. Has anyone experienced anything like this? I saw a doctor last week (second opinion) who gave her prescriptions for inhalers and says she needs to see the specialist again. I am wondering if I should pursue more CF testing or if the wheezing thing means that is not it. Does anybody have a clue what might be going on or had a similar experience?

Thanks,
Carrie

JazzysMom
12-11-2006, 11:33 PM
Has she been tested for allergies? I dont remember your springtime post so please refresh my memory....does she have any other symptoms or problems besides the cough?

JazzysMom
12-11-2006, 11:33 PM
Has she been tested for allergies? I dont remember your springtime post so please refresh my memory....does she have any other symptoms or problems besides the cough?

JazzysMom
12-11-2006, 11:33 PM
Has she been tested for allergies? I dont remember your springtime post so please refresh my memory....does she have any other symptoms or problems besides the cough?

Momto3
12-12-2006, 12:00 PM
Actually, <b>cough is the #1 symptom </b>of asthma, not wheezing. Very common misconception among many. I'd go back to your pulmonologist. At your DD's age, there are so many different things that could be causing the cough, not just cf. Asthma, GERD (reflux), aspiration, food allergies (milk, soy are very common if she's on formula. If you're nursing, it could be something in your diet.) Those are the 4 areas I'd persue first since she had a negative sweat chloride. If those are all negative, then look into immune deficiencies and possibly genetic testing for CF. Hope that helps.

Edited to say that response to the albuterol is a good indicator (in my non-professional opinion) that she at least has asthmatic tendencies. Honestly, I'd probably want to persue at least GERD, asthma, and food allergies since it's possible to have none, one, or more, even all three of those.

Momto3
12-12-2006, 12:00 PM
Actually, <b>cough is the #1 symptom </b>of asthma, not wheezing. Very common misconception among many. I'd go back to your pulmonologist. At your DD's age, there are so many different things that could be causing the cough, not just cf. Asthma, GERD (reflux), aspiration, food allergies (milk, soy are very common if she's on formula. If you're nursing, it could be something in your diet.) Those are the 4 areas I'd persue first since she had a negative sweat chloride. If those are all negative, then look into immune deficiencies and possibly genetic testing for CF. Hope that helps.

Edited to say that response to the albuterol is a good indicator (in my non-professional opinion) that she at least has asthmatic tendencies. Honestly, I'd probably want to persue at least GERD, asthma, and food allergies since it's possible to have none, one, or more, even all three of those.

Momto3
12-12-2006, 12:00 PM
Actually, <b>cough is the #1 symptom </b>of asthma, not wheezing. Very common misconception among many. I'd go back to your pulmonologist. At your DD's age, there are so many different things that could be causing the cough, not just cf. Asthma, GERD (reflux), aspiration, food allergies (milk, soy are very common if she's on formula. If you're nursing, it could be something in your diet.) Those are the 4 areas I'd persue first since she had a negative sweat chloride. If those are all negative, then look into immune deficiencies and possibly genetic testing for CF. Hope that helps.

Edited to say that response to the albuterol is a good indicator (in my non-professional opinion) that she at least has asthmatic tendencies. Honestly, I'd probably want to persue at least GERD, asthma, and food allergies since it's possible to have none, one, or more, even all three of those.

PinkRaysOfSunshine
12-15-2006, 09:43 PM
Does she have any digestive problems?
I know Arionna had a psedomonas infection in her lungs for like over a month and i kept takin her to the cf clinic over and over and i told them its worse at night.. like to the point that she CANT SLEEP and they said that it was reflux..... put her on meds..... made her sleep sittin up.. etc..... didnt work.. she only got worse....... she lost a lb....... just about smothered to death..... and i was about to flog a bunch of doctors before they figured out what was wrong....... if u think its cf... demand more testing.. YOU ARE HER MOTHER! u may not have the white lab coat...... but you know more about your daughter than anyone else ever will! but see if it might be reflux..... sis takes zantac..... its not so bad...... and reglan....

PinkRaysOfSunshine
12-15-2006, 09:43 PM
Does she have any digestive problems?
I know Arionna had a psedomonas infection in her lungs for like over a month and i kept takin her to the cf clinic over and over and i told them its worse at night.. like to the point that she CANT SLEEP and they said that it was reflux..... put her on meds..... made her sleep sittin up.. etc..... didnt work.. she only got worse....... she lost a lb....... just about smothered to death..... and i was about to flog a bunch of doctors before they figured out what was wrong....... if u think its cf... demand more testing.. YOU ARE HER MOTHER! u may not have the white lab coat...... but you know more about your daughter than anyone else ever will! but see if it might be reflux..... sis takes zantac..... its not so bad...... and reglan....

PinkRaysOfSunshine
12-15-2006, 09:43 PM
Does she have any digestive problems?
I know Arionna had a psedomonas infection in her lungs for like over a month and i kept takin her to the cf clinic over and over and i told them its worse at night.. like to the point that she CANT SLEEP and they said that it was reflux..... put her on meds..... made her sleep sittin up.. etc..... didnt work.. she only got worse....... she lost a lb....... just about smothered to death..... and i was about to flog a bunch of doctors before they figured out what was wrong....... if u think its cf... demand more testing.. YOU ARE HER MOTHER! u may not have the white lab coat...... but you know more about your daughter than anyone else ever will! but see if it might be reflux..... sis takes zantac..... its not so bad...... and reglan....

mom4holly
12-17-2006, 10:46 PM
My daughter has been coughing for 2 1/2 years now and I have went through all of the testing and we just finished our 2nd sweat test--how low were the sweat test? Is she taking treatments?

I hope that she gets better soon, I understand that this leads to many sleepless nights for mommy and baby=(

mom4holly
12-17-2006, 10:46 PM
My daughter has been coughing for 2 1/2 years now and I have went through all of the testing and we just finished our 2nd sweat test--how low were the sweat test? Is she taking treatments?

I hope that she gets better soon, I understand that this leads to many sleepless nights for mommy and baby=(

mom4holly
12-17-2006, 10:46 PM
My daughter has been coughing for 2 1/2 years now and I have went through all of the testing and we just finished our 2nd sweat test--how low were the sweat test? Is she taking treatments?

I hope that she gets better soon, I understand that this leads to many sleepless nights for mommy and baby=(

anonymous
12-18-2006, 06:49 PM
I would have her tested again. Better safe than sorry. Also, regardless of what the diagnosis is she needs relief from the cough, and you need to know for sure. Our first sweet test and the second were inconclusive. I would defintely test again.

Dad(twins boys with CF)

anonymous
12-18-2006, 06:49 PM
I would have her tested again. Better safe than sorry. Also, regardless of what the diagnosis is she needs relief from the cough, and you need to know for sure. Our first sweet test and the second were inconclusive. I would defintely test again.

Dad(twins boys with CF)

anonymous
12-18-2006, 06:49 PM
I would have her tested again. Better safe than sorry. Also, regardless of what the diagnosis is she needs relief from the cough, and you need to know for sure. Our first sweet test and the second were inconclusive. I would defintely test again.

Dad(twins boys with CF)