Nasal congestion question

Justinsmom · Nov 9, 2011

Hi,
 
My 7 year old son is going through the process of being diagnosed. He has minimal pancreatic function (fecal elastase was down to 25, stopped checking) and is on enzymes now. One "rare" mutation was found, but we will be repeated with Ambry to look for the second. We will see the CF clinic at CHOP in late November. My question is, for the past month or so, he has had "cold symptoms". It started with what I thought was an asthma cough (responded to inhaler) but his ped said his lungs sounded fine. This lasted about two weeks or so with two "major" coughing episodes. The pulmonolost nurse thought maybe post nasal drip was causing it. He then started with runny nose and congestion that turned thick and yellowish. He has had this part almost three weeks. It has been over a month in total. Still coughing somewhat when running around and still the thick nasal mucus. Does this sound like a "normal cold" or something CF related? He has mild asthma treated by singular and occassional inhaler. We have an appointment with ped on Friday but just curous if anyone else has had a similar experience. His pancreatic issues came on so quickly (drop from fecal elastase level of 148 to 25 within 5 1/2 months) that any changes scare me. His body mass index dropped below 3% before his regular GI realized that there was truly something wrong with him. 
 
Thank you in advance.
 
Josette in PA

Justinsmom · Nov 9, 2011

Hi,

My 7 year old son is going through the process of being diagnosed. He has minimal pancreatic function (fecal elastase was down to 25, stopped checking) and is on enzymes now. One "rare" mutation was found, but we will be repeated with Ambry to look for the second. We will see the CF clinic at CHOP in late November. My question is, for the past month or so, he has had "cold symptoms". It started with what I thought was an asthma cough (responded to inhaler) but his ped said his lungs sounded fine. This lasted about two weeks or so with two "major" coughing episodes. The pulmonolost nurse thought maybe post nasal drip was causing it. He then started with runny nose and congestion that turned thick and yellowish. He has had this part almost three weeks. It has been over a month in total. Still coughing somewhat when running around and still the thick nasal mucus. Does this sound like a "normal cold" or something CF related? He has mild asthma treated by singular and occassional inhaler. We have an appointment with ped on Friday but just curous if anyone else has had a similar experience. His pancreatic issues came on so quickly (drop from fecal elastase level of 148 to 25 within 5 1/2 months) that any changes scare me. His body mass index dropped below 3% before his regular GI realized that there was truly something wrong with him. 

Thank you in advance.

Josette in PA

Justinsmom · Nov 9, 2011

Hi,

My 7 year old son is going through the process of being diagnosed. He has minimal pancreatic function (fecal elastase was down to 25, stopped checking) and is on enzymes now. One "rare" mutation was found, but we will be repeated with Ambry to look for the second. We will see the CF clinic at CHOP in late November. My question is, for the past month or so, he has had "cold symptoms". It started with what I thought was an asthma cough (responded to inhaler) but his ped said his lungs sounded fine. This lasted about two weeks or so with two "major" coughing episodes. The pulmonolost nurse thought maybe post nasal drip was causing it. He then started with runny nose and congestion that turned thick and yellowish. He has had this part almost three weeks. It has been over a month in total. Still coughing somewhat when running around and still the thick nasal mucus. Does this sound like a "normal cold" or something CF related? He has mild asthma treated by singular and occassional inhaler. We have an appointment with ped on Friday but just curous if anyone else has had a similar experience. His pancreatic issues came on so quickly (drop from fecal elastase level of 148 to 25 within 5 1/2 months) that any changes scare me. His body mass index dropped below 3% before his regular GI realized that there was truly something wrong with him. 

Thank you in advance.

Josette in PA

Ratatosk · Nov 9, 2011

DS has such thick nasal mucus that his nose never runs. It does sound like he could have a sinus infection based on the yellowish color. Are you able to get him to do sinus rinses? We do that with DS when he seems to have issues. He was 4 years old when we started doing them -- just get the sinus rinse kits from the drug store. DS loved grossing me out with all the stuff that came out of his nose.

As for the cough -- is it a throat clearing type cough or is more chesty or bronchial? DS baseline is no cough; however, I once had a local cf doctor tell me that "they cough it's what they do" -- turns out he had bronchitis. DS also had a dry, throat clearing cough that sounded like a nervous tick -- turned out he was culturing steno. maltophilia. Regular peds aren't as experienced with CF and don't know what to listen for -- I can't tell you many times when DS was a baby that we were told his lungs sounded clear when he had a horrible productive sounding cough.

Ratatosk · Nov 9, 2011

DS has such thick nasal mucus that his nose never runs. It does sound like he could have a sinus infection based on the yellowish color. Are you able to get him to do sinus rinses? We do that with DS when he seems to have issues. He was 4 years old when we started doing them -- just get the sinus rinse kits from the drug store. DS loved grossing me out with all the stuff that came out of his nose.

As for the cough -- is it a throat clearing type cough or is more chesty or bronchial? DS baseline is no cough; however, I once had a local cf doctor tell me that "they cough it's what they do" -- turns out he had bronchitis. DS also had a dry, throat clearing cough that sounded like a nervous tick -- turned out he was culturing steno. maltophilia. Regular peds aren't as experienced with CF and don't know what to listen for -- I can't tell you many times when DS was a baby that we were told his lungs sounded clear when he had a horrible productive sounding cough.

Ratatosk · Nov 9, 2011

DS has such thick nasal mucus that his nose never runs. It does sound like he could have a sinus infection based on the yellowish color. Are you able to get him to do sinus rinses? We do that with DS when he seems to have issues. He was 4 years old when we started doing them -- just get the sinus rinse kits from the drug store. DS loved grossing me out with all the stuff that came out of his nose.
 
 As for the cough -- is it a throat clearing type cough or is more chesty or bronchial? DS baseline is no cough; however, I once had a local cf doctor tell me that "they cough it's what they do" -- turns out he had bronchitis. DS also had a dry, throat clearing cough that sounded like a nervous tick -- turned out he was culturing steno. maltophilia. Regular peds aren't as experienced with CF and don't know what to listen for -- I can't tell you many times when DS was a baby that we were told his lungs sounded clear when he had a horrible productive sounding cough.

xin · Nov 20, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Justinsmom

Hi,

The pulmonolost nurse thought maybe post nasal drip was causing it. He then started with runny nose and congestion that turned thick and yellowish. He has had this part almost three weeks. It has been over a month in total. Still coughing somewhat when running around and still the thick nasal mucus. Does this sound like a "normal cold" or something CF related? </end quote> It certainly could be CF related. One of my primary symptoms has always been sinusitis and post-nasal drip. I treat it with a daily saline nasal rinse, followed by a steroid nasal spray (Nasonex). Plenty of fluids and exercise are also important. On top of that, if your child has allergies, treat 'em aggressively. But I'm not a medical pro. These anecdotes and suggestions are based on my own experiences. Get with an ENT doc, and come up with a plan of attack for your unique situation.

xin · Nov 20, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Justinsmom

Hi,

The pulmonolost nurse thought maybe post nasal drip was causing it. He then started with runny nose and congestion that turned thick and yellowish. He has had this part almost three weeks. It has been over a month in total. Still coughing somewhat when running around and still the thick nasal mucus. Does this sound like a "normal cold" or something CF related? </end quote> It certainly could be CF related. One of my primary symptoms has always been sinusitis and post-nasal drip. I treat it with a daily saline nasal rinse, followed by a steroid nasal spray (Nasonex). Plenty of fluids and exercise are also important. On top of that, if your child has allergies, treat 'em aggressively. But I'm not a medical pro. These anecdotes and suggestions are based on my own experiences. Get with an ENT doc, and come up with a plan of attack for your unique situation.

xin · Nov 20, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Justinsmom

Hi,

The pulmonolost nurse thought maybe post nasal drip was causing it. He then started with runny nose and congestion that turned thick and yellowish. He has had this part almost three weeks. It has been over a month in total. Still coughing somewhat when running around and still the thick nasal mucus. Does this sound like a "normal cold" or something CF related? </end quote> It certainly could be CF related. One of my primary symptoms has always been sinusitis and post-nasal drip. I treat it with a daily saline nasal rinse, followed by a steroid nasal spray (Nasonex). Plenty of fluids and exercise are also important. On top of that, if your child has allergies, treat 'em aggressively. But I'm not a medical pro. These anecdotes and suggestions are based on my own experiences. Get with an ENT doc, and come up with a plan of attack for your unique situation.

Nasal congestion question

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