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confused about symptoms my son is having

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Cystic Fibrosis
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jacobsmom
New Member
Joined : Oct 2006
Posts : 2
Posted 10/12/2006 10:17 AM (GMT -8)
Hi everyone, thank you in advance for any input you can give me!  my son was born 5/23/06.  ever since he was born he has had a flemme sounding cough.  not all the time but it never really goes away.  we notice it more at night and in the morning.  sometimes he sounds rattley in his chest, like he need to cough up something, then some days he is fine, no cough.  He has acid reflux and his gastro doc thought maybe cough was due to that, but he has been on prevacid for 2 months, reflux is alot better but still has the flemme cough.  last friday he coughed up some green stuff and brown stuff once and we took him into his doc again and made them do a chest xray which they said looks like he has bronchitis and put him on antiobotic.  its been a week and his cough is better but not gone.  he hasnt coughed up anything since last friday. our gastro doc said he still thinks the cough may get better in time with the prevacid and didnt want to refer us to a pulmonologist yet.  i said bull, something isnt right no one should have a cough for 4 months, so I made an appt for him at a pulmonologist on oct 24.  other than the cough my son is very happy and healthy.  he is in the 95th percentile for height and weight and has no trouble eating.  Im just very concerned that he may have cf because all the info i read on the internet about chronic cough in an infant lists cystic fibrosis.  is it possible to have cf and still be growing so well?  im just really scared for my son, hopefully i am just overreacting.  thanks again for listening  i appreciate any feedback
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kristins mom
Regular Member
Joined : Sep 2005
Posts : 27
Posted 10/12/2006 11:26 AM (GMT -8)
Hi Jacobsmom- A sweat test (which is simple and painless) could be given just to rule out CF, and then depending on the results, further testing (such as a dna screen) can be done. If possible, it is best to have it done at an accredited CF center. I have found that alot of doctors are unfamiliar with CF and focus on other "causes", but there are many that have some knowledge of CF. In fact, if your son is diagnosed with CF, you can contact the CF center for names of doctors in your area that are experienced with CF patients and usually work closely with the center.
Some CF'rs have no symtoms while others may be severe from birth so yes, it is quite possible for them to grow well, appear healthy, and still have CF. Being a new mother is hard, you experience many concerns and fears that turn out to nothing--however, if you strongly feel that something is wrong, don't let them "convince" you that you are overreacting. While it could be any numerous other things, if it is CF, it is very important to get him under the care of a physician asap. They will start him on a regime that will provide the best chance of maintaining his "base". While CF is scary, each day that passes is one day closer to a cure. Until that day, keeping them in the best health possible is most important.
I pray for you both that the symtoms are a result of something less serious that can be treated or outgrown, but please keep in mind that if he is diagnosed with CF, while life may be different, it will still go on. Taking one day at a time--enjoying today instead of worrying about tomorrow--worked for me. So, welcome to the forum-if you feel the need to talk-vent-cry-etc., you will always find someone here willing to listen, and if you are a CF mom, will find there are alot of us here and we know how you feel & what you're going through. Let us know what they find out.
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jacobsmom
New Member
Joined : Oct 2006
Posts : 2
Posted 10/12/2006 12:20 PM (GMT -8)
thank you for the reply!  how do they do the sweat test?  is it done right in office, and if so are the results immediate?
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kristins mom
Regular Member
Joined : Sep 2005
Posts : 27
Posted 10/13/2006 1:54 PM (GMT -8)
the pedi sent us to the outpatient lab at our local hospital. They applied a solution to her arm (or leg) then attached a small electrode to her arm to make her sweat. Then they collected the sweat with a felt-like pad and measured the amount of chloride in it. It was about 2 hours before they called the results in to her pedi. When the results were positive, he gave us a referral to the cf center for consultation and verification of the test.
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