Need advice on son's cough-also posted in Adults section

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JennyCoulon

New member
Okay we have a 13 year old son with CF who has mild lung disease that has a cough. We have brought this problem up to the pulmonary clinic when it started out of the blue about 3 years ago. He doesn't cough all of the time but when he is doing soccer or basketball, running or rough housing he coughs. They treated him as though he had allergies but the cough still never went away. The x-rays are good, sputum cultures show nothing, his lungs always sound great and clear, etc. He was put on Singular, Flonase nose spray, Zyrtec, and Advair puffer and he was diagnosed with allergy related asthma. He is on pulmozyme 1 time daily already and they gave him an albuterol inhaler to take with the chamber 15 mins. before doing any vigirous activity. They tried treating it with steroids two seperate times, did a course or two of antibotics and we are still having the same problem. I am wondering if anyone has any thoughts on what could be causing this or maybe any other thoughts on what we can try. We have made an appointment to get a second opinion with a very good internal med doc that has done wonders for my niece but becuase she is so good we can't get in until July 2. Please help, any thoughts would be very much appreciated.
 
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Daverog75

New member
I think that's normal, when he is playing sports the lungs are having to work harder than normal and that can cause some mucus to loosen up. I know when I was first diagnosed the first thing I did was buy an exercise bike, and every time within the first 10 minutes I would have to take a break and cough up a bunch of stuff but once it was out I was fine after that.

Dave,
 
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Twistofchaos

New member
It is possibly entering a new stage in his CF. Could be caused by anything, at 13 he's entering puberty etc.

Some people with CF will just always have a cough.
Myself I've always had a cough from as young as I can remember even when I was mostly clear and healthy.

Conversely the ability to cough and bring out the bad stuff is good and will keep him healthy longer.
Back when segregation wasn't strict and we'd go to CF camps and such.. there was always this feeling that very generally speaking the kids and later adults that you'd barely hear cough were the ones you'd see declining faster.

As mentioned above, exercise and sessions of lungclearing and coughing fits are great at helping prevent stuff getting stuck.
 
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JennyCoulon

New member
He is entering puberty but this started 3 years ago and I am just at a loss. The coughing doesn't stop until after he is done with the game. He doesn't spit anything out and I think a lot of it is drainage. I talked to the pulmonary clinic yesterday and they want him to come in a month earlier so they can check his meds, dosages, PFT's, etc. I was kind of irritated because I am assuming these are all things that they should have 3 years or 12 visits to review since we first reported the problem. I was mad because if they aren't reviewing the "problems/changes" that we have at every 3 month visit then what the hell are we going for? I am just wondering how to stop the drainage? He is on Singular, Zyrtec, and Flonase nose spray. Any other suggestions? Also I am not sure what 25/75 numbers are but his PFT's FEV1 is close to 100 and sometimes over. Thanks in advance for any thoughts.
 
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AleksandraKaczynska

New member
we are having the same problem - however in a more mild version
at our cf meating this monday we had test for allergies - she has none, and so Asia got 20 days of bactrim and Nazonex spray and doing sinus rinces in the morning and after school.
In Januray we had a nasty sinus infection and we all experience problems still. Asia most. The cf doc said it's tipical for her cf mutation and even her coulture is physiological and lung x-ray great - she will need bactrim to strighten out her sinuses. If this doesn't help we must come again and change the treatment.
It seem to work - but very slowly.
maybe this will help you a bit
 
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Justinsmama

New member
Jenny,

Is your son on the saline neb? We were only put on about a month or so ago and I really notice a difference. He was having "bronchospasms" for up to 17 minutes. We also did a week of oral steroid because he was having the spasms just sitting down. Now he still has a cough on exertion and first thing in the morning (ws not baseline until 3 months ago) but it is much better. Is your son's a dry asthma sounding cough or a more productive loose cough. We may add Pulmozyme in addition to saline in June. Another suggestion is could you switch the Advair for Symbicort? I have heard some people do better on one than the other. I know that adding it helps us with our PFT's (his FEV1 on this has gone as high as 108) and helps a little with the bronchospasms (and helps the 25/75 some too - up to about 80). (which I think is similar to My prayers are with you. You are so supportive to everyone on this forum. I understand your frustration and worry. I have the same.
 
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jchelle

New member
get to a specialist... and stop letting them give him that stuff... they did it to me as well and it is a quick fix by docs that dont know much..... im 30 and im not doing to well... if ur in washington go to the childrens hospital in seatlle or marybridge.if not find the best hospital around ur area.......
 
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JENNYC

New member
Jenny I also wanted to add that sinus rinses help greatly with the cough!! Unless he is totally clogged up with polyps...but if not... it gets all the yuck out and will give him a much needed break from the post nasal coughing. At first Abby hated it, but now she will ask me for one. I also commented to your other thread some more useful info.
 
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JennyCoulon

New member
JENNYC: Thanks for reaching out, we are actually going to the CF clinic today at 11:00 for them to do full PFT's with spirometry and also we are going to review the allergy meds he is on and the doses. I actually bought a pulsar sinus rinse last night to see how that works. We have done the squeeze bottle kind before and it seems to go up too far and down his throat which really grosses him out. I will let you know how things go today and I am hoping we can get some answers. I have still kept our second opinion visit for July 2 so we will see what magic the CF clinic can do before then. Thanks again. (The private message isn't working for me for some reason)
 
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LittleLab4CF

Super Moderator
Anybody with a persistent cough should consider having a swallow sequencing test. If sinus discharge and mucus are being aspirated during exercise it is easily treated. A heck of a lot easier than treating the resulting infections.

LL
 
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