Need some advice on son's cough

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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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welshwitch

Guest
Sounds like his cough is triggered by exercise....which is a good thing. Is it productive? Most likely it is his system trying to get the gunk out. Coughing while exercising = airway clearance. Does he feel better afterwards?
 
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Melissa75

Administrator
The avenues I think you might explore are vocal cord dysfunction and gerd. VCD can cause stridor and coughing, and it's often triggered by chronic post nasal drip. Here's an article about VCD in athletes and then a general info article.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC164364/
http://www.nationaljewish.org/healthinfo/conditions/vcd/

The other thing, gerd, is also a possibility. I am pretty careful not to eat before exercising because the food comes back to haunt me, up and down. Even a brisk walk after a holiday dinner causes me to have throatfuls of reflux. And though I don't *think* I'm aspirating anything, my lungs often feel bad
 
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JennyCoulon

New member
They say it is allergy related asthma bc we wanted answers and they really cant tell me which is why we are getting a second opinion. They tell me it is not CF related but cant get us any relief.
 
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Melissa75

Administrator
In those VCD articles, ignore all the anxiety, psychological stuff. It's been deemphasized in more recent literature (and it aggravates me to read it grrr.)
 
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Printer

Active member
There may not be relief to be had other than his inhalers. Some of us go through life with a cough.

Bill
 
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welshwitch

Guest
Here's some perspective from a 33 year old woman with CF:

The cough is always there. Some days it's worse than others, but, all in all, it's there.

I've gotten to know my cough, like a friend. I know its patterns. It's always worse in the morning. I have remedies to make the cough better. Going on an hour long run the night before. Pulmozyme. Sleep.

But, there are times when my cough is abnormal. Worse than usual. Causes: exhaustion. Fatigue. Hunger. A cold. Stress.

When my cough acts up, I know it's time to take it easy. Reduce my schedule. Start saying "no" more often. Eat something.

For me, my cough is the first thing that acts up when my body starts to take a hit. A barometer, if you will.

Once I do these things, I get my cough back to "normal."
 
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JENNYC

New member
When Abby's cough came persistent with no real reason it was her sinus'. Has he been checked out by an ENT? Not saying that is what it is but maybe he's got some polyps that are causing a problem. Abby's always got worse when she got hot by sports or running. Just a thought :) Good Luck
 
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Kristan

New member
My son does not have CF, but recently was diagnosed with allergy related asthma. He has had allergic rhinitis for years and we recently discovered his pfts were chronically low, but did not seem to respond to an albuterol inhaler. He tested negative on his sweat test, but full pfts showed improvement after nebulized albuterol. His pulmonologist put him on Qvar 80 mg twice a day for 3 months to retrain the airways and now we are trying 40 mg twice a day. He also takes allegra (more helpful than zyrtec for him) and uses Flonase. Qvar has smaller particles and should be taken with a chamber (like the albuterol inhaler). I have read where people use both advair and Qvar to avoid predisone, so you may want to ask his doctor. You might also want to try giving nebulized albuterol before exercise to see if that is more effective. I also want to mention the Buteyko breathing technique. If a trigger is causing an unproductive cough, he may be able to learn some breathing techniques that can help.
 
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JennyCoulon

New member
The doctor we cant get in to see until July 2 deals a lot with ENT. Can I ask what they did for your daughter and did it help or stop the cough?
 
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Printer

Active member
Jenny:

If the Doctor stops your son's cough, please post here so we can all benefit. I've been coughing for 73 ears and I would love to stop.

Bill
 
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JennyCoulon

New member
Printer:

I do not come on here and offend others nor do I ask for people's advise to get a rude answer. I have seen you respond to many others rudely and I won't deal with it. I would appreciate it if you would not respond to any of my questions because you seem like a very grumpy old CFer who isn't happy about anything in his own life. I am not asking for the cough to stop, I am asking for an answer to why all of the sudden my son started coughing when doing sports 3 years ago. I want an answer, I have been told by my CF approved center, might I say one of the best in the US that it is NOT CF related. I have been told it is allergy related asthma and they have tried many things none of which have helped. I am wanting an answer and someone should be able to give me one since it is NOT CF related per the CF center. I am going to get a second opinion from another doctor who deals with allergies, sinus issues, etc. I think people should feel like they can come to this site for other people's advise, experiences, etc and not feel like they need to defend themselves for asking a question. Again please do not contact or make comments on any of my posts in the near or far future.
 
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DmT145

Guest
This is a public forum and by posting here you invite input from everyone, including those you do not agree with. If you want a private forum where you make the rules, start your own.
 
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JennyCoulon

New member
DmT145: I am not rude to anyone on here and I expect people to not be rude or a jerk about any questions that I ask. I am not saying you can't post something I don't agree with but there is no reason to be rude about it. I find that the majority of people on here are helpful and not rude but today I have found 2 rude people. I have been a member on here for a long time and all I ask is that people respond with HELPFUL information which is exactly what I said in my first post. No one asked for your rude opinions either.
 
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DmT145

Guest
My post was factual, not rude. You should not expect everyone on a public forum to conform to your preferences. In fact, that's the entire point of a forum, traditionally. To get opinions from and speak with people who say and do things differently than you.
 
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Printer

Active member
Yes Jenny, you will deal with it. I have been a CF patient for 26 years. I have been a patient at the CF Clinic at The Massachusetts General Hospital and most recently at Boston Children's. In 26 years, I have never seen a CF patient who doesn't have a cough.

Additionally,. If you didn't have a history of attacking me, It wouldn't be nearly so much fun to make fun of you.

Oh yes. My life is not so bad. If you have followed my posts you know that I was able to get a pretty good education. I was very athletic in my youth and that has carried over to today. So life is good.

Bill
 
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Printer

Active member
Yes Jenny, you will deal with it. I have been a CF patient for 26 years. I have been a patient at the CF Clinic at The Massachusetts General Hospital and most recently at Boston Children's. In 26 years, I have never seen a CF patient who doesn't have a cough.

Additionally,. If you didn't have a history of attacking me, It wouldn't be nearly so much fun to make fun of you.

Oh yes. My life is not so bad. If you have followed my posts you know that I was able to get a pretty good education. I was very athletic in my youth and that has carried over to today. So life is good.

Bill
 
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JENNYC

New member
To get back to your question....yes the sinus surgery greatly helped her!! The cough went away, because the polyps that were holding the "crud" up there and just dripping it down the back of her throat went away. I was always so relieved after her surgeries and so was she. Even as little as she was she would say momma I can breathe good again! And to hear her say that just made me tear up every time! I can't stand that our babies go through this and we as parents are just fumbling our way through trying to find the best way to help them and not knowing if the path we chose is the correct one. I have struggled so much with I am doing all that I can do? Should I have done something different? What if I would have done something sooner? Anytime you want to talk I am here. I understand how hard it is as a parent. I wish you could find a way to get in sooner. I am lucky that our ENT gave me their cell number and recognize my number even when I call up to the clinic and jump to answer the phone. They got to know Abby really well there for a little while. 2 surgeries every 3 months freaked them out a little!! And she had other problems as well but I won't go into all that. Luckily I have a wonderful ENT and she figured out a way to stop the polyps from coming back so fast!! I absolutely love her!! If you lived in TX I would totally recommend her to you :) God Bless and I hope this helps!!
 
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