coughing

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anonymous

New member
Hello,

My son cultured PA in the spring and luckily we were able to eradicate them. Well now for the past week he has been coughing (not all the time, just occasionally esp. after meals) and he has had a runny nose that is clear. I am so scared they are back! Or maybe this is just a cold? I don't know...

We are taking him in tomorrow to do a throat swab, but I am just soo nervous that the PA is back. Do your kids sometimes get coughs and runny noses and it is just a regular cold? Being a first time mom, with CF added to it, I just never know what is "normal" and what is CF related.

Thanks,
Carrie
mom to Sam wCF
 
J

JazzysMom

New member
I always get a kick out of people including my husband who get worried when I cough. I have CF & that is what we do.....we cough. OK Now seriously. There is a difference between the normal sputum in the way cough & getting sick cough. Allergies & sinuses can have an impact on a CFers health & since your son is still young its a good possibility its a simple cold. HOWEVER; even simple colds can become a problem if you dont stay on top of it. Until you are more familiar with the coughs & other signs of actual flareups you are best to get feedback from the doctor. Let us know what is said.....If by some chance PA is back. Please dont make yourself sick over it. Its something around us & would be a problem at some point.
 
A

anonymous

New member
Carrie,

It is possible that your son has a cold and the post-nasal drip is making him cough. My daughter with Cf has had colds that just petered out in the past . But I worried the whole time. I do think it is wise to bring him in for the culture since he is so little and can't tell you how he feels.

You will get to know his cough. My daughter who is 3 1/2 has not yet cultured PA but regularly cultures MRSA. There is a certain sound to her cough she has that I know an exacerbation is coming and to call the doc. Signs to call the doc , for my daughter are coughing for long periods at night, frequent coughing during the day, and of course fever or if she just doesn't seem right.

When my daughter starts coming down with a runny nose(which unfortuantely small children frequently do), I increase her albuterol nebs and VEST therapy to every 4 hours. I'll alos do manual CPT at night if she's really hacking at night. alos, drink lots of fluids.

It's so hard not to worry. My 8 year old told me I worry too much. I said I'm a MOM, that's my job(joke). You will find that you will get to know your child better than the doc and you will be telling them what to do(at times).

Anyway, all kids cough whether they have CF or not. We as parents, just need to keep on top of our CF children more than most.

Hope he feels better soon and it's not the PA.

Rebecca(mom to Sammy 8 no CF and MAggie 3 1/2 with CF)
 
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NoExcuses

New member
Your kid eventually going to get PA. Most CFers do.

Runny nose that is clear for me, at least, means allergies though. and the sooner you take care of allergies, the better off your son's lungs will be.

For me, i fear allergies more so than PA. Once I got my allergies under control, my CF improved drastically.
 
F

folione

New member
I sure do know what you mean about wondering and worrying at every cough. My son is 3 and just a few weeks ago finished a round of IVs for pseudomonas. A CT and bronch and cultures afterwards said he was clear and germ free. But here we are 2 weeks later and in the middle of doing a 28 day round of Tobi he starts having a loose cough. Frustrating as anything. He's had so few colds and so little coughing in his life, we don't yet have a good feel for when it's a bug or when it's just seasonal allergy causes or even if maybe this is just how the Tobi is going to affect him or if this is actually a good sign that he's learning to cough when he feels some mucus forming down there.

So we sit and wait a week or so to see if it gets worse or if any other symptoms such as congestion or fever show up and meanwhile add some extra albuterol and vest time to make sure he keeps things moving. If it goes on more than a week or so we give the Dr. a call to talk about it and often end up doing a round of augmentin.
 
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norcotrent

New member
amy,

Any chance you could warm your replies a bit. I know everyone has thier own way, yours just always seems so short and cold.

Just a thought.

Trent
 
A

anonymous

New member
I don't find Amy's comments cold. I find them very informative and appreciate the time she takes to answer so many of our questions. Whenever I read a question asked on this forum I look forward to reading what Amy's thoughts are going to be. So <b>thank you Amy</b> for sharing your personal and professional experiences with us. I have learned a lot from you but most of all I have learned to keep asking questions and to stay on top of my health by being proactive. So please keep your informative comments coming.
 
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NoExcuses

New member
i aim to help. information is power, and it's power that can prolong our lives as CFers. thank you for your kind words.
 
A

anonymous

New member
I am glad I had the opportunity to express my thanks to you Amy. I know you are sincere in wanting to help all of us and as I said <b>please</b> keep your comments coming.
 
A

anonymous

New member
I wanted to take a moment to also thank Amy for all of the comments that you make. Please don't hesitate at all to make a response in any form. You have provided me wtih so much valuable information. Your posts are some of the ones I value the most.

Please keep helping those of us who are no where near as well-educated medically as you are!

You truly are a life saver.
 
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Jem

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> Is that amy
posting anonymously? Its quite funny that she's patting herself on
the back like that!</end quote></div><br>
<br>
<br>
It is sad to see this comment. So for your knowledge I posted the
first thank you comment to Amy and followup one after her reply
asking her to keep her comments coming.  Don't know who wrote
the other positive comment but I am sure it is sincere.<br>
I hope this satisfies your curiosity.
 
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thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

i aim to help. information is power, and it's power that can prolong our lives as CFers. thank you for your kind words.</end quote></div>


See that's why we're twins Amy. Knowledge is power, and I know that my health has improved because of the wealth of info that I take in. You have to be your own advocate because no one else will be for you.

I know I always look forward to your comments!<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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Ratatosk

Administrator
Staff member
DS rarely coughs, so if he does cough, it usually means he's coming down with something. When he was 3 months old he coughed so hard he'd throw up his formula. His peds doctor said "he has cf. he coughs. It's what cfers do". In my heart of hearts I KNEW it was right, so a few weeks later, we took him to his CF doctor in the city -- he had bronchitis -- culture showed a bug common in NICUs involving fecal matter and improper handwashing. Bleah!

Last spring DS developed a head cold, which turned into a junky cough. His doctor in the City put him on Cipro for a few weeks. Basically we were told DS is going to get colds, he will get sick. Increase beatings, get to know his cough, so if something doesn't sound right we can take him in. And when he has cultured pseudo in the past -- never seems to be coughing at the time. Liza
 
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JRPandTJP

New member
Your son will definately get colds and they can and often do run the normal course. It is typical to have more mucus and a junky cough during them with the CF thing. As long as it clears up within the expected time of 7-10 days with no lingering cough or a cough that gets worse while other symptoms go away, you would be in the clear.

Many people find UMKA to be useful during colds...it is all natural and helps the cough be productive and it shortens the duration of the cold. Some also find it helpful to stop dairy during a cold as it can aggravate symptoms and increase mucus production. We also give extra vitamin C (powdered form in juice). Aside from this, we also like to rub lavendar essensial oil on this feet before bed (more for comfort but it is also thought to stimulate immune system).

Our son also cultured PA and has been clear since we did a inhaled TOBI treatment. I also still get concerned every time he sounds junky, is a bit off color, his stools get messy or he seems tired...it just will always be in the back of your mind that you are missing something. It gets a little easier as they get older but I always wish I could just peer in and see what the heck is going on in those lungs of his.

If it sticks around and he really isn't getting rid of it you may want to look at acid reflux if it is only after he eats. THis can be treated naturally with a small amount of magnesium added to the diet and/or chemically if your doctor prescribes an antiacid. Like Amy said, you may want to review his diet and see if it is allergy related (food or seasonal).

Again there are natural ways to help the body not react to allergens. I take Quercetin (citrus bioflavanoids) 2x daily and stinging nettles 1-2 cap 3x daily plus NasalCrom and have virtually no symptoms during Aug-Oct (first frost). I have had severe fall allergies my whole life and this works as good if not better than any prescription I've been on with no side affects. You'd have to check on the dosing for children but I"m sure it is out there on the net. I also go dairy free when allergy season come round and it helps tremendously.

Sorry....I just can't ever seem to keep my notes short guys ;-)

Jody
 
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norcotrent

New member
Amy, Jem, Liz, & Anons,

I guess you didn't understand my post. I didn't say I do not appreciate yours or anyone elses comments. I've learned so much here. Just a thought I had. When someone new or newer has a question. The best answer may not be "Your kid eventually going to get PA."

Sorry if I was misunderstood.

And Liz. Sorry you feel that way about advocacy. I bet most parents with children who have CF do not feel the same way. I don't anyway.

Warmest Regards,

Trent
 
A

anonymous

New member
Thanks for all the advice everyone. We actually went in today to have his throat swabbed since I go back to work tomorrow (I'm a teacher) and wouldn't you know- his cough is so much better today! Still, I'm glad they are doing a culture just in case the PA is back and we can hopefully eradicate again. I have just been having so much fun with him, taking him everywhere this summer that I probably haven't been as careful as I should. To be honest, I don't even think about the CF quite as much at all anymore until something like a cough comes along and it brings me back to reality. Thanks for the info. and we should know by Monday if it is anything bad!

Carrie
mom to Sam
 
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