Any suggestions would be helpful

[KHoyle]

For the past 2 years my 7 year old daughter with CF has been going through the same cycle.

While she is on oral antibiotics (bactrim and others), she is fine, no coughing, no sneezing, no cf symptoms.

As soon as she comes off the antibiotic she starts to cough, (like the same day). Within about 2 days she begins to get a stuffy nose and sneezes. She begins to cough at night, but it is not a producing cough. It is more of a "I can't clear it" cough against an imflamation or irritation. Her cough gets progressively worse each night until she is awake all night coughing. With in a week of ending the antibiotics, we need to combat the nighttime coughing with a codine based cough medicine. It continues to progress sometimes ending in 3 days of oral steroids to battle the inflammation and another course of Antibiotics.

Once she starts the antibiotics, she is fine within 24 hours. She is again free of coughing until the antibiotic runs out.

Daily she is on the following:
Ultrase MT12 (Enzymes)
Flowvent (Inhaled Steroid)
Atrovent (Broncho Dialator)
FlowNase (Nasal Steroid)
Prevacid (Which she doesn't need)
Alegra (for alergies... which she has not tested positive for)
Singular (for Asthma, which she has not tested positive for)

We are at wit's end. Please offer any suggestions. Thank you.

 

[anonymous]

Wow! That sounds very familiar. Our eight year old boy has been on the same treadmill , only in his case the orals stopped working about 2 years ago and he does the same thing on IVs. He starts coughing again within 24 hrs of coming off his typical course of IV Tobra and Timentin with oral Bactrim and Zithromax, be it for two weeks or three. We start TOBI or Colistan nebs the same day he stops the IVs-seems to have no effect. He stopped his last course Aug 12th and we added in Sporanox, as he has cultured Aspergillus, though is not "allergic" to it-ie no IGe response. This does not seem to be having any effect either. We too are at our wits end and the doctors seem baffled. He has done 6 or 7 (lost count) courses of IVs since last October, had sinus surgery in January'05 and we seem to be heading right back to where we started.
Any new ideas to present to his doctors or things to try would be welcome!

 

[anonymous]

What about seeing if you guys can go on a profalactic antibiotic. Like right now I am on Bactrim 3 x a week. Just to make sure it keeps all the bugs at bay. Just a thought.
Margaret
Double lung 11.11.04

 

[anonymous]

This is just something I will throw out there that I have discovered to be the case with me. It may not have a thing to do with your children but may be worth a try?
If I eat dairy or whole wheat products close to bedtime, I cough for what seems like hours. With wheat, it's like my throat has a fingernail stuck in it or something and I can't cough it up and with dairy, there's this filmy coating on my throat that I can't cough up.
One other thing I noticed is that if I do TOBI too close to bedtime, I would cough & cough and then have to get back up out of bed & do an albutorol treatment to get the coughing to stop. When I started doing it right after supper instead of right before I got into bed, things seemed to improve.
Also, as weird as this sounds, sometimes if I eat a piece of white bread right out of the package (not toasted) it will help with the coughing, but not always.
Just some suggestions. If you try any of these & they work, let me know. I'm curious to know if it works for anyone else. Good Luck<img src="i/expressions/sun.gif" border="0">

 

[Mockingbird]

Antibiotics stay in your system for a while after you start taking them, and I'm pretty sure they take longer than a day to take effect. I'm just gonna throw this out there, and please don't get upset, but have you ever tried using a placebo? I'm NOT talking about replacing the antibiotics, don't think that for a second... I'm only talking about when she comes off and starts having the coughing problem. I'm wondering if she thinks she is on antibiotics all the time if she'll still have the coughing problem. It's something I would bring up with your doctor, anyway.

I'm not saying your daughter is faking anything, please don't get that idea. It just sounds to me that maybe there's a bit of the placebo effect going on here. Seriously, anyone who gets offended by this post, you're missing the point.

 

[wanderlost]

Why is your child taking meds for things she hasn't tested positive for? I can't speak for you or your docs, but I'd question giving any meds that weren't needed. Also, have you tried a vaporizer in her room at night to ease her bronchial tubes? Put some eucalyptus or tea tree oil in it. There might be some more natural options you could take to help her sleep through the night without the antibiotics.

 

[Diane]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Mockingbird</b></i><br>Antibiotics stay in your system for a while after you start taking them, and I'm pretty sure they take longer than a day to take effect. I'm just gonna throw this out there, and please don't get upset, but have you ever tried using a placebo? I'm NOT talking about replacing the antibiotics, don't think that for a second... I'm only talking about when she comes off and starts having the coughing problem. I'm wondering if she thinks she is on antibiotics all the time if she'll still have the coughing problem. It's something I would bring up with your doctor, anyway.



I'm not saying your daughter is faking anything, please don't get that idea. It just sounds to me that maybe there's a bit of the placebo effect going on here. Seriously, anyone who gets offended by this post, you're missing the point.<hr></blockquote>

i was thinking along the same lines. Kind of like a psychosomatic illness, where if you think you are sick and really believe it, you will actually start to show symptoms.
<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[KHoyle]

Thanks for the responses, also of mention is that my daughter does not culture for anything other than staph right now.

We completely understand that antibiotics stay in the system after a use...they also take at least a few days to work. When we tell the doctor that she instantly responds, the doctor thinks we are crazy. We are wondering if anyone else has experienced a secondary anti-inflamatory response to the antibiotics. I know there was a ZMax study to evaluate the anti-inflamitory properties of an antibiotic.

The placebo is a possible approach to take, however it is doubtful. She is a very sound sleeper and would never wake up on her own. The coughing sometimes doesn't even wake her up, last night she slept through the round of coughing at 4:00 am, psychologically she is getting no gain from the coughing bout.

As for the medications, I'm sure that you are all aware that when taking Oral Steroids you lower your bodies immune system, thereby reducing the inflamation but running the risk of being infected by something else. Most doctors prescribe a course of antibiotics to accompany a treatment of Oral Steroid.

As for the vaporizer... I could be wrong but I always heard that a vaporizer is a bad thing. Most of the bad germs the affect CF patients live in water. Take this water and atomize it over a CF person's head and you are asking for trouble. Even if you clean the vaporizer throughly, the stagant water resides in the mechanisms, between uses. We do not use the Jacuzzi tub in our batroom for the same reason, water resides in the jets and can harbor really bad stuff.

We may look into Ibuprofin treatment for the inflamation.

 

[luke]

not sure what happened here, read below?

 

[luke]

K,

I would recommend 2 things...some of the time coughing at night is due to bronchospasm, which makes me wonder why they do not have your child on the best bronchodilators for active wheezing. You may want to suggest/ try albuterol or Xopenex(I would recommend Xopenex). The other thing I noticed is that there have been different studies with kids and ibuprofen. I love the stuff, maybe another good option. Not to contradict your doc but they are only treating the symptom of coughing with the codeine and not correcting the problem. As for humidiers some are better than others but as a general rule they are tough to keep clean. Good luck...

One question, are you going to a CF clinic or a pulmonologist?

Luke

 

[KHoyle]

Thanks Luke,

XopenX? I haven't heard of it. My daughter is on Atrovent as a bronhcodialator, she was on Abuteral but there appeared to be no diff with Atrovent.

We go to a Level 1 CF clinic (Boston Childrens), and supposedly have the best (Harvard Trained) Pulmonologists in the world.

I forgot to note that accompaning this situation my daughter always gets a stuffy nose (that is the reason for the flownase). The drip contributes to the coughing, but the coughing appears to be against an imflamation, because it is a non producing, dry, painful hack, that results in a hoarse voice or lyrangitis, (There is no spell checker on this forum).

Thanks for any feedback

 

[anonymous]

I have MRSA and I occassionally take doxycycline and I don't cough a bit when on it.
I notice within days of ending the doxy that I start to cough up stuff again. It gets frustrating. I don't know if the mucus was always there & some component in the doxy suppresses it or if it builds up that quickly after I get off of the doxy. It's not a dry, hacking cough like you mentioned, though. It's a productive cough. <img src="i/expressions/coughing.gif" border="0">

 

[luke]

He's the best in the world and treats your child for asthma but has never bothered himself with the diagnose of it, nice. Makes me wonder? Sometimes doctors are arrogant enough just to assume they know and go straight to the answer rather than ever trying to read the problem. One other question, I notice your child is on prevacid, has your child ever been diagnosed with reflux? That could also be the culprit and the prevacid just might not be the correct drug.

Good luck....


Luke

 

[KHoyle]

Thanks Luke,

I feel that they are just throwing stuff at her. We had a really great Doctor at Childrens, he asked probing questionsand truly tried to get to the root of the problem, but since he was so good, another hospital swept him away. Our Doctor now just treats the symptoms, we could be getting the same kind of care with a basic pediatrician. I am dissapointed, as we drive about 2.5 hours to get this "best in the world" care.

My daughter is on Prevacid, but has never been diagnosed with reflux, it was more of a "try this" approach. Same with the Singlular, the Alegra and the AShma treatments.

This is why I am looking for feedback on the web. Somone else must have had these problems?

 

[anne]

This is my first post, but after reading your post I just had to respond. Reading it was like reading about my past 8 months with my 6 year old son. In February he started a dry hacking cough. He was put on everything...albuterol, flovent, prevacid, steroids. No change. Up every night coughing. After a month, they decided to do 2 weeks of IV antibiotics. The cough went away slowly. We stopped the antibiotics and it came back. More suggestions of things to try from more meds to changing his eating habits in case of allergies. Nothing worked. In June he had sinus surgery. He was completely cough free for the first 6 days (he was on bactrim, but then had a reaction and they didn't put him on anything else.) The cough came right back. Back to the ENT. He didn't think it would do any good, but when he did operate again, he found that he was completely closed up in there again. This time he put antibiotics up in his sinus cavity. It has been 4 weeks since the surgery. We have faithfully been doing sinus rinsing. The cough is still not completely done and I know that we are not finished yet. But at least we have been getting some sleep. His energy level and eating have drastically increased. He must have had just terrible sinus infections.

I also feel that the doctors are just throwing things at him. They never take him off anything but can't prove that anything is working. We have come up with our own thoughts. It definitely seems to be related to post nasal drip. Doing the sinus rinsing seems to help. When he is coughing at night we have found a combo of motrin cold, and eating something like popcorn and drinking seem to stop the coughing most of the time (that is after his surgeries. Before the surgeries, nothing worked and it was horrible listening to him cough every night. Not to mention going to work and school day after day with no sleep got really old). I hope some of these suggestions help. At least you know that you are not alone. My husband and I have been up many nights at 4:00 AM watching scooby doo cartoons.

 

[anonymous]

One suggestion would be to try some Xopenex (nebulized) like someone else mentioned. That stops the coughing for me most of the time. It's never fun getting up at 2 am to do a treatment, but when it comes to that or being able to sleep, I choose the treatment, then at least I get some sleep.

To Luke: is there a definitive test for asthma? My doc told me years ago that I have it & I said "I don't remember being tested for asthma" and if I recall correctly he said there really isn't a "test" but that it's diagnosed from symptoms, PFT's etc.--true?

 

[KHoyle]

Thanks Anne,

My wife and I are up now taking turns soothing her cough. She had sinus surgery about 2 years ago, she was impacted in har sinuses but has not had much difficulty since. I do believe that the issue stems from the stuffyness that occurs, however she always blows out clear stuff.

Our cycle, is that she gets stuffy, it drains and she starts to cough at night mostly. The coughing causes an inflamation which causes her to cough more, until she is totally inflamed and coughing all night. We put her on a steroid for the inflamation and an oral antibiotic to keep everything at bay and she is fine. The Steroid is only for a few days and the Antibiotic is a full course. Once the antibiotic is gone, the cycle starts over.

What kind of a sinus rinse are you doing? Our previous doctor recommended a NetiPot to rinse her sinuses out, it uses a saline based solution. We don't like to use it too close to bedtime though, it seems to contribute to the drip. We heard that our ENT had started using a SinuNeb (by Pari), but we actually haven't tried it.

Thanks.

 

[luke]

Yes, asthma can be tested for via PFT. Normally, they look for reversibilty during the test...pre/post bronchodilator. If there isn't a change but the symptoms of asthma are there it may just be there isn't any current bronchospasm. The doctors may retry the PFT inducing a bronchospasm and then correcting it. There are several different ways to do this is including cold air and a drug called methacholine.


have a good day

luke

 

[ihatecf]

just my tip, K Hoyle i suggest that your son does take oxygen at night it helps to ease the cough also ibuprofen is good. Throw it to his doc. loool at Scooby Doo.

 

[wanderlost]

Khoyle - I don't know the safety issues of a vaporizer - I know in the "old days" kids used to sleep in "mist tents" as the moisture seems to help loosen up the phlegm. I have alwasy used a vaporizer when i am sick and have not yet (knock on wood) cultured anything bad. I guess you could always check with your doc and get his/her opinion if you were interested. I know that it helps me sleep when I am sick <img src="i/expressions/face-icon-small-smile.gif" border="0">