Increased cough

[Jshet22]

My son has been having drops in pft's for a while now. He has not been completely well since mid December. He had a clinc visit 2 weeks ago and decided it was time to try Tobi. At clinic he barely was coughing (geting over a chest infection), but did have a pretty good drop in function. An oral antibiotic was started also which he finished today. This past week his cough has been getting worse and has now gotten to the point where it is almost non stop and he is getting so frustrated. The cough is now non productive but constant. He did start Tobi two days ago but I'm assuming it's too early to see results. I would call his clinic but weekends are staffed with pulmonary residents who do not know much about cf and much less about my sons complicated case.
im not sure what to think at this point. should I be concerned with a dry cough or is it nothing to be concerned with since he's not coughing anything up. I'm just not sure if there is anything else I should do. We have increased vest and nebs and he is not running a fever. Im just not sure if he needs to be seen or if this is just his new normal. He jet so tired of coughing constantly.
i am so sorry if this seems like dumb questions to ask, but until this point we have been quite blessed with not a lot of lung issues that haven't resolved with just oral antibiotics and increasing treatments. Thank you so much

 

[Gammaw]

Jshet22 - Even barely coughing doesn't mean it's not worthy of attention or treatment around my house. I view it as a warning - something is brewing and needs to addressed, the sooner the better. You said he hasn't been completely well since December. Was he treated when this started? Or was the antibiotic started two weeks ago the first time he's been treated? Sometimes I seem to have a brain break, and when the pediatrician or family doc prescribes him an antibiotic, I don't pay attention to the fact that they prescribe it for only 10 days. The truth is that DS doesn't tend to start clearing up around the middle of the prescribed time like many kids, and he's not done at the end of 10 days like most. Most CFers in my experience need an extended time on antibiotics - if they prescribe 10, I need to chime in and tell them at least 14. Or he might need a second round altogether. So when your kiddo seemed to get better on the antibiotic, but it's increasing now, that sounds typical for us to indicate that he needed a more extended time on the antibiotic. I would assume that the antibiotic was working, but he didn't get enough of it. Now the bug is gaining hold again. I also wouldn't assume that because it's a dry cough or because he has no fever that he's over it or has a new normal. Especially if he's coughing constantly.

Next question I have is whether they cultured anything. Do they even know what bug he's fighting? And I wasn't clear on whether they prescribed TOBI for the first time now? Or are you saying that he normally takes TOBI and since he just started a round of it, you're hoping it will help? If it's the latter, I would suggest you not rely on TOBI to treat the current cough. I think you're right to be persistent and keep at it until you can quell this cough. Call your CF Clinic and let them know the last round of antibiotics helped, but looks like it wasn't quite enough!

Blessings

 

[Jshet22]

Gammaw, thank you for replying. He has been on antibiotics for a total of 9 weeks sine mid December. First time was 2 weeks, followed by 3 weeks then 2 weeks and is now finishing another 14 days. This is his first time ever having Tobi. They do not know want bug he is fighting. He has not been getting completely better with any of the antibiotics. They rotate Cipro and Bactruim. He has been on so many antibiotics and experiencing severe diarrhea he lost 4 pounds over the last couple weeks. Atleast that has stopped.

 

[Gammaw]

That is a lot of antibiotics - which of course is most certain to be causing the diarrhea! The best approach for the diarrhea we have found is keeping him on a probiotic especially during antibiotic treatment. We use Culturelle, but there are many out there that others on this forum have used. Our pediatric hospital uses Culturelle too, including on the CF patients. It has been very effective for us. We couldn't even use Augmentin for a long time because my little guy would spend half the day on the toilet in pain. Culturelle ended that and he was able to use Augmentin again, which has been pretty effective for him on most occasions.
Have they run a culture on his sputum? I'm assuming of course they have . . . . has it come up negative for everything? And can I ask how old he is and has he cultured anything before this?

 

[Jshet22]

They did not find anything on the culture, but he is not very good with it. He has autism and this is a huge sensory issue for him. He has never cultured anything really bad. Only a coupke times did he culture anything requiring antibiotics. I can't remember what they were, but nothing thst didn't clear up easily. We have been lucky lung wise for the most part. He had lots of issues the first 7 years, with lots of inpatient stays. Unfortunately he was not diagnosed until he was 14. Since then his main symptoms havr mainly been gi issues with severe failure to thrive. His pft's have been quite stable with no change until September. He had a drop followed by another in November a slight increase in January and has had his lowest results a couple weeks ago. A huge drop in his small airways making the doc think thst there is bacteria deep in his lungs. They will not do a bronch unless it's completely necessary because of a bleeding disorder. It's just not worth the risk. Also he is on culturlee, recommended by his clinic.

 

[Gammaw]

Well you do have a challenge, don't you Jshett. I can empathize. My guy is dyslexic and has ADHD, but wasn't diagnosed with those conditions until fairly recently. Which dx is the most challenging and time consuming is a toss-up! I suspect your son's autism takes a lot of your energy as well. Sensory issues are a bit of an issue around here too, so I'm a tad familiar. Gagging is of course an issue for most people, especially kids, anyway. I can't imagine how your son reacts to that. I wonder, though - we had an excellent RT at one point who decided my son needed to give them a sputum sample from his lungs - not a swab. When my kiddo kept telling them that he couldn't cough anything up, they taught him how to huff cough, which is much more likely to produce sputum for a sample. Since huff coughing is a lot like breathing to fog up a mirror, I wonder if you couldn't play a game with him occasionally in front of the mirror to see who could fog it up better - you or him. It might help him produce sputum for sampling. Perhaps you could talk to your RT about all the elements of a huff cough and whether they think that might help get a better sample for testing. Just a thought. It sounds like right now, they're shooting antibiotic bullets in the dark. It might be better if they knew the target.
I'm also hoping other readers may have more ideas!
Blessings

 

[LittleLab4CF]

Jshet22,

What a nightmare! What's sad is the popularity of this dystopian dream amongst​ the CF community. I remember my mother dragging me around town searching for the source of my newly presented "wheeze". I'm at a loss as to why she was so concerned about the new symptom, but it was one time when her calm facade gave way to deadly serious determination to get to the cause.

I have asked a friend who has raised 2 autistic boys about your son's sensory overload, maybe she can help. I have a couple of suggestions that I go for when I've had a dry, unproductive cough; stop the cough using a medication. His brain acts oppositely to stimulants/depressants but I'm confident that his autonomic nervous system is normal. Tussienex is a prescription cough suppressant/expecterant that I strongly recommend. The doctor may take some convincing him to prescribe it. I'm suggesting it for specific reasons you're welcome to share with him. It's got hydrocodone, possibly the best choice of a cough suppressant, except for the fact it's narcotic. Still, it's prescribed for age six and up. The hydrocodone doesn't play tricks with the couch/gag center, and it soothes the irritated bronchials with its narcotic effect. I've been sort of an uncle to my young autistic kids and I understand how painful it is when you can't help a cycle of upset and this works. The other ingredients are honey and chorpheniramine, an antihistamine. The honey coats the throat and it really is soothing when you get a little topical effect of the other ingredients. I believe the sensation will be perfectly treated and though Robitussin is good, certain narcotics are going to serve much better, rapid complete control over the cough, analgesic for the pain and irritated bronchials, elevating the sensory overload and as long as the cough is dry, the antihistamine will help with the sensation causing a cough/gag.

The other idea is Mucinex and I'm not sure if this is a good idea. If he's been spared CF lungs, as I have, Mucinex should give him something​ to cough out. If his mucus is hyperviscous, I see little point in stimulating more.

The nightmare over antibiotics is complicated. First, Multiple Drug Therapy (MDT) or the use of multiple antibiotics is a specialty of its own. I've studied it extensively. You can't afford to allow weight loss over antibiotics. At the same time, multiple antibiotic therapy should be given concomitantly​. This will really tear his insides up, so I suggest you get them to give them IV. It's not bad and it's usually done at an infusion center, in and out in a couple hours and often just 3 days or so. I'd go easy on the airway clearance, if the cough is dry.

Best of luck,

LL

 

[Gammaw]

Fantastic idea LL. I love this new perspective of an uncle to autistics. So if I have this right your suggestion is that his sensory system has been in effect overloaded by his CF issues - perhaps with the original respiratory infection? Many kids hyper react to new stimulus experienced by their bodies. They don't have to have CF or autism for that. I hope I've understood your post. Sometimes your "high density," to which I look forward, leads me astray as well. I still like the idea of perhaps teaching him to huff cough, so he doesn't wind up balking at every CF visit when they want a sputum sample. Let them have him huff cough and spit it out.

 

[kenna2]

Just a random thought about a dry cough. I know you stated he is having issues with GI symptoms. Is acid reflux one of them? The acid coming back up can get into the lungs and cause a dry cough. I was really sick for 3 years before we figured out this was the cause of me not getting better. I would for sure call his doctors. The residents still have to consult with his doctor for orders.

 

[Gammaw]

Great thought, Kenna. This is what I love about cysticfibrosis.com. So many experienced and helpful souls.

 

[Jshet22]

Thank you so much everyone for the great advise. Learning the huff cough is at the top of the list at are next appt. I think this could be super helpful for him. The hydrocodone idea is a great one, but he had a codine allergy, but I will ask if there is something comparable he can have. Upon waking this morning the cough though less frequent has become productive again. Not sure if it's coming from his chest or head, but his stomach muscles are hurting a lot. He has a high tolerance of pain so if he's complaining they must really be bothering him.

 

[Jshet22]

Oh one other thing kenna 2, yes he does have reflux and takes daily Meds for it. But at this point anything is possible so I'll for sure to ask about that. Thank you everyone

 

[kenna2]

The reflux could be the cause. I was on meds for it and they didn't work. Mine was really bad and required surgery to fix but it stopped the problem and the relief is amazing. Request that they do an endoscopy and there is a procedure where they place a chip in and it measures his PH levels of his stomach acid getting into his throat. It's painless and done outpatient. He won't even know it's there and it falls out after 3 days. If they do this, make sure while the chip is in he eats everything that causes him acid reflux.

 

[Jshet22]

His has gotten a lot of congestion in his nose as the day has worn on along with the cough. So I guess I'm gonna wait and see where this heads in the next day or so. i think he gets more confusing by the day, lol. He's just tired of not feeling himself at this point. Hopefully with the weather warming up here over the next few days it will be helpful for him.

 

[Gammaw]

Aha. Sinus infection. The bug causing the sinus infection and the resulting drainage typically drains into the lungs and causes coughing. It can cause an upper respiratory infection as well. I wouldn't wait. I would call them and potentially ask for an ENT to see him. They can even swab his sinuses, check for polyps and clear out his sinuses right there in the exam chair if helpful. The other possibility that can causes both sinus congestion and and coughing is allergies. Any new irritants in the air around him? Smokers in the house? Increased molds or pollens around you? It's been a real mild winter here and our ENT mentioned it hadn't been cold enough to kill off last years pollens etc. Our ENT actually prescribed Mucinex, saline (hypertonic) nasal rinses and rhinocort. And frankly, I notice a correlation between kids with sinus issues and belly issues who tend to have a lower rate of lung issues. Call.

 

[kenna2]

I also agree with Gammaw. Ask your CF clinic to refer you to a ENT to specializes in patients with CF. Our cases is a bit different than someone without CF

 

[Jshet22]

Thanks guys, I will. He is on allergy medicine, but it's probably his sinuses.

 

[LittleLab4CF]

Just a side note, codeine is one of those opioids that many people have less than pleasant effects from. The classic Tylenol #3, is or was OTC in Canada, script in the U.S., should be banned IMHO if for no other reason than the edgey agitation and bizarre dreams/hallucinations it's known for. I can't take it either because I have had an allergic reaction to it in the form of hives. You should check with his doctor but I'm fine with hydrocodone, the semi-synthetic compound behaves quite differently​ from it's parent opioid, codeine.

It's looking like you are zeroing in on the source of this problem. I had ascribed the gagging to his hypersensitivity. My CF is GI dominant but I'm reminded of my early childhood as you have been working through this mystery. The evidence of countless colds is in my X-rays. What was probably at work wasn't mucus clogged CF lungs, it was aspiration.

When I was diagnosed with CF, among other things, they studied my swallowing. I am aspirating a portion of everything I swallow! Aspiration is a characteristic of CF yet I can't remember a single mention on this site. I'm not talking about sucking down some reflux, although that is a big piece of the story, for whatever reasons our epiglottis doesn't work right. It might be damage from infection, hyperviscous mucus or part of the Small Duct Disease (SDD) present in most CFers, probably all of them but it's a fact of the CFer's life in most of us.

The thinner the liquid, the easier it is to aspirate. Nasal infections​ take their toll in terms of how many chest infections they cause and the eventual sinus reconstruction surgery required after years of infections​. I am remembering the incredible amount of scary thick mucus hanging half off my soft pallet. I'm going to suck it down and fear it overshooting my mouth and sealing the opening to my lungs. This was a daily occurrence and something common with CF. If there was any knowledge about rinsing my sinuses, I would have been a young fan. Water Pic makes an attachment that is about as non threatening as possible when you're trying to introduce a child to rinsing his sinuses. The attachment resembles a regular attachment except the opening is larger, eliminating the high pressure jet. And it has a rubber "ball" that seals when pressed against a nostril. The Water Pic doesn't take advantage of its pulse action, the warm salt water pumps slowly, filling up one side of the nasal passages and drains out the other nostril, or by moving the attachment, it drains out of the same nostril it was going up. My doctor wrote a prescription for the attachment but it was under $10 without a script and Walgreens got mine in a few days. The important thing is the person who is using it has complete control over what goes up the ?.

With most CFers, the chance of aspiration is reduced by making sure that enough time passes between the last food and bed. Don't assume GERD is just for adults. I've been on stomach medicine since I can remember. The good news is that GI dominant CF you have a good chance of a full life. The downside is the GI tract is hidden and doesn't necessarily respond to food or anything in a timely​manner, making it difficult to treat.

Something that I just learned; to limit aspiration, pancreatic pain and sleep better, side sleepers should train to sleep on the left side of the body. The stomach is better positioned​ to hold food in and when you're on the right side, you're putting pressure on the stomach and pancreas. Just a thought.

LL

 

[LunaFaith]

im not sure if your clinic is tied to a hospital, but mine is, and when I am concerned I call the hospital switch board and ask for the Pulmnologist on call, you have to wait a bit for them to call you but outside of contacting your CF nurse or doctor thats the best option, get an opinion before resorting to an ER or clinic visit

 

[Jshet22]

Thanks Luna Faith. I did call and they want to try one more round of oral antibiotics while he is doing the Tobi. He is going back in next week for a repeat Pft to see where we are. If symptoms continue to worsen I am to call and they will bring him into clinic earlier or ER if after hours. All of you have been amazing with helping me. It's hard to get a good idea what is going on when he has difficulty expressing himself. Thanks again.