Dr. Hive, I need your thoughts: Constant respiratory infections and subsequent chest problems?

[ILiveInFlipFlops]

OK, I need to pick some brains on this, because I've talked to so many doctors about this, and no one has been able to (or really even been very interested in helping me) pin this down, or even give me avenues to research. 

 

My youngest DD (9) has had a history of catching--and hanging onto--just about every respiratory infection she's been exposed to. For awhile there, if we even drove past a Target or Walmart she'd find a way to come down with something. Literally, she'd catch something, spend a week getting over it, be healthy for a week or two, catch something else, spend a week getting over it...and so on. She wound up with croup every three months or so.

 

When she was 5 or 6, we went to a pediatric pulmonologist (who turned out to be kind of an addle-brained crackpot, so we never went back) who diagnosed DD with illness-induced asthma, gave her an inhaler and prednisone, and put her on Singulair for 4 weeks. At the time, I was hearing all kinds of terrible things about Singulair and kids, so I ended up stopping it a week or so early. But from that point until about six months ago, she normalized. She'd have the occasional cold, but she never needed her inhaler. She never had croup again. I started to think that she was "cured." 

 

Last August, however, she came down with a nasty respiratory infection that lingered on, then turned into some terrible chest thing. She was congested some, but mainly she had this terrible, deep, dry-sounding cough that would turn into spasms. Her ped never really heard anything in her lungs in the many visits we made, but she ended up diagnosing DD with atypical walking pneumonia, putting her on prednisone and antibiotics, and prescribing a regimen of inhaler use every 2-3 hours unless she was sleeping. This went on for 4-6 weeks, until it finally subsided.

 

Since then, we've back to her catching every respiratory bug that passes by, and we just finished another round of "Is it pneumonia or not?!" She had several in-office nebulizer treatments, was given a short course of prednisone, and was told to use her inhaler every 4-6 hours (which was not nearly often enough, and even when she did use it, it honestly didn't seem to help the coughing ease off that much). She's still coughing and a bit congested, but we seem to have beaten it back for now. I'm just waiting nervously for the next round to begin :( Plus, every time she comes down with something, at least one of the rest of us comes down with it too, which makes for a lot of illness for one family.

 

Does this ring any bells with anyone? Is there an illness with these hallmarks that I should be discussing with our ped? Should I just ask if we should put her back on Singulair for awhile and see if it helps again? And why would Singulair "cure" her for a few years? I'm really trying to understand the mechanism of what's going on here. 

 

If anyone has any insight, I'd love to hear it. Thanks!

[NoPlaceLikeHome]

Your child needs to see another pediatric pulmonologist for possible asthma or other lung condition. having inadequately treated asthma and other lung diseases can lead to frequent respiratory infections. Your child may need a daily med like a steroid inhaler for asthma and rescue inhalers. I would also ask about a nebulizer for when she gets colds and an acapella device to help with deep breathing and coughing and clearing secretions when she has a respiratory infection. Also possibly an incentive spirometry for when she is sick too. Also, ask about plain mucinex without decongestant when she has any sign of cold to help prevent pneumonia. Finally, if there is any sign of sleep apnea like fatigue or snoring or waking up gasping ask for a sleep study since CPAP therapy can possibly help stabilize asthma patients. They are currently doing research on CPAP therapy for sleep and the benefits for asthma patients. I know CPAP has greatly helped me and nowadays they have masks that are like nasal cannula almost and are very comfortable. I get respiratory infections much, much less since being on CPAP therapy for past 4 years.

[NoPlaceLikeHome]

I forgot to add that aerobic exercise may help a lot too but have her evaluated first by a lung doctor.

[kbutton]

Get really good allergy testing along with the new pulmonologist. Make sure they consider food allergies as well. If allergies are a factor, go scorched earth on the allergies, whether that be dealing with dust mites or taking certain foods out of her diet. Knowing allergy seasons for your area and checking pollen counts before you plan your time outside might be super important if pollen is a factor. And BTW, sugar is often something that causes or worsens asthma flare ups for many of us. 

 

I am the poster child for oddball asthma onset, symptoms, etc. I have had to persuade my doctors to listen to me and to also learn my own body's cues to avoid really decompensating. Some of us seem to make a lot of secretions but not necessarily wheeze and such. Everyone I know that has that kind of asthma profile has had to be really proactive to get good care, and we all tend to head downhill fast without much warning. Preventive maintenance saves my bacon. One of the best things I did besides getting allergy shots (and I had allergies before developing asthma) was to get on really high quality probiotic, multi-vitamin, and FISH OIL. Esp. the fish oil (We use Shaklee; Nordic Naturals is also a good one).

 

At a certain point in the process of flare-ups, I respond MUCH better to nebulized meds than my inhaler. Night and day different. It breaks up secretions down inside my lungs--I can can literally hear bubbles (or whatever it is) going snap, crackle, pop in there like rice krispies in a bowl of milk. 

 

Find a good doctor who will listen and consider keeping a symptom journal that also talks about various activities, foods, etc.

[NoPlaceLikeHome]

I agree with PP since I have cough variant asthma and do not usually wheeze much at all if at all. Plus, my peak flows do not change dramatically at all (maybe because they are normally pretty low at about 400 ml) Also ask about a lung function study (PFT). I also have the mucus problem a lot which is why I ended up taking plain mucinex daily for about 8 years which only recently have I now take less often. Mucinex helped a lot and is a safe drug that has been around for 100 years. In fact, ladies trying to get pregnant take it safely. However, always ask your doctor first!

[J-rap]

Don't know the answer to your situation, but we've had some similar problems which eventually evolved into plain ol' asthma.  My daughter would pick up little colds, coughs, then bronchitis, then pneumonia...  repeatedly.  Finally at about age 10 or so (?), it developed into the more traditional asthma.  So, whether the other things were just pre-cursers, or whether they actually caused the asthma, I do not know.   Initially when she was diagnosed with asthma, it would still hit mainly during certain times of the year (fall -- as a reaction to the period when leaves were falling, perhaps a leaf mold), and winter (cold-weather sports). 

 

Four of my kids actually ended up with asthma, although none as bad as the one above.  However, they would randomly go through years when they had no problems at all, and then years when it became bad again.  For example, another daughter caught that bad chest-cold virus that's going around right now.  It triggered her asthma, which she hasn't had problems with for about 6 years!  Now suddenly she is back on preventatives, rescue inhalers, etc. 

 

Asthma is a strange bird, but even during the times when it seems "gone," I'm always nervous that it's right below the surface, waiting.

[kbutton]

I agree with PP since I have cough variant asthma and do not usually wheeze much at all if at all. Plus, my peak flows do not change dramatically at all (maybe because they are normally pretty low at about 400 ml) Also ask about a lung function study (PFT). I also have the mucus problem a lot which is why I ended up taking plain mucinex daily for about 8 years which only recently have I now take less often. Mucinex helped a lot and is a safe drug that has been around for 100 years. In fact, ladies trying to get pregnant take it safely. However, always ask your doctor first!

 

I've never been told that there is a name for this. Enlightening to find out that symptoms are worse at night or sometimes present only at night--when I have a flare-up, I can set my clock to when I'll need my inhaler late in the evening, and I'm often totally fine right up until that time. So weird. Thanks for the new lingo for me to research!

 

There is supposedly NO family history of asthma on either side of my family tree, but we have a fair amount of coughers. I am wondering if this is grossly overlooked, and maybe we do have a family history and don't know it.

[sbgrace]

I agree that you need to see pulmonology. It sounds like poorly controlled cough variant asthma may be a big part of the picture.

 

My son developed cough variant asthma after pneumonia. I never heard a wheeze on the child. But even outside cough/asthma flair his lung function on tests was poor. Really poor. It explained a lot of the cycle we were in at the time where every single virus seemed to set things off. We did a few months of inhaled steroid to calm things down. He did test positive to some allergens, so he takes daily Zyrtec now. His lung function for the last 1.5 years has been good, and he no longer reacts to viruses. I don't think he's cured, but he's so much better. He doesn't tolerate Singulair fwiw. His twin, though, has been on Singulair for about 8 years with no issues.

 

ETA: if you can't see pulmonology,the pediatrician may be able to do some lung function tests and/or prescribe an inhaled steroid for maintenance. You want to avoid needing the oral steroids as much as possible.

[klmama]

One of mine had Para pertussis and since then has had a nasty cough every time a respiratory illness hits our home.  I push use of both the Netipot (for clearing sinuses and to prevent drainage from going into lungs) and Mucinex (to help clear lungs if there is already congestion).  Lots of vitamin C and zinc, lots of vitamin D. I don't know if this would help your dc, but the deep, dry coughs turning into spasms you mentioned sounded a lot like Para pertussis. 

[blondeviolin]

I agree you probably want to see a pulmonologist. I'd also recommend checking for sinus issues. You could be dealing with a sinus infection that never really clears up and causes constant coughing and eventually pestering the lungs. Also make sure you check for allergies and acid reflux. Both can irritate the lungs.

 

Good luck!

[Catherine]

1. Find another pulmonologist

 

2. It sounds like Singulair was a good thing for her.  That, plus or minus a steroid inhaler, may get her to a place of stability that will last longer.

 

3. Respiratory viruses can provoke reactive airways in a susceptible person, and this looks and sounds like asthma, though it may go away with preventive meds like inhaled steroids or singulair.  I had that. 

[Insertcreativenamehere]

My son was very similar until he was diagnosed with cough variant asthma 2 years ago. He is much healthier now that is asthma is well-managed. Do see a good pediatric pulmonologist. 

[NoPlaceLikeHome]

One of mine had Para pertussis and since then has had a nasty cough every time a respiratory illness hits our home.  I push use of both the Netipot (for clearing sinuses and to prevent drainage from going into lungs) and Mucinex (to help clear lungs if there is already congestion).  Lots of vitamin C and zinc, lots of vitamin D. I don't know if this would help your dc, but the deep, dry coughs turning into spasms you mentioned sounded a lot like Para pertussis. 

I use Neilmed nasal rinses at the first sign of nasal congestion and gargles with mouthwash containing alcohol at the first sign of any cold to prevent any worsening of the cold too.

[Nemom]

You may want to consider meeting with an Immunologist and looking into whether or not she actually has an Immune Deficiency. Here are a couple of websites with some info:

 

http://www.info4pi.org/library/educational-materials/10-warning-signs

 

http://primaryimmune.org

 

ETA: Our Immunologist is in the same office as the Allergy & Asthma Doctors so they would be familiar with these illnesses.

 

My dd went through something very similar when she was younger. Picked up every infection and had a very difficult time getting over anything. I actually started hsing her because she was so sick in PS. She is much improved now that she is home but takes special medicine to help her immune system fit off the infections that she can't on her own.

[Storygirl]

I don't have much to offer to what others have said, but I applaud you for trying to find the root cause of her problem. Your initial post describes me since childhood. When I get sick, I get a terrible hacking cough that lasts for months. Although I passed an asthma test a number of years ago, I suspect that is my root problem. I have a rescue inhaler that I use periodically, and when I start to get sick, I try to nip it in the bud before it progresses. I can't remember a time that I was ill that it did not progress to the cough; it is just the way that my body responds to illness for some reason.

 

I did have a chest x-ray this spring because my cough, while minor at that time, was persistent and I was not sick in any other way. I also had some discomfort in my upper back. Fortunately the xray was normal. Unfortunately the cause of my propensity for respiratory weakness is still undiagnosed.

 

If you can figure out what is going on with her now, you may be changing the course of her health for the rest of her life, so it is worth it to pursue it. I'm 45 and wish that I had had someone figure this out for me thirty or forty years ago.

[amo_mea_filiis.]

Another vote for asthma and peds pulmo.

 

As for the singulair, one of mine takes it just fine (it's probably increasing her anxiety, but she's anxious off it as well) while the other one reacted crazy to it.

 

If your dd did well on singulair, give it to her. Be aware of and watch for the side effects, but don't eliminate because of possible but not seen side effects.

[gardenmom5]

I'd look for underlying causes of why her immune system is in this state.

 

I had a similar situation after I had the "virus from hades" that ravaged my system.  my immune system has never been the same.  every thing I was exposed to, I caught and it took forever to get well, just for me to get sick again a few weeks later.  one year, I had a sinus infection every single month.

 

I worked on strengthening my immune system, staying away from things I don't tolerate, and I have gotten healthier.  oh- and I've had several drs prescribe me inhalers (never an allergist) thinking I was asthmatic (um, no) - they actually make me worse.  the ER finally condescended to do a chest x-ray after my measured lung capacity DECREASED after an albuterol treatment.  (I had pneumonia.  I aspirated food.)

 

after a virus that just wanted to hang on - again, I was given an inhaler that really didn't do anything.  I found treating the mucus production was FAR more effective.

 

for me - staying away from sugar and breads (I ate pasta fine.) was amazing for my improvement.  (I ate as much as I wanted, - as long as there was no sugar.  that includes 'fake' sugar, and sugar substitutes like honey and agave.  and fructose.  they're still sugar.)

what I realized was the condition of my gut bacteria (or lack thereof) was playing a big role in how I was doing physically.

 

[Jann in TX]

My middle dd had RSV (common cold virus) when she was a few weeks old (insert LONG story and 3 weeks in hospital).  By 6 months she had developed a reactive airway disorder-- any hint of a respitory virus and she would be in major distress (cough was much worse at night-- if you heard wheeziing she needed to go to ER).

 

We were sent to a pediatric pulmonologist who barely examined her and said she had 'asthma' and to get rid of our carpets and pets, blah, blah, blah.. but I knew that was NOT the issue!  Thankfully our Ped. was going through the same issue with her twins (same age as dd with similar sypmtoms after a bad case of RSV). 

 

Our plan was to treat dd as soon as we suspected a flair-- if dd had a slight runny nose I knew I had 2 days to prepare and to make sure I had adequate meds on hand and that I knew what dose to give dd.  Our best friend was the nebulizer-- if possible get one-- MUCH better than inhalers!  DD was on steroids more often that we preferred--but she was breathing! 

 

When dd was in the hospital the second time my Ped insisted that a respitory therapest train me on how to hear lung sounds.  This was invaluable-- I could hear wheezing/pneumonia before most ER doctors.  I could make sure dd was properly medicated at the first sign of distress.

 

We lived this nightmare for the first 12 years of dd's life-- now at age 22 she just needs an occasional rescue inhaler (once or twice a year).

[Southern Ivy]

I agree with the suggestions to go to another pulmonologist.
I have had (diagnosed) asthma since 4th grade and I was ALWAYS sick with some form of respiratory infection. I can still pretty much guarantee that a head cold will drop to my chest within 2 days and I'll be out for a month, however my number of infections has gone down drastically as I've gotten older.
Like the PPs said, properly treated airways go along way in warding off this type of infection. They still happen, but not as frequently. 

[almondbutterandjelly]

Sounds like asthma to me.  I recommend an allergist (they tend to be asthma specialists as well because the two go hand in hand).  My dd had constant respiratory infections as a one year old.  From that alone (plus the fact that she had yet another one on the day of our appointment), she was diagnosed with asthma.  She's been on preventative meds and it has made a world of difference.  

 

By the way, if it's asthma, that means you have chronically inflamed lungs, aka twitchy lungs, and you must stay on preventative meds to keep the inflammation down.  Then they have addtional "rescue" meds for asthma attacks (which present as coughing in my kid.  She's never wheezed in her life.  She's a cougher.)  

 

Get thee to an allergist!

[wapiti]

Just piping in to agree with the PPs about asthma.

 

One other angle to consider, along with checking in on the status of the immune system, would be titers for mycoplasma pneumonia (not the only one out there, but extremely common).  Some people have a difficult time clearing this sneaky germ if they have a weak immune system, so to speak.

[LMV]

Some thoughts:

 

-Not all kids with asthma wheeze and not all kids who wheeze have asthma.  Bronchospasm (or closing up of the airways) is the hallmark of asthma but this can present with exercise intolerance, coughing, wheezing, or just poor air movement on exam.

-If you were unhappy with the first pediatric pulmonologist then get a referral to someone else but I think this is the sub specialist to start with.

-A chest x-ray and pulmonary function tests (PFTs) should be part of the initial workup.  Maybe your pediatrician will order these and then send them on to the pulmonologist to expedite an accurate diagnosis.  Our kids' pediatrician certainly would do this without being asked.

-Singulair labeling does include a warning (not a black box) about neuropsychiatric side effects, and the potential for eosinophillia [although the causal relationship to singulair has not been established and this may just be a result of the underlying asthma/atopy that these patients have---this is my current thought looking at the literature but I do think it is something to watch going forward] but if your daughter took it in the past without problems then I don't know that there is really reason to avoid it now just because some other children have different genetics which make the drug not a good choice for them.  That is not to say that singulair is necessarily the best option for your daughter (she might actually do better with an inhaled steroid or something else) but this is something to discuss with the pulmonologist.

-Kids with allergies and or GERD plus asthma often have more asthma flares when these other problems are not managed optimally.  The pulmonologist and your pediatrician should be evaluating for co-morbid conditions at least clinically and possibly with additional tests (ie. pH probes, allergy testing, EGD etc).

-The repeated and prolonged URIs may be the result of underlying asthma and managing the asthma may significantly improve this.  If not, further immunologic workup would be reasonable and this is something that at least good pediatricians can usually order enough to eliminate the concern or identify that there is a problem and then refer to allergy/immunology and or rheumatology or ID. Exactly who does what and niches in these overlapping fields sometime varies geographically and over the age span (ie. just as an example there are pockets where peds AI treats HIV but that is clearly the domain of adult ID and generally the domain of peds ID outside of some northeast pockets) so where you get referred may be different than others on the board.

[ILiveInFlipFlops]

THANK YOU, everyone, you've given me LOADS to think about. I'll start looking for a new peds pulmonologist today. Thankfully, we're in a well-populated, affluent area with a teaching hospital within 15 minutes, so we have at least a few to choose from. 

 

We did start allergy testing a few years back, but it was skin testing, and DD was so traumatized by it that she starts to get upset if I even mention finishing it. I'm not sure if the idea of having blood taken will be any better :-( I have a very, very bad feeling that dairy is one of the keys here, and when we've tried to remove dairy from our diet, it has been so difficult that we fall off the wagon within a few weeks. I really need to try again, I think. DD also has eczema (tiny itchy bumps, not scaly) that pops up occasionally, and in the last few months I noticed that the skin on her face is covered with teeny tiny bumps (smaller than the eczema, and closer together, more even), not even so much that you'd really notice unless you're constantly watching her for changes like I do! DH couldn't even see what I was talking about, but I can definitely see it. It doesn't bother her in any way (not red or sore or itchy--she didn't even know there was anything there), but just the fact that it's there means something is definitely going on :(

 

She does have a lot of mucus, and she has mentioned having yucky burps occasionally. I react to gluten with very bad reflux, hmmm... Maybe I should focus on that first instead of dairy. 

 

Her cough is gone now, thankfully, and she has LOADS of energy today. But I can still hear her snorking back mucus in her room, so I suspect it's only a matter of time before something else pops up.

 

I had no idea that you could have asthma without wheezing. The first thing every doctor asks is "Do you hear wheezing?" And I never do! We do have a history of asthma in the family--my grandmother, my dad, my BIL, DH (very very mild, very rare that he needs an inhaler), but it has always been the classic asthma. The other funny thing is that her cough has always sounded like a croupy barking cough, even when she didn't have croup (of course, it was really pronounced when she actually did have croup). No one has been able to explain that to me either. Although I guess, if her airways are inflamed every time she gets sick, that would probably explain it. 

 

Thanks for sharing your experience and your expertise with me. You've given me lots to research and discuss with the doctor when we go. I'm  :bigear: if anyone has other thoughts to share. 

 

 

[Joker]

I agree with others about finding a new doctor.

 

It sounds very similar to my own dd. My dd actually has an airway abnormality that included one of her bronchial tubes and lung. She was treated for recurrent croup from 4 months to 4 years old (when she was diagnosed via an endoscope under anesthesia). She also caught every illness and it would linger and usually become much worse than it did for others. Dd did Singulair and nebulizer treatments for years which helped a great deal. As she has grown, things have improved and she hasn't had any issues for awhile now (she's 13 now). Good luck!

[Ottakee]

Adding in here that our doctor said that unless/until you get the sinus congestion cleared you aren't going to clear the lungs.....

So that means an allergy pill plus nasal spray daily along with the inhaler daily. Huge huge difference.

 

You need a good pulmonologist.