Make it stop...
December 28, 2018 9:52 AM   Subscribe

My son has a very chronic stuffed up nose. Inside are the things we have tried. What else can we try?

My son (12, autism/adhd) has a chronic stuffed up nose, and has for about four years. He's seen two primary care docs, an ENT, and an allergist, with no relief. ENT would ultimately like to take out his (very enlarged) adenoids, but son does not want the surgery, and I have not pushed it.

Here are the things we have tried to reduce the symptoms. What else can we try?

Ongoing now:
- Neti pot a few times a week. Huge blobs of mucus come out of his nose when we do it, but the symptoms come back within 30 minutes
- Allegra daily, which reduces it but doesn't completely solve the problem.

- Flonaise and also Nasacort. Helped some, but we've stopped nose sprays due to them causing increased nosebleeds without completely solving the stuffiness issue. Also, he HATES the feeling and taste of the sprays.
- Allergen testing. Allergist said it is not an allergic reaction and to go back to the ENT.
- A variety of OTC drugs. We've tried basically all the OTC meds except bennadryl, which I refuse to have him on long term.

His constant snuffling is disgusting, and we go through boxes and boxes of tissues. I'm super frustrated with doctors who say "well, we have no idea what is causing this."

Because of his sensory issues, I'm reluctant to force him to continue therapies that aren't showing clear benefits in 30 days, but would be willing to force something (like a nasal spray) if he shows clear improvement in a reasonable period of time. His adenoids are enlarged, but ENT refused to say if that was a symptom or the core problem. He's basically "well, let's take them out and we'll see if that fixes it" and the kid himself is opposed to the surgery.

posted by anastasiav to Health & Fitness (37 answers total) 3 users marked this as a favorite
They make a Flonase that is scent/taste free. I've used it and was surprised how it actually didn't have that weird scent and that it was refreshing.

Another thing that might help is rotating through OTC allergy meds. I do a month of Allegra, then a month of Zyrtec, then a month of Claritin, and repeat. It helps keep things a little fresh.
posted by kendrak at 10:00 AM on December 28, 2018 [7 favorites]

You might give Azelastine nasal spray a try, by prescription. Azelastine is a topical (surface application) antihistamine. It applies an antihistamine directly to the nasal tissues so it doesn't have the systemic side effects of oral antihistamines like Allegra. It is much more benign and safe than powerful steroids like Flonaise and Nasocort.

If you are going the route of antihistamine, no sense taking it orally if you are only concerned about nasal tissue. Get the spray.
posted by JackFlash at 10:03 AM on December 28, 2018 [2 favorites]

My friend's daughter suffered congestion for years before they were finally able to diagnose a dust mite allergy. Changing up the bedding, removing stuffies/carpets/curtains, etc. really made a difference in her health. Something to consider if you are desperate.
posted by obliquity of the ecliptic at 10:09 AM on December 28, 2018 [6 favorites]

I know the allergist said it's not an allergic reaction, but here are some things that helped me, a mild indoor allergy sufferer:

-robot vacuum, which has taken a lot of dust and cat dander out of the air
-air filter
-pillow and duvet that don't contain down or feathers
posted by mai at 10:10 AM on December 28, 2018 [2 favorites]

My husband does a nasal rinse (the NeilMed squeeze bottle) twice daily with a saline and liquid Budesonide (it's meant for a nebulizer.) It's helped him keep his sinus polyps under control and he is way less snotty.

Despite being generic the liquid Budesonide very expensive (cost without insurance is $700/month) so I wouldn't recommend doing so unless covered by insurance.
posted by vespabelle at 10:13 AM on December 28, 2018 [2 favorites]

I have a deviated septum (one nostril narrower than the other). I also had chronic nose and throat infections and stuffed nose for years. I assumed these things were linked, so I went to the doctor to see if anything could be done to correct my narrow nostril. Here in the UK the NHS tends to want to try out medication before considering surgery, so after consulting with an ENT I was put on a course of super-strong antibiotics (Clarithromycin), combined with a nasal steroid spray (Flixonase).

This combination seemed to deal with the underlying chronic infection and deal with the inflammation that had prolonged it. After (I think, this was last year) eight weeks on this combination, my stuffed nose cleared up remarkably and has not recurred.
posted by Happy Dave at 10:14 AM on December 28, 2018 [1 favorite]

Get a 2nd opinion from a different ENT. Also wondering if there are non-surgical procedures that can shrink adenoids.
posted by ZeusHumms at 10:20 AM on December 28, 2018 [1 favorite]

It took me years to get diagnosed with a dust mite allergy, and even longer to realize my constant sinus gunk and postnasal drip were due to a food intolerance to dairy. Once I was diagnosed with dust mite allergy I started using a HEPA filter in the bedroom, good quality mattress cover, getting someone else to do the vacuuming, etc. but I still had constant mucous production until I started avoiding dairy this year when my GI symptoms started getting worse. I just thought I had a touch of lactose intolerance or something but that wasn't the case. Don't rule out food as a possible cause--I never dreamed something like that could be causing my respiratory symptoms.
posted by impishoptimist at 10:21 AM on December 28, 2018 [2 favorites]

Saline nasal spray, several times a day.
Generally stay extremely well hydrated.

While I wouldn’t exactly push the surgery, you and your son are going against doctors orders by not getting it. It’s relatively easy and minor, from the ENT’s perspective. So maybe time to have a broader discussion and soul searching about how and why and under what conditions we don’t do what doctors say we should do to get better. I haven’t always followed doctor’s orders, but in those cases I like to have a reasonably informed dissent and abstention, rather than “nah I don’t like the sound of that”.
posted by SaltySalticid at 10:33 AM on December 28, 2018 [10 favorites]

Has he been screened for polyps or deviated septum yet? That was the next step after trying the corticosteroids. I was offered surgery for my deviated septum but ended up sticking with the nasal spray until things settled down. I still use rinses religiously if I feel any inflammation of mucous coming on.

edit: I missed the part where you mentioned the adenoids/ENT visit. nevermind!
posted by Violet Femme at 10:35 AM on December 28, 2018

This might be useful. I would treat it as an allergy to dust mites, pet, dairy; elimination diets and dust control.
posted by theora55 at 10:38 AM on December 28, 2018

If his enlarged adenoids are the problem, there may not be a solution that doesn't involve somehow addressing that. If they are physically blocking his nasal passages due to their size, then that's kind of that. Conversely, addressing them might very well cure his problem completely. I would push both him and his ENT toward finding a solution there that he can accept (after confirming with the ENT that his enlarged adenoids are indeed the root issue) and if surgery really is the only solution then I'd push him toward accepting that. Surgery sucks, but it's temporary. Being chronically unable to breathe sucks too, and is permanent. He likely doesn't realize just how much nicer life would be if he could breathe properly, but the difference is huge.
posted by Anticipation Of A New Lover's Arrival, The at 10:40 AM on December 28, 2018 [9 favorites]

I felt like the Sensimist wasn't really getting where it was supposed to be for my sinus stuff, but it was indeed a much improved smell/taste/whatever combo.

I know antibiotics are overprescribed here, but that's the thing I'm really not seeing, and I've had a couple of times where I've had sinus infections that were not severe enough to lead to a significant fever, but that persisted until I got a longer course of antibiotics, and man, the fact that you're not just talking about "stuffy" but about mucus in quantity makes me think that if he hasn't at some point in this process gotten an extended antibiotic course, you do need to talk to a different doctor. My *propensity* for getting sinus infections is also a thing that I've had doctors start suggesting might need surgical attention, but that doesn't mean skipping the antibiotics when it comes up.
posted by Sequence at 10:43 AM on December 28, 2018

I had my adenoids removed at 35. I spent 35 miserable years not being able to breathe freely. I get not wanting surgery. But it was really really quick and easy and I had very little pain afterwards. (It's supposed to be easier on kids, too). If he wants a first hand account that it's not scary you can MeMail me.
posted by Green Eyed Monster at 10:44 AM on December 28, 2018 [7 favorites]

Elimination diet with extra focus on soy, dairy, wheat, and corn. I know several kids with chronic problems that were going to be addressed with surgery (as a last resort) that were able to resolve major phlegm issues and associated infections by cutting out common food allergens.
posted by quince at 10:47 AM on December 28, 2018 [4 favorites]

I was also going to ask about dairy and water consumption. Poor kid :-(
posted by catspajammies at 11:10 AM on December 28, 2018

Yeah, sorry - we did try dairy elimination with no improvement. We have not tried wheat but I eat gluten free so there's very little wheat in our house to start with.

He did two runs of antibiotics when this first started, years ago, as the original dx was a sinus infection. No effect.

Bedding is something to consider. He does for sure need a new mattress.

The thing about the surgery is the ENT seemed to throw it out as an answer to my "really? Is there nothing else we can try?" type question. It was not his first suggestion, and it felt very much like a "yeah, I'm happy to do surgery but no idea if it will fix the thing" answer.

Thanks for the comments, and I look forward to reading more.
posted by anastasiav at 11:46 AM on December 28, 2018 [1 favorite]

Most nasal sprays are antihistamines or saline. Here's one that's not as well known, but works by a very different mechanism: Nasalcrom. It works by inhibiting mast cells.

My SO had a mechanical irritation in his nasal passages (old surgical screw), but the Nasalcrom helped.

It's available at _some_ drug stores; I found a good locator on their web site. I suggest calling ahead, though, because it's sometimes in weird places within the store, or behind the counter. (Well, I just checked for Chicago, and it's only showing 3 Walmart locations with "call for stock", so maybe not that helpful). You can, of course, order it online.

It works really well. It might not solve your problem, but it's really mild to use (doesn't sting or anything when used), and not that expensive, so probably worth a try.

Looking for info about Nasalcrom just now, I found info about something called "mast cell activation disease" - I think that might affect more systems than just the nasal passages, but it's something to look into if you are interested.
posted by amtho at 12:12 PM on December 28, 2018 [1 favorite]

Has he had an X-ray or ct scan of his sinuses? One of mine was blocked congenitally (with bone, the drainage passage never developed) and that led to years of sinus issues till it was diagnosed and surgically repaired- they just drilled a passage for it and I was cured, basically.
posted by john_snow at 12:46 PM on December 28, 2018 [2 favorites]

Meant to add, it always seemed like a sinus infection but antibiotics didn’t help. Your mention of that not helping you is what made me think of this.
posted by john_snow at 12:48 PM on December 28, 2018 [2 favorites]

I know you said you're gf but I'm going to chime in that it may be the culprit. My kiddo was always snuffly and at one point was sneezing CONSTANTLY, even in the middle of the night, until we took him back down to a completely gf diet. I encourage you to take one more hard look at his diet, and what caregivers might be giving him. I found out, finally, that one of our caregivers was giving him a bread snack every morning; it had slipped her mind that this was a no-no, and since she was giving it to him he didn't think it was an issue and didn't mention it to me (though, he was/is younger than your son). My daycare also gives "unauthorized "snacks to my younger kiddo, and I have to check in from time to time to make sure they don't "forget" (imo they don't forget, they just don't want to be the one to deal with the kid's disappointment - a whole different talk show, to be sure).

We basically took kiddo down to rice bowls, 100% prepared at home, light seasoning, steamed veg with butter, no store-bought sauces, also fresh fruit, and nuts or cheese for snacks, and scrambled eggs for breakfast - you could add a grain. His issue was mostly resolved within a few days, but then again it hadn't been going on for years, as what you describe. In your case I might suggest giving it a little extra time to allow your kiddo's body to heal.

If you can't pinpoint it as a food allergy, then maybe try a different allergist? Someone more motivated to solve the issue than just prescribe meds or give a surgery rec.

Best of luck for your kiddo.
posted by vignettist at 12:49 PM on December 28, 2018 [1 favorite]

Your son's problems are more severe than my husbands, but we started using this hepa air purifier in our bedroom a few weeks ago and he no longer sneezes for 30 minutes straight every morning.
posted by avocado_of_merriment at 1:06 PM on December 28, 2018 [2 favorites]

Yes, is there a way of getting a second allergist to weigh in? It seems odd for the allergist to say 'nope not allergies' given that Allegra is apparently improving symptoms (suggesting a histamine response is happening).
posted by halation at 1:51 PM on December 28, 2018

An allergist told me to blow my chronically stuffed-up nose into a wet washcloth while in the shower. It works.
posted by Carol Anne at 2:02 PM on December 28, 2018 [2 favorites]

I’m your son and it is miserable. Adenoid removal helped some and so did switching out bedding. A steam mask helps a lot and so does neem (or other) oil inside my nostrils. It helps them not be so dried out, which kicks up their mucus production and swelling. (If you live in a dry climate, consider a humidifier.) Singulair has been a huge blessing, although I’m not sure how young you can take it.

You might want to look into Mast Cell Activation Syndrome - it’s rarely diagnosed, but actually fairly common. Our mast cells are for fighting things like parasites and since there aren’t a lot of those around these days they can act up and cause inflammation in the body. It sounds like woo, but there are reliable blood tests and plenty of science to back it. Anecdotally, it seems more common among my autistic friends. I haven’t completed the blood work (life is in the way) but the trial of singulair is helping.

I strongly suggest looking for whoever the complex issues ENT/allergist is in your area. Typical allergists are quick to do testing and rule out allergies that their test didn’t catch. If he has a rarer allergy or sensitivity or MCAS a stick and poke test isn’t going to turn it up.

Also, a major caution about elimination diets. Long term they actually exacerbate allergies. The new research suggests that they should only be used to confirm not to try and diagnose. This is a pretty big shift from the last couple decades where they’ve been prescribed for everything.
posted by stoneweaver at 2:28 PM on December 28, 2018 [5 favorites]

I used to be a 12-year-old with a chronically stuffed up nose and sinuses. Regular neti pot usage improved my quality of life more than any other single decision I have ever made. "A few times a week" is not nearly what I mean by regular usage.

Today - as an adult, now that the vast majority of my allergies have cleared up and my nose really isn't stuffy most of the time - I use the neti pot every single morning, no matter how good my sinuses are feeling. When I feel like I might be getting a cold, I use it about four times a day. If I were in your son's position, I'd do it four times a day and only start tapering down to once a day once I saw improvement.

If you google how much neti pot usage is too much, you'll find some doctors expressing vague concern about long-term usage possibly making sinus conditions worse, but there's been very few good studies on the subject and no one really knows anything for sure. I can only tell you anecdotally I've been doing this for about 15 years now and my sinus health is ridiculously better than when I started and continues to improve. If you're concerned about amoebas and other contaminants, buy jugs of distilled water.
posted by waffleriot at 2:54 PM on December 28, 2018

I had the surgery as an adult. It will help, perhaps by a lot, like 80-90%. It will likely not cure it. If his adenoids are huge, however, you can throw medicine at this problems for days and it will not fix it. Adenoids typically go away when kids are fairly young. They certainly should not be swollen. Mine were blocking my nasal airway by 80%. Removing them gave the other medications--like nasal sprays and neti pots--a chance to actually do their job. They were acting like this huge giant barrier that prevented anything from getting in that may actually help.

Just worth considering.
posted by Amy93 at 2:56 PM on December 28, 2018 [6 favorites]

If he ends up with more steroidal nasal sprays, here's a small hint to help prevent nosebleeds: Each time he uses the spray, he should direct the nozzle to different part of his nose. Think straight up/ to the left/ to the right.

Yes, the spray goes everywhere, but if you alternate the direction of the spray each day, the same area doesn't get hit as much and weakened.
posted by jenquat at 4:34 PM on December 28, 2018 [2 favorites]

How’s the humidity level in your house? A very low humidity level will irritate the nasal passages and make your nose run. If this could be a factor, try getting a small humidifier and putting it in his room.
posted by Autumnheart at 5:35 PM on December 28, 2018

I have horrible dust mite allergies (have been diagnosed through testing) and the one thing that helps me that you haven't mentioned is an air purifier in the bedroom. I noticed a change within a few days. The Wirecutter has a good guide (if you don't get one of their recommended models, at least follow their guidelines to make sure you get the right kind).
posted by radioamy at 5:57 PM on December 28, 2018

Sudafed? The real stuff with pseudoephedrine in it that you have to ask the pharmacist for.
posted by w0mbat at 5:57 PM on December 28, 2018

Have you tried removing dairy (maybe even go so far as remove anything with casein in it, which includes some things that claim to be dairy-free)?

Yes, I realize you said you've talked to an allergist. Regardless of what the allergist said, and especially if he has any favorite foods that are dairy, TRY IT ANYWAY.

(Two people I know, one my son, one my much younger male cousin, BOTH had some sort of issue with dairy that caused this exact thing to an extreme. In my son, it began at about a year old, and has mostly disappeared by 18. In my cousin, it took them until he was a young teen to figure out what was causing it, and he has to avoid it to this day. Neither triggered dairy on allergy testing. The rest of the extended family has no issue with dairy other than typical varied levels of lactose intolerance.)
posted by stormyteal at 9:13 PM on December 28, 2018

Azelastine (mentioned above) works well for me. However, it has a very bitter taste, so as mentioned in your post, your son may not like it.
posted by JimN2TAW at 5:36 AM on December 29, 2018

Any chance he has fungal balls in his sinuses?
Or a low-grade staph / strep / other bacterial infection inside his nose?
posted by pseudostrabismus at 4:57 PM on December 29, 2018 [1 favorite]

Such good advice here. We have lots of sinus issues in our house and we live in the Pacific Northwest where winter sinus issues are endemic. Here are a few things that have been helpful.

1. Other people have brought up the neti pot, and one person mentioned neem oil and how oiling your nose is useful. It's very useful to oil the nose right after the neti pot (daily for me) using Nasya oil; it prevents dryness and makes the effects of the neti last longer. Nasya oil Ayurvedic and was designed for just this purpose (Banyan Botanicals).

2. Guaifenesin supplements. Guaifenesin is the main ingredient in some cough syrups (Mucinex). It is an amazing mucus drainer and very safe and affordable. Do a search on "guaifenesin capsules."

3. EDS-FLU. This is a new delivery device for fluticasone (Flonase). You breathe into the device to actuate the medicine release. The standard Flonase spray device actually shuts down or collapses the upper level of the nasal passages (this is why the medicine never seems to get everywhere it needs to go). This is a new product and you'll need to find a doctor to get this one.
posted by Prunier at 3:58 PM on December 30, 2018 [1 favorite]

I'm resistant to share anything that could be construed as "woo", but I thought my story might been informative. When I was pregnant I got debilitating acid reflux, but it did not appear has heart burn, rather as congestion. You see the acid got up into my lungs, vocal cords etc and I got a terrible cough and congested nose. I was able to resolve this with medication that is for acid reflux and changing my diet (and this is the part that seemed woo to me, but worked great) to eliminate foods that cause acid reflux. They were *varied* from all dairy, acidic foods like citrus and tomatoes, caffeine, garlic, onions...I could go on (google it). I could tell within about 48 hours that the new diet was working. I'd suggest just trying it, because you seem pretty desperate. You'd know pretty quickly if that is what it was, and there are worse things than having to be on a restricted diet.
posted by Toddles at 9:09 PM on December 30, 2018

ENT here. Lots of good advice in this thread. I just wanted to echo those who said adenoidectomy may be the only route to reduction of the nasal obstruction. Do you happen to have an adenoid Xray or a CT scan that you can share?

The other structure that commonly causes nasal obstruction and that can reduced (in size/bulk) with a relatively simple procedure is the inferior turbinate. This is a column of tissue that sits low in the nose and can swell due to many factors, including allergy, non-allergen irritants, past infections, and genetics.

Finally, chronic sinusitis can cause significant nasal obstruction and mucus production. If he were my patient, I'd treat him with an aggressive (2-3 week) course of a strong antibiotic (like Bactrim or Augmentin) and get a post-treatment CT scan. If the sinuses are clear, you're likely just dealing with adenoid and/or turbinate issues. If they show findings consistent with chronic sinus disease, that may need to be treated as well.

Adenoidectomy and inferior turbinate reduction (by submucosal resection) are quite easy technically, common in the ENT surgical world, and have a high success rate. There is little if any pain afterwards. Please message me if you have questions!
posted by Fritzle at 11:00 AM on January 4 [2 favorites]

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