Sinus issues in teen-- help needed

[Shellydon]

My 13 yo has had chronic sinus problems for several years.  A visit to the ENT 2 years ago resulted in a CAT scan which shows she has much smaller than normal sinus passages, so her sinuses throughout her head do not drain.  She is plagued by constant headaches, ear infections and generally not feeling well.  The only way we keep things under control is using doing the following twice a day--  nasal rinses, Mucinex, Sudafed, Flonase.  Even with this, she needs steroid and antibiotics 3 times a year for an infection.  Recently, she is reacting poorly to the Sudafed.  It is causing her heart to race and miss beats. This is a common side effect, but means she can no longer take it.  We tried Sudafed PE with the same results.  She is now on week 2 with no Sudafed and is totally sick and miserable.  The ENT said she need to be 18-20 yo before surgery was an option.

I think I will eventually take her to another ENT, but in the meantime, can anyone recommend anything that might help her drain her sinuses?

[Jean in Newcastle]

Nasal rinses with twice the salt.  The other thing that helped me was allergy shots (which doesn't drain the sinuses obviously but made me so much less congested). 

[Tap]

Does she have an illness that creates mucous (ie allergies, CF, immune system issues etc) or just the normal amount of mucous can't get out? 

If it is allergies, maybe an antihistamine would help to make less mucous. Or a nasal spray for allergies like Nasalcrom (not to replace flonase but to work with it). Oral antihistamines aren't always good for people prone to sinus infections, but sometimes they can use Nasalcrom without the drying side effect. (Oral antihistamines can be drying which create dried flakes of mucous in the sinus cavity. Those flakes can create pockets of old mucous and create infections.)

Have you looked into pressure points, massage or other ways to manually release the mucous? 

Does anything thing like swimming, hot showers, hot tubs or breathing steam seem to help to thin or  loosen the mucous? 

I would absolutely consult with another ENT. Especially if you have one affiliated with a children's hospital. They may be able to check her growth plates to see if she has stopped growing. Often, when they want to wait for a child to in their late teens before a procedure, this is what they are waiting for. If you can confirm she has or has not stopped growing, it may factor into the surgery options. Also, a new ENT can maybe give new ideas on treatment options. 

 

[Pippen]

If it's been two years since she's had a CT scan and has had continuing problems, I'm surprised the doctor doesn't want to reevaluate her and repeat the scan. After so many repeated infections the sinus tissue can become inflamed and all the treatment in the world isn't going to undo it. I had that issues from repeated sinus infections and allergies and was sorry that I didn't have surgery to clear out the inflamed tissue years earlier than I did. 

Was her diagnosis a deviated septum, or something more?  I'm curious about the age issue, because my preschooler had the same surgery I did , except he didn't have a deviated septum--just inflamed tissue. 

Allergy shots helped. Eliminating some problems foods, especially dairy, helped. Sinus surgery helped even more. And honestly chiropractic adjustments helped as well, only I don't think they'd have been as helpful if I hadn't dealt with the others. 

[J-rap]

I'm sorry for your dd.  My dd had similar problems, although maybe not quite as bad.  Everything is just very small on her!  She had to have 10 baby teeth pulled to make room in her mouth, for example.  And her sinuses are very small/narrow.  Every time she got a cold (usually right after Christmas), she had it for the entire winter because her sinuses just couldn't let go of it.  She always needed antibiotics eventually, and then finally a few days on prednisone to open everything up again.  She was pretty miserable every winter, for years, all the way through college.  We tried saline rinses, allergy meds, vitamin C, diet changes, trying to get more sleep, etc. as preventatives.  It was hard to tell if anything made a difference on its own, but maybe together everything helped?  She has just made it through her second winter after college, and these are the first two years that she had winter colds...and just got over them, no help needed.  No antibiotics or prednisone.  Hopefully this is a sign of things to come!  

In hind site, I maybe didn't dig into it as much as I could have.  I just figured it was something we had to get through, not fix.  Your dd sounds pretty miserable so a second opinion might be worth doing.  

After writing all of this out, I realize I really have no advice to give at all!  So probably totally unhelpful.  But maybe it will give you hope that things can improve over time?

 

Edited April 28, 2020 by J-rap

[Ottakee]

Coricidan (spelling??) Is a med used for congestion in those with heart concerns.

Are they culturing what is growing in her sinuses before deciding on an antibiotic....and then Making sure it is really, truly gone?   

I have heard of people having good luck with putting triple antibiotic ointment in the nostrils.

 

[BookwormTo2]

One of our friend’s daughters had a very similar problem. After doing simple bloodwork at the lab she was diagnosed hypothyroid at 13 y.o.; soon after they figured out she had a milk intolerance. Between avoiding dairy and taking thyroid medicine, she now only has once in a blue moon seasonal allergies — I think she uses generic Singulair and OTC Zyrtec when that happens. Who knew sometimes a major and ongoing sinus/allergy problem (combined w/ major fatigue, headaches and other stuff) is an indicator to check the thyroid?

[Kanin]

For some people, sinus issues are the only sign of celiac disease. My mom went GF at age 65 and said it was the first time she could actually breathe through her nose in her entire life!

[J-rap]

39 minutes ago, Mainer said:

For some people, sinus issues are the only sign of celiac disease. My mom went GF at age 65 and said it was the first time she could actually breathe through her nose in her entire life!

Yes, I've heard this too!  In fact, this was suspected in my dd, so she actually had the celiac biopsy done when she was very young.  Immediately after the biopsy, the surgeon told us that it did look like celiac (I think the celiac stomach lining or intestinal lining is smoother -- making it harder to absorb nutrients, or something like that), but the pathology test reported that it was not celiac.  I've often wondered though if our family has some celiac-tendencies, if that's even a thing.  My dh's 23andme said that he has the genetics that show that celiac is a possibility, and I have three other kids who mostly avoid gluten and feel a lot better as a result.

[Kanin]

43 minutes ago, J-rap said:

Yes, I've heard this too!  In fact, this was suspected in my dd, so she actually had the celiac biopsy done when she was very young.  Immediately after the biopsy, the surgeon told us that it did look like celiac (I think the celiac stomach lining or intestinal lining is smoother -- making it harder to absorb nutrients, or something like that), but the pathology test reported that it was not celiac.  I've often wondered though if our family has some celiac-tendencies, if that's even a thing.  My dh's 23andme said that he has the genetics that show that celiac is a possibility, and I have three other kids who mostly avoid gluten and feel a lot better as a result.

Interesting! Maybe her intestinal lining was damaged, but not enough to be positive? Celiac is a tricky thing.

[Jean in Newcastle]

1 hour ago, J-rap said:

Yes, I've heard this too!  In fact, this was suspected in my dd, so she actually had the celiac biopsy done when she was very young.  Immediately after the biopsy, the surgeon told us that it did look like celiac (I think the celiac stomach lining or intestinal lining is smoother -- making it harder to absorb nutrients, or something like that), but the pathology test reported that it was not celiac.  I've often wondered though if our family has some celiac-tendencies, if that's even a thing.  My dh's 23andme said that he has the genetics that show that celiac is a possibility, and I have three other kids who mostly avoid gluten and feel a lot better as a result.

non-celiac gluten insensitivity is a thing.