Sinus Surgery in 4 Year Old- Looking for Information

CCyr

New member
Hi everyone! My son is 4 years old (DDF508) and it looks like sinus surgery might be happenning in the next few months. From Sept-December he was on sick plan almost non stop (3 weeks to get rid of the illness, 1 week off, repeat)-- no huge illnesses but a very insistent cough that kept coming back. He also had sinusitis that whole time as well. He's been healthy since the end of December after a round of bactrim, luckily, but they had him do a CT scan to get a better idea of why he had a hard time staying healthy. Not surprisingly the CT scan showed his sinuses completely blocked up with mucus. They said he's too young to do nasal rinses so they are referring us to an ENT who will most likely want to do surgery, although we haven't met with them yet. He's culturing stenotropomonas maltophilia currently altho has cultured staph aureus and pseudo in the past.

I know sinus surgeries don't seem to last very long for CFers so I was wondering what everyone else's experience with it was like with a young child? As he gets older I assume we will start nasal rinses to prevent needing more surgeries in the future, but for now this seems like to only way to clear him up. I know it's a pretty brutal surgery so I'd be really interested in hearing your opinions- was it worth it? Does your child get sick more often with clogged sinuses? Do they usually do a tune up while he's already in the hospital for the surgery? How long did it take to get back to normal after the surgery? Would you recommend it?

Thank you in advance :)
 

Aboveallislove

Super Moderator
Hey mom,
Sorry I can't answer your questions but did want to throw out a question/thought. Is he doing hypertonic saline? I'm wondering if that might give him some relief over the next few months, doing it with a mask after his bronchial dialator? I read somewhere that doing the meds with a mask gets it up to the sinuses too and the once we started the hypersal with our son (around 2), his nose would run whereas before it never did. Just a thought for something in the meantime. Also, I thought some did actually do sinus rinses younger.... hopefully someone can chime in. Hang in there!!
 

CCyr

New member
Hey mom,
Sorry I can't answer your questions but did want to throw out a question/thought. Is he doing hypertonic saline? I'm wondering if that might give him some relief over the next few months, doing it with a mask after his bronchial dialator? I read somewhere that doing the meds with a mask gets it up to the sinuses too and the once we started the hypersal with our son (around 2), his nose would run whereas before it never did. Just a thought for something in the meantime. Also, I thought some did actually do sinus rinses younger.... hopefully someone can chime in. Hang in there!!

Thanks! He's not on HTS at the moment but they are scheduling an HTS challenge for our next visit to see if it tolerates it. We started adding in nasal saline spray with every treatment but he kind of hates it so I don't know how effective it is. I thought I had seen younger kids doing sinus rinses too, but my clinic says they usually start around 6yo? I'd love to hear tips from parents who do it younger!

-Cassie
 

Aboveallislove

Super Moderator
Hey Cassie,

Just to add some info: Our clinic didn't have us do the "challenge" even though our son was only 2ish, but they told me to start him off slow and I did...I literally did it the first time for 5 seconds. Then I built up to 10. The second he coughed, I stopped. My thought was 1) I didn't want him to dislike it; and 2) I didn't want to have a negative reaction just from hitting it hard that would take it off the plate for a possible treatment. He absolutely LOVES it now and I think it really has helped. He does the 7% which is I think the strongest. I'm wondering if his next appointment is a couple months out, if you think it might be worth asking if you can just do it very slowly at home. The key is to make sure it is right after his bronchial dilator (Xopenex or albuterol) so there are no bronchial spasms. And they told me if he has one to do another Xopenex right away (even if he already had one). Your clinic might be more reserved on trying it though; our CF doctor actually ran the study of under 6 so I think she was more comfortable with doing it this way and again, I really really did it sooooo slowly. Good luck!
 

Ratatosk

Administrator
Staff member
DS' mucus is so thick that until he started pulmozyme at age 3 I had never ever seen his nose run. Was always using the dreaded bulb syringe and saline spray as a baby to try and clear his nose. DS started doing sinus rinses when he was 4 years old. I had him use the bottle, not the neti pot. Stood in front of the sink, I gently squirted it up his nose while chanting for him to keep his mouth open. Could NOT believe the JUNK that came out of that teeny tiny little nose. He actually taught his 70 year old grandfather with sinus issues how to do it. I started out bribing him to do it. I've heard some parents have their kids do this while in the bath or shower. He eventually figured out how disgusted I was by the sinus mucus and did it solely to make me dry heave. :)


A few years later sinus rinses stopped working, was snoring, mouth breathing and we got a recommendation for an ENT who was familiar wcf. He put a scope up his nose to look at his sinuses. No polyps. His septum area was very inflamed. He prescribed a nasal steroid spray -- nasonex, now he uses generic Flonase. Sinus CT showed typical CF sinus disease. Within days of using the sinus spray, he could breathe thru his nose. So far it's done the trick.

I've had a couple friends who've kids have had sinus surgery. One said her daughter had immediate results -- could breathe, slept better, wasn't as cranky and ate more. Unfortunately, a year or so later she ended up having to have surgery again. Another friend of mine whose son is a couple years younger than ds has had numerous sinus surgeries. So it's VERY important to have your CF clinic refer you to a ENT who is familiar with CF Sinus disease/issues.
 

imported_Momto2

New member
I had tons of sinus surgeries when I was a kid, probably one every 2 years until I was in my late teens. The recovery wasnt too bad. I would usually get sick to my stomach from the blood I swallowed during surgery and throw up a few times. My nose stayed packed for a couple of days, which was annoying, but not really painful. It did swell up a bit. I was usually back to normal within a few days. They always did an IV tune-up to prevent secondary infection when I had the surgery. Afterwards there was a huge difference, but it only lasted about a month. Then I would go right back to same old, completely stuffed sinuses. I dont know if they caused me to get sick more often, because stuffed was the norm for me. Was it all worth it? As a mom today, I would say no, it was not worth repeating time after time, not my particular case. However, every kid is different. I personally would have the surgery done once, and then evaluate the situation, your son may get a lot more long-term benefit.
 

Gammaw

Super Moderator
Hi CC. We've been in your position a lot. Generally the ENTs will wait to do surgery until you're tired of any discomfort or until it becomes necessary for other health reasons. Polyps do come back, sometimes within a month and sometimes not for years. It depends on the individual. Sometimes there is no choice....My son came to a point where polyps were pressing on his optic nerve causing double vision. Surgery was scheduled immediately to avoid permanent damage. They also checked to see if there was any oressure on the brain. Other times it just causes a stuffy nose. Polyps can also decrease the ability to taste or smell, cause headaches, impair the ability to get into a deep sleep, cause irritability, distraction, poor behavior from constant discomfort, etc! Everyone is a bit different. When they are so young, you need to watch for anything out of the ordinary for them and make sure it's not being caused by polyps. Call your ENT is you're uncertain. That's how we knew the eye issues were related despite having two opthamologists and an optometrist telling us he just needed glasses. He was 20/20 immediately after surgery To the surprise of the opthamology department at our CF Center Hospital.
The only way I know to determine if they will return after surgery and how frequent is to do the surgery and see.
As for how difficult it is.....that can vary too. The extent of the surgery depends on your ENT and your child's condition. There are different levels of sinus surgery. Just discuss the plan and options with your ENT. Our little guy had had 3 surgeries in just 3 years and his polyps returned within 3 months - except for this last time when it took 8. That may be due to our ENTs use of a device called a propel implant. It contains a steroid that reduces inflammation during healing. He has always done well and had little or no pain after surgery the first two times. But he was admitted for a tuneup prior to each one and after a week or so they would do the surgery. This last time his PFTS and Throat swab were so good they just avoided a tuneup. It was a much more difficult recovery with more swelling and infection. That might also be the propel implant. There's no way to tell. I would likely admit for a tuneup if he needs another surgery.
I hope this helps some. Feel free to PM me or post with other questions and I will try to help. Take heart ..... they say the lungs tend to fare better in those with polyps!
 

CCyr

New member
Thanks everyone! This information is really helpful, now I'll have some ideas for other options when we go in to meet with the ENT. I think if they suggest surgery anyways we will likely do it but be more aggressive in prevention moving forward. Hopefully he won't need it but now I feel better about it if he does :) I appreciate your insight!!
 
W

welshwitch

Guest
I've had sinus surgery 4 or 5 times since I was 8 and I'd recommend it. I like the advice of trying it and seeing how happy you are with the process and the results. For me it made a huge difference. Unfortunately they DO come back! I'm currently contemplating yet another procedure…..luckily it is a very simple operation and medical technology has come a LONG way since I first had it done in the 80's.

Good luck to you and your son! <3
 
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