It Turns Out Sinus Rinses Are a Good Idea

[rosesixtyfive]

My Sam is going to have a bronchoscopy, a picc line, and sinus surgery this summer. I hate it for him, but I thought I would share with other parents what I have learned from this experience - teach your kids to do sinus rinses from a very young age. Our CF doctor let us know that there are some CF centers that did studies where they trained parents to administer sinus rinses to babies. That way, the kids don't think much of it. Now, that our son has something in his nose that must be removed with surgery, the same CF doctor told us that 90% of surgeries can be avoided just by using sinus rinses. We would have liked to have known that info before and also would have liked to have gone to a CF center that experimented with sinus irrigation on very young patients. I thought everyone should know, even if your child is not showing sinus symptoms, it's a good idea to get a Neti Pot. rosesixtyfive, mother of Sam ddF508, 3 years old

 

[SoyaSauce]

I can't agree more on the sinus rinses! I have been doing sinus rinses for the last 3 years now with a special pik machine. My Dr runs CT scans on my sinus ever year, first year my sinus were really getting blocked up and 'gnarly' with time and with all that going on I started getting significant sinus congestion and problems, he told me to start doing rinses with the bottle everyday, and I got in the habit of doing it. It started to help some and with time my sinus cleared.

Then I started on the machine, and that made a BIG difference. I now rinse twice day, morning and night. It keep my nose fresh and clean and free from classic crusty CF boogers, -ya you know what im taking about!

Also, on my CT scans cleared up as well, GREATLY, my left side was no longer ' opacification" and the over all impression had improved.

Now, I still get flair ups from time to time, mostly ALWAYS just inflamation or post nasel drip, but I haven't had sinus infections, so I guess nothing is growing up there.

I just advise you and other CFers to use completely 'sterile' water, instead of distilled, I have to buy by the water, but its USPS hospital grade so I KNOW I am not putting anything contaminating.

Thanks for sharing with us, and I hope Sam feels better after the surgery, poor baby sinus pain or sinus problems is the worse, it really REALLY hurts...

 

[heidikk]

The sterile water thing would be the hang up here too. My husband saw some scary things on tv about neti pots and I think he would freak out if I told him I wanted to try one on our baby LOL. I've wondered though if the saline drops you can find in the store along with the baby nose sucker thing would do some good along the same lines. - Heidi mom to Dekorrah - 5mo son with DDF-508 cf

 

[MotherofCFBoy11yrs]

My son does sinus rinses only if he has nasal congestion, which is rarely. Instead he takes all his nebs via a mask and it has worked really well for him (he takes some deep breaths through his nose). For example Pulmozyme works in the sinuses just as well as it does in the lungs.

If possible I'd stay away from bronchoscopies. We were pressured to have my son have a bronchoscopy when he was two years old, it was stressful and he wheezed for days after it. It has since been shown that bronchoscopy is not usually warranted (a large Australian study that concluded a couple of years ago), there are less invasive and safer ways of sampling the airways. The Australian study reported quite a number of adverse events.

 

[AleksandraKaczynska]

I agree - it's simple and safe even for my 5 year old - she started a yera ago
we sterilize in microwave
and use boiled water and kitchen salt

 

[SoyaSauce]

If possible I'd stay away from bronchoscopies. We were pressured to have my son have a bronchoscopy when he was two years old, it was stressful and he wheezed for days after it. It has since been shown that bronchoscopy is not usually warranted (a large Australian study that concluded a couple of years ago), there are less invasive and safer ways of sampling the airways. The Australian study reported quite a number of adverse events.

I actually agree with you on the bronchoscopy, I HATED getting my first one done and I was 21, but mine was due because of a bout of bad hemoptysis, so my Dr. wanted to look in there. Turns out there wasn't anything of significance
( they didn't even pick up any mycobacteria at the time! ) , and like your son, I was left with a very irradiated throat , post lung bleeding and a "drugged" feeling for two days, and wheezing. It did kinda clean out some plugs though, but I feel it wasn't really warranted and unnecessary un-due stress, but you need to weight the risks and benefits and what your Dr. see fit.

 

[JustaCFmom]

nebbing with a mask

My son does sinus rinses only if he has nasal congestion, which is rarely. Instead he takes all his nebs via a mask and it has worked really well for him (he takes some deep breaths through his nose). For example Pulmozyme works in the sinuses just as well as it does in the lungs.

I just wanted to mention that the staff at my clinic encourage using the mouth piece to get the max amount of medicine to the lungs. Our doctor recommended having the child breathe OUT through his nose when using the mouthpiece. That sounds ideal because then everything is stronger and the sinuses get a good dose also. Just a thought.(PILLS)

 

[BreathinSteven]

The sterile water thing would be the hang up here too. My husband saw some scary things on tv about neti pots and I think he would freak out if I told him I wanted to try one on our baby LOL. I've wondered though if the saline drops you can find in the store along with the baby nose sucker thing would do some good along the same lines. - Heidi mom to Dekorrah - 5mo son with DDF-508 cf

A co-worker who regularly used a neti pot brought the same thing to my attention - and she will not use them anymore... I did question it with my CF / lung transplant doc - he suggested that they are still safe, in general - and the people who were infected, and ultimately died, were in rural areas and likely had a contaminated well - or were getting their water from a less-than-appropriate source... There was a fair amount of press on the situation where a few people died from a parasite infection - but the odds of that happening are VERY small, to the point of almost non-existent. I too have heard that there is a benefit in keeping the infection(s) in our sinuses at a minimum, so they have less chance of dropping into our lungs - and that the benefit outweighs the risk in this situation. Love, Steve Here is one of the stories: http://well.blogs.nytimes.com/2012/09/03/rare-infection-prompts-neti-pot-warning/

 

[2roses]

Do you all think that reverse osmosis water (not sterile but should be 'clean') is okay for sinus rinses?

 

[MotherofCFBoy11yrs]

There is a recent study about sinus surgery + bronchoscopy + IV

I noticed they've just completed a retrospective study about sinus surgery in CF in Denmark, the study also included bronchoscopy and IVs: http://www.rhinologyjournal.com/Rhinology_issues/Aanaes.pdf

The Danish CF center is excellent (I think they were the first ones to have a life expectancy of 50+). But the youngest patient was 6 and the IVs and bronchoscopy were most likely done because of the study. Very often bronchoscopies are done as part of a study, my son's bc turned out to be because of a study as well, but we weren't told.

I know that most people use the mouth piece and breathe out through the nose, but it's harder to get children to do it. We've had a really good experience with the mask. We started doing it this way for convenience, but my son has hardly had any sinus problems and he is d508 + class 1 mutation.

Saline does not eradicate staph or pseudomonas. Here is a study in which pseudomonas was eradicated with sinonasal antibiotics: http://www.atsjournals.org/doi/full/10.1164/ajrccm.184.9.1089. (My son nebulizes hypertonic saline, Pulmozyme and Tobi, all as a prevention).