Nasal Polyp

[Rebjane]

So, My daughter has a nasal polyp...She is being started on Nasonex. I did notice these past few weeks/months she would sound nasally or seem like she had a cold but maybe it was the polyp....Wondering if sinus rinses are a good idea? Or simply saline spray? We are ready do Hypersal with a mask so I thought we were good but apparently not. Any advice is appreciated......Thanks!!!!!!!!!!!

Maybe I should start up with the Air filter in her room again......We stopped using it......

 

[beautifulsoul]

A lot of CF doctor's recommend Sinus rinses. I personally don't do them. It seems like it would be messy and I heard it takes some time to get used to. I don't like things going up my nose but I do use Saline Spray and Flonase everyday. A few of my nurses have suggested using a Air purifier or something similar to that (I can't remember the name) I never bought one because I don't want to spend the money on it. My budget is pretty tight right now.

Why did you stop using the Air Filter?

 

[JENNYC]

Abby has major issues with sinus polyps and since being on sinus rinses, nasal steroids, and a good air filter she has not had many more issues with it. I think the sinus rinses are a great idea, it gets the gunk out that causes the irritation, that causes the polyps

 

[Rebjane]

I used to use Simply Saline 3% but since my daughter uses Hypersal 7% by mask i felt like that was good enough. I had stopped using the airfilter, not sure why; maybe the cost of the filter to replace..Guess the next time I am at Walmart I'll get new carbon filters.....Problem is my daughter has maybe more than 50 stuffed animals in her room which are ALL named and played with every day; figure those are huge dust collectors but she LOVES them. Sigh. May need to wash them once in a while.....

 

[kitomd21]

DD is four...she started using the Neilmed flush system about a week ago. I tried it first so I could set an example. Didn't feel like anything other than when pool water goes up your nose. She does it like it isn't a big deal...fortunately!

 

[DonnyJepp]

I started using a nasal rinse with Gentamicin spray thingy earlier this week as I have nasal polyps and chronic sinusitis, with just a couple of days of use I am surprised at how well it is working. It is a bit messy to use and it feels gross going down the back of your throat but I have already started to notice a decent improvement breathing through my nose.

 

[Ratatosk]

DS has done sinus rinses off and on since he was about 4. His nose never runs as his nasal mucus is very thick. So first time he did a sinus rinse I was gagging due to the amount of crud that came out of that tiny little nose. He also got my FIL, whose only done saline spray, to do sinus rinses.

The past couple years, ds has had nasal congestion to the point that he couldn't breathe out of his left nostril -- mouth breathing, snoring, snorting.. And sinus rinses weren't getting anything out, so we went to an ENT. I feared polyps. Turned out his nasal passages were very inflammed. CT scan showed sinus disease, which isn't surprising due to CF; however, we started using nasonex and saw immediate results. No more mouth breathing, snoring, slept better. I have noticed the past couple months he's had a little bleeding, basically bloody mucus due to the drier weather and irritated nasal passages. I've only been able to get him to use simply saline, but suspect a good sinus rinse would help clear out the crud.

 

[beautifulsoul]

DD is four...she started using the Neilmed flush system about a week ago. I tried it first so I could set an example. Didn't feel like anything other than when pool water goes up your nose. She does it like it isn't a big deal...fortunately!

I wish I was brave like her! Unfortunately, nobody in my family will set an example for me because frankly they don't like anything up their noses either lol

 

[Rebjane]

Plan is to reassess in 3 months and hopefully the nasonex shrinks the polyp. No ENT consult yet. Last time I did Saline washes (hypertonic) she told me she hated me and to never do that again(Think she was 4) She does not mind the Simply Saline spray 3% so I guess I'll pick some up too.

 

[beautifulsoul]

Plan is to reassess in 3 months and hopefully the nasonex shrinks the polyp. No ENT consult yet. Last time I did Saline washes (hypertonic) she told me she hated me and to never do that again(Think she was 4) She does not mind the Simply Saline spray 3% so I guess I'll pick some up too.

I can't imagine the feeling parents get when their kid(s) say such things. I guess that's part of the package you get with having children. I hope her nose gets better. Keep us posted! You're in my thoughts.

 

[Ratatosk]

Plan is to reassess in 3 months and hopefully the nasonex shrinks the polyp. No ENT consult yet. Last time I did Saline washes (hypertonic) she told me she hated me and to never do that again(Think she was 4) She does not mind the Simply Saline spray 3% so I guess I'll pick some up too.

I once did a neil med hypertonic sinus rinse -- more salt to water ratio -- when I had a nasty sinus infection. Figured more was better to help with inflammation, etc. It was HORRIBLE! Burned like a #$#@. So wonder if you could try doing just the regular sinus since it's milder.

 

[nana06]

predisone will help shrink polyps and also singular is also known to help with polyps

 

[Rebjane]

She's already on Singulair. She needed alot of prednisone this winter; before we knew about the polyp...Maybe that's why she had such trouble this winter clearing her cough...

 

[CFcyster2012]

I would really recommend the neilmed sinus rinse- i do it every day and it really helps get all the infection out up there. The key is to tilt over the sink really far so that it can't go down your throat. You can also breathe out through your nose while your doing it. Use luke warm water and make sure you use a whole packet in the water or else it'll sting a little. I've had 12+ polyup surgeries and havnt needed one in a record-breaking amount of time since I really got aggressive with the neil med. My ENT (pretty well known) gives them out to all his patients. you can try it in the shower if thats easier. either way just keep a box of kleenex and blow until something starts moving!

 

[VAmom]

My son had surgery to remove nasal polyps when he was six, he is now 19. They continue to recommend that he do sinus irrigations daily. Both his ENT and his pulmonologist have told him that what is in his sinus' ends up in his lungs.

 

[Rebjane]

VAmom,

Did your son need just that one sinus surgery? I have heard that polyps tend to come back.. I have started doing Simply Saline 3% my daughter actually likes to do it herself. Not sure how far up there it's getting but I am going the gentle route since she hated the Hypertonic saline rinses so much in her sinuses; I don't want it to be a bad experience for her; since this is a life long thing. She also does her Nasonex herself. It's easier for her to do it herself, cause she can time it right to kind of snort it up there. It is amazing to me and bittersweet how much she can do herself as a 9 year old. I gain my strength from her.

 

[welshwitch]

I had several sinus surgeries as a kid and then from age 12 to 31, none! Then last year I had one and have felt great since! I think there is some research about CF kids not having as much sinus involvement once they go through puberty, but I can't cite any articles.

 

[VAmom]

Rebjane: Yes, my son has had nasal polyp surgery once.

The ENT he saw from age 4 to 17 used to inject the polyps (that he still has) with a steroid to reduce the inflamation. They don't do surgery to remove them unless they start interfering with breathing.

We did find though that he seemed to get congested after the ENT visits and usually ended up on Bactrim. Our assumption was that some of the medicine they injected into the polyps ended up in his lungs.