Losing the Battle on Sinus Infections

[rosesixtyfive]

Please help. We are losing the battle on sinus infections. Sam had his second sinus surgery in October and he has already had two sinus infections. We are in a vicious cycle of three weeks of abx, followed by two weeks of good health, followed by sinus infections, and repeat. We do sinus rinses twice a day with saline and budesonide (sp?). We do hypertonic saline through the neb cubs twice a day. Sam just keeps a sinus infection. I am worried that I am going to have to quit work becuase he stays sick. I say sinus infection but they always start with some kind of virus or cold, then immediately go to an infection. His nose does not run. So sinus rinses are the only way anything moves out. Anyone else have similiar problems?
Thank you, rosesixtyfive, mother of Sam, 6 years old, ddF580

 

[rosesixtyfive]

He also has no lung involvement, but cultured staph and Moraxella with his last sinus surgery in sinus cavities only.

 

[jricci]

I'm sorry he's having such a difficult time. Have you tried using a special nebulizer to deliver antibiotics directly to sinuses (PariSinus)? Or nasal rinses that have antibiotics added to saline rinse? For either of these you would need to have meds specially made by a compounding pharmacy. Foundation care does provide this service for sinus nebulization. http://www.foundcare.com/health-car...ized-unit-dose-medications/nasal-medications/ There are other compounding pharmacies that also make antibiotic solution to be mixed in with rinse. I can't remember who I used. but hopefully your ENT can give you some info. Unfortunately I think getting insurance to cover can be an issue.
A couple other ideas: I know some people have better luck with a water pic for irrigation.
NeilMed makes a hypertonic saline packet that is used for sinus rinses.
My ENT has also suggested mixing baby shampoo in rinses (something about providing surfactant)
I've also been prescribed bactroban ointment to be applied to nasal passages with q-tip for staph.
I don't think this is done frequently, and it is not FDA approved for sinuses, but at one point my ENT mentioned pulmozyme being mixed with rinses or being nebulized directly into sinuses. He never did prescribe it though. But it's worth mentioning to your ENT.
I hope he finds some lasting relief soon.

 

[Kristan]

Hi,

I was able to get my sinus issues under control by adding xylitol to my sinus rinses. I originally tried adding TOBI or gentamycin to the rinses, but the xylitol ended up working better. I do not have polyps and have had only one surgery 17 years ago, and I culture pseudomonas in both my sinuses and lungs. If he has polyps, then I believe pulmicort will sometimes help. If he has allergies then you may want to consider going dairy free to see if that helps. Hope he feels better soon!

 

[Printer]

What do the CF and ENT Doctor's say about this situation.

 

[TreasureGoddess]

Sometimes you can even find an ENT doc that works with CF patients. Schedule a visit with your CF team to discuss your concerns. Printer is right, they're the best source for you, make sure you use them as such. They may not be aware you're having concerns. Most of my son's hospital stays for IV meds have been because of chronic sinusitis that then drains into the lungs, causing infections there to rise. This is common with people with CF, but you want to make sure your ENT and CF docs are working together for the best results. Multiple sinus surgeries are unfortunately a part of fighting this combination, but as your son gets older, he will probably outgrow the need. My son used to have about a sinus surgery every year or at least every other year to remove polyps and flush out the infectious stuff. He's now almost 16 and it's been over 5 years since his last surgery.

Is your son on a nose spray that helps to keep the polyp growth down? This plus the sinus rinses did help, but he always got more infections, more polyps and the cycle continued. It got much easier after I got the docs working together with us for the best plan. Good luck! It does get better.

 

[Ratatosk]

DS got a lot of sinus infections as a baby. His nose never ran due to the extra thick sticky mucus. We always used the dreaded bulb syringe and saline spray to try to clear his nose. He would be put on abx for a couple weeks, be fine and end up with another infection a few weeks later. DS at the time cultured h. flu and pseudo. Our primary cf doctor finally prescribed a stronger abx for a longer period of time, which did the trick. When DS was about 4 he learned how to do sinus rinses, which helped a lot. Our CF is very conservative regarding sinus surgeries, so when ds began having issues with mouth breathing, snoring and the local cf doctor was sure it was polyps or infection he referred us to an ENT who works with CF patients. Turns out ds had issues with inflammation. A nasal steroid spray (generic Flonase) did the trick.

I concur with the other posters. Work with your cf team to find an ENT familiar with CF -- could be he needs an abx added to his sinus rinses or a sinus neb....

 

[LittleLab4CF]

I am going to play the devil's advocate here. The best process of building resistance and avoid allergies is some dirt. More to the point excessive cleanliness during youth is not a long term advantage. We have to scale back the degree of exposure based on the resistance of the patient but in order to live we need about a kilogram of bacteria to keep everything from digestion to a strong immune response.

I second the water pic. It's more difficult to flood a sinus that resists draining. Warm strong saline solution will toughen the nasal and sinus mucosa and generally clean the mucus out. I've been thinking about the culturing of probiotics in the nasal passages. Rather than suggest that you can experiment on your child, allow me. I've only had 3 sinus reconstructions and I'm a scientist.

Our gut is the largest investment in the immune system. Probiotics protect against the bugs that really make us sick in the gut. We don't intentionally feed or breed infection in the head but it is the filtering of bacteria hopefully is catching the bad microbes. Many people have the rare nasal infection and my guess is they have a combination of resistance and a family of probiotics. Breathing in food for probiotics could be investigated. If probiotics are growing, it could increase the number and reduce infections. I'll let you know fairly soon.

If there's any consolation it gets better. The first job is a daily rinse of the bacterial concentration from any one area. Stronger solutions may yield a short term improvement. The body works best in maintaining the battle with microbes.

LL

 

[Gammaw]

Well, we're post sinus surgery no. 4 on our 10 year old. We had them every year starting 2011, but went two years between the last two. After both of the last two surgeries, they inserted Propel implants - which are little bird cage type things infused with steroids to help prevent scar tissue from forming and keeping inflammation down while healing. They dissolve on their own after about a month. They really did seem to help. But I will add this - after the surgery two years ago, we started checking in with the ENT every 2 months. He would suction out any junk and spray in decongestants. Then, things were going so well for so long, he suggested we wait 6 months before returning again, and voila - trouble! I got the impression that since my DS cilia do not rid his sinuses of anything on their own, that it really helps to have the ENT do it on a regular basis to help keep him clear. So between the Propel implants and the regular visits, I think we're in a better position then when we were just waiting on our own. Some people have polyps recur rapidly - like my little guy - and some don't see them again for years. I am also convinced that sinuses are one of the main pathways for the pathogens that plague CFers. So keeping them clear is a good idea if you can manage it. The ENT did say that next time there he wanted to start our guy using a water pik for his sinuses too. Anything to help keep it moving in there . . . .

 

[jamest]

What works for me is a WaterPik with this sinus cleaning attachment at the bottom of this page: http://www.ethicare.com/prodinfo.html

After sinus surgery, my chronic fevers dropped off for a while, but then returned. Irrigation and antibiotics didn't work. It was only when I started using that thing to really get in there and clean out the deep recesses of my sinuses that my chronic fevers vanished completely.

 

[JENNYC]

Abby struggled with this for years. I see that your son is a DDF508. After Abby started taking Kalydeco...her sinus problems completely went away. Have you quizzed your dr about the thought of trying Orkambi off label? Not sure if you are even comfortable with that but I think it is worth trying. If it doesn't work you haven't lost anything. But I truly believe it would help. Abby was having sinus surgery every 3 months and constant infection and just miserable. Now she very very rarely ever even gets the sniffles! And it was immediate...we noticed the difference with in 3 days of her first dose. Abby also cultured MRSA and now she doesn't. Kalydeco was our miracle drug...and I can't imagine going back to those awful days before. Hugs Hugs Hugs!!

 

[Aboveallislove]

Missed you Jenny! Have you discussed with doctor trying Orkambi for Abby since she has the df508 on the other allele??? I'd think that might given her even more benefit (and since it's cheeper, I'd think insurance wouldn't balk, unless you're trying to keep under radar!!)

Hugs and prayers,
Love

Abby struggled with this for years. I see that your son is a DDF508. After Abby started taking Kalydeco...her sinus problems completely went away. Have you quizzed your dr about the thought of trying Orkambi off label? Not sure if you are even comfortable with that but I think it is worth trying. If it doesn't work you haven't lost anything. But I truly believe it would help. Abby was having sinus surgery every 3 months and constant infection and just miserable. Now she very very rarely ever even gets the sniffles! And it was immediate...we noticed the difference with in 3 days of her first dose. Abby also cultured MRSA and now she doesn't. Kalydeco was our miracle drug...and I can't imagine going back to those awful days before. Hugs Hugs Hugs!!