IV antibiotics just for sinus issues?

[fel]

Hi,

My 2 sons have atypical CF, and I may as well. Younger son has been on antibiotics for 5 weeks. His issues are almost all sinus. He has sleep apnea and no passage of air through his nose. He got a cpap but can't use it because there is no passage of air. Now they are saying they will do another CT sinus scan. If they don't see something to operate on, they may put him on IV antibiotics. Now he just had sinus surgery 6 months ago, and symptoms returned in 2 months, so it really doesn't give me much faith it will work a second time.

Have any of you had IV antibiotics just from sinus issues (he has no cough, and ok lung functioning.) He always feels a bit fluish, and does wheeze with exercise or cold. I am actually in the same boat -- 5 weeks of antibiotics, but I do have lung pain. They are also evaluating me for sinus surgery too. I suspect we are passing some infection back and forth.

Can any of you share what the standard is for IV antibiotics, and what to expect if that is the recommendation? It sounds horrible -- would he miss weeks of school? Please share stories. He is 14 but in 10th grade in a very competitive school with a large work load. He has been missing school at least 1 day a week since Sept., sometimes more.

 

[nmw0615]

I can't really comment on the IVs for sinus issues, all my IVs have been lung caused. I did spend a lot of time in high school on IVs though, so I can provide a perspective there.

At the start of an IV round, I'd usually spend about 5 days in the hospital, sometimes less and sometimes more. This was so the doctors could make sure the meds were working, we're the correct doses, that kind of thing. I'd go home after that with the PICC still in place and I'd do the meds at home. Usually we could get the timing of the meds so I wouldn't have to do anything at home. That usually meant I had to start a med early, early in the morning and I'd have to rush right home after. I didn't mind this too much though, since I was at home instead of the hospital.

I hope both you and your son get some relief from the sinus issues soon.

 

[MotherofCFBoy11yrs]

Hi Fel, is your son being treated with antibiotic nasal irrigations? I understand that after sinus surgery it should be possible to irrigate the sinuses. Colistin is one of the antibiotics that can be used.

Here is an article about sinus surgeries on CF patients in Denmark, they are doing them a lot there now. The surgery in itself is not enough of course, but combined with lots of antibiotics they have had good results. It's a long PhD theses summarizing other studies: http://www.rigshospitalet.dk/NR/rdo...073-BBE3-E8ECB05B3205/0/Kasper_Aanaes_phd.pdf. Essentially they performed "extensive functional endoscopic FESS with creation of sufficient drainage from all involved sinuses with subsequent IV antibiotics and at least 6 months of twice daily nasal irrigation with saline and antibiotics".
My son has had some orthodontic work done and he has to use a 'thing' (it's not braces) to keep his bite correct at night. It only allows limited breathing through the mouth so it has had the additional benefit of making him breath through the nose when he is asleep. So maybe something like that could help? I assume he must be doing nasonex nasal sprays etc. to help with inflammation?

 

[fel]

Thank you for your suggestions. Yes my son does nasonex and the nasal rinses, but they do nothing. The nasonex has no where to go. The rinse just sits there, it does not go in, even if he lays down and puts his head back. Sometimes it rolls into his eyes and makes them irritated. I am the same way. I have been using flonase for over a decade and it is not so helpful -- maybe a little. I did ask the 2nd ENT (we have seen 2) about nasal antibiotic or even nasal hypertonic spray for my son, and he said he "didn't believe in that". Perhaps I'll send him your article!

I think if my son were forced to breath through his nose he would literally suffocate. I am the same -- dental x-rays are a nightmare because I can't breath through my nose at all. I was like this my whole life -- when I was young, doctors would call over all the interns to look up my nose as an example of an extreme case. I used to carry a kleenex box with me at all times (I mean a full size box, not a packet). Of course we knew nothing of atypical CF back then.

Thanks MNW for the info about IV antibiotics. i have a true (clinical) phobia about IVs owing to very bad experiences with rolling and collapsing veins. The thought of IVs gives me a panic attack. They actually have to give me anti-anxiety meds just to give me IVs for things like a contrast CT, or I hyperventilate. With my first son's birth, I was induced and they gave me an IV line. The first thing I said when the baby came out (before I was even stitched up) is "Take out the IV or I will pull it out myself." This all makes it hard to be brave for my son. I don't think I could look at the IV line in his arm. (btw: I have no problem doing activities like parachuting and mountain climbing, so it is not like I can't do anything. I just have this very specific phobia).

Do any of you just stay on regular oral antibiotics for very extended periods of time? I was once on them for about 8 months (pre-diagnosis). What is the tipping point for deciding it is too long? I don't quite understand the difference in mechanism between having it IV vs. oral. Aren't there other strategies to address sinus issues -- pulmozyme for example? I am wondering if we are not getting the right stuff because of that "atypical" title.

Thank you everyone for your support. It is 4am and I can't sleep I am so upset about this.

 

[Oboe]

I've never had them specifically for sinus purposes. However, my last hospital stay a month or so ago, it started with a sinus infection that started draining down my throat. That led to a couple big infections in my lungs requiring the hospital stay. So I wouldn't be surprised by a course of antibiotics if the doctors think it could go that way, especially if you guys are feeling "fluish" as you put it.

Different places do different things in terms of stay. Some do 4-5 days in the hospital then go home on IV meds, some do 14 day stays. Hopefully your kid doesn't miss too much school, I've been on the wrong end of that issue.

 

[MotherofCFBoy11yrs]

The sinus surgery the Danish article describes is to enlarge the passages to the maxillary sinuses - is that what your son had? The idea is that it makes it possible to properly irrigate the sinuses.

I've read that large volume irrigation is the best way to reach sinuses (regardless whether you have had surgery). There is also a sinus nebulizer, Pari Sinus, which is used by CF patients. My son tried it when we were trying to get rid of staph in his sinus but it didn't help. But it would definitely be better than a spray: http://ecorn-cf.eu/index.php?id=65&tx_expertadvice_pi1[showitem]=2585&tx_expertadvice_pi1[search]=

As you might have read they've discovered that CF pigs have congenital abnormalities in the upper airways so it is part of CF. I hope that in my son's case the orthodontic work which was started early may have helped because it has widened his palate and maybe helped the airways to form better. But his palate is very high, I was amazed when I saw the plaster copy of his teeth and palate.

The article says that MRI could be useful in imaging sinuses and it would certainly be safer than repeated CT scans.

 

[jamest]

In my experience, ABX for sinuses were completely ineffective. I had bad sinus problems until I had my maxillary sinuses drilled out to create an extra opening at the bottom of each. Prior to that, my CT scan showed my sinuses completely packed with aspergillus, which was causing non-stop (for two years) fevers. Basically, prior to the surgery there was nowhere for the stuff in my sinuses to go. Nothing was flushing it out and my cilia weren't functioning.

The surgery opened up my sinuses so I could hopefully keep things clean with nasal irrigation. After the surgery I was treated with oral bactrim and a nasal irrigation of mupirocin. I also did daily sinus rinses with netipots. My fevers got better, but they would still return at times. My health always felt precarious.

Then I got a waterpik with a hose attachment (from ethicare.com) that I can stick pretty deep into my sinuses. The rinse gets in everywhere and works with a lot of force; I regularly dislodge chunks of green stuff, very satisfying. Since then, no fevers and I feel much more stable. And I'm not taking any antibiotics for my sinuses.

If you/your son has had the kind of surgery I've had, then I would definitely buy a waterpik and the hose, made a huge difference for me. If you have multiple people with CF in the same house buy different hoses for each person.

If you haven't had the surgery, bring it up with your doctor asap. I wish I had known what I know back in 2009, my life would have been a lot easier!

 

[fel]

I am going to look into these other surgery alternatives for both me and my son. Today he started a stronger antibiotic -- now he is on levaquin just like his mom. I hope it will help him.

 

[Kristan]

I am wondering if your son has polyps and if he has had a sinus culture to determine what bacteria is involved. You may want to check on using Pulmicort in the sinuses if it is inflammation or polyps. If it is PA, I found that antibiotic washes were only somewhat effective and that nebulizing TOBI in the sinus was more so. Also, does he have allergies? I would look for any factors that could be contributing to inflammation. I hope the oral antibiotic works!

 

[fel]

Hi Kristan, He did have huge polyps but had them removed just 6 or so months ago. Now he as bad as ever. They are saying there are no longer polyps, just swelling.

I asked about TOBI but because his last (of 3) sweat was only borderline, they really aren't offering him strong CF meds. It is ridiculous -- he had 2 sweat tests over 60, and then a 3rd where he went down to the forties. They also can only find one gene, but that is true for my other son as well, who is considered full CF. Yes younger son has big allergies, as do I.

Just to update y'all -- he really perked up today with the Levaquin -- he looks more like a normal kid than the ghost he was before. Really on Halloween he could have gone out without a costume. I am also on Levaquin, but now on week 3 it is not working as much. I am going down hill again -- having trouble breathing tonight.

Anyway, as to the other question -- because younger son and I are only borderline CF, they don't culture us. Older son cultures PA, and he lives with us, so chances are we all have it.

 

[MotherofCFBoy11yrs]

Hi Fel, I think you must find doctors who treat you more seriously. I've even read of a case where the parents of a person with CF both got chronically infected with PA and neither of the parents had CF. An infection in the sinuses most likely also means a lung infection, that's why I think the antibiotics are helping your son, but they probably are not enough to get rid of the bacteria.

Hi Jamest, your description of the waterpick was so convincing that I decided to get one for my son! However, I ended up ordering a SinuPulse - I presume it does the same? I'm not keen on the idea of sinus surgery, because I understand it means increased treatment burden, and my son's sinuses have been fine until he got the staph and even now it is not symptomatic because he is on flucloxacillin + fucidic acid... BTW I'm curious why you are not doing antibiotic irrigations or nasal nebulization if you have green stuff in your sinuses?

 

[jamest]

Waterpik or Sinupulse, as long as it shoots a forceful jet of water into the sinuses I am sure it will be fine. Without the surgery to create additional holes into the maxillary sinuses I am not sure it will do much good, however.

No ABX for me because it is MRSA, and my doctor is convinced it isn't worth the trouble of eradicating because it will just come back later. Since it hasn't shown up in my lungs, I haven't worried about it too much.

 

[kosdancer]

I had a lot of sinus problems as a kid - what we did:
- I had the sinus windows surgery at 3ish, which was pretty helpful.
- After the sinus windows surgery, I regularly had polyp removal/cleanouts every 2-6 months until I was 15. As I got older the surgeries got further apart and my last one was in 2009.
- For a long time we did tobramycin sinus rinses; now I only do sinus rinses when sick but they are just regular saline.
- I second the waterpik recommendation; I'm not a big fan because it is really strong, but if you need something strong that will definitely work. They're also pretty cheap at any drugstore so it's worth a try.
- Maybe it's worth shopping around for a different ENT if you don't think yours is helpful (I know you haven't said much about the ENT but that may be worth a shot.)

And I have never had IV antibiotics just for sinus issues. I did frequently use oral antibiotics (usually cipro).

 

[Beccamom]

My daughter used to have frequent lung infections. Her pediatrician ordered a sinus CT which to our surprise showed blocked sinuses from infection, inflammation, and nasal polyps. This was prior to her CF treatment. She has sinus surgery making the "windows" and its been two years and so far much fewer infections sinus and lung.

my sinuses used to be chronically infected and Levaquin would work only while I was on it. Shortly after a 30 day course I was back to stuffy and miserable. Then during a course of Levaquin and steroids the doctor added Bactroban antibiotic ointment to my neilmed rinse. I had a year without a sinus infection. Now I still have lots of inflammation and nothing allergy wise works. I tried medicine and 4 years of allergy shots that did nothing for me. Now Since my CF diagnosis I have been on Azythromycin Monday, Wed, Friday and my sinus head aches are virtually gone, my lung function improved and my energy improved. For CF Azythromycin is supposed to work as an anti-inflammatory not just an antibiotic.

 

[Aboveallislove]

Mom,
Have you pushed to have your son try Kalydeco off label? There is evidence it works for residual function mutations, which those with a sweat test of less than 70 would have. There's a mom who blogs at oneluckycfmom (google it for cite) whose son had horrible horrible sinus issues and after Kalydeco the ENT said that his sinus actually looked different. I guess I'd try hard for that, even if it is convincing the doctor to try it for 30 days (but don't have him do a script that way or the insurance company might flag it).

 

[MotherofCFBoy11yrs]

Jamest, I'm hoping the SinuPulse will be of some benefit even without sinus surgery, let's see...

I wonder why your doctor is so certain that you'd get MRSA again? It is not that common except in hospitals and gyms etc. In some countries CF patients have hardly any MRSA. It sounds like you have an MRSA sinus infection - as opposed to colonisation - which means the bacteria are causing tissue damage and should be treated.

 

[fel]

Everyone. Again thank you for all your wonderful suggestions. The update for now is I am having sinus surgery as soon as I am cleared by all the various doctors, and I think they will do the windows as well as the polyps. Until the surgery I can't do any rinses because they will not go through. My son probably has exactly the same -- but his CT scan is later this week. My guess is they will say surgery for him too --- listening to all of you makes me think that IV antibiotics is just not the way to go. I am also thinking of a second opinion from another center about my son's non-cf designation.

Yes I tried to get both sons into the residual functioning Kalydeco trials. However, they would not take them without definitive genetics. That is why we are in a genetics study.

 

[jamest]

I wonder why your doctor is so certain that you'd get MRSA again? It is not that common except in hospitals and gyms etc.

My doctor thinks it is a lot more common than that, along the lines of pseudomonas. At least, that is the impression I got.

He is very quick to dispense meds, so if he thinks this is something that can't be effectively treated with drugs, I tend to take his word on it.

 

[MotherofCFBoy11yrs]

I don't think he is right, MRSA is not an environmental bacteria as far as I know. You might want to do some research on this. I know that in Scandinavia it is very rare both in the general and the CF population. I had a quick look: in the US it has become increasingly common both in the general and the CF population, but in some CF centers it is common and in others not - could do with hygiene and infection control? Or the seriousness it is treated with?

It's definitely a serious bug and does affect life expectancy. This is how they treat it in a Belgian CF centre: www.sciencedirect.com/science/article/pii/S1569199313000684

My son is on a similar regime for MSSA infection which is seems mainly to be in one sinus but most likely is also in the lungs. This ordinary staph is a lot more common, but still harmful and we don't want the infection to become chronic even if it's quite possible he'll get it again. Here is how they treat MSSA in Denmark, they don't have many patients with chronic MSSA: http://www.cysticfibrosisjournal.com/article/S1569-1993(12)00125-7/fulltext.

 

[Aboveallislove]

There are some current clinical studies underway to try to erradicate MRSA. It might well be those protocals. You might consider searching cff.org to learn if those might be a possibility.