Need Help, Once again, I wasn't ready for this

[rosesixtyfive]

My 3 year old boy has kicked pseudomonas for two years. He just went off of Tobi and Cayston. Now, he has had a clear runny nose since December. He was on 21 days of Bactrim and was good during that time. The day that he went off, his nose started running again. Today, we saw the ENT for the first time. He told us that Sam would always struggle with this. That it was nasal polyps and inflammation. He said we would always just be deciding not if he needed sinus surgery, but when he had suffered long enough to merit the surgeries. And then told us that there was nothing, nothing we could do to prevent nasal polyps. Gloomy, right? Okay, I am willing to face the truth. Sinus problems are just part of CF, I just didn't know how awful it would be. He recommended adenoid surgery and a picc line. I was floored because I did not know that a picc line could be used for an infection in the nose. That kind of ruins summer because for 14 days we wont be swimming and doing the healthy things I want him to do. He saw we could wait until August or September, but now I feel terrible because if there is an infection living in my baby's nose, we need to get it out as soon as possible. So, here are my questions - Is 3 years old early for nasal symptoms like these? Have you ever had a picc line for an infection living in your nose, but your lungs seemed to be clear? How many surgeries a year do you usually have for your sinuses? Is there really no way to prevent nasal polyps? Is it just something we have to live with and treat retroactively instead of proactively? We can't do the sinus washes because it terrifies him. Normally, I'm for sitting on him and doing what needs to be done, but it was truly traumatic, so we are now using Nasonex and simply saline. Please help. Is three awfully young for a picc line? He had one at 5 months, but I don't know how he will handle it now. Thank you so, so much. rosesixtyfive, mother of Sam, 3 years old, DDF508, and a dd, 8 years old, no CF

 

[coltsfan715]

Have you asked about nebulizer treatments via mask. I have taken IV meds for sinus infections in the past - but it was only post transplant (I am 6 yrs post transplant now). Before my transplant I pretty much always had sinus issues. I have had 2 sinus surgeries in my 31 years. Personally I would ask if you could try TOBI or Colistin or something like that via neb mask to treat the sinuses. Especially since everything that is draining is clear, which is a good sign because normally if there is a serious infection brewing it will have some color to it. That is just what I would do as a patient. I would exhaust the other avenues before doing IVs for two weeks, especially if lung wise he is clear.

There are other options like oral antibiotics, nebbed treatments via mask, sinus rinses, allergy sprays and allergy meds. It may be a combination of things, along with polyps. For me my sinus problems got worse after my first sinus surgery and my second sinus surgery was simply to clean out infection and remove a few polyps. The surgery really should be considered as a last resort because in most instances the relief is temporary.

I do sinus rinses every day and you can do them as often as you want because they are just a sodium chloride mix in warm distilled or boiled and cooled water (I heat mine in the microwave and let it cool). It helps prevent the constant runny nose and has prevented me from getting sick from sinus infections multiple times. I know 3 may be young for that, but maybe you could ask how to do it or if you could with your child. They are really helpful if you are able to do them that young. I know friends with children with CF that started sinus rinses at ages 5 and around, so it may be possible.

Good luck!
Lindsey

 

[Ratatosk]

DS has always had sinus issues -- his nose never ran as a child due to the extra thick sticky mucus. We'd use saline drops to try to clear it until he was old enough to do sinus rinses at age 4. A few years ago he became completely stuffed up, couldn't breathe out of his left nostril -- was snoring, mouth breathing and his local cf doctor was sure he had polyps obstructing things. Locally there's a tendency to perform sinus surgery after surgery -- know several people whose children have had it done. Our cf doctor in the City referred us to an ENT specializing in CF care. They scoped DS and found he had a LOT of inflammation in his nose. Prescribed a nasal steroid spray and ordered a sinus ct. While the CT scan did show sinus disease typical for someone wcf, the nasal spray worked and DS can breathe again. No polyps. I DO have a friend whose daughter had major sinus issues and had her tonsils, adenoids removed as well as sinus surgery at age 4. Completely different child -- slept better, ate better almost immediately. They still have some continuing issues and do nasal sprays and rinses and will be looking at more surgeries; however, she is doing MUCH better because of the surgery.

 

[rosesixtyfive]

Thank you for your responses. I know the post was a little too long maybe. Has anyone ever heard of a picc line for sinus problems? Thank you so much!

 

[rosesixtyfive]

Thank you so much for your response. I knew I could count on you. Right now I am feeling like an alien on another planet. People keep telling me, oh, my child had their adenoids removed but I know this is a different ball game. Someone even told me that God was my son's picc line. And while I pray and believe in prayer, this was not helpful to me at the time. I'm left dealing with the reality of a real picc line, not a figurative one. The ENT made it sound so terrible. He even told us about side effects of the sinus surgeries such as trauma to brain and blindness. Okay, so he was telling me about surgeries my child is not yet having. Adenoid removal is much less invasive. I think he is a good doctor but do you think he could be overdoing it with the picc line? I want Sam to have the best opportunity to live healthily, but it sounds like Max got the chance to just try steroid nose spray for a while before resorting to megadoses of antibiotics. Did anyone ever think that Max's nose was "culturing" a bacteria?Thanks, rosesixtyfive

 

[Ratatosk]

They didn't do a culture for sinuses. When he was little he cultured H. Flu (HIB) and it showed up when he'd get a sinus infection and he also cultured pseudomonas. More recently he's cultured steno. maltophilia off and on and the other two he hasn't. He uses a mask for his nebs, still is on tobi. His nasal issues were strange -- the ENT called in a colleague for second opinion -- basically a LOT of inflammation in his left nostril, cobblestoning on the septum... Fortunately the nasal spray did the trick. As for the PICC line, ds had to have one in the past when he had his bowel obstruction for TPN (IV feeding) and antibiotics as they were concerned with his veins over the several weeks he was in the hospital If you want to PM me, I can give you FB contact info for my friend whose daughter has had sinus and adenoid/tonsil surgery.

 

[Ratatosk]

Oh and when he was a baby, he DID get put on oral antibiotics for an extended time to get rid of his sinus infection once and for all that he'd had all winter long. I do know of people doing abx with a sinus nebulizer, as well as abx rinses. Others neb HTS with a mask.

 

[Christina.R]

With the HTS, get him to breath in his mouth and out his nose, it helps clear the sinuses a bunch, make it a game, he'll pick it up! Since not all of it is processed through the lungs, some mist comes back up through the sinuses, for me at least is the right amount, not like a nasal flush, but enough to get that back sinus crud moving effectively. Get him to do a big nose blow when he's done his HTS too! I fought with nasal polyps while growing up until I finally got them removed when I was 10. The doc as amazed at their size (as big as his thumb!), but I could finally smell for the first time in my life. They haven't regrown, thank goodness, and I'm ancient now. If its possible to switch him to a pipe instead of mask, it might work better to concentrate the HTS to his lungs and his sinuses in turn.

 

[CFkitty]

Have they ever tried antibiotic Rinses?

Ask for an ENT appt, get a culture, and see of they recommend antibiotic rinse. I use Gentmamycin rinses every couple of months with moderate success. I had sinus surgery 4 years ago but have new polyps they need to take out. Sometimes that helps, because bacteria and mucus can get stuck up there.

 

[LittleLab4CF]

Sinus problems don't usually start with a need for surgery, like our lungs, scarring from infection cause many of the deformities to be corrected in the sinuses and such. An acquired hole through my nasal septum wasn't from nose candy as a doctor suspected, infection finally opened up a hole that just kept growing. Many CFers report smaller diameter plumbing like eustatian tubes and sinus openings.

Sucking or pumping water up my nose isn't an activity I enjoy and I tried to enjoy it for many years without success. Water Pik has an attachment for sinus rinsing. My doctor wrote a prescription for mine years ago. Unlike it's pulsing tooth cleaning attachment, this attachment has a ball like seal that is pressed against one nostril which can be pulled away to instantly drain anything scary going on. And nothing really scary does happen, rather it slowly fills the nose ideally with tepid salt water bathing the sinuses and draining out the open nostril. This may not work at his age this minute, but he will likely benefit from the ease and effectiveness of this product sooner than any other I know of. Good Luck, this one sucks.

LL

 

[CyrilCrodius]

I DO have a friend whose daughter had major sinus issues and had her tonsils, adenoids removed as well as sinus surgery at age 4. Completely different child -- slept better, ate better almost immediately.

I had the same done at 3 because I was snoring.

Clear runny nose does NOT mean that there is infection. I there was infection, it would be colored. I always have a runny nose, especially in winter or when my heart rate goes up. It's always clear and that's not infection.