The Invisible War

[rosesixtyfive]

Sam just recently recovered from having adenoids removed - adenoids that were incredibly swollen. We did neti pots before the surgery but no mucus came out. Now after the surgery, we are still doing neti pots and no mucus really comes out, a little bit of sticky clear stuff every now and then, but a very small amount. I was under the impression that before the surgery, the mucus was there, but was blocked by the inflammation, and not even a neti pot could move that junk out. But now, since having the surgery on June 25, still nothing really moves. He has felt fine and hasn't been snoring..... UNTIL he got a stomach virus at VBS. The day before he threw up he started snoring again. He threw up Saturday, and now Monday morning, has woken up with a terrible cough. He has not had lung involvement thus far, but the cough scares me. Still doing neti pots, no mucus is coming out, although his cough sounds like he is choking. SO where is the mucus? I feel like I'm fighting a battle when I can't locate the enemy. Anyone have problems like this? Does this sound familiar to anyone? I am going to give him 3 treatments a day for the next 3 days and hopefully move the cough out without going antibiotics again. I feel like all of the antibiotics are weakening his immune system so every time he does something sociable like VBS, he picks something up. Thanks, Rosesixtyfive, mother of Sam, ddf508, 3 years old

 

[Ratatosk]

DS' mucus is so thick, his nose never ever runs. When he was 4 we started doing sinus rinses with the bottle, not neti pot and were amazed at how much crud came out. A couple years ago, he was so stuffed up that he couldn't breathe out of his left nostril -- snored, mouth breathing... Sinus rinses didn't get anything out. Took him to an ENT after thinking he may have polyps, He didn't. Does have typical CF sinus disease; however, nasal steroid spray seems to have taken care of the inflammation and he can breathe again. We have always done 3 vest treatments a day and jump it to 4 -- sometimes as much as every 4 hours if he's gotten sick. He's been on antibiotics since he was a few weeks old, goes to daycare and regular school. Was pretty much one of the healthiest kids in his daycare/preschool. His baseline is no cough, so when he's gotten sick, we've increased his treatments and his doctor has usually prescribed a different antibiotic based on what he's cultured in the past.

 

[Aboveallislove]

Is he on hyper sal? If not, can you try adding that using a mask with the nevulizer? Ds never had a runny nose until he started at about 1 year and now after treatment has lots of runny and blowing and then gone. Hasn't snored in ages either...can't remember if that stopped at same time as starting or not.

 

[rosesixtyfive]

Yes, we do HTS 7% two times a day. He is using Nasonex 1 spray 1 time per day. Ratatosk, what antibiotic does Max stay on permanently? Sam was on Zithromax, Monday, Wednesday, Friday for a couple of years and then the doctors discovered new research that said this was not a good thing to do. Now Sam is not on antibiotics unless something is called in for symptoms, retroactive and not proactive. Thank you so much, rosesixtyfive

 

[JENNYC]

I agree with Ratatosk about the nasal steroid...they seemed to work wonders with Abby. Other than that when Abby would start coughing like you are saying her sinus' was generally the culprit but she never has been very sick with her lungs. But if they just removed his adnoids I would think that they probably looked up his nose for polyps too. But that was our sign that her polyps were back. But that is just what we discovered with Abby. But I would ask ENT about nasal steroids because I believe they have really helped Abby as well. Good Luck!!

 

[Rebjane]

Sounds like he is already on a nasal steroid; Nasonex.

If he is coughing and this is not his norm; he may have gotten a cold or virus? Has he had a recent culture?

I would call the CF doctor if you are concerned about the cough..Might have picked something up.

What is VBS?

 

[JENNYC]

Vacation Bible School

 

[rosesixtyfive]

Hey, I'm sorry for not knowing, but I thought Nasonex was a nasal steroid. Ratatosk and Jenny, what type of nasal steroids do Abby and Max use? Maybe a simple change like that will be the solution. Thanks again.

 

[rosesixtyfive]

Yes, VBS is Vacation Bible School, and now that I've spent some time with him this morning, it does make sense that he had a stomach virus then followed that up with a cold. Friends are posting on Facebook about having colds in my region right now. His last bronchoscopy was in June and there was no bacteria in his lungs at that time and only a small amount of strep in his sinus cavities - which supposedly we have eradicated with the sinus surgery and antibiotics (both oral and IV).

 

[Ratatosk]

DS has been on Zithromax since he was about 2 -- for cfers it's not used as an abx per se, but to help with inflammation, lung function. His doctor had him on a prophylactic antibiotic from day one -- Keflex originally, now dicloxiciilan. He was put on septra a few years ago after culturing steno. maltophila and developed a dry throat clearing cough. He was originally put on nasonex, but it wasn't covered under our insurance, so I was paying $80+ per month. He's now on a generic version of Flonase. It sounds like he may have picked up a bug somewhere (VBS) and may need a little extra help -- extra cpt like you're doing or might be a good idea to contact the clinic and see if needs a little extra help. When DS was 4 despite being on tobi and Keflex and Zithromax, he developed a productive cough, which we thought he was weird being he was on all those meds. Turned out he was culturing something else and needed yet an other abx to clear things up.

 

[rosesixtyfive]

Hey Ratatsok, is on Zithromax 7 days a week, and an additional antibiotic besides the Zithromax? And he takes those every day? Thanks!

 

[Ratatosk]

Originally was on a lower dose of Zithromax daily, now he's on it every other day. Also take dicloxicillan 4 times a day and septra twice a day. Also on Tobi due to pseudomonas culture, though hasn't cultured it recently. Usually cultures steno. Maltophilia, also didn't show up on his last culture.

 

[2roses]

I just want to weigh in on the difference between the neti-pot and the bottle. The 'Sinus Rinse' squeeze bottle (by Neil Med) uses positive pressure to flush the sinuses vs the neti-pot, which is a much milder rinse. I suggest you give the bottle a try, which may be more effective at dislodging the sticky CF sinus mucus. You could try twice a day at first and see if there's a difference.

 

[JENNYC]

Abby is on Veramyst.

 

[Gibson75]

My little 17month old just had his adenoids removed three weeks ago. He doesn't snore as much but like your DD, he is coughing a lot more especially in the morning or when he is getting to sleep. He does the chocking coughng thing as well and I notice now he is couging it up and swollowing it. His nose doesn't run as much as before and I thought that's what may be causing him to cough more because it is getting through now. He gets clogged up in his nose but is beginning to get them out himself. He also uses nasonex. When he had surgery they checked for polyps and he had none but we were told he had an excessive amount of mucus.

 

[rosesixtyfive]

Hey, Gibson75, have you been able to try sinus rinses on your 17 month old?

 

[Gibson75]

rosesixtyfive,

No I haven't as yet, but he has been so much better so far. He has a small amount of discharge from his nose in the mornings which is quite thick, and then it seems to crust up. It is when he is sick that he gets alot worse. It surprised me that the Doc cleaned out so much mucus as on the outside he appeared to be quite clear cause he had been on a long course of antibiotics to keep him well for surgery. Goes to show how much there really is in there even when we think they are going ok.


Gibson75

 

[LittleLab4CF]

I have been following your nasal drama/trauma and I am beginning to wonder if there is a bunch of mucus in his nose. I know the infected head, I remember my lead filled sinuses, ears and throat would slosh and bash the opposing sinus wall, or such by a quick head turn.

Now I can't imagine my poor parents suffering the constant battle to keep my head from exploding in the years I was not aware that I was sick. It really was something I never was aware of. A great effort was being made to never ascribe more to a small infection than a massive infection or illness. My symptoms and if possible my infection were serviced with no particular fuss.

If you must see mucus coming out your little one's nose, buy a facial sauna. I can't remember if I have suggested this before but it resembles a blender physically. The top of the shroud is contoured and padded to fit the face tightly. Instead of a motor and blade a heater and water reservoir produce steam to breath for as long as you want. What is really special is the shroud includes all the face including the forehead so the sinuses get toasty from the rolling steam. When my head is allowed to rest at the 45 degree forward angle of the facial sauna, most of the mucus drains or is easily blown out the nose.

I almost forgot about that facial sauna. They sell an economical version at Walgreens and such. They are quite good. Mine probably isn't made anymore, the shroud is Pyrex and the steam and water parts are ceramic. No issue with sterilizing here, it has gone in the pressure cooker probably a thousand times. If you find the facial sauna effective, it is easy to sterilize. Certainly high end or maybe commercial facial saunas could be obtained if the $25 version does the job. They are sized for women and a five year old girl fits mine so I don't expect that issue. Then again... you might slip it out of the box first.

Netti pots are supposed to be the ultimate high pressure wash. With the long neck getting the water high above the head and goosh you're flooded with fast moving water. They are too good for me as I had one sinus that would fill from the Netti washing and then take two days to drain, rather uncomfortably and with frequent surprises. Getting the water as hot as possible along with an extreme sinus wash repeated every hour or so for as much as six washes will end any question of any mucus evading capture. Make him aware to tell you if he feels stuff draining down the back of his throat and check before and after each wash yourself with a flashlight. My mucus head days were punctuated with frequent avalanches of down the throat mucus, a big glob slipped down and away in a second. The idea that mucus has to wash out with the Netti bath is flawed. I have gotten pollen to coal dust out of my sinuses but very little mucus at the time. Just bathing and softening the mucus is going to do its best sometime between rinses. This is why I suggest an experiment that will do no harm. The caveat being your choice of additive. Years ago my ENT prescribed a powerful additive that was a little like clove and turpentine in effect. WoW! Talk about every tear duct and mucusal cell was on full bore. I was at the mid-dose and quickly discovered a ten percent salt solution must follow such a powerful turpenoid.

You mentioned a bunch of respiratory issues after camp gut. Aspiration during vomiting? Possibly asperating during sleep or some swallowing dysfunction, probably temporary from regional inflamation. In my personal experience CF has sort of worked through my body. Apparently everything CF as an infant to my lungs and head as a child then sinus and GI as a teen to a slow decline as I entered my fifties. GERD may be hard to articulate so you might explain it without giving away that he might have some heartburn to discuss.

Good luck, hey if you try the facial sauna, let me know what you discover,

LL

 

[rosesixtyfive]

Thank you so much, Little Lab. He actually got over this last cold, and I was so excited because I thought he had cleared it without antibiotics...then what do you know? A few days after clearing the cold, he started with symptoms of a sinus infection, so he is now on Cefdinir for 14 days. Thank you so much for your interest in Sam and getting him healthy. I will let you know how the sauna and the antibiotics work. he does take probiotics, but not with antibiotics. He is taking ratinidine, an antacid as well.

 

[PACmommy]

Just a thought. Ainsley has always done neilmed sinus rinse for her sinus issues and never cleared any mucous prior to her last fess. A few days after her surgery, a couple months ago, she developped a really mucousy cough which became so bad it was blocking her airway. The ent explained that the really thick nasty stuff was finally draining. We had to encourage her to really cough hard to clear it, which was scary for her cause she could not pass air. When it finally cleared from her airway it was the biggest thickest gob of mucous I had ever seen. After that we have been more aggressive with her sinus rinses and she is clearing more mucous. No probs since then.