Overanalyzing Buggers

Aboveallislove

Super Moderator
So DS is 6 and until about 6 months ago, never had a bugger. What I'm trying to figure out is does this say anything about his CF sinus functioning...He hasn't seemed to have any sinus issues, but I want to make sure what to look for. He smells very easily; never complains of headaches; his nose runs when he throws a fit/cries or during treatment. The buggers are "normal" as far as I can tell (I say as far as I can tell as I think the carriers stuff hits me, as I have very and frequent thick mucus and GI issues, so who knows if my "normal" is really "normal" in that compartment.

So any thoughts on whether this means his sinus are working "normally" starting to have issues, etc. And, yes, I know this is overanalyzing, but I have no idea how to access sinus issues and hope those with experience can say "this doesn't say anything...kids get buggers you [unkind words omitted], or whatever the experience. :)

Thanks!
 

Ratatosk

Administrator
Staff member
The variety of symptoms just amongst the DD F508s is interesting. Friend of mine's son has had several sinus surgeries due to polyps, obstruction... Several of them, my child included have had to have speech therapy. Not sure if it's cf related, but ds had issues with his f's s's, etc...

DS' nose never, ever ran until he was 2 1/2 and started pulmozyme. I was amazed as I'd never seen it before. He did get a stuffy sounding nose, even with a sinus infection his nasal mucus was just too thick and we'd attack him with saline and the dreaded bulb syringe. When he was about 4 he was so stuffed up, mouth breathing that I convinced him to try a sinus rinse and was amazed (disgusted to dry heaving) with the amount of nasty yellow crud that came out of his nose.

A few years ago he couldn't breathe out of his left nostril very well and we were afraid it was polyps. Got a referral to a CF ENT, who scoped his sinuses and really only found inflammation -- no polyps. Prescribed a nasal steroid spray before bed and the kid could breathe clearing. He'd also ordered a sinus CT which came back as typical CF sinus disease. DS never has had sinus headaches or pressure. No polyps.... The nasal spray has kept things at bay. We still do sinus rinses if he gets a head cold.
 

Aboveallislove

Super Moderator
That's interesting! DS also has severe speech delays, but has improved greatly, yet still a couple years behind...never thought a connection.
any idea re the buggers? Did DS not have because so blocked up? Or were dry buggers a sign the sinus has the same? Thankfully i don't think we have any of the issues you note, but want to know what to watch for so that was so helpful! And yes...the variety to me is mind boggling...DS has such sever aquagentic wrinkling and I think his gi track is so troubled because of the extreme lack of water..my theory given the aquagenetic wrinkling and his 133 sweat test outcome and that he needs so much miralax and water but when he has he has not a problem on the world re gi...
 

Ratatosk

Administrator
Staff member
Could be you child is one of the lucky ones who doesn't have sinus issues. DS' buggers were just so thick, they wouldn't come out unless pulled or rinsed out. Consistency and color was like rubber cement, yellow and yellowish green. So most likely his nose wouldn't drain and stuff just sorta brewed up there. Bleah!

Nowdays, his nose still doesn't run; but he does dig up his nose from time to time to pull out some dry crusty, normal colored ones.

Friend of mine's daughter has more issues with weight, while her brother has speech delays and had tonsil and sinus issues, which were resolved when his tonsils were removed.
 

Ratatosk

Administrator
Staff member
Thanks! Also any more updates on orkambi?

DH and I were talking about this the other day. Other than the weird stools the first week or so and thinking he doesn't taste as salty, we really haven't noticed anything.

He has grown two inches since his doctor's appointment in June and gained some weight. He hasn't weighed himself lately. He's still eating like crazy, but could be a typical tween growth spurt. A friend of mine's daughter who is a few weeks older than DS and has the same mutation, is a GIANT.
 

Hardak

New member
Well as I understand it long as you have the CF slime going on, there will be issues with the sinuses. I had mine cleaned out earlier this year simply because they where that packed. Apparently had been for a REALLY long time. I also had no issues other then excessive post nasal drip, a slight sinus headache after a heavy coughing fit. A CT would tell you alot about whats going on in the nose with out being invasive. Just like in the lungs parts of the nose (maxillaries) fill with slime. As my ENT put it, its kinda like sandy peanut butter, and is so heavy it has to be scooped out. As part of my nose job they removed some of the bone that makes up part of the walls of the maxillary to allow for gravity draining. Just like in the lungs the cilia simply can't do there job against that heavy CF slime.
 
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