Saturday, December 1, 2012

Sinus Junk

Since he got pneumonia a year-and-a-half ago just before his birthday, Dean has battled recurrent sinus infections that frequently turn into pneumonia. We've found that there is a definite period of junk being in his sinuses and then it moves to his lungs. As soon as Dean shows any signs of being sick, we start on the regimen of saline, Nose Frida, nebulizer with pulmicort and albuterol, cortef, the works. It's really annoying, and honestly? It doesn't seem to work. We would bring Dean in at some point in the first week of the infection and of course his lungs would be clear. Then it was only a matter of time if we didn't treat it that the infection would land in his lungs. Because Dean has such low tone, it is much more difficult for him to clear mucus from his nose and lungs than it is for someone else with normal muscle tone. I remember another PWS mom telling me about this when Dean was itty bitty and I thought, 'yeah yeah, ok, all right, I'll keep that in mind. But it's no joke. I definitely have always taken for granted how vital it is to have a productive cough and sneeze and the rest of it.

So the question now is, how do we get Dean to stop having so many sinus infections? We seem to be able to stop the pneumonia if we treat him with antibiotics while it's still in his sinuses. But obviously we don't like pumping Dean full of antibiotics. He's already on daily nasal spray, pulmicort, probiotics, you name it. A new supplement that he's been taking, PharmaNAC, is supposed to help with respiratory health. Yeah, not so much for us.

We're meeting with the ENT next Friday to talk about all this. There is obviously something going on with Dean's sinuses because he has that drainy look in his face and gets infections in them so easily. He still has obstructive apnea (hence the BiPAP), which his sleep doc, pulm, and Dr. Miller all agree could be related to this nasal airway stuff (instead of weak throat airway). Dr. Miller really doesn't want Dean to have any more surgeries right now because of all the PWS-related risks with anesthesia (just because Dean has had 4 surgeries and done fine with it doesn't mean it can't go south next time. There are many risks with PWS and anesthesia). So we'll see what else is an option.

Dean has a sinus infection that we caught right now before it turned into pneumonia. Poor kid can't breathe too well. Hooray for augmentin. :/ Is there something underneath all this that we can tap into so the cycle stops?  I think so. Just have to find it. PWS never relieves a mom of the duty of super sleuth.

Good thing he's so cute. :)

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