Saturday, January 14, 2012

Significant Sinus Disease

So the doctor called back, and while they didn't specifically see any polyps, she did say that he has significant sinus disease. I got the impression that its not really as bad as it sounds? It was described to me as a chronic condition where a persons sinuses are like constantly inflamed and blocked with mucus. Its fairly common with CF apparently. There are acute episodes that one can have if they have sinus disease, like they are assuming Drew is having now. I understand that, like the mucus in the lungs of a CF person, the sinus' also have trouble draining and can culture bacteria. Drew will be on a nasal steroid to try to keep some of the inflammation down, once we get past this acute episode. We have been referred to an ear, nose & throat surgeon (ENT) and will potentially be having sinus surgery to unclog and widen his sinuses. Once they are "clear" that's when the nasal steroid will go into use, trying to prevent further acute episodes. Some kids/people with sinus disease just learn to live with the stuffy/runny sinus cycle, while others get significant relief from repeated sinus surgeries over time. Sometimes these acute episodes will require an antibiotic, but just like his lung infections, the runny/stuffy nose will not be contagious. That's another tough one, because who wants their kids around someone with a funky nose? Oh well, we survived the cough assumptions and we'll survive the nose one too. We have an appointment with the ENT next Friday so hopefully we will have a better solution after that. And hopefully, when Drew gets to try the new FDA drug in April, it will fix his mucus problem and in turn also correct some of these sinus issues too!


  1. I happened upon your block and your darling little guy while looking for some info on the Hillrom vest. My son tested negative for CF but presents very similarly. He has multiple profound disabilities and I do manual CPT and nebs and suctioning regularly. I just wanted to write and thank you for your blog, but also ask for more information on the trial drug you mentioned. My Malcolm has chronic sinus blockage, not to mention over production of mucous everywhere. I would love to research it and talk to his doc about it if it is applicable.

  2. Thanks for your kind words! I want to send you a note back about your son and the trial drug but I don't have any way to contact you. Can you email me? Email address is

  3. The Chronic Sinusitis Cure
    This is a Cure Not a treatment for Chronic Sinusitis.

    Mayo Clinic found that fungus causes Chronic Sinusitis.

    My booklet explains how to kill that fungus by reintroducing selected "Friendly" bacteria directly into the sinuses. These bacteria are normally present in your sinuses, but are killed by antibiotics and/or other means typically used to treat Chronic Sinusitis. Orally consumed bacteria will not reach the sinuses, to eliminate that fungus.
    The "Friendly" Bacteria may also impede the onset of Acute Sinusitis, by negatively impacting "bad" bacteria.