Nasal polyps and cystic fibrosis

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Post  Sun, Jul 11 2010, 2:27 am
My son has suffered from sinus problems for years. They never really bothered him, but his sniffling would drive me crazy until I took him to the Dr. and it would be a sinus infection. This last time, he had such a headache that he could not lift his head. The Dr. gave him meds, but he was still sniffling-though his head stopped hurting. Dr. wanted a ct scan of his sinuses, but insurance denied it-he wasn't on meds for 4 weeks.

So Dr. sent us to ENT. He found nasal polyps-rare in children. He has him on meds, steroids and nasal spray. The ent said he doesnt like giving steroids to kids, and the dose is usually 10mg. He is giving my son 15mg. When meds are done, he will have a ct scan-insurance should okay it because of the polyps. He also said that nasal polyps are a symptom of cystic fibrosis. That scares me. I haven's had much time for research, but I am trying to find out how likely he is to have it. Like what percentage of kids with nasal polyps have cystic fibrosis? And how long does it take to get test results?

They are scheduling him to be tested, but we dont have a date for it yet.

DS is 14
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Post  Wed, Jul 14 2010, 12:57 pm
I am writing to reassure you.

When I married my DH when he was 23, he had already had polyps for a few years. He developed them around age 20, which is a little later than your son. I wonder though if it wasn't earlier, I wasn't around then to know.

we were also told about the CF testing by a top top ENT, but we opted out bec we figured we have nothing much to gain from the knowledge. Perhaps genetically it would be good to have CF testing pre-marriage, but we were already married. he does have asthma issues aside from the polyps, so who knows maybe he does have mild CF (??) but I don't think the treatment would be different to what he using anyway (preventative puffers, singulair).

DH has had 2 surgeries to remove the polyps. Both times they came right back. The top ENT told us the only way to keep them away is to have them repeatedly scraped out after surgery (once a week for 6 weeks) which terrified him, frankly. And even then, they may still come back. So surgery obviously is not the answer.

DH loves taking oral steroid as they offer the only complete relief. However they are far from recommended medically wise, bringing serious side affects if used too often. I am sure your doctor explained this to you. Currently, DH uses a topical steroid nasal spray which does not carry the side effects of oral steriods as it doesn't go through the body. Talk to your doctor about it. The only thing is that it needs to used regularly, ideally 1-2 x a day, something that you/your son will have to committed about for it to work.

At the beg of our marriage, DH would never have been willing to, but now after we have done the whole ring around, he has stuck with it and seen significant relief. They can still flare up, but BH he no longer gets constant sinuses, and his tissue usage Smile has decreased significantly. Our ENT also mentioned other patients who have shrunk their polyps/had noticaebale relief from these steroid nasal sprays after having used them for an extended period.

Hope this helps, if not post and I'll be glad to reply.
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Post  Wed, Jul 14 2010, 1:40 pm
OP here. Thank you for the info. Our Dr. (not the ent) said that he highly doubts ds has cystic fibrosis-he is just too healthy and thriving. I have calmed a lot, but will still take him for testing-on the 28th of this month. It's just to ease our minds.

I told ds about the topical nasal spray you mentioned, and he is good with taking meds when needed, so I think it won't be a problem if he ends up going that path later. Can you tell me the name(s) of the nasal sprays your dh uses?
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Post  Wed, Jul 14 2010, 1:44 pm
Glad to hear things have calmed down.

The name of the drug is Flonase.

Like I said earlier, keep at it regularly to get the most benefit. Good Luck!
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Post  Wed, Jul 14 2010, 1:46 pm
Is nasonex in the same category? I am fairly sure he has been given flonase at times, but more often it's nasonex.
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Post  Wed, Jul 14 2010, 1:57 pm
will double check with DH.
I think flonase is preferred over nasonex, but they are pretty similar.

will get back to you on that.
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