Hi,
how is your son?
Monica



--- In helpsinuses@yahoogroups.com, "Heide" <bearfan1974@...> wrote:
>
> My son is 8 years old and is suffering from severe chronic
> sinisitus. In the last two years we've been to almost a hundred
> specialist, had allergy test (negative) , two sweat test for CF (
> abnormal), two genetic dna sequencing (normal), tons of blood draws
> and sinus cultures and immuno- testing. Yet still no answer. It
> started with strep- he would get it every so often. Then he started
> getting infections monthly. Finally they did tonsil and adnoid
> removal and the surgeon came out concerned. Apparently my sons'
> adnoids had infection all over them. Also the sinus cavities were
> full of infectious material. The surgeon said he needed to follow up
> with a Cat scan. When we went in for the results the first thing the
> ENT said is "this is no good" We looked and shocked- the sinuses
> were all swollen shut almost completely. The maxillary sinuses one
> had the size of a marble, the other one a little larger, but no
> drainage. The sphenoid and all the others were completely swollen
> shut. Thus started the series of testing for cystic fibrosis ( took
> a year to finally get a negative for sure), immunology- he has
> somewhat low IgG, allergies- nothing!!!. The doctor decided after
> looking at the sinus that he would do the balloon surgery. He did
> it, prescribed antibiotics and steroid, and said my son was cured. A
> month later my son was infected again. Another CAT scan showed that
> it had swollen shut again. So surgery two where the doctor was more
> invasive in the balloon procedure. He put my son on extreme
> antibiotics for months and steroids - in a month or two the sinuses
> were completely swollen shut again. By this time my husband and I
> were upset. The doctor was confused and didn't want to do a more
> invasive surgery. But my son gets so out of it when he's sick he's
> just spacey and confused, can't follow directions, forgets what he's
> doing, spins in circles, talks to the walls. Right after surgery
> he's bright ,energetic, normal. For a little while. Than back to
> black around the eyes, puffy , it's horrible. So we get a second
> opinion- 3 surgeries in one year and no results. This doctor takes
> one look at the CAT scans and points out that the disease has
> actually progressed and is worse and my son needs immediate
> endoscopic surgury to cut open and remove bad tissue. So surgery
> number four. My poor boy- he wakes up each time after surgery
> vommitting blood, crying, sick, and we tell him we're making him
> better but we're not. His last surgery was August, by Sept. he had a
> polyp in his nose. We were given steroid and antibiotic drops to put
> in the sinuses while he hung upside down. We're still doing daily
> saline washes and nasal steroid sprays. This last visit we were told
> he's swollen and infected again. We go back in two weeks to decide
> on surgery or not- my son's back on 21 days antibiotic. We asked for
> a referal to Mayo- a major medical center, since only 1% of children
> get nasal polyps. I'm so upset. I can't begin to describe to people
> the effect this is having on my son's well- being. It affects how he
> does in school too.
>
> What I've tried so far, dairy free, flax seed and fish oil,
> probiotics, enzymes, sugar free- no results.
>