From: Jeanette <yonder@...>
Subject: [helpsinuses] Re: Very desperately looking for answers
To: helpsinuses@yahoogroups.com
Date: Thursday, February 12, 2009, 10:51 AM

Hi, have they checked to see if he has a fungal infection, have they done a culture to see exactly what kind of bacteria or fungus it is that you are fighting,try grape fruit seed extract nasal sprays, they make a hostile environment for bacteria, it will burn at first, but that should go away with treatment, find it on the net, good luck to you, poor kid Jeanette
--- In helpsinuses@yahoogroups.com, "spsgroup1"
<spsgroup1@...> wrote:
>
> 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.
> >
>
------------------------------------
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