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.
> >
>