From: Jeanette <yonder@...>
Subject: [helpsinuses] Re: Very desperately looking for answers
To: helpsinuses@yahoogroups.com
Date: Friday, February 13, 2009, 10:47 AM

Hi, I am glad they are going to culture the bacteria, that should have been done long ago to see what they are fighting.Poor kid. And yes the probiotics are important, they help with his immune system. Make sure he is taking a probiotic that has many of the bacteria found in the intestine, not just one. Taking vitamins may be harder on his system, if he eats a good balanced meal he really doesn't need them.But ask the doctor to make sure. Breaking dowm the vitamins may be an added energy user that he may not even need. Thanks and good luck to this little fellow. Jeanette
--- In helpsinuses@yahoogroups.com, "spsgroup1" <spsgroup1@...>
wrote:
>
> thanks for letting us know. I hope your poor little boy gets better
> soon. Try not to be exposed to cigarette smoke. > > > --- In helpsinuses@yahoogroups.com, Scott Solberg <bearfan1974@> wrote:
> >
> > Well, we went to Mayo 3 times. We saw an Infectious Disease and
> Cystic fibrosis specialist who did a ton of blood work and another
> sweat test. The Mayo sweat test was normal, so I guess locally they
> may have not performed the test accuratey the first two times. His
> blood work showed low IgG, especially IgG subclass 1 and he has low
> t-cells and b-cells. So they had an Immunologist look at the results
> and he doesn't think my son has a specific immunity disorder, just a
> weak immunity. The ENT ran a 4th CAT scan and said he has sinus
> scarring from the surgeries, his septum is attached to the turbinate
> on one side- so he has nasal obstruction. The ENT said she won't
> opperate yet, because she thinks that will only lead to more
> scarring. We see the ENT at Mayo in April. She put him on a daily
> antibiotic saline rinse and gave us a thing that turns it into a
> spray. He has to do that every day . So they think the problem got
> so complicated due
> > to the low immunity and bacteria getting trapped and then long term
> swelling , ect. As far as what they will do for it, right now
> nothing. He's got the green out of the nose, dark under eyes, bags,
> same stuff. I guess he'll have to live with it. Unless he gets a
> high fever, than they want to biopsy the tisuue to see what bacteria
> it is to treat it better. I guess his labs show staph and other stuff
> that's been up there. We're glad they ruled out any major underlying
> issue, and we feel confident that Mayo is better qualified to deal
> with his situation, but right now nothing is happening. We did a
> sleep study last night to see if a Cpac machine might help him breath
> better - but who knows. So I'm putting him back on supplements,
> probiotics, enzymes, multivitamins. 8 years old seems pretty young to
> have polyps and constant sinus infection, but he does. We're also
> working with the school to see if they can offer any additional supports
> > for him.
> > > > Heide
> > > > > > "Only those who risk going too far can possibly find out how far
> they can go."
> > > > ~ T.S. Elliot
> > > > --- On Wed, 2/11/09, spsgroup1 <spsgroup1@> wrote:
> > > > From: spsgroup1 <spsgroup1@>
> > Subject: [helpsinuses] Re: Very desperately looking for answers
> > To: helpsinuses@yahoogroups.com
> > Date: Wednesday, February 11, 2009, 8:35 AM
> > > > 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.
> > >
> > > > > > > > > > ------------------------------------
> > > > Chronic Sinusitis Support GroupYahoo! Groups Links
> >
>
------------------------------------
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