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Very desperately looking for answers   Message List  
Reply | Forward Message #4141 of 4309 |
Re: Very desperately looking for answers

HI,

I am 53 and have had sinus polyp surgery and constant swelling of the
sinus cavities. I assumed on my own that I had a low immune system
even though nothing showed up.

I understand how he feels with getting dizzy and feeling really bad.
I tried all the things the doctors perscribed which included numerous
antibiotics.

The only thing that has worked for me in Sudafed PE and Tylenol or
even a store brand of Tylenol. It truely is the only thing that has
worked for me in reducing the swelling and pain so I can lead a
normal life now. I suggest you try it with him, stay with the
vitimins and even try aloe vera juice to help boost the immune system

Good luck,

Karen



--- 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
>





Wed Feb 11, 2009 5:48 pm

angel129555
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Message #4141 of 4309 |
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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...
Heide
bearfan1974
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Nov 28, 2008
4:41 pm

http://archotol.ama-assn.org/cgi/reprint/126/7/831.pdf don't know what this is, but after reading the article (you probably already have) this might be a new...
MM99
merrymerry99
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Nov 28, 2008
7:28 pm

... I don't know if an 8 year old can deal with spraying Amphotericin-B solution up into his sinuses, but the Mayo Clinic treatment has pretty much saved my...
chiron_guy
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Nov 28, 2008
10:52 pm

I'm not a doctor, but think that that is way too many sinus surgeries for one person within a year. The recovery from just one operation takes forever. I don't...
spsgroup1
Offline Send Email
Nov 29, 2008
1:55 pm

... With CRS the Ampho-B destroys the normally present fungus, that causes a hyper-immune response, that causes the bacterial infections. The fungus is a...
Gary
chiron_guy
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Nov 30, 2008
12:20 am

When I looked at your list of dietary changes you've tried, I noticed you didn't try gluten-free. This made all the difference for me. MANY, many people with...
spanishmiss430
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Nov 29, 2008
2:31 pm

Heide: This is horrible, I really feel for your son.  I am 40 and have had 6 sinus surgeries and feel that I would have been better off without them.  I now...
Gail Pearce
gailkpearce
Offline Send Email
Dec 25, 2008
10:08 pm

We went to Mayo this week- after an MRI that ruled out brain involvement.  Of course Mayo noticed scar tissue now that's attaching the septum to whatever so...
Scott Solberg
bearfan1974
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Dec 25, 2008
10:14 pm

Heide- I'm very glad to hear that you were able to take your son to the Mayo clinic and that the testing has been able to pinpoint what's happening. I...
spsgroup1
Offline Send Email
Dec 27, 2008
3:00 am

Hi, how is your son? Monica...
spsgroup1
Offline Send Email
Feb 11, 2009
2:36 pm

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...
Scott Solberg
bearfan1974
Offline Send Email
Feb 11, 2009
3:05 pm

thanks for letting us know. I hope your poor little boy gets better soon. Try not to be exposed to cigarette smoke. ... Cystic fibrosis specialist who did a...
spsgroup1
Offline Send Email
Feb 12, 2009
1:37 pm

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...
Jeanette
redhats01
Offline Send Email
Feb 13, 2009
4:47 pm

Well, the doctor that performed his four surgeries didn't tell us that my son had developed scar tissue nor did he tell us two of the cultures from surgery...
Scott Solberg
bearfan1974
Offline Send Email
Feb 13, 2009
5:06 pm

HI, I am 53 and have had sinus polyp surgery and constant swelling of the sinus cavities. I assumed on my own that I had a low immune system even though...
angel129555
Offline Send Email
Feb 13, 2009
2:09 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...
Jeanette
redhats01
Offline Send Email
Feb 12, 2009
4:51 pm

We've now ruled out cystic fibrosis, allergies, fungas, and everything else.  He does have a lowered immunity, but not severe enough for treatment.  He has a...
Scott Solberg
bearfan1974
Offline Send Email
Feb 12, 2009
4:57 pm
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