RE: sinus infection wont clear

[Guest guest]

Have they done cultures to see what organism it is?.....sometimes resistant

infections just need a certain antibiotic that they're not giving her...my son

had a persistent sinus infection a few years ago, 2 months of augmentin,

cephalosporins, and biaxin didn't cure it....so they finally did a culture, it

was MRSA.....he had to be hospitalized by this time because it had spread to his

mastoid bone! very dangerous....after 3 weeks of Vancomycin, all signs of it

were gone....he is also on Hizentra, before that was gamunex...

She may also be dealing with a fungus...fungi that hide in the spaces of the

sinuses are vicious, and only something that kills fungi would help....and of

course our kids with dysfunctional immune systems are prone to these odd or

resistant things more so than other kids....

The organism may be Beta-lactam positive, which take long courses of antibiotics

or else they return ...this also happened with my son...it was cultured and was

mycobacterium catarrhalis.....the mucus was so profuse, and greenish....

My son also has Chronic neutropenia, besides the CVID....so this causes more

trouble, another arm of the immune system...for this he requires Neupogen

3x/week...it keeps his white blood cells high enough to fight bacterial

infections by making his bone marrow produce more neutrophils, which he was

lacking...

Change ENTs.....I've seen how dangerous sinus infections are when it went to my

son's mastoid and also my sister in law passed away at the age of 45 because a

sinus infection turned into meningitis...it was rare, but so horrible...she was

a vegetarian, very health conscious, a runner, and poor darling died because of

a sinus infection complication.

See a new ENT and make sure they culture it, both fungal and bacterial

cultures...also aerobic and anaerobic cultures...ask specifically.....she's had

this too long...something is wrong...Hugs to you both......sue

From: nancy barnes <nancyb315@...>

Subject: sinus infection wont clear

Date: Sunday, July 1, 2012, 7:26 AM

 

Hi, I very seldom post as my daughter is no longer a ped  (just turned

22) but I figured if anyone would have suggestions, this would be the place to

find it! 

Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town).  She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse.  I brought her

home for the weekend, and, in retrospect, don't know what I was thinking any

weekend dr or er would do for her when she hasn't been helped so far...she was

switched her fm Biaxin to Bactrim and given Astelin nasal spray.  I couldn't

even get them to test her blood levels today and quite frankly, I doubt they

would have known what to do with it in terms of PIDD...

She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners.  We are

trying to see an immuno at another university but he is booking into Oct. 

Any advice would be welcome and appreciated.  Not sure whether to switch her to

new antibiotic, seek another ENT, ? 

Thank you in advance for your help.

mom to (CVID, jra, hashimotos)

[Guest guest]

Have they done cultures to see what organism it is?.....sometimes resistant

infections just need a certain antibiotic that they're not giving her...my son

had a persistent sinus infection a few years ago, 2 months of augmentin,

cephalosporins, and biaxin didn't cure it....so they finally did a culture, it

was MRSA.....he had to be hospitalized by this time because it had spread to his

mastoid bone! very dangerous....after 3 weeks of Vancomycin, all signs of it

were gone....he is also on Hizentra, before that was gamunex...

She may also be dealing with a fungus...fungi that hide in the spaces of the

sinuses are vicious, and only something that kills fungi would help....and of

course our kids with dysfunctional immune systems are prone to these odd or

resistant things more so than other kids....

The organism may be Beta-lactam positive, which take long courses of antibiotics

or else they return ...this also happened with my son...it was cultured and was

mycobacterium catarrhalis.....the mucus was so profuse, and greenish....

My son also has Chronic neutropenia, besides the CVID....so this causes more

trouble, another arm of the immune system...for this he requires Neupogen

3x/week...it keeps his white blood cells high enough to fight bacterial

infections by making his bone marrow produce more neutrophils, which he was

lacking...

Change ENTs.....I've seen how dangerous sinus infections are when it went to my

son's mastoid and also my sister in law passed away at the age of 45 because a

sinus infection turned into meningitis...it was rare, but so horrible...she was

a vegetarian, very health conscious, a runner, and poor darling died because of

a sinus infection complication.

See a new ENT and make sure they culture it, both fungal and bacterial

cultures...also aerobic and anaerobic cultures...ask specifically.....she's had

this too long...something is wrong...Hugs to you both......sue

From: nancy barnes <nancyb315@...>

Subject: sinus infection wont clear

Date: Sunday, July 1, 2012, 7:26 AM

 

Hi, I very seldom post as my daughter is no longer a ped  (just turned

22) but I figured if anyone would have suggestions, this would be the place to

find it! 

Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town).  She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse.  I brought her

home for the weekend, and, in retrospect, don't know what I was thinking any

weekend dr or er would do for her when she hasn't been helped so far...she was

switched her fm Biaxin to Bactrim and given Astelin nasal spray.  I couldn't

even get them to test her blood levels today and quite frankly, I doubt they

would have known what to do with it in terms of PIDD...

She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners.  We are

trying to see an immuno at another university but he is booking into Oct. 

Any advice would be welcome and appreciated.  Not sure whether to switch her to

new antibiotic, seek another ENT, ? 

Thank you in advance for your help.

mom to (CVID, jra, hashimotos)

[Guest guest]

Don't know if this helps, but when I was a teenager I got tonsillitis and it

developed a deep access infection in my neck. Aftertreating the regular tonsil

infection it never got better, just worse, doctors had no clue what was wrong.

My neck was swollen and very painful! I was admitted to the hospital and they

drew blood cultures. They put me on Iv rx but it still got worse, several says

later the cultures came back showing which bacteria was growing. The put me on

the correct Iv rx and it finally began to clear. After healing they waited a

few months and removed the tonsils. Just a though it could be and abscess and

without proper rx Dan go into the blood stream.

Sent from my iPhone

On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

Don't know if this helps, but when I was a teenager I got tonsillitis and it

developed a deep access infection in my neck. Aftertreating the regular tonsil

infection it never got better, just worse, doctors had no clue what was wrong.

My neck was swollen and very painful! I was admitted to the hospital and they

drew blood cultures. They put me on Iv rx but it still got worse, several says

later the cultures came back showing which bacteria was growing. The put me on

the correct Iv rx and it finally began to clear. After healing they waited a

few months and removed the tonsils. Just a though it could be and abscess and

without proper rx Dan go into the blood stream.

Sent from my iPhone

On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

Hi, .

I'm so sorry is,going through this.

Did they rule out fungal infection? If she is on mtx or steroids with

antibiotic, she is at risk for fungal infection.

I know a doc in private practice that does ID and has,experience with

differential diagnosis on this particular issue. He is top doc at Cedars...adult

medicine. Call me if you want his info.

Schulman, PhD, RD

Sent from my HTC smartphone, please forgive autocorrects.

----- Reply message -----

From: " nancy barnes " <nancyb315@...>

< >

Subject: sinus infection wont clear

Date: Sun, Jul 1, 2012 12:26 am

Hi, I very seldom post as my daughter is no longer a ped  (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find

it! 

Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town).  She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse.  I brought her

home for the weekend, and, in retrospect, don't know what I was thinking any

weekend dr or er would do for her when she hasn't been helped so far...she was

switched her fm Biaxin to Bactrim and given Astelin nasal spray.  I couldn't

even get them to test her blood levels today and quite frankly, I doubt they

would have known what to do with it in terms of PIDD...

She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners.  We are

trying to see an immuno at another university but he is booking into Oct. 

Any advice would be welcome and appreciated.  Not sure whether to switch her to

new antibiotic, seek another ENT, ? 

Thank you in advance for your help.

mom to (CVID, jra, hashimotos)

[Guest guest]

AMAZING! From our experiences with my kids and being a RN you are being given a

" a load of CR-P " . Appropriate care would include a " sinus clean out " with

anesthesia and IV antibiotics for 4-6 weeks. You also need to be doing nasal

rinses several times a day with a nettie pot or sinuaid. Both my kids one with

PID and one with out have had NUMEROUS nasty infections and when it gets to this

point you start the BIG GUNS to get rid of it since it can cross into the places

you do not want it to cross. FIND ANOTHER ENT AND IMMUNOLOGIST! THIS IS BASIC

and RIDICULOUS! I would go back to the ER and ask for another ENT so that she

can get some help ASAP. OH also you need to make sure she is not around mold

somewhere in her living situation. Not always the case but it often can be a

reason for it being so persistent. You may have to PUSH but remember we are

behind you! Barbie

From: nancyb315@...

Date: Sun, 1 Jul 2012 00:26:30 -0700

Subject: sinus infection wont clear

Hi, I very seldom post as my daughter is no longer a ped (just turned 22)

but I figured if anyone would have suggestions, this would be the place to find

it!

Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

Any advice would be welcome and appreciated. Not sure whether to switch her to

new antibiotic, seek another ENT, ?

Thank you in advance for your help.

mom to (CVID, jra, hashimotos)

[Guest guest]

,

I just tried your cell but its not going through.

Call me, please.

----- Reply message -----

From: " nancy barnes " <nancyb315@...>

< >

Subject: sinus infection wont clear

Date: Sun, Jul 1, 2012 12:26 am

Hi, I very seldom post as my daughter is no longer a ped  (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find

it! 

Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town).  She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse.  I brought her

home for the weekend, and, in retrospect, don't know what I was thinking any

weekend dr or er would do for her when she hasn't been helped so far...she was

switched her fm Biaxin to Bactrim and given Astelin nasal spray.  I couldn't

even get them to test her blood levels today and quite frankly, I doubt they

would have known what to do with it in terms of PIDD...

She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners.  We are

trying to see an immuno at another university but he is booking into Oct. 

Any advice would be welcome and appreciated.  Not sure whether to switch her to

new antibiotic, seek another ENT, ? 

Thank you in advance for your help.

mom to (CVID, jra, hashimotos)

[Guest guest]

Barbs and , This makes sense, except I'd want to know if its fungal...or

type of infection before doing sinus,irrigation.

----- Reply message -----

From: " Barbie Jimenez " <mother5590@...>

< >

Subject: sinus infection wont clear

Date: Sun, Jul 1, 2012 9:00 am

AMAZING! From our experiences with my kids and being a RN you are being given a

" a load of CR-P " . Appropriate care would include a " sinus clean out " with

anesthesia and IV antibiotics for 4-6 weeks. You also need to be doing nasal

rinses several times a day with a nettie pot or sinuaid. Both my kids one with

PID and one with out have had NUMEROUS nasty infections and when it gets to this

point you start the BIG GUNS to get rid of it since it can cross into the places

you do not want it to cross. FIND ANOTHER ENT AND IMMUNOLOGIST! THIS IS BASIC

and RIDICULOUS! I would go back to the ER and ask for another ENT so that she

can get some help ASAP. OH also you need to make sure she is not around mold

somewhere in her living situation. Not always the case but it often can be a

reason for it being so persistent. You may have to PUSH but remember we are

behind you! Barbie

From: nancyb315@...

Date: Sun, 1 Jul 2012 00:26:30 -0700

Subject: sinus infection wont clear

Hi, I very seldom post as my daughter is no longer a ped (just turned 22)

but I figured if anyone would have suggestions, this would be the place to find

it!

Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

Any advice would be welcome and appreciated. Not sure whether to switch her to

new antibiotic, seek another ENT, ?

Thank you in advance for your help.

mom to (CVID, jra, hashimotos)

[Guest guest]

There is another suggestion for her pain. Afrin 2x a day for 3 days and then do

not use it for 24 hrs and then you can repeat. This will begin to open things up

and allow it to drain. It can cause a rebound stuffiness so you need to take the

break every few days. This has been a LIFESAVER for our family when we need it.

If you can use it about 30 min prior to the Sinurinse it will REALLY help to

open up the sinuses so that it is more comfortable and can get that junk out of

there. Barbie

From: kksilk526@...

Date: Sun, 1 Jul 2012 08:00:33 -0400

Subject: Re: sinus infection wont clear

Don't know if this helps, but when I was a teenager I got tonsillitis and

it developed a deep access infection in my neck. Aftertreating the regular

tonsil infection it never got better, just worse, doctors had no clue what was

wrong. My neck was swollen and very painful! I was admitted to the hospital

and they drew blood cultures. They put me on Iv rx but it still got worse,

several says later the cultures came back showing which bacteria was growing.

The put me on the correct Iv rx and it finally began to clear. After healing

they waited a few months and removed the tonsils. Just a though it could be and

abscess and without proper rx Dan go into the blood stream.

Sent from my iPhone

On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

The rinses are NOT an issue there is PLENTY of mucus there to culture. You

already are using antibiotics so again it will not make a difference. Just get

her more comfortable and remove the impaction in the sinuses so the body and

deal with it. YES SHE NEEDS MORE TREATMENT BUT RINSES OR AFRIN will not change

things except to make her more comfortable.

;

From: dietdoc@...

Date: Sun, 1 Jul 2012 09:07:35 -0700

Subject: Re: sinus infection wont clear

Barbs and , This makes sense, except I'd want to know if its

fungal...or type of infection before doing sinus,irrigation.

----- Reply message -----

From: " Barbie Jimenez " <mother5590@...>

< >

Subject: sinus infection wont clear

Date: Sun, Jul 1, 2012 9:00 am

AMAZING! From our experiences with my kids and being a RN you are being given a

" a load of CR-P " . Appropriate care would include a " sinus clean out " with

anesthesia and IV antibiotics for 4-6 weeks. You also need to be doing nasal

rinses several times a day with a nettie pot or sinuaid. Both my kids one with

PID and one with out have had NUMEROUS nasty infections and when it gets to this

point you start the BIG GUNS to get rid of it since it can cross into the places

you do not want it to cross. FIND ANOTHER ENT AND IMMUNOLOGIST! THIS IS BASIC

and RIDICULOUS! I would go back to the ER and ask for another ENT so that she

can get some help ASAP. OH also you need to make sure she is not around mold

somewhere in her living situation. Not always the case but it often can be a

reason for it being so persistent. You may have to PUSH but remember we are

behind you! Barbie

From: nancyb315@...

Date: Sun, 1 Jul 2012 00:26:30 -0700

Subject: sinus infection wont clear

Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but I

figured if anyone would have suggestions, this would be the place to find it!

Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

Any advice would be welcome and appreciated. Not sure whether to switch her to

new antibiotic, seek another ENT, ?

Thank you in advance for your help.

mom to (CVID, jra, hashimotos)

[Guest guest]

They also will do " deep cultures " when they are doing irrigations. Sometimes

there are bacteria or fungi deep in there. This is serious at this point as Sue

said earlier.

;

From: dietdoc@...

Date: Sun, 1 Jul 2012 09:07:35 -0700

Subject: Re: sinus infection wont clear

Barbs and , This makes sense, except I'd want to know if its

fungal...or type of infection before doing sinus,irrigation.

----- Reply message -----

From: " Barbie Jimenez " <mother5590@...>

< >

Subject: sinus infection wont clear

Date: Sun, Jul 1, 2012 9:00 am

AMAZING! From our experiences with my kids and being a RN you are being given a

" a load of CR-P " . Appropriate care would include a " sinus clean out " with

anesthesia and IV antibiotics for 4-6 weeks. You also need to be doing nasal

rinses several times a day with a nettie pot or sinuaid. Both my kids one with

PID and one with out have had NUMEROUS nasty infections and when it gets to this

point you start the BIG GUNS to get rid of it since it can cross into the places

you do not want it to cross. FIND ANOTHER ENT AND IMMUNOLOGIST! THIS IS BASIC

and RIDICULOUS! I would go back to the ER and ask for another ENT so that she

can get some help ASAP. OH also you need to make sure she is not around mold

somewhere in her living situation. Not always the case but it often can be a

reason for it being so persistent. You may have to PUSH but remember we are

behind you! Barbie

From: nancyb315@...

Date: Sun, 1 Jul 2012 00:26:30 -0700

Subject: sinus infection wont clear

Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but I

figured if anyone would have suggestions, this would be the place to find it!

Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

Any advice would be welcome and appreciated. Not sure whether to switch her to

new antibiotic, seek another ENT, ?

Thank you in advance for your help.

mom to (CVID, jra, hashimotos)

[Guest guest]

-

It would be a long drive but our immunologist moved from UCLA to Stanford, he is

AMAZING. Sees kids and adults. That might help her to get better overall

management. He manages our kids even with the distance.

Dayna

Sent from my iPhone

On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

-

It would be a long drive but our immunologist moved from UCLA to Stanford, he is

AMAZING. Sees kids and adults. That might help her to get better overall

management. He manages our kids even with the distance.

Dayna

Sent from my iPhone

On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

Dayna, Also I would encourage you to contact IDF and see if you can find a good

Immuno and other providers through them. It is SOOO tough when they become

adults to get the system to take responsibility. They no longer see parents as

advocates but as interfering. I have a 22 year old daughter as well (non pid)

but does have LOTS of congenital medical problems from her Birth mother using

drugs during the pregnancy. My son who is PID is 16 and I am working REALLY hard

to get him set up with providers and gradually trying to get him to take

responsiblity to talking to them to maintain good care. My purpose in saying all

of this is that it is going to be important that you help her set up the network

of care for her ( ENT, Gastroenterologist, Immunologist etc so that when she

does get in trouble she is settled in for care) The ER is useless in these

cases because they only handle life or death situations with any good care. The

rinses will not be a problem with cultures in any way. If the mucus is gone

then there is no problem to deal with anyway. The body will do MUCH better if

you can clear the impactions of " gunk " . I am shocked the ENT is not talking

surgery to get things cleared up since it does get into the bone or cross over

into the brain if it is just sitting there. Antibiotics have a VERY difficult

time working if the sinuses are full. For my kids they insist on irrigating to

get good cultures (prior) to see which antibiotic will work best. Often it does

require IV Antibiotics and they use both aerobic as well as anerobic ones to

kill the bugs. Clearly what they are doing is not working. We also have found

that mold or severe allergies to something they continue to be in contact with

that has been in the equation if infections do not go away. I am sure you are

besides yourself but keep advocating for her. AND YES AFRIN DOES WONDERS for the

short term. I have been overwhelmed with facial pain and headaches and have used

afrin and rinses and have been able to tolerate the infection till I could get

care. Barbie

From: dfladhammer@...

Date: Sun, 1 Jul 2012 13:31:48 -0400

Subject: Re: sinus infection wont clear

-

It would be a long drive but our immunologist moved from UCLA to Stanford, he is

AMAZING. Sees kids and adults. That might help her to get better overall

management. He manages our kids even with the distance.

Dayna

Sent from my iPhone

On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

I second the need for cultures and iv meds. Picc line and home doses. Good luck.

Ursula

Mom to Macey (17,CVID)

On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

I second the need for cultures and iv meds. Picc line and home doses. Good luck.

Ursula

Mom to Macey (17,CVID)

On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

Barbie-

I think you must have misread my post. We have the most amazing immunologist.

We don't need any help on this one! I think our kids immunologist is

phenomenal!

Sent from my iPhone

On Jul 1, 2012, at 2:09 PM, Barbie Jimenez <mother5590@...> wrote:

>

> Dayna, Also I would encourage you to contact IDF and see if you can find a

good Immuno and other providers through them. It is SOOO tough when they become

adults to get the system to take responsibility. They no longer see parents as

advocates but as interfering. I have a 22 year old daughter as well (non pid)

but does have LOTS of congenital medical problems from her Birth mother using

drugs during the pregnancy. My son who is PID is 16 and I am working REALLY hard

to get him set up with providers and gradually trying to get him to take

responsiblity to talking to them to maintain good care. My purpose in saying all

of this is that it is going to be important that you help her set up the network

of care for her ( ENT, Gastroenterologist, Immunologist etc so that when she

does get in trouble she is settled in for care) The ER is useless in these

cases because they only handle life or death situations with any good care. The

rinses will not be a problem with cultures in any way. If the mucus is gone

then there is no problem to deal with anyway. The body will do MUCH better if

you can clear the impactions of " gunk " . I am shocked the ENT is not talking

surgery to get things cleared up since it does get into the bone or cross over

into the brain if it is just sitting there. Antibiotics have a VERY difficult

time working if the sinuses are full. For my kids they insist on irrigating to

get good cultures (prior) to see which antibiotic will work best. Often it does

require IV Antibiotics and they use both aerobic as well as anerobic ones to

kill the bugs. Clearly what they are doing is not working. We also have found

that mold or severe allergies to something they continue to be in contact with

that has been in the equation if infections do not go away. I am sure you are

besides yourself but keep advocating for her. AND YES AFRIN DOES WONDERS for the

short term. I have been overwhelmed with facial pain and headaches and have used

afrin and rinses and have been able to tolerate the infection till I could!

> get care. Barbie

>

> From: dfladhammer@...

> Date: Sun, 1 Jul 2012 13:31:48 -0400

> Subject: Re: sinus infection wont clear

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> -

>

>

>

> It would be a long drive but our immunologist moved from UCLA to Stanford, he

is AMAZING. Sees kids and adults. That might help her to get better overall

management. He manages our kids even with the distance.

>

>

>

> Dayna

>

> Sent from my iPhone

>

>

>

> On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

>

>

>

>> Hi, I very seldom post as my daughter is no longer a ped (just turned 22)

but I figured if anyone would have suggestions, this would be the place to find

it!

>

>>

>

>> Her sinus infection started with horrible eye pain - no other symptoms; 3

days later, the entire side of her face was swollen with very severe facial

pain; ER gave pain injections & referred her to an ENT (her's was out of town).

She is on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he

said she is still fully infected, prescribed 3 more months of antibiotics, then

said he's out of answers, it's an immune issue. Friday, my daughter phoned from

camp (where she's working all summer) to say she's feeling worse. I brought her

home for the weekend, and, in retrospect, don't know what I was thinking any

weekend dr or er would do for her when she hasn't been helped so far...she was

switched her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't

even get them to test her blood levels today and quite frankly, I doubt they

would have known what to do with it in terms of PIDD...

>

>>

>

>> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

>>

>

>> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

>>

>

>> Thank you in advance for your help.

>

>>

>

>>

>

>> mom to (CVID, jra, hashimotos)

>

>>

>

>>

[Guest guest]

Barbie-

I think you must have misread my post. We have the most amazing immunologist.

We don't need any help on this one! I think our kids immunologist is

phenomenal!

Sent from my iPhone

On Jul 1, 2012, at 2:09 PM, Barbie Jimenez <mother5590@...> wrote:

>

> Dayna, Also I would encourage you to contact IDF and see if you can find a

good Immuno and other providers through them. It is SOOO tough when they become

adults to get the system to take responsibility. They no longer see parents as

advocates but as interfering. I have a 22 year old daughter as well (non pid)

but does have LOTS of congenital medical problems from her Birth mother using

drugs during the pregnancy. My son who is PID is 16 and I am working REALLY hard

to get him set up with providers and gradually trying to get him to take

responsiblity to talking to them to maintain good care. My purpose in saying all

of this is that it is going to be important that you help her set up the network

of care for her ( ENT, Gastroenterologist, Immunologist etc so that when she

does get in trouble she is settled in for care) The ER is useless in these

cases because they only handle life or death situations with any good care. The

rinses will not be a problem with cultures in any way. If the mucus is gone

then there is no problem to deal with anyway. The body will do MUCH better if

you can clear the impactions of " gunk " . I am shocked the ENT is not talking

surgery to get things cleared up since it does get into the bone or cross over

into the brain if it is just sitting there. Antibiotics have a VERY difficult

time working if the sinuses are full. For my kids they insist on irrigating to

get good cultures (prior) to see which antibiotic will work best. Often it does

require IV Antibiotics and they use both aerobic as well as anerobic ones to

kill the bugs. Clearly what they are doing is not working. We also have found

that mold or severe allergies to something they continue to be in contact with

that has been in the equation if infections do not go away. I am sure you are

besides yourself but keep advocating for her. AND YES AFRIN DOES WONDERS for the

short term. I have been overwhelmed with facial pain and headaches and have used

afrin and rinses and have been able to tolerate the infection till I could!

> get care. Barbie

>

> From: dfladhammer@...

> Date: Sun, 1 Jul 2012 13:31:48 -0400

> Subject: Re: sinus infection wont clear

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> -

>

>

>

> It would be a long drive but our immunologist moved from UCLA to Stanford, he

is AMAZING. Sees kids and adults. That might help her to get better overall

management. He manages our kids even with the distance.

>

>

>

> Dayna

>

> Sent from my iPhone

>

>

>

> On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

>

>

>

>> Hi, I very seldom post as my daughter is no longer a ped (just turned 22)

but I figured if anyone would have suggestions, this would be the place to find

it!

>

>>

>

>> Her sinus infection started with horrible eye pain - no other symptoms; 3

days later, the entire side of her face was swollen with very severe facial

pain; ER gave pain injections & referred her to an ENT (her's was out of town).

She is on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he

said she is still fully infected, prescribed 3 more months of antibiotics, then

said he's out of answers, it's an immune issue. Friday, my daughter phoned from

camp (where she's working all summer) to say she's feeling worse. I brought her

home for the weekend, and, in retrospect, don't know what I was thinking any

weekend dr or er would do for her when she hasn't been helped so far...she was

switched her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't

even get them to test her blood levels today and quite frankly, I doubt they

would have known what to do with it in terms of PIDD...

>

>>

>

>> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

>>

>

>> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

>>

>

>> Thank you in advance for your help.

>

>>

>

>>

>

>> mom to (CVID, jra, hashimotos)

>

>>

>

>>

[Guest guest]

I must have responded to the wrong poster. She had said that she was struggling

with her immunologist asking her to use Dandelion tea???? Sorry

From: dfladhammer@...

Date: Sun, 1 Jul 2012 14:36:04 -0400

Subject: Re: sinus infection wont clear

Barbie-

I think you must have misread my post. We have the most amazing immunologist.

We don't need any help on this one! I think our kids immunologist is

phenomenal!

Sent from my iPhone

On Jul 1, 2012, at 2:09 PM, Barbie Jimenez <mother5590@...> wrote:

>

> Dayna, Also I would encourage you to contact IDF and see if you can find a

good Immuno and other providers through them. It is SOOO tough when they become

adults to get the system to take responsibility. They no longer see parents as

advocates but as interfering. I have a 22 year old daughter as well (non pid)

but does have LOTS of congenital medical problems from her Birth mother using

drugs during the pregnancy. My son who is PID is 16 and I am working REALLY hard

to get him set up with providers and gradually trying to get him to take

responsiblity to talking to them to maintain good care. My purpose in saying all

of this is that it is going to be important that you help her set up the network

of care for her ( ENT, Gastroenterologist, Immunologist etc so that when she

does get in trouble she is settled in for care) The ER is useless in these

cases because they only handle life or death situations with any good care. The

rinses will not be a problem with cultures in any way. If the mucus is gone

then there is no problem to deal with anyway. The body will do MUCH better if

you can clear the impactions of " gunk " . I am shocked the ENT is not talking

surgery to get things cleared up since it does get into the bone or cross over

into the brain if it is just sitting there. Antibiotics have a VERY difficult

time working if the sinuses are full. For my kids they insist on irrigating to

get good cultures (prior) to see which antibiotic will work best. Often it does

require IV Antibiotics and they use both aerobic as well as anerobic ones to

kill the bugs. Clearly what they are doing is not working. We also have found

that mold or severe allergies to something they continue to be in contact with

that has been in the equation if infections do not go away. I am sure you are

besides yourself but keep advocating for her. AND YES AFRIN DOES WONDERS for the

short term. I have been overwhelmed with facial pain and headaches and have used

afrin and rinses and have been able to tolerate the infection till I could!

> get care. Barbie

>

> From: dfladhammer@...

> Date: Sun, 1 Jul 2012 13:31:48 -0400

> Subject: Re: sinus infection wont clear

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> -

>

>

>

> It would be a long drive but our immunologist moved from UCLA to Stanford, he

is AMAZING. Sees kids and adults. That might help her to get better overall

management. He manages our kids even with the distance.

>

>

>

> Dayna

>

> Sent from my iPhone

>

>

>

> On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

>

>

>

>> Hi, I very seldom post as my daughter is no longer a ped (just turned 22)

but I figured if anyone would have suggestions, this would be the place to find

it!

>

>>

>

>> Her sinus infection started with horrible eye pain - no other symptoms; 3

days later, the entire side of her face was swollen with very severe facial

pain; ER gave pain injections & referred her to an ENT (her's was out of town).

She is on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he

said she is still fully infected, prescribed 3 more months of antibiotics, then

said he's out of answers, it's an immune issue. Friday, my daughter phoned from

camp (where she's working all summer) to say she's feeling worse. I brought her

home for the weekend, and, in retrospect, don't know what I was thinking any

weekend dr or er would do for her when she hasn't been helped so far...she was

switched her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't

even get them to test her blood levels today and quite frankly, I doubt they

would have known what to do with it in terms of PIDD...

>

>>

>

>> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

>>

>

>> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

>>

>

>> Thank you in advance for your help.

>

>>

>

>>

>

>> mom to (CVID, jra, hashimotos)

>

>>

>

>>

[Guest guest]

I must have responded to the wrong poster. She had said that she was struggling

with her immunologist asking her to use Dandelion tea???? Sorry

From: dfladhammer@...

Date: Sun, 1 Jul 2012 14:36:04 -0400

Subject: Re: sinus infection wont clear

Barbie-

I think you must have misread my post. We have the most amazing immunologist.

We don't need any help on this one! I think our kids immunologist is

phenomenal!

Sent from my iPhone

On Jul 1, 2012, at 2:09 PM, Barbie Jimenez <mother5590@...> wrote:

>

> Dayna, Also I would encourage you to contact IDF and see if you can find a

good Immuno and other providers through them. It is SOOO tough when they become

adults to get the system to take responsibility. They no longer see parents as

advocates but as interfering. I have a 22 year old daughter as well (non pid)

but does have LOTS of congenital medical problems from her Birth mother using

drugs during the pregnancy. My son who is PID is 16 and I am working REALLY hard

to get him set up with providers and gradually trying to get him to take

responsiblity to talking to them to maintain good care. My purpose in saying all

of this is that it is going to be important that you help her set up the network

of care for her ( ENT, Gastroenterologist, Immunologist etc so that when she

does get in trouble she is settled in for care) The ER is useless in these

cases because they only handle life or death situations with any good care. The

rinses will not be a problem with cultures in any way. If the mucus is gone

then there is no problem to deal with anyway. The body will do MUCH better if

you can clear the impactions of " gunk " . I am shocked the ENT is not talking

surgery to get things cleared up since it does get into the bone or cross over

into the brain if it is just sitting there. Antibiotics have a VERY difficult

time working if the sinuses are full. For my kids they insist on irrigating to

get good cultures (prior) to see which antibiotic will work best. Often it does

require IV Antibiotics and they use both aerobic as well as anerobic ones to

kill the bugs. Clearly what they are doing is not working. We also have found

that mold or severe allergies to something they continue to be in contact with

that has been in the equation if infections do not go away. I am sure you are

besides yourself but keep advocating for her. AND YES AFRIN DOES WONDERS for the

short term. I have been overwhelmed with facial pain and headaches and have used

afrin and rinses and have been able to tolerate the infection till I could!

> get care. Barbie

>

> From: dfladhammer@...

> Date: Sun, 1 Jul 2012 13:31:48 -0400

> Subject: Re: sinus infection wont clear

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> -

>

>

>

> It would be a long drive but our immunologist moved from UCLA to Stanford, he

is AMAZING. Sees kids and adults. That might help her to get better overall

management. He manages our kids even with the distance.

>

>

>

> Dayna

>

> Sent from my iPhone

>

>

>

> On Jul 1, 2012, at 3:26 AM, nancy barnes <nancyb315@...> wrote:

>

>

>

>> Hi, I very seldom post as my daughter is no longer a ped (just turned 22)

but I figured if anyone would have suggestions, this would be the place to find

it!

>

>>

>

>> Her sinus infection started with horrible eye pain - no other symptoms; 3

days later, the entire side of her face was swollen with very severe facial

pain; ER gave pain injections & referred her to an ENT (her's was out of town).

She is on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he

said she is still fully infected, prescribed 3 more months of antibiotics, then

said he's out of answers, it's an immune issue. Friday, my daughter phoned from

camp (where she's working all summer) to say she's feeling worse. I brought her

home for the weekend, and, in retrospect, don't know what I was thinking any

weekend dr or er would do for her when she hasn't been helped so far...she was

switched her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't

even get them to test her blood levels today and quite frankly, I doubt they

would have known what to do with it in terms of PIDD...

>

>>

>

>> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

>>

>

>> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

>>

>

>> Thank you in advance for your help.

>

>>

>

>>

>

>> mom to (CVID, jra, hashimotos)

>

>>

>

>>

[Guest guest]

my son's ENT loves Afrin because he says it opens the airways of the nasal

cavity and allows the antibiotics to penetrate the infected areas more

efficiently......sue

> Hi, I very seldom post as my daughter is no longer a ped  (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it! 

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town).  She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse.  I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray.  I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners.  We are

trying to see an immuno at another university but he is booking into Oct. 

>

> Any advice would be welcome and appreciated.  Not sure whether to switch her

to new antibiotic, seek another ENT, ? 

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

my son's ENT loves Afrin because he says it opens the airways of the nasal

cavity and allows the antibiotics to penetrate the infected areas more

efficiently......sue

> Hi, I very seldom post as my daughter is no longer a ped  (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it! 

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town).  She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse.  I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray.  I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners.  We are

trying to see an immuno at another university but he is booking into Oct. 

>

> Any advice would be welcome and appreciated.  Not sure whether to switch her

to new antibiotic, seek another ENT, ? 

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

YES it is what I use FIRST if I think I have a sinus issue. it opens and drains

the sinuses but...... it will cause rebound problems if you use it EVERY DAY.

You have to use it for ONLY 3 days and then take a break. Be agressive with the

rinses for those 3 days and you will probably do so much better than you will

not need it. In the OLD days I remember going to the doctor and they would

irrigate me in the office it was AWFUL because I felt like I was drowning but it

often worked to fix the overall issues by unplugging the sinuses. Afrin came

along to reduce the swelling of the tissues so that the pockets could drain. My

ENT has even made up a solution of Lidocaine and Afrin in his office that I have

sprayed when I have had AWFUL headaches. It has worked wonders. ( the belief is

the pain is caused by the tissue being plugged and or so swollen that it is

touching. These pockets trap bacteria and fungus that if the pockets are open

and draining it would not be a problem. So the infection is generally a

symptom of the sinuses being plugged in most situations. Reducing swelling,

rinsing tissue will prevent MANY infections. Barbie

From: sudubo@...

Date: Sun, 1 Jul 2012 11:43:26 -0700

Subject: RE: sinus infection wont clear

my son's ENT loves Afrin because he says it opens the airways of the nasal

cavity and allows the antibiotics to penetrate the infected areas more

efficiently......sue

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

YES it is what I use FIRST if I think I have a sinus issue. it opens and drains

the sinuses but...... it will cause rebound problems if you use it EVERY DAY.

You have to use it for ONLY 3 days and then take a break. Be agressive with the

rinses for those 3 days and you will probably do so much better than you will

not need it. In the OLD days I remember going to the doctor and they would

irrigate me in the office it was AWFUL because I felt like I was drowning but it

often worked to fix the overall issues by unplugging the sinuses. Afrin came

along to reduce the swelling of the tissues so that the pockets could drain. My

ENT has even made up a solution of Lidocaine and Afrin in his office that I have

sprayed when I have had AWFUL headaches. It has worked wonders. ( the belief is

the pain is caused by the tissue being plugged and or so swollen that it is

touching. These pockets trap bacteria and fungus that if the pockets are open

and draining it would not be a problem. So the infection is generally a

symptom of the sinuses being plugged in most situations. Reducing swelling,

rinsing tissue will prevent MANY infections. Barbie

From: sudubo@...

Date: Sun, 1 Jul 2012 11:43:26 -0700

Subject: RE: sinus infection wont clear

my son's ENT loves Afrin because he says it opens the airways of the nasal

cavity and allows the antibiotics to penetrate the infected areas more

efficiently......sue

> Hi, I very seldom post as my daughter is no longer a ped (just turned 22) but

I figured if anyone would have suggestions, this would be the place to find it!

>

> Her sinus infection started with horrible eye pain - no other symptoms; 3 days

later, the entire side of her face was swollen with very severe facial pain; ER

gave pain injections & referred her to an ENT (her's was out of town). She is

on now 4th month of (2nd) antibiotic, & when ENT scoped her 2 wks ago he said

she is still fully infected, prescribed 3 more months of antibiotics, then said

he's out of answers, it's an immune issue. Friday, my daughter phoned from camp

(where she's working all summer) to say she's feeling worse. I brought her home

for the weekend, and, in retrospect, don't know what I was thinking any weekend

dr or er would do for her when she hasn't been helped so far...she was switched

her fm Biaxin to Bactrim and given Astelin nasal spray. I couldn't even get

them to test her blood levels today and quite frankly, I doubt they would have

known what to do with it in terms of PIDD...

>

> She aged out of her really good immuno at UCLA so we were trying one locally,

but aside from prescribing 's Hizentra, she has gone a little radical,

attributing the core of all allergy and immuno issues to Celiac disease and also

encourages brewing " fresh " dandelion tea (so long as we don't use pesticides in

our yard).. I believe holistic medicine has its place - we are vegetarian, try

to eat certain foods organic, etc, but this is a persistant infection; my

daughter is tremendously discouraged with health care practioners. We are

trying to see an immuno at another university but he is booking into Oct.

>

> Any advice would be welcome and appreciated. Not sure whether to switch her

to new antibiotic, seek another ENT, ?

>

> Thank you in advance for your help.

>

>

> mom to (CVID, jra, hashimotos)

>

>

[Guest guest]

Yes, a great immunologist will help (Dayna, I think we spoke with the same doc

and he seemed outstanding) but, I think, this one might also need an ID doctor

that can get the sinuses cultured properly...and treated...if this was not

already done.

Dayna...hope all is well with you and your brood! : ) : )

Thinking of you, , and sending love...

mom to Dani, CVID, 10

________________________________

From: Dayna <dfladhammer@...>

" " < >

Sent: Sun, July 1, 2012 11:36:13 AM

Subject: Re: sinus infection wont clear

Barbie-

I think you must have misread my post. We have the most amazing immunologist.

We don't need any help on this one! I think our kids immunologist is

phenomenal!

Sent from my iPhone

On Jul 1, 2012, at 2:09 PM, Barbie Jimenez <mother5590@...> wrote: