Re: Fw: Sinusitis and C. Diff

[Guest guest]

Thanks for the added input. I was reading about the pulsed vanco treatment and

thinking about asking his immunologist, but he has very low memory B cells as

well so maybe that isn't a good bet. His immuno has suggested home school or

homebound (as have we). Tate is adamently against it so far so the compromise is

if he can stay out of the hospital, for now we are sticking with school. Of

course he is missing over 50% of the time right now so I'm not sure how much

he's getting out of it. I haven't heard of probiotic VSL#3. I'd be happy to read

your info. on probiotics.

>

> Sorry my toddler send the note below before I finished!

>

> just a couple other things...

>

> - we got c.diff under control w/ high dose of IgG and a particular probiotic

(VSL#3) but jury is still out on whether or not to do this with PIDers.

> - our immuno required 90 days of vanco (no pulsing) followed by no antibiotic

(we had to isolate till gut healed).

> - we do sinus irrigation(home rinses) religiously -- whether sick or not.

>

> (See below for the first part of my note)

>

> I have references for probiotics if you need. (I wrote a book and have this as

a chapter--and did consider PID issues/risk).

>

>

> Mom to Dani, CVID+

> Gabe, 2 yrs (knows how to use my blackberry!)

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

> Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

There are no studies--that I'm aware of-- of pulsing vanco w/ peds patients. And

none whatsoever with pulsing PIDers. Still, we tried and she failed the trial.

Later, we learned (from a c.dif expert) that pulsing requires the immune system

to " learn " and catch up--as it might with a healthy adult. Pulsing can help kill

the bugs when they come out of their spore form--that's the theory. (No clinical

trials have been done in Ped-PIDers.) Also, there is no guarantee you'll get

them all--the gut is complex/messy and spores love to burrow in scar tissue.

Yes, isolation or homeschooling is hard at that age. We did it early and she did

so well that we kept going. Maybe you can do a hybrid school/homebound program

till this is under control? Ask the families here for more info, if you are

contemplating other options.

You can read about VSL#3 at pubmed. There are many solid studies on peds

patients. One author is Guandalini

There is a book written by a pharmacist called " Bacteria for Breakfast " . Her son

almost died from c.dif complications and she did VSL. But he wasn't PID so his

immune system did kick in.

My book is, " Nutrition in Sickness and in Health " at Amazon. (It contains

nutrition-immune related articles from when I was doing freelance writing). I

have a short chapter on probiotics -- that is conservative in approach. Still,

it may be controversial, depending on the situation/doctor.

I'm aware of a small number of GI docs that connect gut + immune issues. Hope

you are with one of them!

(Write my name in subject line if u need to contact me...I can't read every

message).

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

Forgot to mention, " metronidazole and vancomycin are equally effective for the

treatment of mild CDAD, but vancomycin is superior for treating patients with

severe CDAD " . (See: Fred A Zar et al, Univ of Illinois @ Chicago, 2007).

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

Forgot to mention, " metronidazole and vancomycin are equally effective for the

treatment of mild CDAD, but vancomycin is superior for treating patients with

severe CDAD " . (See: Fred A Zar et al, Univ of Illinois @ Chicago, 2007).

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

my son has almost 100% naive lymphocytes...poor memory cells.....and the only

things that worked to finally eradicate his cdiff was the vanco pulsing and the

S Boulardi. I guess we have been dealing with it longer than you.

 

Oh by the way....Pulsing has nothing to do with the person's body learning to

" fight " the bug!!! It has to do with the spores hatching and the med attacking

the newly hatched spores. Oral Vancomycin is NOT absorbed systemically, so the

body is not required to build up the fight...the vancomycin works locally i.e.

inside the intestine only....so it has nothing to do with using the victim's

immune system!!!!........

 

All probiotics are a potential risk for infection...but this risk is so small.

S. Boulardi is the best for the fight against Cdiff...I've been an RN for over

25 years, Sue

 

From: sievertlaura <sievertlaura@...>

Subject: Re: Fw: Sinusitis and C. Diff

Date: Friday, February 18, 2011, 7:04 PM

 

Thanks for the added input. I was reading about the pulsed vanco treatment and

thinking about asking his immunologist, but he has very low memory B cells as

well so maybe that isn't a good bet. His immuno has suggested home school or

homebound (as have we). Tate is adamently against it so far so the compromise is

if he can stay out of the hospital, for now we are sticking with school. Of

course he is missing over 50% of the time right now so I'm not sure how much

he's getting out of it. I haven't heard of probiotic VSL#3. I'd be happy to read

your info. on probiotics.

>

> Sorry my toddler send the note below before I finished!

>

> just a couple other things...

>

> - we got c.diff under control w/ high dose of IgG and a particular probiotic

(VSL#3) but jury is still out on whether or not to do this with PIDers.

> - our immuno required 90 days of vanco (no pulsing) followed by no antibiotic

(we had to isolate till gut healed).

> - we do sinus irrigation(home rinses) religiously -- whether sick or not.

>

> (See below for the first part of my note)

>

> I have references for probiotics if you need. (I wrote a book and have this as

a chapter--and did consider PID issues/risk).

>

>

> Mom to Dani, CVID+

> Gabe, 2 yrs (knows how to use my blackberry!)

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

> Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

my son has almost 100% naive lymphocytes...poor memory cells.....and the only

things that worked to finally eradicate his cdiff was the vanco pulsing and the

S Boulardi. I guess we have been dealing with it longer than you.

 

Oh by the way....Pulsing has nothing to do with the person's body learning to

" fight " the bug!!! It has to do with the spores hatching and the med attacking

the newly hatched spores. Oral Vancomycin is NOT absorbed systemically, so the

body is not required to build up the fight...the vancomycin works locally i.e.

inside the intestine only....so it has nothing to do with using the victim's

immune system!!!!........

 

All probiotics are a potential risk for infection...but this risk is so small.

S. Boulardi is the best for the fight against Cdiff...I've been an RN for over

25 years, Sue

 

From: sievertlaura <sievertlaura@...>

Subject: Re: Fw: Sinusitis and C. Diff

Date: Friday, February 18, 2011, 7:04 PM

 

Thanks for the added input. I was reading about the pulsed vanco treatment and

thinking about asking his immunologist, but he has very low memory B cells as

well so maybe that isn't a good bet. His immuno has suggested home school or

homebound (as have we). Tate is adamently against it so far so the compromise is

if he can stay out of the hospital, for now we are sticking with school. Of

course he is missing over 50% of the time right now so I'm not sure how much

he's getting out of it. I haven't heard of probiotic VSL#3. I'd be happy to read

your info. on probiotics.

>

> Sorry my toddler send the note below before I finished!

>

> just a couple other things...

>

> - we got c.diff under control w/ high dose of IgG and a particular probiotic

(VSL#3) but jury is still out on whether or not to do this with PIDers.

> - our immuno required 90 days of vanco (no pulsing) followed by no antibiotic

(we had to isolate till gut healed).

> - we do sinus irrigation(home rinses) religiously -- whether sick or not.

>

> (See below for the first part of my note)

>

> I have references for probiotics if you need. (I wrote a book and have this as

a chapter--and did consider PID issues/risk).

>

>

> Mom to Dani, CVID+

> Gabe, 2 yrs (knows how to use my blackberry!)

> Sent from my Sprint® BlackBerry

> ~~~~~~~~~~~~~~~~~~~~~~

>

> Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

Pulsing Vancomycin requires nothing of the immune system!  It works locally on

the spores and the cdiff.....does not require the body to develop antibodies, of

course not....it's not absorbed systemically.   This comes from a mom whose

child has had necrotising colitis from cdiff....I know this. sue

From: dietdoc@... <dietdoc@...>

Subject: Re: Fw: Sinusitis and C. Diff

Date: Friday, February 18, 2011, 7:41 PM

There are no studies--that I'm aware of-- of pulsing vanco w/ peds patients. And

none whatsoever with pulsing PIDers. Still, we tried and she failed the trial.

Later, we learned (from a c.dif expert) that pulsing requires the immune system

to " learn " and catch up--as it might with a healthy adult. Pulsing can help kill

the bugs when they come out of their spore form--that's the theory. (No clinical

trials have been done in Ped-PIDers.) Also, there is no guarantee you'll get

them all--the gut is complex/messy and spores love to burrow in scar tissue.

Yes, isolation or homeschooling is hard at that age. We did it early and she did

so well that we kept going. Maybe you can do a hybrid school/homebound program

till this is under control?  Ask the families here for more info, if you are

contemplating other options.

You can read about VSL#3 at pubmed. There are many solid studies on peds

patients. One author is Guandalini     

There is a book written by a pharmacist called " Bacteria for Breakfast " . Her son

almost died from c.dif complications and she did VSL. But he wasn't PID so his

immune system did kick in.

My book is, " Nutrition in Sickness and in Health " at Amazon.  (It contains

nutrition-immune related articles from when I was doing freelance writing). I

have a short chapter on probiotics -- that is conservative in approach. Still,

it may be controversial, depending on the situation/doctor.

I'm aware of a small number of GI docs that connect gut + immune issues. Hope

you are with one of them! 

(Write my name in subject line if u need to contact me...I can't read every

message).

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

Sue+--

Sue, I'm so glad pulsing + s.boulardii probiotic worked for your son.

It didn't work for my daughter.

I was told by her immuno and the lead researcher on c.diff, after the fact, that

the only way to get over it was adequate antibody response (or IVIg in our

case). He said he would have never pulse dosed her with her immune status as it

was--and put her on a 90 day course of vanco.

Every situation is different and each doctor has their own approach.

, I'm sorry I can't be more help to your son. This bug is a terror. You'll

have to weigh the options and see what doc says is best for your unique

situation. Sue's example is compelling...

Mom to Dani, CVID

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

Sue+--

Sue, I'm so glad pulsing + s.boulardii probiotic worked for your son.

It didn't work for my daughter.

I was told by her immuno and the lead researcher on c.diff, after the fact, that

the only way to get over it was adequate antibody response (or IVIg in our

case). He said he would have never pulse dosed her with her immune status as it

was--and put her on a 90 day course of vanco.

Every situation is different and each doctor has their own approach.

, I'm sorry I can't be more help to your son. This bug is a terror. You'll

have to weigh the options and see what doc says is best for your unique

situation. Sue's example is compelling...

Mom to Dani, CVID

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

Sue,

My daughter also had pseudomembrane colitis that went into her blood stream--was

septic.

Ciaran , a lead c.diff researcher told our doctors that overcoming this bug

does require a good antibody response--and warned us against pulsing a PID

child.

Again, it just depends on the child and situation. There are many factors for

the doctor to consider.

Best,

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

,

I hope that I did not discourage you from exploring any possibility with your

immuno. I would learn as much you can from clinical studies on peds and get

physician's guidance.

I'm sorry I don't have answers. I can tell you our experience. But Sue's son had

a different and better outcome.

Mom to Dani, CVID

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>

[Guest guest]

Yes ...please try different things that may work for your child....this

cdiff almost killed my son.....At this time last year, he was losing weight at

an alarming rate....he dropped almost 20lbs, had terrible bloody diarrhea, was

in pain and had fever from the cdiff.....

 

Two months of the Vancomycin, the first month was every 6 hours everyday, the

second month was pulsed...and the Boulardi...this is what saved my son and

hopefully ridded him of the cdiff for a long time, hopefully forever. It has

been a scourge for him since he was a baby.

 

Now we are battling MRSA, he has it everywhere! the worst is in his abdominal

wound, it's awful.

 

Our kids are such perfect hosts for these microscopic monsters!   Sue

From: dietdoc@... <dietdoc@...>

Subject: Re: Fw: Sinusitis and C. Diff

Date: Saturday, February 19, 2011, 4:29 AM

,

I hope that I did not discourage you from exploring any possibility with your

immuno. I would learn as much you can from clinical studies on peds and get

physician's guidance.

I'm sorry I don't have answers. I can tell you our experience. But Sue's son had

a different and better outcome.

Mom to Dani, CVID

Sent from my Sprint® BlackBerry

~~~~~~~~~~~~~~~~~~~~~~

Sinusitis and C. Diff

>

> Tate continues to get recurrent sinusitis. His Hizentra has recently been

increased again. Unfortunately, each time we treat with any antibiotic, he is

ending up with C. Diff. He cannot tolerate Flagyl again. Last time it got worse

than the C. Diff almost with its GI symptoms and was causing dizziness that

stopped when we stopped the drug. He is currently on a 21-day course of Bactim

(13 days completed), but sinuses and lymphadenopathy are not responding.

Unfortunately his gut did and today he has the typical explosive watery diarrhea

again. Has anyone dealt with this? Any suggestions are greatly appreciated. ENT

thinks maybe sinus sugery to try to avoid antibiotics. We're really frustrated

as this cycle has been in an endless loop since August. Thanks for any help in

advance!

>

>

> Tate 13-year-old CVID

>

>

>

>

>