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Not sure if this is the right thread of e-mails but I wanted to pass along that

" Bonnie Doon " Icecream makes a chocolate frozen yougart (in the icecream

section) that " contains Active Acidophilus & Bifidus Cultures " It tastes pretty

good. I am sure there are probably others on the market and in different

flavors, I just happened to pickup this one up at the grocery store and thought

I would mention.

Take care,

Terri

mom to (3-XLA)

From: kristin-smith@...

Date: Fri, 22 Apr 2011 13:26:15 +0000

Subject: Fungal Infections

Does anyone deal with difficult to treat fungal skin infections? All of my kids

have had issues with fungal infections, but we seem to be having a particularly

tough time at the moment. We have two kids on long-term oral antifungals because

they just don't seem to respond to topical treatments. I'm also finding between

our immunologist and infectious disease doc, that there really aren't many

options for treating. There seem to be only a handful of drugs and all have the

potential for serious side effects. Conner's liver numbers are still slightly

elevated due to the powerful antifungals used during transplant.

Anyway, I'm trying to find some resources for good information on the drugs and

maybe some good ways to prevent infections. I'm concerned that if they are prone

to these skin infections that it wouldn't be too difficult for some of these

infections to become systemic, which really worries me. Our docs have Conner

using Nizoral shampoo on his body a couple of times a week, but I'm starting to

think that might have made some of this stuff resistant. All four of our kids

have a severe MBL (mannose binding lectin) deficiency and we think this is

what's causing the problem. Conner's BMT didn't cure this part of the immune

system, he would have needed a new liver for that (and we aren't going there!).

Thanks in advance for any advice or commiserating :-)

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (15-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

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Guest guest

Not sure if this is the right thread of e-mails but I wanted to pass along that

" Bonnie Doon " Icecream makes a chocolate frozen yougart (in the icecream

section) that " contains Active Acidophilus & Bifidus Cultures " It tastes pretty

good. I am sure there are probably others on the market and in different

flavors, I just happened to pickup this one up at the grocery store and thought

I would mention.

Take care,

Terri

mom to (3-XLA)

From: kristin-smith@...

Date: Fri, 22 Apr 2011 13:26:15 +0000

Subject: Fungal Infections

Does anyone deal with difficult to treat fungal skin infections? All of my kids

have had issues with fungal infections, but we seem to be having a particularly

tough time at the moment. We have two kids on long-term oral antifungals because

they just don't seem to respond to topical treatments. I'm also finding between

our immunologist and infectious disease doc, that there really aren't many

options for treating. There seem to be only a handful of drugs and all have the

potential for serious side effects. Conner's liver numbers are still slightly

elevated due to the powerful antifungals used during transplant.

Anyway, I'm trying to find some resources for good information on the drugs and

maybe some good ways to prevent infections. I'm concerned that if they are prone

to these skin infections that it wouldn't be too difficult for some of these

infections to become systemic, which really worries me. Our docs have Conner

using Nizoral shampoo on his body a couple of times a week, but I'm starting to

think that might have made some of this stuff resistant. All four of our kids

have a severe MBL (mannose binding lectin) deficiency and we think this is

what's causing the problem. Conner's BMT didn't cure this part of the immune

system, he would have needed a new liver for that (and we aren't going there!).

Thanks in advance for any advice or commiserating :-)

(NEMO carrier)

Mom to Hayden (16-unknown PID)

Evan (16-unknown PID)

Conner (16-NEMO; bone marrow transplant 8/17/07)

Kelsey (15-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

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