Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

and lately she has been having episodes of UTI for the first time. She

doesnt leak as much as before though which i assumed was a good thing

but then she is now getting UTI's. She's been on & off antibiotics from

keflex to bactrim, but the bacteria comes & goes. I know this is the

nature of SB but having frequent UTI's in 2 months worries me.

How does having frequent UTI's affect kids with SB??..What

complications can occur?

Any tips on how to prevent it? how do i do a very safe &

clean catheterization? I now even clean her using mineral water before

introducing the cath..

Will the risks of getting UTI's become less as they get older?

My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots of

UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but we

have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment-have tried-works. Drink lemon

juice daily-haven't tried yet. Force fluids-lots and lots at first sign of odor,

flushes system-tried-works. Certain probiotics-haven't tried-still researching.

Hope this helps. Beth



--- On Sat, 5/30/09, tHeRes3 <tgwagas@...> wrote:





From: tHeRes3 <tgwagas@...>

Subject: [Spina Bifida Central] neurogenic bladder

To: spinabifidacentral@yahoogroups.com

Date: Saturday, May 30, 2009, 3:32 AM

















Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

and lately she has been having episodes of UTI for the first time. She

doesnt leak as much as before though which i assumed was a good thing

but then she is now getting UTI's. She's been on & off antibiotics from

keflex to bactrim, but the bacteria comes & goes. I know this is the

nature of SB but having frequent UTI's in 2 months worries me.

How does having frequent UTI's affect kids with SB??..What

complications can occur?

Any tips on how to prevent it? how do i do a very safe &

clean catheterization? I now even clean her using mineral water before

introducing the cath..

Will the risks of getting UTI's become less as they get older?









































[Non-text portions of this message have been removed]

We had to switch to sterile cathing...using iodine and everything is

sterile...and we dont use the same catheter twice. Brianah has taken macrodantin

every night since she was 1, she will be 6 in July. She is having breaktroughs

now and they are having us alternate between Keflex and Macrodantin every night.



Angel and Brianah





--- In spinabifidacentral@yahoogroups.com, "tHeRes3" <tgwagas@...> wrote:

>

> Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

> and lately she has been having episodes of UTI for the first time. She

> doesnt leak as much as before though which i assumed was a good thing

> but then she is now getting UTI's. She's been on & off antibiotics from

> keflex to bactrim, but the bacteria comes & goes. I know this is the

> nature of SB but having frequent UTI's in 2 months worries me.

> How does having frequent UTI's affect kids with SB??..What

> complications can occur?

> Any tips on how to prevent it? how do i do a very safe &

> clean catheterization? I now even clean her using mineral water before

> introducing the cath..

> Will the risks of getting UTI's become less as they get older?

>

I've been cathed/cathing every 3-4 hours since I was a baby.  I am to use a new

catheter every time with a pair of gloves, iodine, and change my undergarment. 

I admit I don't always change my undergarment when I'm out in public because it

makes cathing a little longer cuz I do it in my chair, but I change every other

time when in public.  When I was a kid I had so many UTI's I became tolerant to

all oral medications and had to start taking IM injections and IV drugs.  That

finally went away after a while thankfully.  That was like 17 years ago though

so I don't remember how.  Now when I get up in the morning I take my Ditropan

with a glass of Cranberry juice, drink at least 4 glasses of water a day, have a

bowel program of taking 1-2 Senna tablets every day which works good for the

most part, accidents are fewer.  I also have the reflux in my kidneys which

doesn't help with infections either.  I did take Macrodantin for about 10 years

but then some kind of study came out that said people who take it for longer

than 6 months have a chance of getting fibrosis in the lungs so my Urologist

took me off of it and put me on Hiprex (also called Mandelamine) as a

prophylactic.  In addition to that I have a Gentamycin/Sterile Water combo that

I do through a catheter after cathing twice a day.  I also take Imipramine which

treats the reflux in my kidneys.  I started that whole Ditropan, Hiprex,

Imipramine combo when I was 17 or 18 and since then my reflux has been under

control and is now no more than a grade 2 on bad days and I only have problems

with major infections 1 or 2 times a year.  I do get smelly cloudy urine if I'm

not having a good week with my bowel program and am backed up though.  That

usually clears up when I clean them out though.



Hope that was helpful!



Ambe K.





----- Original Message -----

From: tHeRes3

To: spinabifidacentral@yahoogroups.com

Sent: 5/29/2009 11:33:09 PM

Subject: [Spina Bifida Central] neurogenic bladder











Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

and lately she has been having episodes of UTI for the first time. She

doesnt leak as much as before though which i assumed was a good thing

but then she is now getting UTI's. She's been on & off antibiotics from

keflex to bactrim, but the bacteria comes & goes. I know this is the

nature of SB but having frequent UTI's in 2 months worries me.

How does having frequent UTI's affect kids with SB??..What

complications can occur?

Any tips on how to prevent it? how do i do a very safe &

clean catheterization? I now even clean her using mineral water before

introducing the cath..

Will the risks of getting UTI's become less as they get older?











[Non-text portions of this message have been removed]

I did take Macrodantin for about 10 years but then some kind of study

came out that said people who take it for longer than 6 months have a

chance of getting fibrosis in the lungs



All that is a POSSIABLE side effect of macrodantin, my daughter is 5 and has

been on macro since she was like 2 months old.  So its just a possiable side

effect, ALL medications have possiable side effects, just taking an asprin or

tyenoal for example has side effects. no medication is 100% side effect free not

even herbal remidies.









________________________________

From: Amber Kops <ac_kops82@...>

To: spinabifidacentral@yahoogroups.com

Sent: Saturday, May 30, 2009 2:38:26 PM

Subject: RE: [Spina Bifida Central] neurogenic bladder











I've been cathed/cathing every 3-4 hours since I was a baby.  I am to use a new

catheter every time with a pair of gloves, iodine, and change my undergarment. 

I admit I don't always change my undergarment when I'm out in public because it

makes cathing a little longer cuz I do it in my chair, but I change every other

time when in public.  When I was a kid I had so many UTI's I became tolerant to

all oral medications and had to start taking IM injections and IV drugs.  That

finally went away after a while thankfully.  That was like 17 years ago though

so I don't remember how.  Now when I get up in the morning I take my Ditropan

with a glass of Cranberry juice, drink at least 4 glasses of water a day, have a

bowel program of taking 1-2 Senna tablets every day which works good for the

most part, accidents are fewer.  I also have the reflux in my kidneys which

doesn't help with infections either.  I did take Macrodantin for about 10 years

but then some kind

  of study came out that said people who take it for longer than 6 months have a

chance of getting fibrosis in the lungs so my Urologist took me off of it and

put me on Hiprex (also called Mandelamine) as a prophylactic.  In addition to

that I have a Gentamycin/Sterile Water combo that I do through a catheter after

cathing twice a day.  I also take Imipramine which treats the reflux in my

kidneys.  I started that whole Ditropan, Hiprex, Imipramine combo when I was 17

or 18 and since then my reflux has been under control and is now no more than a

grade 2 on bad days and I only have problems with major infections 1 or 2 times

a year.  I do get smelly cloudy urine if I'm not having a good week with my

bowel program and am backed up though.  That usually clears up when I clean them

out though.



Hope that was helpful!



Ambe K.



----- Original Message -----

From: tHeRes3

To: spinabifidacentral@ yahoogroups. com

Sent: 5/29/2009 11:33:09 PM

Subject: [Spina Bifida Central] neurogenic bladder



Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

and lately she has been having episodes of UTI for the first time. She

doesnt leak as much as before though which i assumed was a good thing

but then she is now getting UTI's. She's been on & off antibiotics from

keflex to bactrim, but the bacteria comes & goes. I know this is the

nature of SB but having frequent UTI's in 2 months worries me.

How does having frequent UTI's affect kids with SB??..What

complications can occur?

Any tips on how to prevent it? how do i do a very safe &

clean catheterization? I now even clean her using mineral water before

introducing the cath..

Will the risks of getting UTI's become less as they get older?



[Non-text portions of this message have been removed]















[Non-text portions of this message have been removed]

Cathing increases the risk of UTIs.? That's just one of the risks,

unfortunately.

Are you re-using catheters, or just using them once?? Re-using increases the

risk of UTIs.? Believe me, I know cateters are expensive!? So some people try to

re-use, but there is risk on infection?involved.



Frequent UTIs over many years can cause kidney damage, so kids just need to be

monitored for kidney health.



?I used?to have regular IVPs (kidney studies).? I'm not sure what the current

practice is.

Newer parents pobably have current info on kidney health monitoring.



I wish you well!

-Heather

44 yr. old mom with myelomeningocele & shunted hydro





[Non-text portions of this message have been removed]

My now 5 yer old gets a VCUG done every yer to see how her kidneys are doin, we

have NEVER re-used caths.  and there is a new law for medicaid and such to help

cover so you can get a fresh cath everytime, call Liberator they have

commericals on and see what they can do









________________________________

From: "hcmerrell@..." <hcmerrell@...>

To: spinabifidacentral@yahoogroups.com

Sent: Saturday, May 30, 2009 6:42:23 PM

Subject: [Spina Bifida Central] Re:neurogenic bladder











Cathing increases the risk of UTIs.? That's just one of the risks,

unfortunately.

Are you re-using catheters, or just using them once?? Re-using increases the

risk of UTIs.? Believe me, I know cateters are expensive!? So some people try to

re-use, but there is risk on infection?involved.



Frequent UTIs over many years can cause kidney damage, so kids just need to be

monitored for kidney health.



?I used?to have regular IVPs (kidney studies).? I'm not sure what the current

practice is.

Newer parents pobably have current info on kidney health monitoring.



I wish you well!

-Heather

44 yr. old mom with myelomeningocele & shunted hydro



[Non-text portions of this message have been removed]















[Non-text portions of this message have been removed]

My daughter is almost 6 and gets a urodynamics study, VUCG, every year and this

year she also got a Neucular Medicine test.





--- In spinabifidacentral@yahoogroups.com, Naomi TeStroote <tinymamabear@...>

wrote:

>

> My now 5 yer old gets a VCUG done every yer to see how her kidneys are doin,

we have NEVER re-used caths.  and there is a new law for medicaid and such to

help cover so you can get a fresh cath everytime, call Liberator they have

commericals on and see what they can do

>

>

>

>

> ________________________________

> From: "hcmerrell@..." <hcmerrell@...>

> To: spinabifidacentral@yahoogroups.com

> Sent: Saturday, May 30, 2009 6:42:23 PM

> Subject: [Spina Bifida Central] Re:neurogenic bladder

>

>

>

>

>

> Cathing increases the risk of UTIs.? That's just one of the risks,

unfortunately.

> Are you re-using catheters, or just using them once?? Re-using increases the

risk of UTIs.? Believe me, I know cateters are expensive!? So some people try to

re-use, but there is risk on infection?involved.

>

> Frequent UTIs over many years can cause kidney damage, so kids just need to be

monitored for kidney health.

>

> ?I used?to have regular IVPs (kidney studies).? I'm not sure what the current

practice is.

> Newer parents pobably have current info on kidney health monitoring.

>

> I wish you well!

> -Heather

> 44 yr. old mom with myelomeningocele & shunted hydro

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

My daughter had a UTI last week (her third in as many months).  We started her

on D-Mannose.  It is a natural sugar derived from the cranberry.  It is

completely safe and has no side effects.  It does not change the body's PH

levels and since very little is absorbed by the body it is safe for diabetics. 

It works by making the bladder incompatible for e-coli bacteria.  This only

works for a UTI caused by e-coli (but for people with SB, most are). It can be

used to treat an existing UTI or on a daily basis to prevent them.  I bought it

at the health food store but you can also order it online.  BTW, I asked my

daughter's pediatrician about it and she told us to "Go for it, if it works

great!  We have nothing to lose"











--- In spinabifidacentral@yahoogroups.com, "tHeRes3" <tgwagas@...> wrote:

>

> Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

> and lately she has been having episodes of UTI for the first time. She

> doesnt leak as much as before though which i assumed was a good thing

> but then she is now getting UTI's. She's been on & off antibiotics from

> keflex to bactrim, but the bacteria comes & goes. I know this is the

> nature of SB but having frequent UTI's in 2 months worries me.

> How does having frequent UTI's affect kids with SB??..What

> complications can occur?

> Any tips on how to prevent it? how do i do a very safe &

> clean catheterization? I now even clean her using mineral water before

> introducing the cath..

> Will the risks of getting UTI's become less as they get older?

>

Thanks so much everyone. I cant wait to ask her doctor about D-Mannose.





Therese









--- In spinabifidacentral@yahoogroups.com, "usolyfan2" <usolyfan@...> wrote:

>

> My daughter had a UTI last week (her third in as many months).  We started her

on D-Mannose.  It is a natural sugar derived from the cranberry.  It is

completely safe and has no side effects.  It does not change the body's PH

levels and since very little is absorbed by the body it is safe for diabetics. 

It works by making the bladder incompatible for e-coli bacteria.  This only

works for a UTI caused by e-coli (but for people with SB, most are). It can be

used to treat an existing UTI or on a daily basis to prevent them.  I bought it

at the health food store but you can also order it online.  BTW, I asked my

daughter's pediatrician about it and she told us to "Go for it, if it works

great!  We have nothing to lose"

>

>

>

>

>

> --- In spinabifidacentral@yahoogroups.com, "tHeRes3" <tgwagas@> wrote:

> >

> > Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

> > and lately she has been having episodes of UTI for the first time. She

> > doesnt leak as much as before though which i assumed was a good thing

> > but then she is now getting UTI's. She's been on & off antibiotics from

> > keflex to bactrim, but the bacteria comes & goes. I know this is the

> > nature of SB but having frequent UTI's in 2 months worries me.

> > How does having frequent UTI's affect kids with SB??..What

> > complications can occur?

> > Any tips on how to prevent it? how do i do a very safe &

> > clean catheterization? I now even clean her using mineral water before

> > introducing the cath..

> > Will the risks of getting UTI's become less as they get older?

> >

>

--- In spinabifidacentral@yahoogroups.com, "tHeRes3" <tgwagas@...> wrote:

>

> Thanks so much everyone. I cant wait to ask her doctor about D-Mannose.

>

>

> Therese

>

>

>

>

> --- In spinabifidacentral@yahoogroups.com, "usolyfan2" <usolyfan@> wrote:

> >

> > My daughter had a UTI last week (her third in as many months).  We started

her on D-Mannose.  It is a natural sugar derived from the cranberry.  It is

completely safe and has no side effects.  It does not change the body's PH

levels and since very little is absorbed by the body it is safe for diabetics. 

It works by making the bladder incompatible for e-coli bacteria.  This only

works for a UTI caused by e-coli (but for people with SB, most are). It can be

used to treat an existing UTI or on a daily basis to prevent them.  I bought it

at the health food store but you can also order it online.  BTW, I asked my

daughter's pediatrician about it and she told us to "Go for it, if it works

great!  We have nothing to lose"

> >

> >

> >

> >

> >

> > --- In spinabifidacentral@yahoogroups.com, "tHeRes3" <tgwagas@> wrote:

> > >

> > > Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

> > > and lately she has been having episodes of UTI for the first time. She

> > > doesnt leak as much as before though which i assumed was a good thing

> > > but then she is now getting UTI's. She's been on & off antibiotics from

> > > keflex to bactrim, but the bacteria comes & goes. I know this is the

> > > nature of SB but having frequent UTI's in 2 months worries me.

> > > How does having frequent UTI's affect kids with SB??..What

> > > complications can occur?

> > > Any tips on how to prevent it? how do i do a very safe &

> > > clean catheterization? I now even clean her using mineral water before

> > > introducing the cath..

> > > Will the risks of getting UTI's become less as they get older?

> > >

> >

>hi EVERYONE I HAVE SB AND CRANBERRY REALLY HELP ME ALOT. I HAVE BEEEN  USING

CRANBERRY IN TABLET AND THE JUICE SENSE I WAS 7 YRS. OLD. NOW I AM 40!!!! JUST

HAD A B-DAY MAY 22,2009.

Hi

when you say change your under garment do you mean a pad that you are wearing? 

I am just trying to figure out if that might work for me.  I am just getting

back in to staying dry inbetween cathing after dethering surgery.  I have been

having infections and wonder if changing my under garment might work.  That is

why I am claraifying if that means a pad or some incontence product.

thanks jackie

   ----- Original Message -----

   From: Amber Kops

   To: spinabifidacentral@yahoogroups.com

   Sent: Saturday, May 30, 2009 4:38 PM

   Subject: RE: [Spina Bifida Central] neurogenic bladder











   I've been cathed/cathing every 3-4 hours since I was a baby. I am to use a new

catheter every time with a pair of gloves, iodine, and change my undergarment. I

admit I don't always change my undergarment when I'm out in public because it

makes cathing a little longer cuz I do it in my chair, but I change every other

time when in public. When I was a kid I had so many UTI's I became tolerant to

all oral medications and had to start taking IM injections and IV drugs. That

finally went away after a while thankfully. That was like 17 years ago though so

I don't remember how. Now when I get up in the morning I take my Ditropan with a

glass of Cranberry juice, drink at least 4 glasses of water a day, have a bowel

program of taking 1-2 Senna tablets every day which works good for the most

part, accidents are fewer. I also have the reflux in my kidneys which doesn't

help with infections either. I did take Macrodantin for about 10 years but then

some kind of study came out that said people who take it for longer than 6

months have a chance of getting fibrosis in the lungs so my Urologist took me

off of it and put me on Hiprex (also called Mandelamine) as a prophylactic. In

addition to that I have a Gentamycin/Sterile Water combo that I do through a

catheter after cathing twice a day. I also take Imipramine which treats the

reflux in my kidneys. I started that whole Ditropan, Hiprex, Imipramine combo

when I was 17 or 18 and since then my reflux has been under control and is now

no more than a grade 2 on bad days and I only have problems with major

infections 1 or 2 times a year. I do get smelly cloudy urine if I'm not having a

good week with my bowel program and am backed up though. That usually clears up

when I clean them out though.



   Hope that was helpful!



   Ambe K.



   ----- Original Message -----

   From: tHeRes3

   To: spinabifidacentral@yahoogroups.com

   Sent: 5/29/2009 11:33:09 PM

   Subject: [Spina Bifida Central] neurogenic bladder



   Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

   and lately she has been having episodes of UTI for the first time. She

   doesnt leak as much as before though which i assumed was a good thing

   but then she is now getting UTI's. She's been on & off antibiotics from

   keflex to bactrim, but the bacteria comes & goes. I know this is the

   nature of SB but having frequent UTI's in 2 months worries me.

   How does having frequent UTI's affect kids with SB??..What

   complications can occur?

   Any tips on how to prevent it? how do i do a very safe &

   clean catheterization? I now even clean her using mineral water before

   introducing the cath..

   Will the risks of getting UTI's become less as they get older?



   [Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

would it work for adults or just children?

take care jackie

   ----- Original Message -----

   From: usolyfan2

   To: spinabifidacentral@yahoogroups.com

   Sent: Sunday, May 31, 2009 10:49 AM

   Subject: [Spina Bifida Central] Re: neurogenic bladder











   My daughter had a UTI last week (her third in as many months). We started her

on D-Mannose. It is a natural sugar derived from the cranberry. It is completely

safe and has no side effects. It does not change the body's PH levels and since

very little is absorbed by the body it is safe for diabetics. It works by making

the bladder incompatible for e-coli bacteria. This only works for a UTI caused

by e-coli (but for people with SB, most are). It can be used to treat an

existing UTI or on a dail y basis to prevent them. I bought it at the health

food store but you can also order it online. BTW, I asked my daughter's

pediatrician about it and she told us to "Go for it, if it works great! We have

nothing to lose"



   --- In spinabifidacentral@yahoogroups.com, "tHeRes3" <tgwagas@...> wrote:

   >

   > Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

   > and lately she has been having episodes of UTI for the first time. She

   > doesnt leak as much as before though which i assumed was a good thing

   > but then she is now getting UTI's. She's been on & off antibiotics from

   > keflex to bactrim, but the bacteria comes & goes. I know this is the

   > nature of SB but having frequent UTI's in 2 months worries me.

   > How does having frequent UTI's affect kids with SB??..What

   > complications can occur?

   > Any tips on how to prevent it? how do i do a very safe &

   > clean catheterization? I now even clean her using mineral water before

   > introducing the cath..

   > Will the risks of getting UTI's become less as they get older?

   >











[Non-text portions of this message have been removed]

Yes, it works for adults too.  The recommended dose for an adult is one

teaspoon.



--- In spinabifidacentral@yahoogroups.com, "Jackie" <jpentland1@...> wrote:

>

> would it work for adults or just children?

> take care jackie

>   ----- Original Message -----

>   From: usolyfan2

>   To: spinabifidacentral@yahoogroups.com

>   Sent: Sunday, May 31, 2009 10:49 AM

>   Subject: [Spina Bifida Central] Re: neurogenic bladder

>

>

>

>

>

>   My daughter had a UTI last week (her third in as many months). We started

her on D-Mannose. It is a natural sugar derived from the cranberry. It is

completely safe and has no side effects. It does not change the body's PH levels

and since very little is absorbed by the body it is safe for diabetics. It works

by making the bladder incompatible for e-coli bacteria. This only works for a

UTI caused by e-coli (but for people with SB, most are). It can be used to treat

an existing UTI or on a dail y basis to prevent them. I bought it at the health

food store but you can also order it online. BTW, I asked my daughter's

pediatrician about it and she told us to "Go for it, if it works great! We have

nothing to lose"

>

>   --- In spinabifidacentral@yahoogroups.com, "tHeRes3" <tgwagas@> wrote:

>   >

>   > Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

>   > and lately she has been having episodes of UTI for the first time. She

>   > doesnt leak as much as before though which i assumed was a good thing

>   > but then she is now getting UTI's. She's been on & off antibiotics from

>   > keflex to bactrim, but the bacteria comes & goes. I know this is the

>   > nature of SB but having frequent UTI's in 2 months worries me.

>   > How does having frequent UTI's affect kids with SB??..What

>   > complications can occur?

>   > Any tips on how to prevent it? how do i do a very safe &

>   > clean catheterization? I now even clean her using mineral water before

>   > introducing the cath..

>   > Will the risks of getting UTI's become less as they get older?

>   >

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

________________________________

From: Jackie <jpentland1@...>

To: spinabifidacentral@yahoogroups.com

Sent: Friday, June 5, 2009 2:34:34 PM

Subject: Re: [Spina Bifida Central] Re: neurogenic bladder

yes it will for both adults and children.there is also cranberry tablets. but

please the cranberry juice first sense your daughter is so young. Please let

know how it work. GO Bless!!!!!!!!!!!!!!!!









would it work for adults or just children?

take care jackie

----- Original Message -----

From: usolyfan2

To: spinabifidacentral@ yahoogroups. com

Sent: Sunday, May 31, 2009 10:49 AM

Subject: [Spina Bifida Central] Re: neurogenic bladder



My daughter had a UTI last week (her third in as many months). We started her on

D-Mannose. It is a natural sugar derived from the cranberry. It is completely

safe and has no side effects. It does not change the body's PH levels and since

very little is absorbed by the body it is safe for diabetics. It works by making

the bladder incompatible for e-coli bacteria. This only works for a UTI caused

by e-coli (but for people with SB, most are). It can be used to treat an

existing UTI or on a dail y basis to prevent them. I bought it at the health

food store but you can also order it online. BTW, I asked my daughter's

pediatrician about it and she told us to "Go for it, if it works great! We have

nothing to lose"



--- In spinabifidacentral@ yahoogroups. com, "tHeRes3" <tgwagas@... > wrote:

>

> Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

> and lately she has been having episodes of UTI for the first time. She

> doesnt leak as much as before though which i assumed was a good thing

> but then she is now getting UTI's. She's been on & off antibiotics from

> keflex to bactrim, but the bacteria comes & goes. I know this is the

> nature of SB but having frequent UTI's in 2 months worries me.

> How does having frequent UTI's affect kids with SB??..What

> complications can occur?

> Any tips on how to prevent it? how do i do a very safe &

> clean catheterization? I now even clean her using mineral water before

> introducing the cath..

> Will the risks of getting UTI's become less as they get older?

>



[Non-text portions of this message have been removed]















[Non-text portions of this message have been removed]

Hello everyone,

I read all posts but post only when necessary.Just wanted to add my experience

with my son's UTIs history. He too got frequent UTIs upto the age of 5.Then he

got severe 'hydronephronsis' of both his kidneys and had to be

hospitalised.There they introduced me to continuous catheterisation at night -

meaning  every night a fresh catheter was attached to a urine bag and the mouth

of his penis was taped with the catheter. For around 10 dyas a lot of pus was

flushed out (of course there were IVFs too being given.When the fever etc went

away and he was finally discharged,one of the docs told me to wash the reusable

catheters and dry them in a cotton 'catheter-holder' before reusing them.Always

use a dry one is what she told me.Now apart from following this, I also have

continued to do the continuous overnight catheterisation,along with a huge water

intake throughout the day which I moniter personally.

  Touchwood,he's never had anymore of those e.coli infections since then. He has

also got a better skin palor now and he is 9 years old now!! Praise be to God!!

Thankyou all,

Mrs Jacqueline Victor

www.geocities.com/theworldofvineet

Hi Jackie,



I actually wear an attends brief.  I have tried wearing a pad with underwear and

had some bowel accidents, thankfully all at home and so I've just stuck with the

attends.  I typically change it with every cath to try to keep any bacteria from

breeding.  What I would suggest to you is gauge how much you've been typically

leaking and see if a pad will work for you or if you need more protection.  Good

luck!



Amber K.





----- Original Message -----

From: Jackie

To: spinabifidacentral@yahoogroups.com

Sent: 6/5/2009 8:51:05 AM

Subject: Re: [Spina Bifida Central] neurogenic bladder











Hi

when you say change your under garment do you mean a pad that you are wearing? I

am just trying to figure out if that might work for me. I am just getting back

in to staying dry inbetween cathing after dethering surgery. I have been having

infections and wonder if changing my under garment might work. That is why I am

claraifying if that means a pad or some incontence product.

thanks jackie

----- Original Message -----

From: Amber Kops

To: spinabifidacentral@yahoogroups.com

Sent: Saturday, May 30, 2009 4:38 PM

Subject: RE: [Spina Bifida Central] neurogenic bladder



I've been cathed/cathing every 3-4 hours since I was a baby. I am to use a new

catheter every time with a pair of gloves, iodine, and change my undergarment. I

admit I don't always change my undergarment when I'm out in public because it

makes cathing a little longer cuz I do it in my chair, but I change every other

time when in public. When I was a kid I had so many UTI's I became tolerant to

all oral medications and had to start taking IM injections and IV drugs. That

finally went away after a while thankfully. That was like 17 years ago though so

I don't remember how. Now when I get up in the morning I take my Ditropan with a

glass of Cranberry juice, drink at least 4 glasses of water a day, have a bowel

program of taking 1-2 Senna tablets every day which works good for the most

part, accidents are fewer. I also have the reflux in my kidneys which doesn't

help with infections either. I did take Macrodantin for about 10 years but then

some kind of study came out that said people who take it for longer than 6

months have a chance of getting fibrosis in the lungs so my Urologist took me

off of it and put me on Hiprex (also called Mandelamine) as a prophylactic. In

addition to that I have a Gentamycin/Sterile Water combo that I do through a

catheter after cathing twice a day. I also take Imipramine which treats the

reflux in my kidneys. I started that whole Ditropan, Hiprex, Imipramine combo

when I was 17 or 18 and since then my reflux has been under control and is now

no more than a grade 2 on bad days and I only have problems with major

infections 1 or 2 times a year. I do get smelly cloudy urine if I'm not having a

good week with my bowel program and am backed up though. That usually clears up

when I clean them out though.



Hope that was helpful!



Ambe K.



----- Original Message -----

From: tHeRes3

To: spinabifidacentral@yahoogroups.com

Sent: 5/29/2009 11:33:09 PM

Subject: [Spina Bifida Central] neurogenic bladder



Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

and lately she has been having episodes of UTI for the first time. She

doesnt leak as much as before though which i assumed was a good thing

but then she is now getting UTI's. She's been on & off antibiotics from

keflex to bactrim, but the bacteria comes & goes. I know this is the

nature of SB but having frequent UTI's in 2 months worries me.

How does having frequent UTI's affect kids with SB??..What

complications can occur?

Any tips on how to prevent it? how do i do a very safe &

clean catheterization? I now even clean her using mineral water before

introducing the cath..

Will the risks of getting UTI's become less as they get older?



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]









[Non-text portions of this message have been removed]

Hi when you mean drink lemon juice daily do you mean mixed with water or plain

lemon juice?  Another question about the lemon juice how many times a day?

thanks jackie

   ----- Original Message -----

   From: Elizabeth Tiedemann

   To: spinabifidacentral@yahoogroups.com

   Sent: Saturday, May 30, 2009 9:51 AM

   Subject: Re: [Spina Bifida Central] neurogenic bladder











   My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots

of UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but

we have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment-have tried-works. Drink lemon

juice daily-haven't tried yet. Force fluids-lots and lots at first sign of odor,

flushes system-tried-works. Certain probiotics-haven't tried-still researching.

Hope this helps. Beth



   --- On Sat, 5/30/09, tHeRes3 <tgwagas@...> wrote:



   From: tHeRes3 <tgwagas@...>

   Subject: [Spina Bifida Central] neurogenic bladder

   To: spinabifidacentral@yahoogroups.com

   Date: Saturday, May 30, 2009, 3:32 AM



   Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

   and lately she has been having episodes of UTI for the first time. She

   doesnt leak as much as before though which i assumed was a good thing

   but then she is now getting UTI's. She's been on & off antibiotics from

   keflex to bactrim, but the bacteria comes & goes. I know this is the

   nature of SB but having frequent UTI's in 2 months worries me.

   How does having frequent UTI's affect kids with SB??..What

   complications can occur?

   Any tips on how to prevent it? how do i do a very safe &

   clean catheterization? I now even clean her using mineral water before

   introducing the cath..

   Will the risks of getting UTI's become less as they get older?



   [Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Her dr. said to buy the concetrated lemon juice and "mix like lemonade."  I time

per day. This must change the ph somehow?



--- On Tue, 6/9/09, Jackie <jpentland1@...> wrote:





From: Jackie <jpentland1@...>

Subject: Re: [Spina Bifida Central] neurogenic bladder

To: spinabifidacentral@yahoogroups.com

Date: Tuesday, June 9, 2009, 10:15 PM

















Hi when you mean drink lemon juice daily do you mean mixed with water or plain

lemon juice? Another question about the lemon juice how many times a day?

thanks jackie

----- Original Message -----

From: Elizabeth Tiedemann

To: spinabifidacentral@ yahoogroups. com

Sent: Saturday, May 30, 2009 9:51 AM

Subject: Re: [Spina Bifida Central] neurogenic bladder



My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots of

UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but we

have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment- have tried-works. Drink lemon

juice daily-haven' t tried yet. Force fluids-lots and lots at first sign of

odor, flushes system-tried- works. Certain probiotics-haven' t tried-still

researching. Hope this helps. Beth



--- On Sat, 5/30/09, tHeRes3 <tgwagas@yahoo. com> wrote:



From: tHeRes3 <tgwagas@yahoo. com>

Subject: [Spina Bifida Central] neurogenic bladder

To: spinabifidacentral@ yahoogroups. com

Date: Saturday, May 30, 2009, 3:32 AM



Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

and lately she has been having episodes of UTI for the first time. She

doesnt leak as much as before though which i assumed was a good thing

but then she is now getting UTI's. She's been on & off antibiotics from

keflex to bactrim, but the bacteria comes & goes. I know this is the

nature of SB but having frequent UTI's in 2 months worries me.

How does having frequent UTI's affect kids with SB??..What

complications can occur?

Any tips on how to prevent it? how do i do a very safe &

clean catheterization? I now even clean her using mineral water before

introducing the cath..

Will the risks of getting UTI's become less as they get older?



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]







































[Non-text portions of this message have been removed]

I've been a great believer in the use of citric acid (juices in all citric

fruits) for many years, in my case, it reduces the chances of severe infection

by about 50 to 75%. I still get the occasional UTI, but, nothing as bad as I

used to get. My pre and post infection Candida/Thrush levels are reduced

remarkably!



I've not been hospitalised (I used to have to go into hospital about 3 times a

year for Ceftazidime, a drug administered via drip feed) for a UTI in about 18

months, since I started to add a few drops of fairly concentrated lemon or lime

juice (the type you'd find in a bottle in the cake making section of your

store), to a 1 part in 5 diluted water and 'citric' (lemon, lime, orange,

grapefruit etc) squash. I also back this up with a cranberry capsule every day.



It's unfortunate that kids are unlikely to enjoy the bitter taste of most citrus

fruits, maybe with the exception of fresh oranges or a reasonable quality orange

squash 50% fruits or concentrate), as we know it in the UK.



Sorry for the overuse of brackets, I tend to write, as I think, rather

abstractly, so, it's easier for me to work in this manner.



wishing everyone well and continued good health

John



--- In spinabifidacentral@yahoogroups.com, Elizabeth Tiedemann <e.tiedemann@...>

wrote:

>

> Her dr. said to buy the concetrated lemon juice and "mix like lemonade."  I

time per day. This must change the ph somehow?

>

> --- On Tue, 6/9/09, Jackie <jpentland1@...> wrote:

>

>

> From: Jackie <jpentland1@...>

> Subject: Re: [Spina Bifida Central] neurogenic bladder

> To: spinabifidacentral@yahoogroups.com

> Date: Tuesday, June 9, 2009, 10:15 PM

>

>

>

>

>

>

>

>

> Hi when you mean drink lemon juice daily do you mean mixed with water or plain

lemon juice? Another question about the lemon juice how many times a day?

> thanks jackie

> ----- Original Message -----

> From: Elizabeth Tiedemann

> To: spinabifidacentral@ yahoogroups. com

> Sent: Saturday, May 30, 2009 9:51 AM

> Subject: Re: [Spina Bifida Central] neurogenic bladder

>

> My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots

of UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but

we have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment- have tried-works. Drink lemon

juice daily-haven' t tried yet. Force fluids-lots and lots at first sign of

odor, flushes system-tried- works. Certain probiotics-haven' t tried-still

researching. Hope this helps. Beth

>

> --- On Sat, 5/30/09, tHeRes3 <tgwagas@yahoo. com> wrote:

>

> From: tHeRes3 <tgwagas@yahoo. com>

> Subject: [Spina Bifida Central] neurogenic bladder

> To: spinabifidacentral@ yahoogroups. com

> Date: Saturday, May 30, 2009, 3:32 AM

>

> Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

> and lately she has been having episodes of UTI for the first time. She

> doesnt leak as much as before though which i assumed was a good thing

> but then she is now getting UTI's. She's been on & off antibiotics from

> keflex to bactrim, but the bacteria comes & goes. I know this is the

> nature of SB but having frequent UTI's in 2 months worries me.

> How does having frequent UTI's affect kids with SB??..What

> complications can occur?

> Any tips on how to prevent it? how do i do a very safe &

> clean catheterization? I now even clean her using mineral water before

> introducing the cath..

> Will the risks of getting UTI's become less as they get older?

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

thank you all so much for this imput. My grangirl (16 mths) has had more trouble

this year with uti's. I recently found some gov't reasearch studies as to

pro-biotic use rather than continuos antiboitics. I've found chewable probiotics

for this treatment as well.

anyone else have more info....? would love to hear feedback.





--- On Wed, 6/10/09, John <wheelzuk@...> wrote:





From: John <wheelzuk@...>

Subject: [Spina Bifida Central] Re: neurogenic bladder

To: spinabifidacentral@yahoogroups.com

Date: Wednesday, June 10, 2009, 2:42 PM

















I've been a great believer in the use of citric acid (juices in all citric

fruits) for many years, in my case, it reduces the chances of severe infection

by about 50 to 75%. I still get the occasional UTI, but, nothing as bad as I

used to get. My pre and post infection Candida/Thrush levels are reduced

remarkably!



I've not been hospitalised (I used to have to go into hospital about 3 times a

year for Ceftazidime, a drug administered via drip feed) for a UTI in about 18

months, since I started to add a few drops of fairly concentrated lemon or lime

juice (the type you'd find in a bottle in the cake making section of your

store), to a 1 part in 5 diluted water and 'citric' (lemon, lime, orange,

grapefruit etc) squash. I also back this up with a cranberry capsule every day.



It's unfortunate that kids are unlikely to enjoy the bitter taste of most citrus

fruits, maybe with the exception of fresh oranges or a reasonable quality orange

squash 50% fruits or concentrate) , as we know it in the UK.



Sorry for the overuse of brackets, I tend to write, as I think, rather

abstractly, so, it's easier for me to work in this manner.



wishing everyone well and continued good health

John



--- In spinabifidacentral@ yahoogroups. com, Elizabeth Tiedemann <e.tiedemann@

...> wrote:

>

> Her dr. said to buy the concetrated lemon juice and "mix like lemonade."  I

time per day. This must change the ph somehow?

>

> --- On Tue, 6/9/09, Jackie <jpentland1@ ...> wrote:

>

>

> From: Jackie <jpentland1@ ...>

> Subject: Re: [Spina Bifida Central] neurogenic bladder

> To: spinabifidacentral@ yahoogroups. com

> Date: Tuesday, June 9, 2009, 10:15 PM

>

>

>

>

>

>

>

>

> Hi when you mean drink lemon juice daily do you mean mixed with water or plain

lemon juice? Another question about the lemon juice how many times a day?

> thanks jackie

> ----- Original Message -----

> From: Elizabeth Tiedemann

> To: spinabifidacentral@ yahoogroups. com

> Sent: Saturday, May 30, 2009 9:51 AM

> Subject: Re: [Spina Bifida Central] neurogenic bladder

>

> My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots

of UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but

we have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment- have tried-works. Drink lemon

juice daily-haven' t tried yet. Force fluids-lots and lots at first sign of

odor, flushes system-tried- works. Certain probiotics-haven' t tried-still

researching. Hope this helps. Beth

>

> --- On Sat, 5/30/09, tHeRes3 <tgwagas@yahoo. com> wrote:

>

> From: tHeRes3 <tgwagas@yahoo. com>

> Subject: [Spina Bifida Central] neurogenic bladder

> To: spinabifidacentral@ yahoogroups. com

> Date: Saturday, May 30, 2009, 3:32 AM

>

> Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

> and lately she has been having episodes of UTI for the first time. She

> doesnt leak as much as before though which i assumed was a good thing

> but then she is now getting UTI's. She's been on & off antibiotics from

> keflex to bactrim, but the bacteria comes & goes. I know this is the

> nature of SB but having frequent UTI's in 2 months worries me.

> How does having frequent UTI's affect kids with SB??..What

> complications can occur?

> Any tips on how to prevent it? how do i do a very safe &

> clean catheterization? I now even clean her using mineral water before

> introducing the cath..

> Will the risks of getting UTI's become less as they get older?

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>







































[Non-text portions of this message have been removed]

Hi Kelley & everyone,



My daughter and I just came from her urologist today. I finally got

an appointment to see him. Anyway He still suggested to continue

taking antibiotic one tsp a day sadly. But on top of that he also

suggested "YO-PLUS Probiotic Yogurt with Fiber" for UTIs as well as

bowel issues. Also I asked him about "D-MANNOSE" and he said this

could also work!





Therese









--- In spinabifidacentral@yahoogroups.com, Kelley Dillon <dkelleygirl@...>

wrote:

>

> thank you all so much for this imput. My grangirl (16 mths) has had more

trouble this year with uti's. I recently found some gov't reasearch studies as

to pro-biotic use rather than continuos antiboitics. I've found chewable

probiotics for this treatment as well.

> anyone else have more info....? would love to hear feedback.

>

>

> --- On Wed, 6/10/09, John <wheelzuk@...> wrote:

>

>

> From: John <wheelzuk@...>

> Subject: [Spina Bifida Central] Re: neurogenic bladder

> To: spinabifidacentral@yahoogroups.com

> Date: Wednesday, June 10, 2009, 2:42 PM

>

>

>

>

>

>

>

>

> I've been a great believer in the use of citric acid (juices in all citric

fruits) for many years, in my case, it reduces the chances of severe infection

by about 50 to 75%. I still get the occasional UTI, but, nothing as bad as I

used to get. My pre and post infection Candida/Thrush levels are reduced

remarkably!

>

> I've not been hospitalised (I used to have to go into hospital about 3 times a

year for Ceftazidime, a drug administered via drip feed) for a UTI in about 18

months, since I started to add a few drops of fairly concentrated lemon or lime

juice (the type you'd find in a bottle in the cake making section of your

store), to a 1 part in 5 diluted water and 'citric' (lemon, lime, orange,

grapefruit etc) squash. I also back this up with a cranberry capsule every day.

>

> It's unfortunate that kids are unlikely to enjoy the bitter taste of most

citrus fruits, maybe with the exception of fresh oranges or a reasonable quality

orange squash 50% fruits or concentrate) , as we know it in the UK.

>

> Sorry for the overuse of brackets, I tend to write, as I think, rather

abstractly, so, it's easier for me to work in this manner.

>

> wishing everyone well and continued good health

> John

>

> --- In spinabifidacentral@ yahoogroups. com, Elizabeth Tiedemann <e.tiedemann@

...> wrote:

> >

> > Her dr. said to buy the concetrated lemon juice and "mix like lemonade."  I

time per day. This must change the ph somehow?

> >

> > --- On Tue, 6/9/09, Jackie <jpentland1@ ...> wrote:

> >

> >

> > From: Jackie <jpentland1@ ...>

> > Subject: Re: [Spina Bifida Central] neurogenic bladder

> > To: spinabifidacentral@ yahoogroups. com

> > Date: Tuesday, June 9, 2009, 10:15 PM

> >

> >

> >

> >

> >

> >

> >

> >

> > Hi when you mean drink lemon juice daily do you mean mixed with water or

plain lemon juice? Another question about the lemon juice how many times a day?

> > thanks jackie

> > ----- Original Message -----

> > From: Elizabeth Tiedemann

> > To: spinabifidacentral@ yahoogroups. com

> > Sent: Saturday, May 30, 2009 9:51 AM

> > Subject: Re: [Spina Bifida Central] neurogenic bladder

> >

> > My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had

lots of UTI's, mostly e.coli. I have talked to dr. about prophalactic

antibiotics but we have to think about resistance to antibiotics. Here are other

"none medicine" things suggested by her pediatrician and urologist. Bathe in

white vinegar-it changes the PH and creates a hostile environment- have

tried-works. Drink lemon juice daily-haven' t tried yet. Force fluids-lots and

lots at first sign of odor, flushes system-tried- works. Certain

probiotics-haven' t tried-still researching. Hope this helps. Beth

> >

> > --- On Sat, 5/30/09, tHeRes3 <tgwagas@yahoo. com> wrote:

> >

> > From: tHeRes3 <tgwagas@yahoo. com>

> > Subject: [Spina Bifida Central] neurogenic bladder

> > To: spinabifidacentral@ yahoogroups. com

> > Date: Saturday, May 30, 2009, 3:32 AM

> >

> > Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

> > and lately she has been having episodes of UTI for the first time. She

> > doesnt leak as much as before though which i assumed was a good thing

> > but then she is now getting UTI's. She's been on & off antibiotics from

> > keflex to bactrim, but the bacteria comes & goes. I know this is the

> > nature of SB but having frequent UTI's in 2 months worries me.

> > How does having frequent UTI's affect kids with SB??..What

> > complications can occur?

> > Any tips on how to prevent it? how do i do a very safe &

> > clean catheterization? I now even clean her using mineral water before

> > introducing the cath..

> > Will the risks of getting UTI's become less as they get older?

> >

> > [Non-text portions of this message have been removed]

> >

> > [Non-text portions of this message have been removed]

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been removed]

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

Hi when you say drink lemon juice does this mean plain?  Or can you put the

lemon juice in water and it would work the same?

thanks jackie

   ----- Original Message -----

   From: Elizabeth Tiedemann

   To: spinabifidacentral@yahoogroups.com

   Sent: Saturday, May 30, 2009 9:51 AM

   Subject: Re: [Spina Bifida Central] neurogenic bladder











   My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots

of UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but

we have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment-have tried-works. Drink lemon

juice daily-haven't tried yet. Force fluids-lots and lots at first sign of odor,

flushes system-tried-works. Certain probiotics-haven't tried-still researching.

Hope this helps. Beth



   --- On Sat, 5/30/09, tHeRes3 <tgwagas@...> wrote:



   From: tHeRes3 <tgwagas@...>

   Subject: [Spina Bifida Central] neurogenic bladder

   To: spinabifidacentral@yahoogroups.com

   Date: Saturday, May 30, 2009, 3:32 AM



   Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

   and lately she has been having episodes of UTI for the first time. She

   doesnt leak as much as before though which i assumed was a good thing

   but then she is now getting UTI's. She's been on & off antibiotics from

   keflex to bactrim, but the bacteria comes & goes. I know this is the

   nature of SB but having frequent UTI's in 2 months worries me.

   How does having frequent UTI's affect kids with SB??..What

   complications can occur?

   Any tips on how to prevent it? how do i do a very safe &

   clean catheterization? I now even clean her using mineral water before

   introducing the cath..

   Will the risks of getting UTI's become less as they get older?



   [Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Hi I wear these things between a pad and a breef.  I have to still wear a pair

of underwar with them as they just have a thin strap at the top and it covers

the necessary spots for leaking but not much more so I wear a pair of underwar

for that sake.  Some times when I cathe my pad or what ever you want to call it

is still completely dry.  And other times it is wet.  I change when it is wet. 

I am not understanding if you change it when it is completely dry or not?  Sorry

Hope every thing is going well for you take care jackie

   ----- Original Message -----

   From: Amber Kops

   To: spinabifidacentral@yahoogroups.com

   Sent: Sunday, June 07, 2009 2:03 PM

   Subject: Re: [Spina Bifida Central] neurogenic bladder











   Hi Jackie,



   I actually wear an attends brief. I have tried wearing a pad with underwear

and had some bowel accidents, thankfully all at home and so I've just stuck with

the attends. I typically change it with every cath to try to keep any bacteria

from breeding. What I would suggest to you is gauge how much you've been

typically leaking and see if a pad will work for you or if you need more

protection. Good luck!



   Amber K.



   ----- Original Message -----

   From: Jackie

   To: spinabifidacentral@yahoogroups.com

   Sent: 6/5/2009 8:51:05 AM

   Subject: Re: [Spina Bifida Central] neurogenic bladder



   Hi

   when you say change your under garment do you mean a pad that you are wearing?

I am just trying to figure out if that might work for me. I am just getting back

in to staying dry inbetween cathing after dethering surgery. I have been having

infections and wonder if changing my under garment might work. That is why I am

claraifying if that means a pad or some incontence product.

   thanks jackie

   ----- Original Message -----

   From: Amber Kops

   To: spinabifidacentral@yahoogroups.com

   Sent: Saturday, May 30, 2009 4:38 PM

   Subject: RE: [Spina Bifida Central] neurogenic bladder



   I've been cathed/cathing every 3-4 hours since I was a baby. I am to use a new

catheter every time with a pair of gloves, iodine, and change my undergarment. I

admit I don't always change my undergarment when I'm out in public because it

makes cathing a little longer cuz I do it in my chair, but I change every other

time when in public. When I was a kid I had so many UTI's I became tolerant to

all oral medications and had to start taking IM injections and IV drugs. That

finally went away after a while thank fully. That was like 17 years ago though

so I don't remember how. Now when I get up in the morning I take my Ditropan

with a glass of Cranberry juice, drink at least 4 glasses of water a day, have a

bowel program of taking 1-2 Senna tablets every day which works good for the

most part, accidents are fewer. I also have the reflux in my kidneys which

doesn't help with infections either. I did take Macrodantin for about 10 years

but then some kind of study came out that said people who take it for longer

than 6 months have a chance of getting fibrosis in the lungs so my Urologist

took me off of it and put me on Hiprex (also called Mandelamine) as a

prophylactic. In addition to that I have a Gentamycin/Sterile Water combo that I

do through a catheter after cathing twice a day. I also take Imipramine which

treats the reflux in my kidneys. I started that whole Ditropan, Hiprex,

Imipramine combo when I was 17 or 18 and since then my reflux has been under

control and is now no more than a grade 2 on bad days and I on ly have problems

with major infections 1 or 2 times a year. I do get smelly cloudy urine if I'm

not having a good week with my bowel program and am backed up though. That

usually clears up when I clean them out though.



   Hope that was helpful!



   Ambe K.



   ----- Original Message -----

   From: tHeRes3

   To: spinabifidacentral@yahoogroups.com

   Sent: 5/29/2009 11:33:09 PM

   Subject: [Spina Bifida Central] neurogenic bladder



   Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

   and lately she has been having episodes of UTI for the first time. She

   doesnt leak as much as before though which i assumed was a good thing

   but then she is now getting UTI's. She's been on & off antibiotics from

   keflex to bactrim, but the bacteria comes & goes. I know this is the

   nature of SB but having frequent UTI's in 2 months worries me.

   How does having frequent UTI's affect kids with SB??..What

   complications can occur?

   Any tips on how to prevent it? how do i do a very safe &

   clean catheterization? I now even clean her using mineral water before

   introducing the cath..

   Will the risks of getting UTI's become less as they get older?



   [Non-text portions of this message have been removed]



   [Non-text portions of this message have been removed]



   [Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Hi thanks.  I think I will try it tired of getting infections.  It is natural

and I think that is the best if things can be dealt with that way.

take care jackie

   ----- Original Message -----

   From: Elizabeth Tiedemann

   To: spinabifidacentral@yahoogroups.com

   Sent: Tuesday, June 09, 2009 6:59 PM

   Subject: Re: [Spina Bifida Central] neurogenic bladder











   Her dr. said to buy the concetrated lemon juice and "mix like lemonade."  I

time per day. This must change the ph somehow?



   --- On Tue, 6/9/09, Jackie <jpentland1@...> wrote:



   From: Jackie <jpentland1@...>

   Subject: Re: [Spina Bifida Central] neurogenic bladder

   To: spinabifidacentral@yahoogroups.com

   Date: Tuesday, June 9, 2009, 10:15 PM



   Hi when you mean drink lemon juice daily do you mean mixed with water or plain

lemon juice? Another question about the lemon juice how many times a day?

   thanks jackie

   ----- Original Message -----

   From: Elizabeth Tiedemann

   To: spinabifidacentral@ yahoogroups. com

   Sent: Saturday, May 30, 2009 9:51 AM

   Subject: Re: [Spina Bifida Central] neurogenic bladder



   My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots

of UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but

we have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment- have tried-works. Drink lemon

juice daily-haven' t tried yet. Force fluids-lots and lots at first sign of

odor, flushes system-tried- works. Certain probiotics-haven' t tried-still

researching. Hope this helps. Beth



   --- On Sat, 5/30/09, tHeRes3 <tgwagas@yahoo. com> wrote:



   From: tHeRes3 <tgwagas@yahoo. com>

   Subject: [Spina Bifida Central] neurogenic bladder

   To: spinabifidacentral@ yahoogroups. com

   Date: Saturday, May 30, 2009, 3:32 AM



   Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

   and lately she has been having episodes of UTI for the first time. She

   doesnt leak as much as before though which i assumed was a good thing

   but then she is now getting UTI's. She's been on & off antibiotics from

   keflex to bactrim, but the bacteria comes & goes. I know this is the

   nature of SB but having frequent UTI's in 2 months worries me.

   How does having frequent UTI's affect kids with SB??..What

   complications can occur?

   Any tips on how to prevent it? how do i do a very safe &

   clean catheterization? I now even clean her using mineral water before

   introducing the cath..

   Will the risks of getting UTI's become less as they get older?



   [Non-text portions of this message have been removed]



   [Non-text portions of this message have been removed]



   [Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

White vinegar?? How much do u put in the bath water??



Sent from my iPhone



On Jul 3, 2009, at 12:44 PM, "Jackie" <jpentland1@...> wrote:







Hi thanks. I think I will try it tired of getting infections. It is natural and

I think that is the best if things can be dealt with that way.

take care jackie

----- Original Message -----

From: Elizabeth Tiedemann

To: spinabifidacentral@yahoogroups.com

Sent: Tuesday, June 09, 2009 6:59 PM

Subject: Re: [Spina Bifida Central] neurogenic bladder



Her dr. said to buy the concetrated lemon juice and "mix like lemonade." I time

per day. This must change the ph somehow?



--- On Tue, 6/9/09, Jackie <jpentland1@...> wrote:



From: Jackie <jpentland1@...>

Subject: Re: [Spina Bifida Central] neurogenic bladder

To: spinabifidacentral@yahoogroups.com

Date: Tuesday, June 9, 2009, 10:15 PM



Hi when you mean drink lemon juice daily do you mean mixed with water or plain

lemon juice? Another question about the lemon juice how many times a day?

thanks jackie

----- Original Message -----

From: Elizabeth Tiedemann

To: spinabifidacentral@ yahoogroups. com

Sent: Saturday, May 30, 2009 9:51 AM

Subject: Re: [Spina Bifida Central] neurogenic bladder



My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots of

UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but we

have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment- have tried-works. Drink lemon

juice daily-haven' t tried yet. Force fluids-lots and lots at first sign of

odor, flushes system-tried- works. Certain probiotics-haven' t tried-still

researching. Hope this helps. Beth



--- On Sat, 5/30/09, tHeRes3 <tgwagas@yahoo. com> wrote:



From: tHeRes3 <tgwagas@yahoo. com>

Subject: [Spina Bifida Central] neurogenic bladder

To: spinabifidacentral@ yahoogroups. com

Date: Saturday, May 30, 2009, 3:32 AM



Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

and lately she has been having episodes of UTI for the first time. She

doesnt leak as much as before though which i assumed was a good thing

but then she is now getting UTI's. She's been on & off antibiotics from

keflex to bactrim, but the bacteria comes & goes. I know this is the

nature of SB but having frequent UTI's in 2 months worries me.

How does having frequent UTI's affect kids with SB??..What

complications can occur?

Any tips on how to prevent it? how do i do a very safe &

clean catheterization? I now even clean her using mineral water before

introducing the cath..

Will the risks of getting UTI's become less as they get older?



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]















[Non-text portions of this message have been removed]

Hi I wear more like an attens but it is not full sides.  Do you change it even

if it is not damp or wet? If it is dry what do you do?

thanks jackie

   ----- Original Message -----

   From: Amber Kops

   To: spinabifidacentral@yahoogroups.com

   Sent: Sunday, June 07, 2009 2:03 PM

   Subject: Re: [Spina Bifida Central] neurogenic bladder











   Hi Jackie,



   I actually wear an attends brief. I have tried wearing a pad with underwear

and had some bowel accidents, thankfully all at home and so I've just stuck with

the attends. I typically change it with every cath to try to keep any bacteria

from breeding. What I would suggest to you is gauge how much you've been

typically leaking and see if a pad will work for you or if you need more

protection. Good luck!



   Amber K.



   ----- Original Message -----

   From: Jackie

   To: spinabifidacentral@yahoogroups.com

   Sent: 6/5/2009 8:51:05 AM

   Subject: Re: [Spina Bifida Central] neurogenic bladder



   Hi

   when you say change your under garment do you mean a pad that you are wearing?

I am just trying to figure out if that might work for me. I am just getting back

in to staying dry inbetween cathing after dethering surgery. I have been having

infections and wonder if changing my under garment might work. That is why I am

claraifying if that means a pad or some incontence product.

   thanks jackie

   ----- Original Message -----

   From: Amber Kops

   To: spinabifidacentral@yahoogroups.com

   Sent: Saturday, May 30, 2009 4:38 PM

   Subject: RE: [Spina Bifida Central] neurogenic bladder



   I've been cathed/cathing every 3-4 hours since I was a baby. I am to use a new

catheter every time with a pair of gloves, iodine, and change my undergarment. I

admit I don't always change my undergarment when I'm out in public because it

makes cathing a little longer cuz I do it in my chair, but I change every other

time when in public. When I was a kid I had so many UTI's I became tolerant to

all oral medications and had to start taking IM injections and IV drugs. That

finally went away after a while thank fully. That was like 17 years ago though

so I don't remember how. Now when I get up in the morning I take my Ditropan

with a glass of Cranberry juice, drink at least 4 glasses of water a day, have a

bowel program of taking 1-2 Senna tablets every day which works good for the

most part, accidents are fewer. I also have the reflux in my kidneys which

doesn't help with infections either. I did take Macrodantin for about 10 years

but then some kind of study came out that said people who take it for longer

than 6 months have a chance of getting fibrosis in the lungs so my Urologist

took me off of it and put me on Hiprex (also called Mandelamine) as a

prophylactic. In addition to that I have a Gentamycin/Sterile Water combo that I

do through a catheter after cathing twice a day. I also take Imipramine which

treats the reflux in my kidneys. I started that whole Ditropan, Hiprex,

Imipramine combo when I was 17 or 18 and since then my reflux has been under

control and is now no more than a grade 2 on bad days and I on ly have problems

with major infections 1 or 2 times a year. I do get smelly cloudy urine if I'm

not having a good week with my bowel program and am backed up though. That

usually clears up when I clean them out though.



   Hope that was helpful!



   Ambe K.



   ----- Original Message -----

   From: tHeRes3

   To: spinabifidacentral@yahoogroups.com

   Sent: 5/29/2009 11:33:09 PM

   Subject: [Spina Bifida Central] neurogenic bladder



   Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

   and lately she has been having episodes of UTI for the first time. She

   doesnt leak as much as before though which i assumed was a good thing

   but then she is now getting UTI's. She's been on & off antibiotics from

   keflex to bactrim, but the bacteria comes & goes. I know this is the

   nature of SB but having frequent UTI's in 2 months worries me.

   How does having frequent UTI's affect kids with SB??..What

   complications can occur?

   Any tips on how to prevent it? how do i do a very safe &

   clean catheterization? I now even clean her using mineral water before

   introducing the cath..

   Will the risks of getting UTI's become less as they get older?



   [Non-text portions of this message have been removed]



   [Non-text portions of this message have been removed]



   [Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Hi is this the lemon juice that is in the bottles.  Does this just mean that you

add the 4 cups of water.  Would you have to add sugar?

thanks

jackie

   ----- Original Message -----

   From: Elizabeth Tiedemann

   To: spinabifidacentral@yahoogroups.com

   Sent: Tuesday, June 09, 2009 6:59 PM

   Subject: Re: [Spina Bifida Central] neurogenic bladder











   Her dr. said to buy the concetrated lemon juice and "mix like lemonade."  I

time per day. This must change the ph somehow?



   --- On Tue, 6/9/09, Jackie <jpentland1@...> wrote:



   From: Jackie <jpentland1@...>

   Subject: Re: [Spina Bifida Central] neurogenic bladder

   To: spinabifidacentral@yahoogroups.com

   Date: Tuesday, June 9, 2009, 10:15 PM



   Hi when you mean drink lemon juice daily do you mean mixed with water or plain

lemon juice? Another question about the lemon juice how many times a day?

   thanks jackie

   ----- Original Message -----

   From: Elizabeth Tiedemann

   To: spinabifidacentral@ yahoogroups. com

   Sent: Saturday, May 30, 2009 9:51 AM

   Subject: Re: [Spina Bifida Central] neurogenic bladder



   My daughter is 4 1/2 wih T-10 SB. We cath every three hours. She has had lots

of UTI's, mostly e.coli. I have talked to dr. about prophalactic antibiotics but

we have to think about resistance to antibiotics. Here are other "none medicine"

things suggested by her pediatrician and urologist. Bathe in white vinegar-it

changes the PH and creates a hostile environment- have tried-works. Drink lemon

juice daily-haven' t tried yet. Force fluids-lots and lots at first sign of

odor, flushes system-tried- works. Certain probiotics-haven' t tried-still

researching. Hope this helps. Beth



   --- On Sat, 5/30/09, tHeRes3 <tgwagas@yahoo. com> wrote:



   From: tHeRes3 <tgwagas@yahoo. com>

   Subject: [Spina Bifida Central] neurogenic bladder

   To: spinabifidacentral@ yahoogroups. com

   Date: Saturday, May 30, 2009, 3:32 AM



   Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

   and lately she has been having episodes of UTI for the first time. She

   doesnt leak as much as before though which i assumed was a good thing

   but then she is now getting UTI's. She's been on & off antibiotics from

   keflex to bactrim, but the bacteria comes & goes. I know this is the

   nature of SB but having frequent UTI's in 2 months worries me.

   How does having frequent UTI's affect kids with SB??..What

   complications can occur?

   Any tips on how to prevent it? how do i do a very safe &

   clean catheterization? I now even clean her using mineral water before

   introducing the cath..

   Will the risks of getting UTI's become less as they get older?



   [Non-text portions of this message have been removed]



   [Non-text portions of this message have been removed]



   [Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Generally I change it with every cath, damp or dry.  If I am out for a long time

during the day I'll change it every other time (kinda difficult to change in the

chair), unless of course its wet.  My urologist suggested I change it every time

to give me that much more protection from infection.



Amber K.





----- Original Message -----

From: Jackie

To: spinabifidacentral@yahoogroups.com

Sent: 7/6/2009 11:18:07 AM

Subject: Re: [Spina Bifida Central] neurogenic bladder











Hi I wear more like an attens but it is not full sides. Do you change it even if

it is not damp or wet? If it is dry what do you do?

thanks jackie

----- Original Message -----

From: Amber Kops

To: spinabifidacentral@yahoogroups.com

Sent: Sunday, June 07, 2009 2:03 PM

Subject: Re: [Spina Bifida Central] neurogenic bladder



Hi Jackie,



I actually wear an attends brief. I have tried wearing a pad with underwear and

had some bowel accidents, thankfully all at home and so I've just stuck with the

attends. I typically change it with every cath to try to keep any bacteria from

breeding. What I would suggest to you is gauge how much you've been typically

leaking and see if a pad will work for you or if you need more protection. Good

luck!



Amber K.



----- Original Message -----

From: Jackie

To: spinabifidacentral@yahoogroups.com

Sent: 6/5/2009 8:51:05 AM

Subject: Re: [Spina Bifida Central] neurogenic bladder



Hi

when you say change your under garment do you mean a pad that you are wearing? I

am just trying to figure out if that might work for me. I am just getting back

in to staying dry inbetween cathing after dethering surgery. I have been having

infections and wonder if changing my under garment might work. That is why I am

claraifying if that means a pad or some incontence product.

thanks jackie

----- Original Message -----

From: Amber Kops

To: spinabifidacentral@yahoogroups.com

Sent: Saturday, May 30, 2009 4:38 PM

Subject: RE: [Spina Bifida Central] neurogenic bladder



I've been cathed/cathing every 3-4 hours since I was a baby. I am to use a new

catheter every time with a pair of gloves, iodine, and change my undergarment. I

admit I don't always change my undergarment when I'm out in public because it

makes cathing a little longer cuz I do it in my chair, but I change every other

time when in public. When I was a kid I had so many UTI's I became tolerant to

all oral medications and had to start taking IM injections and IV drugs. That

finally went away after a while thank fully. That was like 17 years ago though

so I don't remember how. Now when I get up in the morning I take my Ditropan

with a glass of Cranberry juice, drink at least 4 glasses of water a day, have a

bowel program of taking 1-2 Senna tablets every day which works good for the

most part, accidents are fewer. I also have the reflux in my kidneys which

doesn't help with infections either. I did take Macrodantin for about 10 years

but then some kind of study came out that said people who take it for longer

than 6 months have a chance of getting fibrosis in the lungs so my Urologist

took me off of it and put me on Hiprex (also called Mandelamine) as a

prophylactic. In addition to that I have a Gentamycin/Sterile Water combo that I

do through a catheter after cathing twice a day. I also take Imipramine which

treats the reflux in my kidneys. I started that whole Ditropan, Hiprex,

Imipramine combo when I was 17 or 18 and since then my reflux has been under

control and is now no more than a grade 2 on bad days and I on ly have problems

with major infections 1 or 2 times a year. I do get smelly cloudy urine if I'm

not having a good week with my bowel program and am backed up though. That

usually clears up when I clean them out though.



Hope that was helpful!



Ambe K.



----- Original Message -----

From: tHeRes3

To: spinabifidacentral@yahoogroups.com

Sent: 5/29/2009 11:33:09 PM

Subject: [Spina Bifida Central] neurogenic bladder



Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day

and lately she has been having episodes of UTI for the first time. She

doesnt leak as much as before though which i assumed was a good thing

but then she is now getting UTI's. She's been on & off antibiotics from

keflex to bactrim, but the bacteria comes & goes. I know this is the

nature of SB but having frequent UTI's in 2 months worries me.

How does having frequent UTI's affect kids with SB??..What

complications can occur?

Any tips on how to prevent it? how do i do a very safe &

clean catheterization? I now even clean her using mineral water before

introducing the cath..

Will the risks of getting UTI's become less as they get older?



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]









[Non-text portions of this message have been removed]