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The descrepency is what Beth was told by the tech after the exam was

complete versus the report that she received from the Nurse Practitioner.

Randee

In a message dated 11/24/2007 11:15:49 P.M. Eastern Standard Time,

mzw4@... writes:

Randee, could you tell me where the discrepancy is in

the report? From what I'm reading, it doesn't seem

like there is one, but I am admittedly not keeping up

with my own urological stuff (cathing fixed it as far

as I'm concerned).

Her report sounds a lot like mine, except for the tiny

bladder. Mine was huge. But if there is something I

am not catching here, I need to know. I hate not

knowing.

Thanks!

--- _Randeejae@..._ (mailto:Randeejae@...) wrote:

>

> Hi Beth...Can you ask to speak to the MD directly

> and ask him about the

> descrepency in the reports? Are you in a small town

> where you can't get another

> opinion? I sure understand your questions!

>

> randee

>

>

> In a message dated 11/24/2007 10:47:19 P.M. Eastern

> Standard Time,

> _froga1@..._ (mailto:froga1@...) writes:

>

>

>

>

> I just took my daughter back to the urologist for

> her

> 1 month checkup from the urologic dynamic study

> teast

> and taking cardura 1mg every night. well i didnt

> start

> the cardura-for many reasons(which I will not get

> into). The cardura is suppose to be used for the

> blockage in her bladder-not a physical blockage,

> but

> from not emptying form the smooth musles and other

> muslce in the bladders not properly corresponding

> with

> each other causeing a blockage--where the urine does

> not completely empty.

> ok---the nurse practitioner was fine with me not

> giving cardura. I asked her about the uro dynamic

> study. She said Kenzie had some urinary retention.

> The

> NP recommended us continuing with the time voids

> every

> 3 hours and then repeating the urological dynamic

> study in three months.

> She bacially told me that we dont know what her

> outcome will be. but the main goal is to keep

> Kenzie

> from getting any UTI's. she's on bactrim.

>

> BRIEF HISTORY: my daughter is 3yrs old, IA 4 months,

> TC release in May 2007. At 14 months her VCUG and

> kidney Ultrasounds can back normal. Kidneys shape

> and

> function normal and no reflux noted, she did have

> stage 1 on left and stage 2 on right when she was 6

> months but at 14 months resolved. ok!!!! my

> questions

> are::::

>

> Is this normal procedures for the uro to follow????

>

> Should I be worried about her kidneys???? or let

> time

> tell ????

>

> The urologist in my town mainly see the nurse

> practitioner- --Do anyone else have this going

> on???

>

> Im curious what time frame of knowing if she will

> regain full control of her bladder again???

>

> Im confused---the urodynamic study tech told when

> about 20ml was inserted Kenzie started feeling the

> urge to pee, however she did hold it and was

> continued

> to fill her to normal capacity of a child her age

> and

> weight. She was able to hold it with little

> leakage.

> That what the tech said.

> BUT::::: the Nurse practitioner said she is

> retaining

> urine------can someone resolve form this with

> time?????

>

> Any advice!!!!!! Beth

>

>

>

>

>

>

>

>

>

> ************ ******** ******** ************<WBR>***

> AOL's list of 2007's hottest

> products.

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WBhttp_

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) )

>

>

> [Non-text portions of this message have been

> removed]

>

>

Check out my blog: _http://princessmatihttp://princessmhttp://prhtt_

(http://princessmatildalovestostamp.blogspot.com/)

__________________________________________________________

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Text or chat with friends inside Yahoo! Mail. See how.

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Yes, you are right! Randee

In a message dated 11/25/2007 12:02:20 A.M. Eastern Standard Time,

mzw4@... writes:

Randee, I'm being dense. I know it. I see that the

tech told her that her daughter gets a full feeling

very quickly, but can hold her urine until her bladder

fills to normal capacity, and not leak. And the

report the NP gave her said she retains some urine,

which is a whole different issue from what the tech

brought up.

What am I missing? I get obsessive about things like

this, and if you think I'm just being difficult, let

me know. I really don't mean to be difficult. I

seriously don't see that both cases can't be true, and

if I'm missing something, I just want to know what.

--- _Randeejae@..._ (mailto:Randeejae@...) wrote:

>

> The descrepency is what Beth was told by the tech

> after the exam was

> complete versus the report that she received from

> the Nurse Practitioner. Randee

>

>

>

> In a message dated 11/24/2007 11:15:49 P.M. Eastern

> Standard Time,

> _mzw4@..._ (mailto:mzw4@...) writes:

>

>

>

> >

> > In a message dated 11/24/2007 10:47:19 P.M.

> Eastern

> >

> > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> months,

> > TC release in May 2007. At 14 months her VCUG and

> > kidney Ultrasounds can back normal. Kidneys shape

> > and

> > function normal and no reflux noted, she did have

> > stage 1 on left and stage 2 on right when she was

> 6

> > months but at 14 months resolved. ok!!!! my

> > questions

> > are::::

> >

> > Is this normal procedures for the uro to

> follow????

> >

> > Should I be worried about her kidneys???? or let

> > time

> > tell ????

> >

> > The urologist in my town mainly see the nurse

> > practitioner- --Do anyone else have this going

> > on???

> >

> > Im curious what time frame of knowing if she will

> > regain full control of her bladder again???

> >

> > Im confused---the urodynamic study tech told when

> > about 20ml was inserted Kenzie started feeling

> the

> > urge to pee, however she did hold it and was

> > continued

> > to fill her to normal capacity of a child her age

> > and

> > weight. She was able to hold it with little

> > leakage.

> > That what the tech said.

> > BUT::::: the Nurse practitioner said she is

> > retaining

> > urine------can someone resolve form this with

> > time?????

> >

> > Any advice!!!!!! Beth

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ************ ******** ********

> ************<WBR>***

> > AOL's list of 2007's hottest

> > products.

> >

>

(__http://money.http://money._ (http://money.http//money.)

<_WBhttp://money.WBhttp://money.WBhttp:/_

(wbhttp://money.http://monhttp://money.) <WBhttp_

>

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WBhttp_

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) )

> )

> >

> >

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

> > removed]

> >

> >

>

> Check out my blog:

> __http://princessmatihttp://princessmhttp://prince_

(http://princessmatihttp//princessmhttp://prhtt_)

> (_http://princessmatihttp://princessmhttp://prhttp_

(http://princessmatildalovestostamp.blogspot.com/) )

>

>

__________________________________________________________

> Be a better pen pal.

> Text or chat with friends inside Yahoo! Mail. See

> how.

> __http://overview.http://overview._ (http://overview.http//overhttp_)

> (_http://overview.http://overhttp_ (http://overview.mail.yahoo.com/) )

>

>

>

>

>

>

>

>

> ************ ******** ******** ************<WBR>***

> AOL's list of 2007's hottest

> products.

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WBhttp_

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001) )

>

>

> [Non-text portions of this message have been

> removed]

>

>

Check out my blog: _http://princessmatihttp://princessmhttp://prhtt_

(http://princessmatildalovestostamp.blogspot.com/)

__________________________________________________________

Never miss a thing. Make Yahoo your home page.

_http://www.yahoo.http://w_ (http://www.yahoo.com/r/hs)

39

**************************************Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

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Randee, I'm being dense. I know it. I see that the

tech told her that her daughter gets a full feeling

very quickly, but can hold her urine until her bladder

fills to normal capacity, and not leak. And the

report the NP gave her said she retains some urine,

which is a whole different issue from what the tech

brought up.

What am I missing? I get obsessive about things like

this, and if you think I'm just being difficult, let

me know. I really don't mean to be difficult. I

seriously don't see that both cases can't be true, and

if I'm missing something, I just want to know what.

--- Randeejae@... wrote:

>

> The descrepency is what Beth was told by the tech

> after the exam was

> complete versus the report that she received from

> the Nurse Practitioner. Randee

>

>

>

> In a message dated 11/24/2007 11:15:49 P.M. Eastern

> Standard Time,

> mzw4@... writes:

>

>

>

> >

> > In a message dated 11/24/2007 10:47:19 P.M.

> Eastern

> >

> > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> months,

> > TC release in May 2007. At 14 months her VCUG and

> > kidney Ultrasounds can back normal. Kidneys shape

> > and

> > function normal and no reflux noted, she did have

> > stage 1 on left and stage 2 on right when she was

> 6

> > months but at 14 months resolved. ok!!!! my

> > questions

> > are::::

> >

> > Is this normal procedures for the uro to

> follow????

> >

> > Should I be worried about her kidneys???? or let

> > time

> > tell ????

> >

> > The urologist in my town mainly see the nurse

> > practitioner- --Do anyone else have this going

> > on???

> >

> > Im curious what time frame of knowing if she will

> > regain full control of her bladder again???

> >

> > Im confused---the urodynamic study tech told when

> > about 20ml was inserted Kenzie started feeling

> the

> > urge to pee, however she did hold it and was

> > continued

> > to fill her to normal capacity of a child her age

> > and

> > weight. She was able to hold it with little

> > leakage.

> > That what the tech said.

> > BUT::::: the Nurse practitioner said she is

> > retaining

> > urine------can someone resolve form this with

> > time?????

> >

> > Any advice!!!!!! Beth

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ************ ******** ********

> ************<WBR>***

> > AOL's list of 2007's hottest

> > products.

> >

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WBhttp_

>

>

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> )

> >

> >

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

> > removed]

> >

> >

>

> Check out my blog:

> _http://princessmatihttp://princessmhttp://prhtt_

> (http://princessmatildalovestostamp.blogspot.com/)

>

>

__________________________________________________________

> Be a better pen pal.

> Text or chat with friends inside Yahoo! Mail. See

> how.

> _http://overview.http://overhttp_

> (http://overview.mail.yahoo.com/)

>

>

>

>

>

>

>

>

> **************************************Check out

> AOL's list of 2007's hottest

> products.

>

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

>

> [Non-text portions of this message have been

> removed]

>

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

Link to comment
Share on other sites

I worry for my own health because there are certain

things I just don't feel like dealing with. Urological

issues are just one area. I hate seeing doctors,

playing the professional patient. When cathing fixed

my peeing problem, that was it for me. No more urology

stuff. I do get blood work done occasionally to check

for renal issues, but I have no desire to let them

stick electrodes and probes on me and in me to tell me

what I already know - I have no bladder function.

But when a child has a chance to get some back, I

certainly don't want to be passing along bad info.

Thanks for helping me, Randee!!

--- Randeejae@... wrote:

>

> Yes, you are right! Randee

>

>

>

> In a message dated 11/25/2007 12:02:20 A.M. Eastern

> Standard Time,

> mzw4@... writes:

>

>

>

>

> Randee, I'm being dense. I know it. I see that the

> tech told her that her daughter gets a full feeling

> very quickly, but can hold her urine until her

> bladder

> fills to normal capacity, and not leak. And the

> report the NP gave her said she retains some urine,

> which is a whole different issue from what the tech

> brought up.

>

> What am I missing? I get obsessive about things

> like

> this, and if you think I'm just being difficult,

> let

> me know. I really don't mean to be difficult. I

> seriously don't see that both cases can't be true,

> and

> if I'm missing something, I just want to know what.

>

>

>

> --- _Randeejae@..._ (mailto:Randeejae@...)

> wrote:

>

> >

> > The descrepency is what Beth was told by the tech

> > after the exam was

> > complete versus the report that she received from

> > the Nurse Practitioner. Randee

> >

> >

> >

> > In a message dated 11/24/2007 11:15:49 P.M.

> Eastern

> > Standard Time,

> > _mzw4@..._ (mailto:mzw4@...) writes:

> >

> >

> >

>

> > >

> > > In a message dated 11/24/2007 10:47:19 P.M.

> > Eastern

> > >

> > > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> > months,

> > > TC release in May 2007. At 14 months her VCUG

> and

> > > kidney Ultrasounds can back normal. Kidneys

> shape

> > > and

> > > function normal and no reflux noted, she did

> have

> > > stage 1 on left and stage 2 on right when she

> was

> > 6

> > > months but at 14 months resolved. ok!!!! my

> > > questions

> > > are::::

> > >

> > > Is this normal procedures for the uro to

> > follow????

> > >

> > > Should I be worried about her kidneys???? or

> let

> > > time

> > > tell ????

> > >

> > > The urologist in my town mainly see the nurse

> > > practitioner- --Do anyone else have this going

> > > on???

> > >

> > > Im curious what time frame of knowing if she

> will

> > > regain full control of her bladder again???

> > >

> > > Im confused---the urodynamic study tech told

> when

> > > about 20ml was inserted Kenzie started feeling

> > the

> > > urge to pee, however she did hold it and was

> > > continued

> > > to fill her to normal capacity of a child her

> age

> > > and

> > > weight. She was able to hold it with little

> > > leakage.

> > > That what the tech said.

> > > BUT::::: the Nurse practitioner said she is

> > > retaining

> > > urine------can someone resolve form this with

> > > time?????

> > >

> > > Any advice!!!!!! Beth

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ************ ******** ********

> > ************<WBR>***

> > > AOL's list of 2007's hottest

> > > products.

> > >

> >

> (__http://money.http://money._

> (http://money.http//money.)

> <_WBhttp://money.WBhttp://money.WBhttp:/_

> (wbhttp://money.http://monhttp://money.) <WBhttp_

> >

> >

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WBhttp_

>

>

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> )

> > )

> > >

> > >

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

> > > removed]

> > >

> > >

> >

> > Check out my blog:

> >

> __http://princessmatihttp://princessmhttp://prince_

> (http://princessmatihttp//princessmhttp://prhtt_)

> >

> (_http://princessmatihttp://princessmhttp://prhttp_

> (http://princessmatildalovestostamp.blogspot.com/) )

>

> >

> >

>

__________________________________________________________

> > Be a better pen pal.

> > Text or chat with friends inside Yahoo! Mail. See

> > how.

> > __http://overview.http://overview._

> (http://overview.http//overhttp_)

> > (_http://overview.http://overhttp_

> (http://overview.mail.yahoo.com/) )

> >

> >

> >

> >

> >

> >

> >

> >

> > ************ ******** ********

> ************<WBR>***

> > AOL's list of 2007's hottest

> > products.

> >

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WBhttp_

>

>

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> )

> >

> >

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

> > removed]

> >

> >

>

> Check out my blog:

> _http://princessmatihttp://princessmhttp://prhtt_

> (http://princessmatildalovestostamp.blogspot.com/)

>

>

__________________________________________________________

> Never miss a thing. Make Yahoo your home page.

> _http://www.yahoo.http://w_

> (http://www.yahoo.com/r/hs)

>

>

>

>

>

> 39

>

>

> **************************************Check out

> AOL's list of 2007's hottest

> products.

>

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

>

> [Non-text portions of this message have been

> removed]

>

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

________________________________________________________________________________\

____

Be a better sports nut! Let your teams follow you

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--how does our report seem like yours. How long did the uro

do testing before you went to cathing????

>

> >

> > Hi Beth...Can you ask to speak to the MD directly

> > and ask him about the

> > descrepency in the reports? Are you in a small town

> > where you can't get another

> > opinion? I sure understand your questions!

> >

> > randee

> >

> >

> > In a message dated 11/24/2007 10:47:19 P.M. Eastern

> > Standard Time,

> > _froga1@..._ (mailto:froga1@...) writes:

> >

> >

> >

> >

> > I just took my daughter back to the urologist for

> > her

> > 1 month checkup from the urologic dynamic study

> > teast

> > and taking cardura 1mg every night. well i didnt

> > start

> > the cardura-for many reasons(which I will not get

> > into). The cardura is suppose to be used for the

> > blockage in her bladder-not a physical blockage,

> > but

> > from not emptying form the smooth musles and other

> > muslce in the bladders not properly corresponding

> > with

> > each other causeing a blockage--where the urine does

> > not completely empty.

> > ok---the nurse practitioner was fine with me not

> > giving cardura. I asked her about the uro dynamic

> > study. She said Kenzie had some urinary retention.

> > The

> > NP recommended us continuing with the time voids

> > every

> > 3 hours and then repeating the urological dynamic

> > study in three months.

> > She bacially told me that we dont know what her

> > outcome will be. but the main goal is to keep

> > Kenzie

> > from getting any UTI's. she's on bactrim.

> >

> > BRIEF HISTORY: my daughter is 3yrs old, IA 4 months,

> > TC release in May 2007. At 14 months her VCUG and

> > kidney Ultrasounds can back normal. Kidneys shape

> > and

> > function normal and no reflux noted, she did have

> > stage 1 on left and stage 2 on right when she was 6

> > months but at 14 months resolved. ok!!!! my

> > questions

> > are::::

> >

> > Is this normal procedures for the uro to follow????

> >

> > Should I be worried about her kidneys???? or let

> > time

> > tell ????

> >

> > The urologist in my town mainly see the nurse

> > practitioner- --Do anyone else have this going

> > on???

> >

> > Im curious what time frame of knowing if she will

> > regain full control of her bladder again???

> >

> > Im confused---the urodynamic study tech told when

> > about 20ml was inserted Kenzie started feeling the

> > urge to pee, however she did hold it and was

> > continued

> > to fill her to normal capacity of a child her age

> > and

> > weight. She was able to hold it with little

> > leakage.

> > That what the tech said.

> > BUT::::: the Nurse practitioner said she is

> > retaining

> > urine------can someone resolve form this with

> > time?????

> >

> > Any advice!!!!!! Beth

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ************ ******** ******** ************<WBR>***

> > AOL's list of 2007's hottest

> > products.

> >

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WB

http_

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001) )

> >

> >

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

> > removed]

> >

> >

>

> Check out my blog:

_http://princessmatihttp://princessmhttp://prhtt_

> (http://princessmatildalovestostamp.blogspot.com/)

>

> __________________________________________________________

> Be a better pen pal.

> Text or chat with friends inside Yahoo! Mail. See how.

> _http://overview.http://overhttp_ (http://overview.mail.yahoo.com/)

>

>

>

>

>

>

>

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

>

>

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Share on other sites

The ability to hold urine a long time without leaking

and the retention after urinating. Those are both in

my report.

I went to cathing immediately because by the time I

went to see a urologist, my bladder was pretty much

gone. It's a LONG story, so grab a cup of coffee if

you plan to read it.

I found out I had spina bifida when I was 14. I was

born with a hemangioma over my lipoma that was

bleeding, and was treated for that, but tethered cord

wasn't really considered then, not sure if my old

family doctor even knew what it was. They didn't even

know I had a lipoma. I potty trained early, at 18

months, but I had stress incontinence, if I laughed

too hard, I peed. And I laugh a lot, so I wet my

pants so often as a child and a young adult. It was

AWFUL! I was always embarrassed. If I got scared, I

peed. If I laughed, I peed. If I coughed, I peed. No

one ever thought to check it out.

When I was in 8th grade, the school did a scoliosis

check. The nurse thought I had scoliosis, brought in a

doctor to check me out, and the doctor figured out my

legs were different lengths. That explained the duck

walk. :o) He sent me for x rays and they found the SB

and sent me to a specialist. The specialist never

once mentioned tethered cord. He was pretty awesome

with me. I really liked him a lot. But no mention of

TCS at that point (I was 14 years old).

I had my first child at 17, and at 20, my legs went

numb. Within two weeks, I was having surgery. I had

the lipoma removed, and that's all I knew they were

doing. I was so thrilled to be getting rid of the

horrible lump on my butt that I don't think I heard

another word. Numbness gone, all was well. So fast

forward to age 26. I had two more kids by then, and

was having constant bladder infections. At that point,

I had two bladder infections a month. If I wasn't on

antibiotics, I got an infection within a week. I had

no clue that anything could be going wrong with my

spine. While this wasn't pre-WWW, I didn't even know

to look and see what it might be. I just thought it

was the joy of living in my body with my weak bladder.

After ending up in the ER a couple of times to be

cathed and to get pumped with a ton of really, really

good drugs (my kidneys spasmed due to urine

retention), they finally sent me to a specialist.

What they found is I can hold way more urine than a

normal person and I couldn't empty my bladder. In

fact, I was retaining more urine than most people can

ever hold. That's why the constant infections.

That was when I was 29. I had surgery a year later

due to leg weakness and pain. Neither really were

helped, though the weakness did stop progressing. Pain

comes and goes. My bladder issues went on so long that

I will never get function back. The joy of being

blissfully unaware comes with a price, I suppose.

Cathing got rid of my infections completely until I

got pregnant at 34. I don't know what happened at

that point, but since then, I get infections again.

Not like before, maybe two a year at most.

Anyhow, that's my history in a nutshell. I cath. I

don't mind cathing, though I think I might be enticed

to get the stim implant if I continue to get UTIs.

Aren't you glad you asked?

--- beth wrote:

> --how does our report seem like yours. How

> long did the uro

> do testing before you went to cathing????

>

> >

> > >

> > > Hi Beth...Can you ask to speak to the MD

> directly

> > > and ask him about the

> > > descrepency in the reports? Are you in a small

> town

> > > where you can't get another

> > > opinion? I sure understand your questions!

> > >

> > > randee

> > >

> > >

> > > In a message dated 11/24/2007 10:47:19 P.M.

> Eastern

> > > Standard Time,

> > > _froga1@..._ (mailto:froga1@...) writes:

> > >

> > >

> > >

> > >

> > > I just took my daughter back to the urologist

> for

> > > her

> > > 1 month checkup from the urologic dynamic study

> > > teast

> > > and taking cardura 1mg every night. well i

> didnt

> > > start

> > > the cardura-for many reasons(which I will not

> get

> > > into). The cardura is suppose to be used for the

> > > blockage in her bladder-not a physical

> blockage,

> > > but

> > > from not emptying form the smooth musles and

> other

> > > muslce in the bladders not properly

> corresponding

> > > with

> > > each other causeing a blockage--where the urine

> does

> > > not completely empty.

> > > ok---the nurse practitioner was fine with me

> not

> > > giving cardura. I asked her about the uro

> dynamic

> > > study. She said Kenzie had some urinary

> retention.

> > > The

> > > NP recommended us continuing with the time voids

> > > every

> > > 3 hours and then repeating the urological

> dynamic

> > > study in three months.

> > > She bacially told me that we dont know what her

> > > outcome will be. but the main goal is to keep

> > > Kenzie

> > > from getting any UTI's. she's on bactrim.

> > >

> > > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> months,

> > > TC release in May 2007. At 14 months her VCUG

> and

> > > kidney Ultrasounds can back normal. Kidneys

> shape

> > > and

> > > function normal and no reflux noted, she did

> have

> > > stage 1 on left and stage 2 on right when she

> was 6

> > > months but at 14 months resolved. ok!!!! my

> > > questions

> > > are::::

> > >

> > > Is this normal procedures for the uro to

> follow????

> > >

> > > Should I be worried about her kidneys???? or let

> > > time

> > > tell ????

> > >

> > > The urologist in my town mainly see the nurse

> > > practitioner- --Do anyone else have this going

> > > on???

> > >

> > > Im curious what time frame of knowing if she

> will

> > > regain full control of her bladder again???

> > >

> > > Im confused---the urodynamic study tech told

> when

> > > about 20ml was inserted Kenzie started feeling

> the

> > > urge to pee, however she did hold it and was

> > > continued

> > > to fill her to normal capacity of a child her

> age

> > > and

> > > weight. She was able to hold it with little

> > > leakage.

> > > That what the tech said.

> > > BUT::::: the Nurse practitioner said she is

> > > retaining

> > > urine------can someone resolve form this with

> > > time?????

> > >

> > > Any advice!!!!!! Beth

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ************ ******** ********

> ************<WBR>***

> > > AOL's list of 2007's hottest

> > > products.

> > >

> >

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WB

> http_

> > (http://money.aol.com/special/hot-products-2007?

> NCID=aoltop00030000000001) )

> > >

> > >

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

> > > removed]

> > >

> > >

> >

> > Check out my blog:

> _http://princessmatihttp://princessmhttp://prhtt_

> > (http://princessmatildalovestostamp.blogspot.com/)

>

> >

> >

>

__________________________________________________________

> > Be a better pen pal.

> > Text or chat with friends inside Yahoo! Mail. See

> how.

> > _http://overview.http://overhttp_

> (http://overview.mail.yahoo.com/)

> >

> >

> >

> >

> >

> >

> >

> >

> > **************************************Check out

> AOL's list of

> 2007's hottest

> > products.

> > (http://money.aol.com/special/hot-products-2007?

> NCID=aoltop00030000000001)

> >

> >

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

> removed]

> >

>

>

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

________________________________________________________________________________\

____

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with Yahoo Mobile. Try it now.

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I forgot to mention something. This won't be a book.

Promise.

I saw two urologists a year apart. The first guy did

the urodynamics test and told me I had a neurogenic

bladder and all that, but didn't do anything for me

beyond that. He didn't even empty my bladder at the

end of the test. The second uro, a woman, was

fabulous. She did the test, told me I needed to cath

and asked me how I felt about it. At that point, I

was happy to be able to get rid of the urine.

So I guess I didn't cath immediately. Not cathing for

that year cost me a lot of money in trips to the ER

and in antibiotics. I was on prophylactic antibiotics

(the daily stuff) and still got infections constantly.

--- beth wrote:

> --how does our report seem like yours. How

> long did the uro

> do testing before you went to cathing????

>

> >

> > >

> > > Hi Beth...Can you ask to speak to the MD

> directly

> > > and ask him about the

> > > descrepency in the reports? Are you in a small

> town

> > > where you can't get another

> > > opinion? I sure understand your questions!

> > >

> > > randee

> > >

> > >

> > > In a message dated 11/24/2007 10:47:19 P.M.

> Eastern

> > > Standard Time,

> > > _froga1@..._ (mailto:froga1@...) writes:

> > >

> > >

> > >

> > >

> > > I just took my daughter back to the urologist

> for

> > > her

> > > 1 month checkup from the urologic dynamic study

> > > teast

> > > and taking cardura 1mg every night. well i

> didnt

> > > start

> > > the cardura-for many reasons(which I will not

> get

> > > into). The cardura is suppose to be used for the

> > > blockage in her bladder-not a physical

> blockage,

> > > but

> > > from not emptying form the smooth musles and

> other

> > > muslce in the bladders not properly

> corresponding

> > > with

> > > each other causeing a blockage--where the urine

> does

> > > not completely empty.

> > > ok---the nurse practitioner was fine with me

> not

> > > giving cardura. I asked her about the uro

> dynamic

> > > study. She said Kenzie had some urinary

> retention.

> > > The

> > > NP recommended us continuing with the time voids

> > > every

> > > 3 hours and then repeating the urological

> dynamic

> > > study in three months.

> > > She bacially told me that we dont know what her

> > > outcome will be. but the main goal is to keep

> > > Kenzie

> > > from getting any UTI's. she's on bactrim.

> > >

> > > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> months,

> > > TC release in May 2007. At 14 months her VCUG

> and

> > > kidney Ultrasounds can back normal. Kidneys

> shape

> > > and

> > > function normal and no reflux noted, she did

> have

> > > stage 1 on left and stage 2 on right when she

> was 6

> > > months but at 14 months resolved. ok!!!! my

> > > questions

> > > are::::

> > >

> > > Is this normal procedures for the uro to

> follow????

> > >

> > > Should I be worried about her kidneys???? or let

> > > time

> > > tell ????

> > >

> > > The urologist in my town mainly see the nurse

> > > practitioner- --Do anyone else have this going

> > > on???

> > >

> > > Im curious what time frame of knowing if she

> will

> > > regain full control of her bladder again???

> > >

> > > Im confused---the urodynamic study tech told

> when

> > > about 20ml was inserted Kenzie started feeling

> the

> > > urge to pee, however she did hold it and was

> > > continued

> > > to fill her to normal capacity of a child her

> age

> > > and

> > > weight. She was able to hold it with little

> > > leakage.

> > > That what the tech said.

> > > BUT::::: the Nurse practitioner said she is

> > > retaining

> > > urine------can someone resolve form this with

> > > time?????

> > >

> > > Any advice!!!!!! Beth

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ************ ******** ********

> ************<WBR>***

> > > AOL's list of 2007's hottest

> > > products.

> > >

> >

>

(_http://money.http://money.<WBhttp://money.http://monhttp://money.<WB

> http_

> > (http://money.aol.com/special/hot-products-2007?

> NCID=aoltop00030000000001) )

> > >

> > >

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

> > > removed]

> > >

> > >

> >

> > Check out my blog:

> _http://princessmatihttp://princessmhttp://prhtt_

> > (http://princessmatildalovestostamp.blogspot.com/)

>

> >

> >

>

__________________________________________________________

> > Be a better pen pal.

> > Text or chat with friends inside Yahoo! Mail. See

> how.

> > _http://overview.http://overhttp_

> (http://overview.mail.yahoo.com/)

> >

> >

> >

> >

> >

> >

> >

> >

> > **************************************Check out

> AOL's list of

> 2007's hottest

> > products.

> > (http://money.aol.com/special/hot-products-2007?

> NCID=aoltop00030000000001)

> >

> >

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

> removed]

> >

>

>

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

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,

I totally understand hating feeling like your " job " is being a patient. But

realize that most people with SB/SCI/SCD died of renal failure, so

urological/kidney issues are not the area to put on the back burner. The

blood work is good, but my last visit to the uro, he didn't recommend

regular urodynamics (which we all hate), but he did recommend regular kidney

ultrasounds every 2 years. That might be something you want to add to your

blood work checks just to be sure there are no changes in your kidneys. You

are only going to see changes in your blood work once there is a problem.

The ultrasound can show changes in your kidneys early, before it has

progressed to the point that you can see changes in your blood work. Just

something to think about and passing along what my uro said. But I TOTALLY

get feeling like you go to " work " everyday seeing docs. I typically have a

least 1 doc appointment a week, and with 2 PT appointments each week for 1

1/2 hrs, I really do feel like being a patient is my career as of late.

Jenn

> I worry for my own health because there are certain

> things I just don't feel like dealing with. Urological

> issues are just one area. I hate seeing doctors,

> playing the professional patient. When cathing fixed

> my peeing problem, that was it for me. No more urology

> stuff. I do get blood work done occasionally to check

> for renal issues, but I have no desire to let them

> stick electrodes and probes on me and in me to tell me

> what I already know - I have no bladder function.

>

> But when a child has a chance to get some back, I

> certainly don't want to be passing along bad info.

> Thanks for helping me, Randee!!

>

>

>

>

> --- Randeejae@... <Randeejae%40aol.com> wrote:

>

> >

> > Yes, you are right! Randee

> >

> >

> >

> > In a message dated 11/25/2007 12:02:20 A.M. Eastern

> > Standard Time,

> > mzw4@... <mzw4%40yahoo.com> writes:

> >

> >

> >

> >

> > Randee, I'm being dense. I know it. I see that the

> > tech told her that her daughter gets a full feeling

> > very quickly, but can hold her urine until her

> > bladder

> > fills to normal capacity, and not leak. And the

> > report the NP gave her said she retains some urine,

> > which is a whole different issue from what the tech

> > brought up.

> >

> > What am I missing? I get obsessive about things

> > like

> > this, and if you think I'm just being difficult,

> > let

> > me know. I really don't mean to be difficult. I

> > seriously don't see that both cases can't be true,

> > and

> > if I'm missing something, I just want to know what.

> >

> >

> >

> > --- _Randeejae@... <_Randeejae%40aol.Ran>_

(mailto:Randeejae@...<Randeejae%40aol.com>)

>

> > wrote:

> >

> > >

> > > The descrepency is what Beth was told by the tech

> > > after the exam was

> > > complete versus the report that she received from

> > > the Nurse Practitioner. Randee

> > >

> > >

> > >

> > > In a message dated 11/24/2007 11:15:49 P.M.

> > Eastern

> > > Standard Time,

> > > _mzw4@... <_mzw4%40yahoo.com>_

(mailto:mzw4@...<mzw4%40yahoo.com>)

> writes:

> > >

> > >

> > >

> >

> > > >

> > > > In a message dated 11/24/2007 10:47:19 P.M.

> > > Eastern

> > > >

> > > > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> > > months,

> > > > TC release in May 2007. At 14 months her VCUG

> > and

> > > > kidney Ultrasounds can back normal. Kidneys

> > shape

> > > > and

> > > > function normal and no reflux noted, she did

> > have

> > > > stage 1 on left and stage 2 on right when she

> > was

> > > 6

> > > > months but at 14 months resolved. ok!!!! my

> > > > questions

> > > > are::::

> > > >

> > > > Is this normal procedures for the uro to

> > > follow????

> > > >

> > > > Should I be worried about her kidneys???? or

> > let

> > > > time

> > > > tell ????

> > > >

> > > > The urologist in my town mainly see the nurse

> > > > practitioner- --Do anyone else have this going

> > > > on???

> > > >

> > > > Im curious what time frame of knowing if she

> > will

> > > > regain full control of her bladder again???

> > > >

> > > > Im confused---the urodynamic study tech told

> > when

> > > > about 20ml was inserted Kenzie started feeling

> > > the

> > > > urge to pee, however she did hold it and was

> > > > continued

> > > > to fill her to normal capacity of a child her

> > age

> > > > and

> > > > weight. She was able to hold it with little

> > > > leakage.

> > > > That what the tech said.

> > > > BUT::::: the Nurse practitioner said she is

> > > > retaining

> > > > urine------can someone resolve form this with

> > > > time?????

> > > >

> > > > Any advice!!!!!! Beth

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ************ ******** ********

> > > ************<WBR>***

> > > > AOL's list of 2007's hottest

> > > > products.

> > > >

> > >

> > (__http://money.http://money._

> > (http://money.http//money.)

> > <_WBhttp://money.WBhttp://money.WBhttp:/_

> > (wbhttp://money.http://monhttp://money.) <WBhttp_

> > >

> > >

> >

> (_http://money.http://money.<WBhttp://money.http://monhttp://money.

> <WBhttp_

> >

> >

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> > )

> > > )

> > > >

> > > >

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

> > > > removed]

> > > >

> > > >

> > >

> > > Check out my blog:

> > >

> > __http://princessmatihttp://princessmhttp://prince_

> > (http://princessmatihttp//princessmhttp://prhtt_)

> > >

> > (_http://princessmatihttp://princessmhttp://prhttp_

> > (http://princessmatildalovestostamp.blogspot.com/) )

> >

> > >

> > >

> >

> __________________________________________________________

> > > Be a better pen pal.

> > > Text or chat with friends inside Yahoo! Mail. See

> > > how.

> > > __http://overview.http://overview._

> > (http://overview.http//overhttp_)

> > > (_http://overview.http://overhttp_

> > (http://overview.mail.yahoo.com/) )

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ************ ******** ********

> > ************<WBR>***

> > > AOL's list of 2007's hottest

> > > products.

> > >

> >

> (_http://money.http://money.<WBhttp://money.http://monhttp://money.

> <WBhttp_

> >

> >

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> > )

> > >

> > >

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

> > > removed]

> > >

> > >

> >

> > Check out my blog:

> > _http://princessmatihttp://princessmhttp://prhtt_

> > (http://princessmatildalovestostamp.blogspot.com/)

> >

> >

> __________________________________________________________

> > Never miss a thing. Make Yahoo your home page.

> > _http://www.yahoo.http://w_

> > (http://www.yahoo.com/r/hs)

> >

> >

> >

> >

> >

> > 39

> >

> >

> > **************************************Check out

> > AOL's list of 2007's hottest

> > products.

> >

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> >

> >

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

> > removed]

> >

> >

>

> Check out my blog: http://princessmatildalovestostamp.blogspot.com

>

> __________________________________________________________

> Be a better sports nut! Let your teams follow you

> with Yahoo Mobile. Try it now.

> http://mobile.yahoo.com/sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ

>

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Hey Jenn,

My uro's have never done blood work or anything except wanted to perform

urodynamics before untetherings for baselines.

I feel quite stupid - but what would happen to us, just because we self-cath,

that would need ultraounds and blood work - in other words, I thought the

cathing stopped the issue of possible renal failure, etc.? No? Should I

mention something to my uro the next time I go?

I've worked with children who have SB (I teach sp.ed.), but I was never told

anything about that part of the health as far as risks except that being told

directions for cathing (ie: sent to nurse).

Thanks,

Kathy

Re: urinating questions-

,

I totally understand hating feeling like your " job " is being a patient. But

realize that most people with SB/SCI/SCD died of renal failure, so

urological/kidney issues are not the area to put on the back burner. The

blood work is good, but my last visit to the uro, he didn't recommend

regular urodynamics (which we all hate), but he did recommend regular kidney

ultrasounds every 2 years. That might be something you want to add to your

blood work checks just to be sure there are no changes in your kidneys. You

are only going to see changes in your blood work once there is a problem.

The ultrasound can show changes in your kidneys early, before it has

progressed to the point that you can see changes in your blood work. Just

something to think about and passing along what my uro said. But I TOTALLY

get feeling like you go to " work " everyday seeing docs. I typically have a

least 1 doc appointment a week, and with 2 PT appointments each week for 1

1/2 hrs, I really do feel like being a patient is my career as of late.

Jenn

> I worry for my own health because there are certain

> things I just don't feel like dealing with. Urological

> issues are just one area. I hate seeing doctors,

> playing the professional patient. When cathing fixed

> my peeing problem, that was it for me. No more urology

> stuff. I do get blood work done occasionally to check

> for renal issues, but I have no desire to let them

> stick electrodes and probes on me and in me to tell me

> what I already know - I have no bladder function.

>

> But when a child has a chance to get some back, I

> certainly don't want to be passing along bad info.

> Thanks for helping me, Randee!!

>

>

>

>

> --- Randeejae@... <Randeejae%40aol.com> wrote:

>

> >

> > Yes, you are right! Randee

> >

> >

> >

> > In a message dated 11/25/2007 12:02:20 A.M. Eastern

> > Standard Time,

> > mzw4@... <mzw4%40yahoo.com> writes:

> >

> >

> >

> >

> > Randee, I'm being dense. I know it. I see that the

> > tech told her that her daughter gets a full feeling

> > very quickly, but can hold her urine until her

> > bladder

> > fills to normal capacity, and not leak. And the

> > report the NP gave her said she retains some urine,

> > which is a whole different issue from what the tech

> > brought up.

> >

> > What am I missing? I get obsessive about things

> > like

> > this, and if you think I'm just being difficult,

> > let

> > me know. I really don't mean to be difficult. I

> > seriously don't see that both cases can't be true,

> > and

> > if I'm missing something, I just want to know what.

> >

> >

> >

> > --- _Randeejae@... <_Randeejae%40aol.Ran>_

(mailto:Randeejae@...<Randeejae%40aol.com>)

>

> > wrote:

> >

> > >

> > > The descrepency is what Beth was told by the tech

> > > after the exam was

> > > complete versus the report that she received from

> > > the Nurse Practitioner. Randee

> > >

> > >

> > >

> > > In a message dated 11/24/2007 11:15:49 P.M.

> > Eastern

> > > Standard Time,

> > > _mzw4@... <_mzw4%40yahoo.com>_

(mailto:mzw4@...<mzw4%40yahoo.com>)

> writes:

> > >

> > >

> > >

> >

> > > >

> > > > In a message dated 11/24/2007 10:47:19 P.M.

> > > Eastern

> > > >

> > > > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> > > months,

> > > > TC release in May 2007. At 14 months her VCUG

> > and

> > > > kidney Ultrasounds can back normal. Kidneys

> > shape

> > > > and

> > > > function normal and no reflux noted, she did

> > have

> > > > stage 1 on left and stage 2 on right when she

> > was

> > > 6

> > > > months but at 14 months resolved. ok!!!! my

> > > > questions

> > > > are::::

> > > >

> > > > Is this normal procedures for the uro to

> > > follow????

> > > >

> > > > Should I be worried about her kidneys???? or

> > let

> > > > time

> > > > tell ????

> > > >

> > > > The urologist in my town mainly see the nurse

> > > > practitioner- --Do anyone else have this going

> > > > on???

> > > >

> > > > Im curious what time frame of knowing if she

> > will

> > > > regain full control of her bladder again???

> > > >

> > > > Im confused---the urodynamic study tech told

> > when

> > > > about 20ml was inserted Kenzie started feeling

> > > the

> > > > urge to pee, however she did hold it and was

> > > > continued

> > > > to fill her to normal capacity of a child her

> > age

> > > > and

> > > > weight. She was able to hold it with little

> > > > leakage.

> > > > That what the tech said.

> > > > BUT::::: the Nurse practitioner said she is

> > > > retaining

> > > > urine------can someone resolve form this with

> > > > time?????

> > > >

> > > > Any advice!!!!!! Beth

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ************ ******** ********

> > > ************<WBR>***

> > > > AOL's list of 2007's hottest

> > > > products.

> > > >

> > >

> > (__http://money.http://money._

> > (http://money.http//money.)

> > <_WBhttp://money.WBhttp://money.WBhttp:/_

> > (wbhttp://money.http://monhttp://money.) <WBhttp_

> > >

> > >

> >

> (_http://money.http://money.<WBhttp://money.http://monhttp://money.

> <WBhttp_

> >

> >

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> > )

> > > )

> > > >

> > > >

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

> > > > removed]

> > > >

> > > >

> > >

> > > Check out my blog:

> > >

> > __http://princessmatihttp://princessmhttp://prince_

> > (http://princessmatihttp//princessmhttp://prhtt_)

> > >

> > (_http://princessmatihttp://princessmhttp://prhttp_

> > (http://princessmatildalovestostamp.blogspot.com/) )

> >

> > >

> > >

> >

> __________________________________________________________

> > > Be a better pen pal.

> > > Text or chat with friends inside Yahoo! Mail. See

> > > how.

> > > __http://overview.http://overview._

> > (http://overview.http//overhttp_)

> > > (_http://overview.http://overhttp_

> > (http://overview.mail.yahoo.com/) )

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ************ ******** ********

> > ************<WBR>***

> > > AOL's list of 2007's hottest

> > > products.

> > >

> >

> (_http://money.http://money.<WBhttp://money.http://monhttp://money.

> <WBhttp_

> >

> >

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> > )

> > >

> > >

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

> > > removed]

> > >

> > >

> >

> > Check out my blog:

> > _http://princessmatihttp://princessmhttp://prhtt_

> > (http://princessmatildalovestostamp.blogspot.com/)

> >

> >

> __________________________________________________________

> > Never miss a thing. Make Yahoo your home page.

> > _http://www.yahoo.http://w_

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> >

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> >

> > **************************************Check out

> > AOL's list of 2007's hottest

> > products.

> >

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> >

> >

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> > removed]

> >

> >

>

> Check out my blog: http://princessmatildalovestostamp.blogspot.com

>

> __________________________________________________________

> Be a better sports nut! Let your teams follow you

> with Yahoo Mobile. Try it now.

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Kathy,

The way I gathered it from my uro was that the reason he does a kidney

ultrasound every 2 years as a " maintenance " plan (so-to-speak) for people

with SCI/D is that while cathing does " fix " our problems and should

prevent/stop/reverse any kidney damage such as reflux, it is not perfect.

It's not perfect. It's not your body working perfectly. No one cath's

perfectly. It is not sterile. No one goes exactly when they should --

ESPECIALLY if you don't have feeling. In that case, you void on a time

schedule. And most people I know kind of skip out on that whole limiting

your intake part of cathing. If they are thirsty, they drink. If they feel

like a grande-super-duper-quadruple-expresso-shot-full-caff-mochaccino from

Starbucks, they indulge themselves. The problem is that it kind of screws

the pooch with the whole timed void thing (for those who cannot feel).

Basically, cathing is a pretty imperfect science at best when humans are

performing it and trying to live their lives as normally as possible. So,

the point of the kidney ultrasound it so make sure that there isn't any

damage going on undetected -- before you see changes in bloodwork, feel

pain, experience changes in cathing, etc. If my uro saw some kind of

changes on the kidney ultrasound, then he would send me for a new urodynamic

study (among other tests) -- to see if pressures in my bladder were getting

higher, if I was no longer emptying fully (or even less not fully than

before) -- basically find out if there were some changes in the urodynamics

that could have caused the changes in the kidneys that he can correct with a

change in the cathing regimine -- or if it is something more involved than

that.

It seems like uro's that do annual or bi-annual testing either do a renal

ultrasound or urodynamic study. Most don't do both. Urodynamic studies do

tell the person if the cathing they have been doing has been keeping their

bladder pressures in check. But when the doc's see the good results on the

urodynamic studies, they assume that the kidneys are equally healthy. While

I can see the rationale behind that (good bladder should mean good kidneys

upstream), there is no guarantee. There is more than reflux that can damage

kidneys.

He doesn't draw any regular bloodwork. OxybutinXL isn't one of those " blood

level " kind of meds. My cardiologist, PCP draw enough blood that he would

be covered anyway. I know some people say that their uro's do an annual lab

draw. If you have an annual physical with your PCP, that labwork should

cover it. I've only had 2 urodynamic studies -- one after between surgery 1

and 2 and one after surgery 3 right before I was discharged from rehab. I

never found much use for either of them. They basically just told me what I

already knew (I can't pee!!! LOL).

As far as in the school, I don't think any of this would come out. As far

as the schools are concerned, it is all about cathing -- and getting kids to

cath themselves (when age appropriate) and actually getting them to do it

and do it properly. As far as the school, the school RN and say, the

parapro assigned to the kids with SB, really all they need to know/focus on

is the cathing. Cuz, I think you're right in the sense that if you cath

properly, everything should be okay. But as I explained above, there are

just way too many variables that go into renal health. Cathing is the only

one we have control over. Actually, I guess -- intake. I'm surprised that

the RNs are not told to focus on monitoring intake with the kids who have no

feeling. ESPECIALLY with kids. I mean, if you're on a timed void schedule

and you go and drink 1 can of regular coke -- you can forget it. That

caffeine will fill your bladder irregularly. Or, if the child goes and

drinks 4 glasses of water (and its not after PE where they lost fluid

through sweating) then you can through the value of the timed void out the

window again. That is how damage occurs despite a person's best efforts. I

imagine it can be especially difficult with children. I never realized how

valuable the feeling in my bladder was until I was out with a friend and

realizing how she really has to watch every drop of liquid she drinks and

the amount of caffeine or alcohol -- she has to completely alter her

cathing. So do I, but I know when I have to pee. She doesn't -- it will be

a wet mess.

I hope I explained this well enough. As always, just ask questions if I

didn't. Did you have a good Thanksgiving? I got to spend 3 days at an

AWESOME mountain resort -- and only $25! Fully accessible. It was so

beautiful. If anyone is interested in a mountain resort that is accessible

(for the most part -- it is para accessible) is Brasstown Valley Mountain

Resort in the N. GA mountains. They have accessible horseback riding,

tennis (need your own tennis chair), golf, (I think they have an accessible

cart - double check if you are interested). miles of trails (much is paved

or flat dirt -- I didn't go on them b/c these were the 3 days all year that

GA had rain when we were up there).

Jenn

> Hey Jenn,

>

> My uro's have never done blood work or anything except wanted to perform

> urodynamics before untetherings for baselines.

>

> I feel quite stupid - but what would happen to us, just because we

> self-cath, that would need ultraounds and blood work - in other words, I

> thought the cathing stopped the issue of possible renal failure, etc.? No?

> Should I mention something to my uro the next time I go?

>

> I've worked with children who have SB (I teach sp.ed.), but I was never

> told anything about that part of the health as far as risks except that

> being told directions for cathing (ie: sent to nurse).

>

> Thanks,

>

> Kathy

>

> Re: urinating questions-

>

> ,

>

> I totally understand hating feeling like your " job " is being a patient.

> But

> realize that most people with SB/SCI/SCD died of renal failure, so

> urological/kidney issues are not the area to put on the back burner. The

> blood work is good, but my last visit to the uro, he didn't recommend

> regular urodynamics (which we all hate), but he did recommend regular

> kidney

> ultrasounds every 2 years. That might be something you want to add to your

> blood work checks just to be sure there are no changes in your kidneys.

> You

> are only going to see changes in your blood work once there is a problem.

> The ultrasound can show changes in your kidneys early, before it has

> progressed to the point that you can see changes in your blood work. Just

> something to think about and passing along what my uro said. But I TOTALLY

> get feeling like you go to " work " everyday seeing docs. I typically have a

> least 1 doc appointment a week, and with 2 PT appointments each week for 1

> 1/2 hrs, I really do feel like being a patient is my career as of late.

>

> Jenn

>

> On Nov 25, 2007 12:14 AM, Weaver <mzw4@...<mzw4%40yahoo.com>>

> wrote:

>

> > I worry for my own health because there are certain

> > things I just don't feel like dealing with. Urological

> > issues are just one area. I hate seeing doctors,

> > playing the professional patient. When cathing fixed

> > my peeing problem, that was it for me. No more urology

> > stuff. I do get blood work done occasionally to check

> > for renal issues, but I have no desire to let them

> > stick electrodes and probes on me and in me to tell me

> > what I already know - I have no bladder function.

> >

> > But when a child has a chance to get some back, I

> > certainly don't want to be passing along bad info.

> > Thanks for helping me, Randee!!

> >

> >

> >

> >

> > --- Randeejae@... <Randeejae%40aol.com> <Randeejae%40aol.com> wrote:

> >

> > >

> > > Yes, you are right! Randee

> > >

> > >

> > >

> > > In a message dated 11/25/2007 12:02:20 A.M. Eastern

> > > Standard Time,

> > > mzw4@... <mzw4%40yahoo.com> <mzw4%40yahoo.com> writes:

> > >

> > >

> > >

> > >

> > > Randee, I'm being dense. I know it. I see that the

> > > tech told her that her daughter gets a full feeling

> > > very quickly, but can hold her urine until her

> > > bladder

> > > fills to normal capacity, and not leak. And the

> > > report the NP gave her said she retains some urine,

> > > which is a whole different issue from what the tech

> > > brought up.

> > >

> > > What am I missing? I get obsessive about things

> > > like

> > > this, and if you think I'm just being difficult,

> > > let

> > > me know. I really don't mean to be difficult. I

> > > seriously don't see that both cases can't be true,

> > > and

> > > if I'm missing something, I just want to know what.

> > >

> > >

> > >

> > > --- _Randeejae@... <_Randeejae%40aol.Ran> <_Randeejae%40aol.Ran>_

> (mailto:Randeejae@... <Randeejae%40aol.com><Randeejae%40aol.com>)

> >

> > > wrote:

> > >

> > > >

> > > > The descrepency is what Beth was told by the tech

> > > > after the exam was

> > > > complete versus the report that she received from

> > > > the Nurse Practitioner. Randee

> > > >

> > > >

> > > >

> > > > In a message dated 11/24/2007 11:15:49 P.M.

> > > Eastern

> > > > Standard Time,

> > > > _mzw4@... <_mzw4%40yahoo.com> <_mzw4%40yahoo.com>_ (mailto:

> mzw4@... <mzw4%40yahoo.com><mzw4%40yahoo.com>)

>

> > writes:

> > > >

> > > >

> > > >

> > >

> > > > >

> > > > > In a message dated 11/24/2007 10:47:19 P.M.

> > > > Eastern

> > > > >

> > > > > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> > > > months,

> > > > > TC release in May 2007. At 14 months her VCUG

> > > and

> > > > > kidney Ultrasounds can back normal. Kidneys

> > > shape

> > > > > and

> > > > > function normal and no reflux noted, she did

> > > have

> > > > > stage 1 on left and stage 2 on right when she

> > > was

> > > > 6

> > > > > months but at 14 months resolved. ok!!!! my

> > > > > questions

> > > > > are::::

> > > > >

> > > > > Is this normal procedures for the uro to

> > > > follow????

> > > > >

> > > > > Should I be worried about her kidneys???? or

> > > let

> > > > > time

> > > > > tell ????

> > > > >

> > > > > The urologist in my town mainly see the nurse

> > > > > practitioner- --Do anyone else have this going

> > > > > on???

> > > > >

> > > > > Im curious what time frame of knowing if she

> > > will

> > > > > regain full control of her bladder again???

> > > > >

> > > > > Im confused---the urodynamic study tech told

> > > when

> > > > > about 20ml was inserted Kenzie started feeling

> > > > the

> > > > > urge to pee, however she did hold it and was

> > > > > continued

> > > > > to fill her to normal capacity of a child her

> > > age

> > > > > and

> > > > > weight. She was able to hold it with little

> > > > > leakage.

> > > > > That what the tech said.

> > > > > BUT::::: the Nurse practitioner said she is

> > > > > retaining

> > > > > urine------can someone resolve form this with

> > > > > time?????

> > > > >

> > > > > Any advice!!!!!! Beth

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ************ ******** ********

> > > > ************<WBR>***

> > > > > AOL's list of 2007's hottest

> > > > > products.

> > > > >

> > > >

> > > (__http://money.http://money._

> > > (http://money.http//money.)

> > > <_WBhttp://money.WBhttp://money.WBhttp:/_

> > > (wbhttp://money.http://monhttp://money.) <WBhttp_

> > > >

> > > >

> > >

> > (_http://money.http://money.<WBhttp://money.http://monhttp://money.

> > <WBhttp_

> > >

> > >

> > (

> http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> > > )

> > > > )

> > > > >

> > > > >

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

> > > > > removed]

> > > > >

> > > > >

> > > >

> > > > Check out my blog:

> > > >

> > > __http://princessmatihttp://princessmhttp://prince_

> > > (http://princessmatihttp//princessmhttp://prhtt_)

> > > >

> > > (_http://princessmatihttp://princessmhttp://prhttp_

> > > (http://princessmatildalovestostamp.blogspot.com/) )

> > >

> > > >

> > > >

> > >

> > __________________________________________________________

> > > > Be a better pen pal.

> > > > Text or chat with friends inside Yahoo! Mail. See

> > > > how.

> > > > __http://overview.http://overview._

> > > (http://overview.http//overhttp_)

> > > > (_http://overview.http://overhttp_

> > > (http://overview.mail.yahoo.com/) )

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ************ ******** ********

> > > ************<WBR>***

> > > > AOL's list of 2007's hottest

> > > > products.

> > > >

> > >

> > (_http://money.http://money.<WBhttp://money.http://monhttp://money.

> > <WBhttp_

> > >

> > >

> > (

> http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> > > )

> > > >

> > > >

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

> > > > removed]

> > > >

> > > >

> > >

> > > Check out my blog:

> > > _http://princessmatihttp://princessmhttp://prhtt_

> > > (http://princessmatildalovestostamp.blogspot.com/)

> > >

> > >

> > __________________________________________________________

> > > Never miss a thing. Make Yahoo your home page.

> > > _http://www.yahoo.http://w_

> > > (http://www.yahoo.com/r/hs)

> > >

> > >

> > >

> > >

> > >

> > > 39

> > >

> > >

> > > **************************************Check out

> > > AOL's list of 2007's hottest

> > > products.

> > >

> > (

> http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

> > >

> > >

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

> > > removed]

> > >

> > >

> >

> > Check out my blog: http://princessmatildalovestostamp.blogspot.com

> >

> > __________________________________________________________

> > Be a better sports nut! Let your teams follow you

> > with Yahoo Mobile. Try it now.

> > http://mobile.yahoo.com/sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ

> >

> >

>

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Hey Jenn,

Thanksgiving was great because our son was home from college, but because I just

started teaching again, I was sick with the flu, icky eye (conj.), and

everything else the kids had the previous week ... these first few months of

teaching are so wonderful while you build your immunities back up.

What has scared me with cathing is the introduction of a foreign matter to the

bladder. The uro that initially diagnosed the neurogenic bladder had told me

that although cathing would allow me to empty my bladder, instead of the 3-5

tbls that I was able to force out on my own (and now I can't force anything

unless it's over full). But, he had said that the foreign body introduced every

day as we do can thicken the bladder wall (due to the bladder fighting the

introduction or however you would explain this thickening) and it " can " be the

cause of bladder cancer for the same reason. That scared me, but no other

doctor, beyond the thickening of the bladder wall has confirmed the cancer

statement.

I would LOVE to go to that mountain retreat. We have actually been looking for

an affordable nice play to go for a weekend in the Blue Ridge mountains (about

45 minutes from our home). Every place that looks nice is over 300 a night.

Would you send me the information or is it only for people with physical

disabilities way beyond what I have?

Thanks for the explanations Jenn - I should take better care of myself given

what is wrong with me, but I just get so very tired of all the doctor appts.,

tests, etc. I've only been doing this for ten/eleven years, I don't know how

those that have been doing this for their life continue to keep doctor appts and

take such good care of themselves....

Kathy

Re: urinating questions-

>

> ,

>

> I totally understand hating feeling like your " job " is being a patient.

> But

> realize that most people with SB/SCI/SCD died of renal failure, so

> urological/kidney issues are not the area to put on the back burner. The

> blood work is good, but my last visit to the uro, he didn't recommend

> regular urodynamics (which we all hate), but he did recommend regular

> kidney

> ultrasounds every 2 years. That might be something you want to add to your

> blood work checks just to be sure there are no changes in your kidneys.

> You

> are only going to see changes in your blood work once there is a problem.

> The ultrasound can show changes in your kidneys early, before it has

> progressed to the point that you can see changes in your blood work. Just

> something to think about and passing along what my uro said. But I TOTALLY

> get feeling like you go to " work " everyday seeing docs. I typically have a

> least 1 doc appointment a week, and with 2 PT appointments each week for 1

> 1/2 hrs, I really do feel like being a patient is my career as of late.

>

> Jenn

>

> On Nov 25, 2007 12:14 AM, Weaver <mzw4@...<mzw4%40yahoo.com>>

> wrote:

>

> > I worry for my own health because there are certain

> > things I just don't feel like dealing with. Urological

> > issues are just one area. I hate seeing doctors,

> > playing the professional patient. When cathing fixed

> > my peeing problem, that was it for me. No more urology

> > stuff. I do get blood work done occasionally to check

> > for renal issues, but I have no desire to let them

> > stick electrodes and probes on me and in me to tell me

> > what I already know - I have no bladder function.

> >

> > But when a child has a chance to get some back, I

> > certainly don't want to be passing along bad info.

> > Thanks for helping me, Randee!!

> >

> >

> >

> >

> > --- Randeejae@... <Randeejae%40aol.com> <Randeejae%40aol.com> wrote:

> >

> > >

> > > Yes, you are right! Randee

> > >

> > >

> > >

> > > In a message dated 11/25/2007 12:02:20 A.M. Eastern

> > > Standard Time,

> > > mzw4@... <mzw4%40yahoo.com> <mzw4%40yahoo.com> writes:

> > >

> > >

> > >

> > >

> > > Randee, I'm being dense. I know it. I see that the

> > > tech told her that her daughter gets a full feeling

> > > very quickly, but can hold her urine until her

> > > bladder

> > > fills to normal capacity, and not leak. And the

> > > report the NP gave her said she retains some urine,

> > > which is a whole different issue from what the tech

> > > brought up.

> > >

> > > What am I missing? I get obsessive about things

> > > like

> > > this, and if you think I'm just being difficult,

> > > let

> > > me know. I really don't mean to be difficult. I

> > > seriously don't see that both cases can't be true,

> > > and

> > > if I'm missing something, I just want to know what.

> > >

> > >

> > >

> > > --- _Randeejae@... <_Randeejae%40aol.Ran> <_Randeejae%40aol.Ran>_

> (mailto:Randeejae@... <Randeejae%40aol.com><Randeejae%40aol.com>)

> >

> > > wrote:

> > >

> > > >

> > > > The descrepency is what Beth was told by the tech

> > > > after the exam was

> > > > complete versus the report that she received from

> > > > the Nurse Practitioner. Randee

> > > >

> > > >

> > > >

> > > > In a message dated 11/24/2007 11:15:49 P.M.

> > > Eastern

> > > > Standard Time,

> > > > _mzw4@... <_mzw4%40yahoo.com> <_mzw4%40yahoo.com>_ (mailto:

> mzw4@... <mzw4%40yahoo.com><mzw4%40yahoo.com>)

>

> > writes:

> > > >

> > > >

> > > >

> > >

> > > > >

> > > > > In a message dated 11/24/2007 10:47:19 P.M.

> > > > Eastern

> > > > >

> > > > > BRIEF HISTORY: my daughter is 3yrs old, IA 4

> > > > months,

> > > > > TC release in May 2007. At 14 months her VCUG

> > > and

> > > > > kidney Ultrasounds can back normal. Kidneys

> > > shape

> > > > > and

> > > > > function normal and no reflux noted, she did

> > > have

> > > > > stage 1 on left and stage 2 on right when she

> > > was

> > > > 6

> > > > > months but at 14 months resolved. ok!!!! my

> > > > > questions

> > > > > are::::

> > > > >

> > > > > Is this normal procedures for the uro to

> > > > follow????

> > > > >

> > > > > Should I be worried about her kidneys???? or

> > > let

> > > > > time

> > > > > tell ????

> > > > >

> > > > > The urologist in my town mainly see the nurse

> > > > > practitioner- --Do anyone else have this going

> > > > > on???

> > > > >

> > > > > Im curious what time frame of knowing if she

> > > will

> > > > > regain full control of her bladder again???

> > > > >

> > > > > Im confused---the urodynamic study tech told

> > > when

> > > > > about 20ml was inserted Kenzie started feeling

> > > > the

> > > > > urge to pee, however she did hold it and was

> > > > > continued

> > > > > to fill her to normal capacity of a child her

> > > age

> > > > > and

> > > > > weight. She was able to hold it with little

> > > > > leakage.

> > > > > That what the tech said.

> > > > > BUT::::: the Nurse practitioner said she is

> > > > > retaining

> > > > > urine------can someone resolve form this with

> > > > > time?????

> > > > >

> > > > > Any advice!!!!!! Beth

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ************ ******** ********

> > > > ************<WBR>***

> > > > > AOL's list of 2007's hottest

> > > > > products.

> > > > >

> > > >

> > > (__http://money.http://money._

> > > (http://money.http//money.)

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