Re: Help with insight into urodynamic test

[Guest guest]

Jen...Were you referred by another MD who might do a better job of answering

your questions about the results? randee

In a message dated 1/16/2008 7:22:14 P.M. Eastern Standard Time,

JenandLuli@... writes:

My 25 month old daughter had urodynamic testing done today.? I have a

question for those of you who have children who have had it done too.

The urologist that did it filled her bladder up with the solution and dye

and took x-rays about every minute leading up to when it was full.? He then

said the test was over and they unhooked my daughter from all the monitors.

I was confused because I thought the test was not only to fill but also to

see how her bladder empties.? He said that they " can't make kids void " so they

just filled her up to see how it looked.? He said her bladder looks smooth,

there was no reflux into the kidneys?and can be filled.? He also said that

when they 1st catheterised her she released " 20cc " but i heard the nurse say

" 30 " earlier - anyway - because she released that they knew she was voiding.?

Well, I knew she was voiding - but i thought the test was to see on film HOW

she was voiding.

Am I wrong? Did the dr really only do half the test? Can what he did REALLY

paint a good picture of what is happening neurologically with my daughter?

HELP ME if you can!!!

Jen and Luli - 24 months

Left tort - Right Plagio - Hanger Band Grad - CA

_http://www.babiesonhttp://wwhttp://wwhttp://w_

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[Guest guest]

I wouldn't trust a doctor who didn't do a better job

of explaining to you. Even if the doctor did it right

and did it all, though it sure doesn't sound to me

like he did the same test I had done, I wouldn't trust

his opinion simply because he didn't explain it to

you.

I'm interested in whether other parents have had this

experience. My uro test included attempting to void.

I can't void on my own. The first uro test I had, the

guy wasn't good. He didn't answer my questions and

didn't empty my bladder. I left the test with a

bladder full of liquid he put in there and knowing I

had problems voiding, he never had the nurse empty it.

I didn't trust anything his report said, even though

it was relatively close to what the second uro I saw

said. But the second uro, in addition to figuring out

I had a neurogenic bladder, actually did something to

help it - she prescribed self-cathing. So

definitely, if you don't feel you got what you needed

to get, find another doctor, get another opinion.

--- JenandLuli@... wrote:

> My 25 month old daughter had urodynamic testing done

> today.? I have a question for those of you who have

> children who have had it done too.

>

> The urologist that did it filled her bladder up with

> the solution and dye and took x-rays about every

> minute leading up to when it was full.? He then said

> the test was over and they unhooked my daughter from

> all the monitors.

>

> I was confused because I thought the test was not

> only to fill but also to see how her bladder

> empties.? He said that they " can't make kids void "

> so they just filled her up to see how it looked.? He

> said her bladder looks smooth, there was no reflux

> into the kidneys?and can be filled.? He also said

> that when they 1st catheterised her she released

> " 20cc " but i heard the nurse say " 30 " earlier -

> anyway - because she released that they knew she was

> voiding.? Well, I knew she was voiding - but i

> thought the test was to see on film HOW she was

> voiding.

>

> Am I wrong? Did the dr really only do half the test?

> Can what he did REALLY paint a good picture of what

> is happening neurologically with my daughter?

>

> HELP ME if you can!!!

>

>

> Jen and Luli - 24 months

> Left tort - Right Plagio - Hanger Band Grad - CA

> http://www.babiesonline.com/babies/j/jens5th/

>

>

________________________________________________________________________

> More new features than ever. Check out the new AOL

> Mail ! - http://webmail.aol.com

>

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

My son had that same test done last year when he was three. The doctor filled up

his bladder until it became uncomfortable, hoping my son would void on his own.

When he didn't the dr. then quickly cathed my son so he didn't have to stay

uncomfortable. The dr. said the pressure for most people with a full bladder is

10 cc's. My son's bladder got up to 30cc's of pressure as we waited, which is

why the dr. didn't continue waiting.

-Shea

Help with insight into urodynamic test

My 25 month old daughter had urodynamic testing done today.? I have a question

for those of you who have children who have had it done too.

The urologist that did it filled her bladder up with the solution and dye and

took x-rays about every minute leading up to when it was full.? He then said the

test was over and they unhooked my daughter from all the monitors.

I was confused because I thought the test was not only to fill but also to see

how her bladder empties.? He said that they " can't make kids void " so they just

filled her up to see how it looked.? He said her bladder looks smooth, there was

no reflux into the kidneys?and can be filled.? He also said that when they 1st

catheterised her she released " 20cc " but i heard the nurse say " 30 " earlier -

anyway - because she released that they knew she was voiding.? Well, I knew she

was voiding - but i thought the test was to see on film HOW she was voiding.

Am I wrong? Did the dr really only do half the test? Can what he did REALLY

paint a good picture of what is happening neurologically with my daughter?

HELP ME if you can!!!

Jen and Luli - 24 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

__________________________________________________________

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[Guest guest]

Jen,

I have to agree with . Docs with poor communication skills do both

themselves and their patients a terrible disservice. You need to contact

this MD (and you may get his RN) and ask all your questions and keep asking

until you have an explanation you feel comfortable with. Call first thing in

the morning and ask for some answers.

As far as my tests -- They inserted a catheter in the urethra and put some

electrodes around my rectum. The catheter was attached to an IV bag- style

of fluid. When the RN was ready, she opened the stopcock and the fluid

flowed in. She monitored the readings while the fluid went in. I was

supposed to tell her when I felt something. And then when I felt full and

then when I felt full to the point that I would normally go pee (or go cath

as in the second test). Once I told them that it had reached the point that

I would normally go pee/cath, they took the final readings and finished the

test. Upon the completion of the test, the catheter they had in that was

used to fill the bladder had another stopcock in the line. The RN turned

that and it opened up and all the fluid flowed out, as if it were a straight

cath. The fluid was emptied from my bladder within 10 minutes of me saying

that was when I would normally pee and I left the office with an empty

bladder. They didn't measure anything on the way out. All the measuring was

done before they emptied my bladder. Only once the test was complete and

they had all their measurements, they ended the test and turned the stopcock

and emptied my bladder. So, your MD may not have performed the test " wrong "

-- but he did not communicate the results or answer yoru questions

sufficiently. That is a problem.

Hopefully the RN (or the MD him/herself) can reassure you and answer all

your questions tomorrow.

Jenn

> My 25 month old daughter had urodynamic testing done today.? I have a

> question for those of you who have children who have had it done too.

>

> The urologist that did it filled her bladder up with the solution and dye

> and took x-rays about every minute leading up to when it was full.? He then

> said the test was over and they unhooked my daughter from all the monitors.

>

> I was confused because I thought the test was not only to fill but also to

> see how her bladder empties.? He said that they " can't make kids void " so

> they just filled her up to see how it looked.? He said her bladder looks

> smooth, there was no reflux into the kidneys?and can be filled.? He also

> said that when they 1st catheterised her she released " 20cc " but i heard the

> nurse say " 30 " earlier - anyway - because she released that they knew she

> was voiding.? Well, I knew she was voiding - but i thought the test was to

> see on film HOW she was voiding.

>

> Am I wrong? Did the dr really only do half the test? Can what he did

> REALLY paint a good picture of what is happening neurologically with my

> daughter?

>

> HELP ME if you can!!!

>

> Jen and Luli - 24 months

> Left tort - Right Plagio - Hanger Band Grad - CA

> http://www.babiesonline.com/babies/j/jens5th/

>

> __________________________________________________________

> More new features than ever. Check out the new AOL Mail ! -

> http://webmail.aol.com

>

>

[Guest guest]

I have had this test done and so have both of my children. I also worked at a

dr.'s office and use to assist with this test.

They filled my bladder to 500 cc and I did not feel the urge to go. They

determined that my brain did not get the message in the correct amount of time

(or at all) when my bladder was full. My son's outcome was the same except he

got to 600 cc. They said we have very large bladders because we don't pee very

often because we don't know we need to and it stretched our bladders.

My daughters outcome was different. She would have bladder spasms by 200 cc and

leak and she did not feel it.

We were all diagnosed with " neurogenic bladders "

Amy L.

" You must be the change you wish to see in the world " ~Gandhi

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[Guest guest]

In a message dated 1/16/2008 7:22:09 P.M. Eastern Standard Time,

JenandLuli@... writes:

The urologist that did it filled her bladder up with the solution and dye

and took x-rays about every minute leading up to when it was full.? He then

said the test was over and they unhooked my daughter from all the monitors.

I was confused because I thought the test was not only to fill but also to

see how her bladder empties.? He said that they " can't make kids void " so they

just filled her up to see how it looked.? He said her bladder looks smooth,

there was no reflux into the kidneys?and can be filled.?

Jen, did they also have a machine hooked up (with electrodes on the thighs,

abdomen and buttocks, and a rectal catheter also inserted) that was reading

the bladder pressures? If not, it sounds like your daughter had a VCUG not a

urodynamic test. The VCUG is a test to see (with contrast dye and xrays)

what the bladder shape is, and whether urine refluxes up the ureters to the

kidney when the bladder is full. It can also determine bladder capacity, as

they

can measure how much fluid they put into the bladder till it is full.

They do LIKE the kids to urinate during the test to see if this changes

anything, but if a child is not cooperating and in obvious discomfort the won't

make them... At your daughters age and with her probably scared and tense on

that table, she well may not have cooperated although they should have tried.

It is possible to combine the VCUG and urodynamics tests for a fluoroscopic

urodynamics test though, so if they hooked up the electrodes and monitored

bladder pressure that is what they did. has had two of those, and they

provide the most info all at one time but are more expensive and not all

hospitals are equipped to combine the tests.

The bladder looking smooth and no reflux to the kidneys is indeed a good

sign, as it means no structural damage has been done Also, kidney reflux

can

cause permanent damage to the kidneys, so you definitely wanted that ruled

out.

Are you concerned that your daughter is NOT fully voiding? Does she get

lots of UTIs or are you just worried about a neurogenic bladder in general?

CAN

she pee on demand when you ask her yet? If so (or if you are willing to sit

around waiting for her to pee in a diaper) they can do a simple bladder

ultrasound after she urinates with a special machine to see if there is any

post

void residual (retained urine) when she has emptied to the point she thinks

she is done.

At her age though, it is still pretty hard to get a full picture, once she

is old enough to cooperate fully with the tests, you'll get better info. Our

doc is of the mentality that you cannot totally rule in or out a neurogenic

bladder in a borderline child with no obvious issues (reflux, spasming and

leaking, etc.) until they are old enough to fully cooperate and tell the docs

when they feel the urge to urinate and then are able to do it at will. Even if

the tests LOOK normal there could be sensation issues. It sounds like for

now you have ruled the more dangerous things out which is good.

Connie

Mom to Sara 16, Nicky 9 (GI issues, megacolon), and 7

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

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lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

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