Re: Hello From Georgia

January 21, 2008

Where are you in Georgia, Yvette? My daughter's second and third surgeries

were at ish Rite in Atlanta. Awesome place if one must be in the

hospital. A consultation with your pediaric neurosurgeon would be wise I think

just to touch base if nothing else. Please let us know how that goes. Randee

In a message dated 1/21/2008 11:08:41 P.M. Eastern Standard Time,

yvettepile@... writes:

Hello Members,

My name is Yvette and my six year old son was diagnosed with

having a Lipomeningocele when he was a new born. He had a spinal

repair when he was 6 months old. Everything looked great after, but

my husband and I started noticing that he would use the bathroom to

urinate and as soon as he would leave the restroom he would have an

accident. The doctor's prescribed Ditropan for him which controls the

frequency but has not curbed the amount of accidents he has. On top

of his urination issue he also has very frequent poppy accidents. He

constantly says he doesn't feel it and I'm not sure if he does or

doesn't. is in kindergarten and Thank God I have found a

school that understands his situation and works with me, but I am

concerned for him as he gets older. Has anyone else in the group

experienced these sorts of problems? His present urologist constantly

tells me I have nothing to worry about, he says that is just

fine and I need not worry, but I don't know what to do to help him.

We have resorted to pull ups again and he hates it, but with the

frequent accidents I didn't know what else to do. Any information

someone can give will be greatly appreciated.

Thank you,

Yvette &

**************Start the year off right. Easy ways to stay in shape.

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January 22, 2008

Hi Yvette

My daughter Ellie was also born in GA with

lipomyelomeningocele in 1996. I am sorry that you are

living with some of the same things we are.

Ellie has never used anything like Ditropan because

her neurogenic bladder is not spastic. It has damage

to the nerves that signal the brain that it is full.

As a result, Ellie is unable to fully empty her

bladder even though she is able to urinate on the

toilet. SHe has no feeling --even when she has an

accident, she only realizes it because she feels

wetness after the fact. SHe does not feel it coming

out. This sometimes happens with feces, though

thankfully not often.

Ellie was diagnosed at age 7 and had cord release soon

after. At 10, after trying many toileting plans, the

urologist trained Ellie to self catheterize and that

has aleviated many of her difficulties, which included

frequent bladder infections in addition to the

wetting. SHe still has an occasional accident, but

only if she hasn't toileted in several hours. To keep

dry between potty breaks, she wears poise pads. I'm

not sure they are always wet, but they make her feel

more secure, so that's oaky. You may be able to have

your son use something like that for school if you can

figure out the #2 problem. We homeschool now, but I

know ELlie never had enough time to have a BM at

school so she would hold it--that can lead to

accidents in any child, but it is especially so for a

child with compromised nerves down there.

I know how distressing this can be and I am truly

sorry your son has to go through this. It breaks my

heart to see the embarassment and disappointment in

Ellie's eyes. I wish there was something I could do to

change her situation, but with the exception of

prayer, I am not sure there is.

As for your son's current symptoms, are they suddenly

different now than in the past? I would strongly

suggest you contact your Pediatric Neurosurgeon's

office and the Ped Urologist and ask for a visit with

both. When was the last time you had an MRI?

Uruodynamic testing?

The frequency of urination--especially right after

toileting, makes me think that your son either has a

bladder infection or that he is unable to empty his

bladder all the way, so what's happening is that the

" overflow " is coming out. It could also be that the

sphincter muscle in the bladder isn't closing fully

after her urinates. The only way to find out is to get

in to see the urologist. Having another MRI will also

give the Neuro a good look at what's going on in your

boy's spine today by comaprison to when he had his

release. Be sure he does the scan " with contrast. "

As for the docs telling you that you have nothing to

worry about--get another opinion. I have very strong

faith in my " gut " feelings and know from experience

not to ignore them. I knew from the moment I saw

Ellie's " birthmark " that there was something terribly

wrong--it just took 7 years of asking to get an

answer. She was Xrayed at birth, so there was

suspicion of an NTD, but at the time of her birth MRI

was very new. They stopped looking when no bone

deformity was found on the X ray and we were told the

hemangioma would go away by age 7....

You can never be too pushy or have too many questions.

Write everything down that you need to have answered.

Keep reassuring your son that you will help him

however you can and be sure he knows that this is not

his fault. His body just works differently.

Best wishes,

Mindy

--- yvettepile wrote:

> Hello Members,

>

> My name is Yvette and my six year old son

> was diagnosed with

> having a Lipomeningocele when he was a new born. He

> had a spinal

> repair when he was 6 months old. Everything looked

> great after, but

> my husband and I started noticing that he would use

> the bathroom to

> urinate and as soon as he would leave the restroom

> he would have an

> accident. The doctor's prescribed Ditropan for him

> which controls the

> frequency but has not curbed the amount of accidents

> he has. On top

> of his urination issue he also has very frequent

> poppy accidents. He

> constantly says he doesn't feel it and I'm not sure

> if he does or

> doesn't. is in kindergarten and Thank God I

> have found a

> school that understands his situation and works with

> me, but I am

> concerned for him as he gets older. Has anyone else

> in the group

> experienced these sorts of problems? His present

> urologist constantly

> tells me I have nothing to worry about, he says that

> is just

> fine and I need not worry, but I don't know what to

> do to help him.

> We have resorted to pull ups again and he hates it,

> but with the

> frequent accidents I didn't know what else to do.

> Any information

> someone can give will be greatly appreciated.

>

> Thank you,

>

> Yvette &

>

January 22, 2008

My son is 5 and has a lipomylomeningocele. He has the exact problems yours does.

We just went to the urologist last week and he confirmed via ultrasound that my

son is only empty a portion of his bladder. He suggested we lower the dosage of

Ditropan from 3.5 ml to 1 ml to see if that helps him contract his bladder more,

without increasing the amount of leakage or reflux. So far he has done a bit

better with emptying, but it's still early stages to tell if it's working. He

also has a difficult time with bms. It always helps if his stool is harder. He

seems to feel better if he is a bit constipated, so we push foods that induce

that. Just recently he has started making more bms in the toilet, though nothing

in our routine changed, so I'm hoping he is just getting old enough to sense it.

Our urologist said that if our son isn't able to start staying dry, we may have

to go to self cathing, which I dread in one so young.

My son will be going to kindergarten next year. How is your school handling the

situation, and who did you meet with and what kind of arrangments did you make

to help cope with this?

Best of luck

-Shea

Mother of Cole, 5

Hello From Georgia