Re: tc son pooping at recess

[Guest guest]

You should believe him when he says he can't feel it. No school aged child would

risk pooping their pants just to keep playing, not considering how embarrassing

it is to soil yourself in school, and especially not with him knowing he's at

risk for it. I used to wet my pants at school because of this and knowing the

things that would trigger it, I avoided those things at all costs. I was

mortified.

I've had the tests your son has had, and there has never been a single finding

regarding my complete inability to feel when I have to have a bowel movement. I

don't feel it until it's really late in the game (sometimes too late), and the

doctors have never found any reason why, so I carefully time that stuff. Your

son should be allowed to continue his voiding schedule in school to keep from

having accidents. Poor little guy. I can't imagine how horrible it must be for

him.

Hi,

My son has lipomyelomeningocel e and has had two untethering surgeries.

About 6 months ago he started pooping while at school while he was running

either on the playground or at gym. We brought him to his NS who had many tests

done including the anal shpincter pressure test and urodynamic testing. I was

told all his tests were within normail range and nothing too sinificant. I also

put him on a voiding schedule all summer which seemed to help. Now that school

has started, he is pooping again while running. He tells me that he can't feel

it when it comes out but I think he may just not want to stop playing. Is there

a difference with this condition when you are running as far as sensation. Also,

he has peed in his bed the last three nights in a row and we haven't had that

problem in a long time. Any advide would help!

Thanks,

[Guest guest]

Dear ,

It is very likely that your son is having problems with chronic constipation

due to his cord having been tethered. Having a tethered cord can affect the

motility of the colon and most definitely could have damaged his ability to

feel the need to have a BM. Constipation can also cause bed wetting.

Tethered cords can also cause bladder nerve damage.

The accidents during activity are probably due to the colon being full of

stool. A voiding schedule can only do so much - if the colon stays full it

can also stretch which makes it increasingly difficult to completely empty.

It is probably time to see a pediatric GI and urologist. You will probably

get better results if they are also associated with a spina bifida clinic

since they will be more familiar with the our kid's issues.

Bonnie McElroy

(Wife to , the most patient man on the planet, and Mom to (29)

and Amy (19) who was born with VACTERL Assoc. (V,A,E,R) and a tethered

spinal cord x 2, is a survivor of 32 surgical procedures, has a latex

allergy, neurogenic bladder (self-caths) and has a Chait cecostomy button

for bowel management. Amy was the Children's Miracle Network Alabama

Champion for 2007. She is a freshman at the University of Alabama!)

[Guest guest]

Hi

My daughter is 11 and has had her untethering surgery three years ago. Even

before surgery and now after she still has an occassional poo emergency and is

mortified. She also says she " just didn't know " that any came out. I don't know

that it is associated with running for her--there seems to be no pattern or

predictability. 

 

She will also have a stretch of nights where her pull up is really wet, but

mostly it is pretty dry. I have no idea why this happens, but I think it could

just be that as human beings, none of us have entirely predictable systems.

 

If your son says that running causes him to poo and he doesn' know it, that is a

limitation for him. i would be sure to get a 504 if you don't already, so the

gym/recess teachers are aware. I would ask with this that the school make

accomodations for your boy to be able to go to the bathroom before these

activities, and possibly avoiding future accidents.  I think the time void plan

could also be helpful, butif the nerves that tell him " you need to go " are

compromised, no amount of timing will help him to know.

 

i am so sorry this is happening to him (and to you.) It is very frustrating and

can be so embarassing to the child. Keep giving lots of hugs and  remember that

this isn't within his ability to control. THat one was difficult for me to

" get. " It takes a bunch of patience and a change in expectations to be

unconditionally forgiving and supportive when it comes to potty

accidents--especially when it happens on the couch.

 

Mindy

tc son pooping at recess

Hi,

My son has lipomyelomeningocel e and has had two untethering surgeries.

About 6 months ago he started pooping while at school while he was running

either on the playground or at gym. We brought him to his NS who had many tests

done including the anal shpincter pressure test and urodynamic testing. I was

told all his tests were within normail range and nothing too sinificant. I also

put him on a voiding schedule all summer which seemed to help. Now that school

has started, he is pooping again while running. He tells me that he can't feel

it when it comes out but I think he may just not want to stop playing. Is there

a difference with this condition when you are running as far as sensation. Also,

he has peed in his bed the last three nights in a row and we haven't had that

problem in a long time. Any advide would help!

Thanks,

[Guest guest]

I was untethered when I was 13 years old. When I returned to school the very

same thing used to happen to me. It still happens this day. I don't know it

happens until I smell something or feel some moisture. It is such a horrible

feeling. I hope your little guy can learn to cope with this.

>

> Subject: tc son pooping at recess

> To: tetheredspinalcord

> Date: Wednesday, September 24, 2008, 4:00 PM

> Hi,

> My son has lipomyelomeningocele and has had two untethering

> surgeries.

> About 6 months ago he started pooping while at school while

> he was running either on the playground or at gym. We

> brought him to his NS who had many tests done including the

> anal shpincter pressure test and urodynamic testing. I was

> told all his tests were within normail range and nothing too

> sinificant. I also put him on a voiding schedule all summer

> which seemed to help. Now that school has started, he is

> pooping again while running. He tells me that he can't

> feel it when it comes out but I think he may just not want

> to stop playing. Is there a difference with this condition

> when you are running as far as sensation. Also, he has peed

> in his bed the last three nights in a row and we haven't

> had that problem in a long time. Any advide would help!

> Thanks,

>

>

>

>

>

[Guest guest]

I just spoke to a ped specialist today about my 6 year old with the same issues.

The documentation she gave me from the SB Assoc. said running makes it harder

for a neurogenic sphincter to stay tight. We've tried having our teacher remind

our son to go potty right before recess to try and alleviate this situation.

Good luck!

-Shea

RE: tc son pooping at recess

Dear ,

It is very likely that your son is having problems with chronic constipation

due to his cord having been tethered. Having a tethered cord can affect the

motility of the colon and most definitely could have damaged his ability to

feel the need to have a BM. Constipation can also cause bed wetting.

Tethered cords can also cause bladder nerve damage.

The accidents during activity are probably due to the colon being full of

stool. A voiding schedule can only do so much - if the colon stays full it

can also stretch which makes it increasingly difficult to completely empty.

It is probably time to see a pediatric GI and urologist. You will probably

get better results if they are also associated with a spina bifida clinic

since they will be more familiar with the our kid's issues.

Bonnie McElroy

(Wife to , the most patient man on the planet, and Mom to (29)

and Amy (19) who was born with VACTERL Assoc. (V,A,E,R) and a tethered

spinal cord x 2, is a survivor of 32 surgical procedures, has a latex

allergy, neurogenic bladder (self-caths) and has a Chait cecostomy button

for bowel management. Amy was the Children's Miracle Network Alabama

Champion for 2007. She is a freshman at the University of Alabama!)

[Guest guest]

Well, I don't remember having accidents as a child but I know that I have had

some as an adult. In the car. Didn't even realize it until I smelled it. Very

Very embarassing. Thankfully that doesnt happen often, but I know to stay close

to a bathroom so when I get that sudden urge I can make it. I can't really run,

so I don't know if that makes it worse but it probably could. So sorry for your

little one   Hopefully the teachers will do what they can to help.

                                                                      Blessings,

Subject: Re: tc son pooping at recess

To: tetheredspinalcord

Date: Thursday, September 25, 2008, 3:57 AM

I just spoke to a ped specialist today about my 6 year old with the same issues.

The documentation she gave me from the SB Assoc. said running makes it harder

for a neurogenic sphincter to stay tight. We've tried having our teacher remind

our son to go potty right before recess to try and alleviate this situation.

Good luck!

-Shea

RE: tc son pooping at recess

Dear ,

It is very likely that your son is having problems with chronic constipation

due to his cord having been tethered. Having a tethered cord can affect the

motility of the colon and most definitely could have damaged his ability to

feel the need to have a BM. Constipation can also cause bed wetting.

Tethered cords can also cause bladder nerve damage.

The accidents during activity are probably due to the colon being full of

stool. A voiding schedule can only do so much - if the colon stays full it

can also stretch which makes it increasingly difficult to completely empty.

It is probably time to see a pediatric GI and urologist. You will probably

get better results if they are also associated with a spina bifida clinic

since they will be more familiar with the our kid's issues.

Bonnie McElroy

(Wife to , the most patient man on the planet, and Mom to (29)

and Amy (19) who was born with VACTERL Assoc. (V,A,E,R) and a tethered

spinal cord x 2, is a survivor of 32 surgical procedures, has a latex

allergy, neurogenic bladder (self-caths) and has a Chait cecostomy button

for bowel management. Amy was the Children's Miracle Network Alabama

Champion for 2007. She is a freshman at the University of Alabama!)

[Guest guest]

Hi ,

                    I have sufferred from occaasional

accidents since I was around 30 y.o and given anal shpincter pressure test and

urodynamic testing to be told there was no problem with normal readings!

Neeedless to say I was eventually diagnosed with TCS at 47 and dethered last

year. My control has no got worse or better after dethering but in common with

others I do my best to manage the situation. When I was more mobile in my 30's

I would always avoid exercise/running in the morning or after eating as this was

the time when most accidents would happen. I realise that this may not help but

wanted to let you know my experience re the test results.

All the best wishes to your family and son,

Barry 

tc son pooping at recess

Hi,

My son has lipomyelomeningocel e and has had two untethering surgeries.

About 6 months ago he started pooping while at school while he was running

either on the playground or at gym. We brought him to his NS who had many tests

done including the anal shpincter pressure test and urodynamic testing. I was

told all his tests were within normail range and nothing too sinificant. I also

put him on a voiding schedule all summer which seemed to help. Now that school

has started, he is pooping again while running. He tells me that he can't feel

it when it comes out but I think he may just not want to stop playing. Is there

a difference with this condition when you are running as far as sensation. Also,

he has peed in his bed the last three nights in a row and we haven't had that

problem in a long time. Any advide would help!

Thanks,

[Guest guest]

I'm 23 and also after eating if I am walking to much or to fast I have

a horrible time trying to hold in number two. Actally tonite was a

perfect example I'm in Disney and after dinner we were briskly

walking / jogging to the room cause I had to go I usually don't get a

sensation untill it's almost two late, and I was about ten seconds

from an accident. So he might not be realizing it until it's too late

anyway.

This message was sent from an iphone and may not display correctly.

On Sep 25, 2008, at 12:41 PM, BARRY COOPER <barry.cooper16@...

> wrote:

> Hi ,

> I have sufferred from occaasional accidents

> since I was around 30 y.o and given anal shpincter pressure test and

> urodynamic testing to be told there was no problem with normal

> readings! Neeedless to say I was eventually diagnosed with TCS at 47

> and dethered last year. My control has no got worse or better after

> dethering but in common with others I do my best to manage the

> situation. When I was more mobile in my 30's I would always avoid

> exercise/running in the morning or after eating as this was the time

> when most accidents would happen. I realise that this may not help

> but wanted to let you know my experience re the test results.

>

> All the best wishes to your family and son,

> Barry

>

> tc son pooping at recess

>

> Hi,

> My son has lipomyelomeningocel e and has had two untethering

> surgeries.

> About 6 months ago he started pooping while at school while he was

> running either on the playground or at gym. We brought him to his NS

> who had many tests done including the anal shpincter pressure test

> and urodynamic testing. I was told all his tests were within normail

> range and nothing too sinificant. I also put him on a voiding

> schedule all summer which seemed to help. Now that school has

> started, he is pooping again while running. He tells me that he

> can't feel it when it comes out but I think he may just not want to

> stop playing. Is there a difference with this condition when you are

> running as far as sensation. Also, he has peed in his bed the last

> three nights in a row and we haven't had that problem in a long

> time. Any advide would help!

> Thanks,

>

>

[Guest guest]

I have Spina Bifida Myelomeningocele and I too get these occasional

bowel 'urgencies'. In fact, I'd get them more often than I do, if I

didn't choose to remain constipated and then use Senna Liquid or

Pills to work my bowels.

I manage my bowels by keeping fairly constipated, then, every two

days or so, I take Senna Liquid to release what's there. About 6

hours later, I then take 2x2mg Immodium. This basically allows good

time for the bowel to empty and then it's time to tighten things up

and reduce motility again.

This isn't going to work for everybody, and if fact, may not be

recommended by a doctor or other medic. However, it's worked for me

over a good number of years and after many trials and tribulations,

in finding something that works (generally) and keeps me clean and

tidy.

I'm an adult of 49 and a wheelchair user, both these issues have to

be factored in to my information.

Scotland

>

> > Hi ,

> > I have sufferred from occaasional accidents

> > since I was around 30 y.o and given anal shpincter pressure test

and

> > urodynamic testing to be told there was no problem with normal

> > readings! Neeedless to say I was eventually diagnosed with TCS at

47

> > and dethered last year. My control has no got worse or better

after

> > dethering but in common with others I do my best to manage the

> > situation. When I was more mobile in my 30's I would always

avoid

> > exercise/running in the morning or after eating as this was the

time

> > when most accidents would happen. I realise that this may not

help

> > but wanted to let you know my experience re the test results.

> >

> > All the best wishes to your family and son,

> > Barry

> >

> > tc son pooping at recess

> >

> > Hi,

> > My son has lipomyelomeningocel e and has had two untethering

> > surgeries.

> > About 6 months ago he started pooping while at school while he

was

> > running either on the playground or at gym. We brought him to his

NS

> > who had many tests done including the anal shpincter pressure

test

> > and urodynamic testing. I was told all his tests were within

normail

> > range and nothing too sinificant. I also put him on a voiding

> > schedule all summer which seemed to help. Now that school has

> > started, he is pooping again while running. He tells me that he

> > can't feel it when it comes out but I think he may just not want

to

> > stop playing. Is there a difference with this condition when you

are

> > running as far as sensation. Also, he has peed in his bed the

last

> > three nights in a row and we haven't had that problem in a long

> > time. Any advide would help!

> > Thanks,

> >

> >

[Guest guest]

You both could be right. Or, it could be that he feels it, but can't control

it. Neurological conditions can play

tricks on you.

In terms of what you think it may be, if that is, what it is.........kids

will be kids. I do have to disagree with

what said about this in another post, in part...........while all

kids may not go through a stage like

that, many do. Even though I don't have kids of my own, I have seen it with

kids I am around and have

heard of this issue from others.

However, on the other hand, in case it is not that, I would keep an eye on

it, if it continues or gets worse, I

would get another opinion, if I were you.

Brande

mymocha@...

..> About 6 months ago he started pooping while at school while he was

running either on the playground or at gym. .. Now that school has started,

he is pooping again while running. He tells me that he can't feel it when it

comes out but I think he may just not want to stop playing. .

[Guest guest]

Well, I dont know but I do know I have pooped in my pants and not felt it at

all. One time I was driving down the road and " smelled " something bad, I thought

it was just something I passed on the road. I couldn't even feel it in my pants

or that I was sitting on it. The tricky part is that most of the time I can feel

it...who knows why sometimes and not others. Can he poop in the bathroom when he

wants too? Does he feel himself wiping himself? Cause sometimes I cant feel it

at all to wipe. I guess I am kind of sensitive to this....as when I was a child

I complained of back and leg pain and many other probs but no one listened and

always thought I was making stuff up. Finally, at age 36, it all made sense when

they found the TC.    

Subject: Re: tc son pooping at recess

To: tetheredspinalcord

Date: Thursday, January 22, 2009, 7:58 PM

You both could be right. Or, it could be that he feels it, but can't control

it. Neurological conditions can play

tricks on you.

In terms of what you think it may be, if that is, what it is.........kids

will be kids. I do have to disagree with

what said about this in another post, in part........ ...while all

kids may not go through a stage like

that, many do. Even though I don't have kids of my own, I have seen it with

kids I am around and have

heard of this issue from others.

However, on the other hand, in case it is not that, I would keep an eye on

it, if it continues or gets worse, I

would get another opinion, if I were you.

Brande

mymochacharter (DOT) net

...> About 6 months ago he started pooping while at school while he was

running either on the playground or at gym. .. Now that school has started,

he is pooping again while running. He tells me that he can't feel it when it

comes out but I think he may just not want to stop playing. .

[Guest guest]

Well, I am the mother of this young boy and I finally made him an appointment to

see his urologist. It turns out that his colon is so full of poo that it is

cutting off some nerve feeling in his bladder and bowels which is why he is

having the accidents. He is not relieving himself fully even though he thinks he

is. She has put him on a medication for his bladder spasms and wants me to give

him benefiber to help get the stool out more. We still need to keep him on a

voiding schedule as well. We also found out that his pe-pe hole is extremely

small and we are considering a meatotomy recommended by his urologist. Has

anyone ever had this done and can give me a little insight on whether or not

this is necessary?

Thanks,

From: Brande <mymochacharter (DOT) net>

Subject: Re: tc son pooping at recess

To: tetheredspinalcord@ yahoogroups. com

Date: Thursday, January 22, 2009, 7:58 PM

You both could be right. Or, it could be that he feels it, but can't control

it. Neurological conditions can play

tricks on you.

In terms of what you think it may be, if that is, what it is.........kids

will be kids. I do have to disagree with

what said about this in another post, in part........ ...while all

kids may not go through a stage like

that, many do. Even though I don't have kids of my own, I have seen it with

kids I am around and have

heard of this issue from others.

However, on the other hand, in case it is not that, I would keep an eye on

it, if it continues or gets worse, I

would get another opinion, if I were you.

Brande

mymochacharter (DOT) net

....> About 6 months ago he started pooping while at school while he was

running either on the playground or at gym. .. Now that school has started,

he is pooping again while running. He tells me that he can't feel it when it

comes out but I think he may just not want to stop playing. .

[Guest guest]

Great news ! Well, I mean that you followed through and found an answer

for you and your boy As for the meatotomy, I dont have experience with that,

sorry, but I'm sure the other Mom's will chime in if they do.  

From: Brande <mymochacharter (DOT) net>

Subject: Re: tc son pooping at recess

To: tetheredspinalcord@ yahoogroups. com

Date: Thursday, January 22, 2009, 7:58 PM

You both could be right. Or, it could be that he feels it, but can't control

it. Neurological conditions can play

tricks on you.

In terms of what you think it may be, if that is, what it is.........kids

will be kids. I do have to disagree with

what said about this in another post, in part........ ...while all

kids may not go through a stage like

that, many do. Even though I don't have kids of my own, I have seen it with

kids I am around and have

heard of this issue from others.

However, on the other hand, in case it is not that, I would keep an eye on

it, if it continues or gets worse, I

would get another opinion, if I were you.

Brande

mymochacharter (DOT) net

.....> About 6 months ago he started pooping while at school while he was

running either on the playground or at gym. .. Now that school has started,

he is pooping again while running. He tells me that he can't feel it when it

comes out but I think he may just not want to stop playing. .

[Guest guest]

I had and still have the same problem. Athletics activity could cause me bowl

problems, and if I were more active it would still be a problem. I went through

the same negative blame as mentioned in another post. I was 56 before they

" discovered " the tc.

One of the ways I deal with accidents is to stay somewhat constipated. I have

talked to others that do the same thing. The benifiber might do the exact

opposite of what the Dr. expects. He may have more accidents with softer feces.

If I am soft, even getting out of a chair can cause an accident. I often don't

know until I smell it. I don't know what has been the biggest problem for me, in

public. Wetting my pants or the involuntary bowl movements.

I would be interested in comments from others, but I prefer using the correct

medical terms like penis instead of pe-pe. For me, this other language, is

embarrassing and demeaning.

Woody

[Guest guest]

Yea Meds me too,

I was SB but just was not diagnosed with TC till the symptoms started really

interfering with my life. Pain, walking problems and the like. When I was

younger I was treated for many of the symptoms, and after a bad experience with

a urologist, I pretty much figured out my own treatments. When I would reach

out, like why do I get the headaches I do, it was pretty much mental problem and

just was trying to get out of doing what ever it was. Yep, way to go Doctor's.

Turns out I have and have probably had spinal fluid leaks all my life. In the

last few years, since finding out about TC, through groups, friends from groups,

and my own research with SB, TC, and CSF a lot of my life makes a lot more

sense. Sharing experiences on the groups has helped a lot as well.

Woody