Re: Tethered Cord and Behaviors in young children

[Guest guest]

Just speaking as someone who has a tethered cord, I would say we all

have suffered from behavioural problems at one point or another but

as a child your daughter may not have developed coping mechanisms

for her condition.

I get angry that I have to leave in pain, with just a glimmer of

normalcy in my life, which I only really gain from using medications

to control pain. Sometimes my family and friends notice that I am

withdrawn or thinking to much and not as outgoing as I used to be.

Also people can get depressed when their life becomes a continuos

trip to the doctor.

> My 6 year old daughter has had her spine released twice. Once at

age

> 4 months and again in November 2003 she was 5 at the time. She

also

> has one kidney. She was born with one good kidney and one bad

kidney.

> The bad kidney was removed so that it didn't cause an infection in

> her body.

>

> In the past 3 years she has had continual UTIs which has given her

a

> small scar on her kidney. The UTIs were also one of the reasons

why

> they did the second release surgery.

>

> She also catheterizes and has an enima every night.

>

> We have a lot of behavior problems with her.

>

> Do many of you find that your kids with tethered cord have

behavior

> problems? What behavior problems and do you see a cause of them?

[Guest guest]

--- What you just stated about pain would explain to me the reason

for my daughter's high pain tolerance. Which I have always suspected.

Whenever I ask her if she is in pain she says " NO! "

She acts inmature for her age. She also acts out a lot!!!!! We are

seeing professional help for her bahavior, but at times she can be

unbearable.

In tetheredspinalcord , " davidbrian232000 "

<davidbrian232000@y...> wrote:

> Just speaking as someone who has a tethered cord, I would say we

all

> have suffered from behavioural problems at one point or another but

> as a child your daughter may not have developed coping mechanisms

> for her condition.

>

> I get angry that I have to leave in pain, with just a glimmer of

> normalcy in my life, which I only really gain from using

medications

> to control pain. Sometimes my family and friends notice that I am

> withdrawn or thinking to much and not as outgoing as I used to

be.

> Also people can get depressed when their life becomes a continuos

> trip to the doctor.

>

>

> > My 6 year old daughter has had her spine released twice. Once at

> age

> > 4 months and again in November 2003 she was 5 at the time. She

> also

> > has one kidney. She was born with one good kidney and one bad

> kidney.

> > The bad kidney was removed so that it didn't cause an infection

in

> > her body.

> >

> > In the past 3 years she has had continual UTIs which has given

her

> a

> > small scar on her kidney. The UTIs were also one of the reasons

> why

> > they did the second release surgery.

> >

> > She also catheterizes and has an enima every night.

> >

> > We have a lot of behavior problems with her.

> >

> > Do many of you find that your kids with tethered cord have

> behavior

> > problems? What behavior problems and do you see a cause of them?

[Guest guest]

--- My daughter seems to take going to the doctors all the time very

well. I am the one who can have a hard time going to the doctors. I

haven't worked for 2 years, because of all of the doctor's and test

appointments. Then she was put on a Clean Self Cath. program. We (my

husband and I) along with the babysitter didn't want the babysitter

to cath her. She just started cathing herself in January so I am

working part time.

She also realized for the first time that she was different. We have

always gone to pediatric doctors. Which of course have a lot of kids

in their offices. When she went to school she realized that she was

the only one who catheterized and the only one who went to the

doctors very often.

All of this explains why she would have behaviors, but I can't accept

them. She needs to be able to have a job some day. She needs to be

able to get along with her peers. She also needs to realize that

there are alot of people with disablilities and she isn't special.

Not to trivialize the tethered cord, but it could be worse.

In tetheredspinalcord , RickR <Rick_Lists@s...> wrote:

> At 08:00 PM 7/6/2004 +0000, davidbrian232000 wrote:

> >Also people can get depressed when their life becomes a continuos

> >trip to the doctor.

>

> Thats for sure <g>. A few years ago we had extensive discussions on

> depression and antidepressants, I would guess 3/4 of the people on

this

> list are on antidepressants.

>

> Rick

>

>

>

>

>

>

[Guest guest]

Perhaps you stated things better than I could. The part about your

son saying, " I'm retarted, what's wrong? "

There are two behavioral situations going on with my daughter. Well

maybe 3. Extremely jelous of her brother. Strong willed to the point

of overt definance. And acting out when it comes to enemas and other

medical stuff.

I can understand where the acting out about the medical stuff comes

from, but I am not sure if the other two situations are related to

the tethered cord. I think they are two seperate issues.

We are seeing a counselor, but I was wondering how common this is in

tethered cord patients. Or maybe the counselor needs to be going a

different direction.

> > >Also people can get depressed when their life becomes a

continuos

> > >trip to the doctor.

> >

> > Thats for sure <g>. A few years ago we had extensive

discussions on

> > depression and antidepressants, I would guess 3/4 of the people

on

> this

> > list are on antidepressants.

> >

> > Rick

> >

> >

> >

> >

> >

> >

[Guest guest]

I developed my tethered cord symptoms when I was 11, and I can tell

you that I looked at my brother and sister with extreme envy and

jelousy. I didn't understand why everything " normal " in life would

take extreme effort on my part and next to nothing on theirs.

Just wait until your daughter can do research and then she starts

asking you why you didn't take your vitamin B and folic acid when

you were pregnant with her.

The defiance may be simply explained, since I am an adult I am able

to say no to anyone over anything. I choose not to go out with

friends to do things because that may put me in a situation where I

am in a place where I can't control my pain levels. Don't know if

its the same with your daughter, but many a time I say no

to " normal " things because they cause me extra hardship.

> > > >Also people can get depressed when their life becomes a

> continuos

> > > >trip to the doctor.

> > >

> > > Thats for sure <g>. A few years ago we had extensive

> discussions on

> > > depression and antidepressants, I would guess 3/4 of the

people

> on

> > this

> > > list are on antidepressants.

> > >

> > > Rick

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi there,

This is really interesting. I am 33, but I can relate to everything your

daughter is experiencing.

1. Acting out over medical stuff: I freaked out when I had to have a spinal

tap three months ago. A friend had to hold both of my hands tight and

eventually they had to sedate me just to get me through it. I'm not

embarrassed to report this. I had simply had enough of medical procedures

and was exhausted and in pain. And I had the maturity to understand what was

happening and why it had to happen. I can't imagine how little people cope

with it.

2. Jealousy of her brother: I am the only one of 5 children who has this

problem. I am very envious of my siblings...who can jump up and move the way

normal people do, who don't deal with chronic pain, etc. Your little girl is

old enough to know that she has problems that he brother doesn't. That must

be very hard for her to understand and assimilate into her thought

processes.

3. Strong-willed to the point of defiance: I am no psychologist, but I know

that if we are powerless in one area of our lives, we might try to

compensate by over-controlling other areas. I have dealt with anger over the

fact that my activities are ruled by TCS and pain, and this anger sometimes

manifests itself as extreme stubborness (much to the chagrin of my family

and friends! ha ha).

You're wise to be working with a counsellor. TCS is a big issue for those

who have it and for their families. I'm not saying that all behavioral

issues can be blamed on TCS, but it should certainly be taken into account.

Give your little girl a hug from me.

Best of luck,

Debbie

Date: Thu, 08 Jul 2004 03:01:32 -0000

Subject: Re: Tethered Cord and Behaviors in young children

Perhaps you stated things better than I could. The part about your

son saying, " I'm retarted, what's wrong? "

There are two behavioral situations going on with my daughter. Well

maybe 3. Extremely jelous of her brother. Strong willed to the point

of overt definance. And acting out when it comes to enemas and other

medical stuff.

I can understand where the acting out about the medical stuff comes

from, but I am not sure if the other two situations are related to

the tethered cord. I think they are two seperate issues.

We are seeing a counselor, but I was wondering how common this is in

tethered cord patients. Or maybe the counselor needs to be going a

different direction.

[Guest guest]

I think what, atleast for some, you might be seeing is Frustration because

of the Symptoms. We get Moody because we don't feel good.........etc.

Of course, there could truely also be a Behavior problem, plus Tethered

Cord. I'm just saying that it might be frustration due to dealing with the

Symptoms.

Me

Nebraska, USA

mymocha@...

> Do many of you find that your kids with tethered cord have behavior

> problems? What behavior problems and do you see a cause of them?

>

[Guest guest]

Just wondering, when you monitor your daughter when she does normal

activities, do you ever notice her Grimacing? or making subtle

movements that would suggest she is in pain?

> Sometimes saying " No " is easier.

>

> In what ways do you feel she is immature? Just because she doesn't

admit she

> is in Pain?

>

> Me

> Nebraska, USA

> mymocha@c...

>

>

> > --- What you just stated about pain would explain to me the

reason

> > for my daughter's high pain tolerance. Which I have always

suspected.

> > Whenever I ask her if she is in pain she says " NO! "

> > She acts inmature for her age. She also acts out a lot!!!!!