Pain

[Guest guest]

I appreciate your insight, but I am sure that there is at least one person on

this list who can tell you that they dident stretch and in the long run it made

then worse. my daughter has never been put into any sort of harm. Nor have I

allowed anyone to continue to stretch her when she was hurting. As a matter of

fact, I have never used a stander untill now, that we have the standi dani,

because i knew it hurt her. But since you are speaking as the child, do you

remember when you were two years old? Do you remember how the pain was, or if

you made it up so that you could get attention just like any other 2 year old

does, sick or not. Im not trying to be confrontational with this subject, but

i was not saying that i think she is lieing about the pain when she is

streched. I AM saying that i do not think that she is always being truthful

about her feet hurting her when no body is touching them. I do believe that

they hurt when she is being streched. I hate to

put that pain upon her, and I do not allow it to go very far, but if she is

ever to fight this disease head on than Myself and her need to fight the good

fight as strongly as we can now and as long as it takes to keep her as healthy

as possible untill a cure is found.

Chrissy

cenlared <cenlared@...> wrote: Sorry, but these statements bother

me:

" And when you stretch them she cries, which is to be expected.... I

wonder if there is a pain, or if this is just her way to get some more

attention from mommy..... She unfortunately is not old enough for me

to be sure if she is really hurting or not. "

Speaking as the child ---

She is hurting.

An adult stretching a child hurts. Necessary or not, it hurts. And

the child doesn't understand why it is necessary. (I never did )

If a child later says an area that has been exercised hurts, it hurts.

Maybe a stretching session got a little enthusiastic. If the child

resists, tensing up, the harder it is to stretch, the more it hurts.

etc.

I'm not criticizing your parenting, because if you weren't concerned

you wouldn't have asked. It's wonderful that you asked. But it was

just on this board that we are not believed when we say STOP, or when

we say something is wrong. Imagine being a child who's told this is

for your own good. . . But it HURTS.

Been there.

P. S. I'm a nice Christian lady now. ...But I still despise

physical therapists. Never did anything but hurt this little girl.

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[Guest guest]

I wouldn't suggest you would put your child in harm's way, but a 2-3

year old can't know that.

2 more points

If a child that young could consistently complain about the same pain

just to get attention, who cares? Give her the attention. There will

be enough times she has to be a tough warrior. Let her, sometimes,

get away with it. Let her be a kid, not a disabled kid.

For a disabled child to grow up not intimidated by the medical

establishment she has to feel she is believed about what she is

feeling in her own body. Yes, she's too young now, but as you raise

her instill confidence.

Granted, she might be smart enough to try to manipulate you. As mom

you would know best about that. I realize you can't get into that

kind of pattern.

But what if her feet really hurt?

[Guest guest]

For us, I can tell if Brett is " faking to get out of stretching " or truly in

pain and always have been able to. On days, when he is tender - stretches are

still mandatory- but we compromise and cut the reps in half. If he has truly had

an incident and is in pain (as opposed to tender) we take a break for a day or

two and then start back with half reps and then go to our normal routine. I feel

that there will be a time soon enough when he gets older and I won't be able to

stretch him- but for now- I think the sooner I can prevent the contractures from

starting (or getting worse- he does have minor ones)- the better off he will be

as he grows older. As I have heard from many of you that contractures can be

painful- I think that is a fair assumption. But again- we compromise when he is

feeling out of sorts and don't overdo it. He doesn't complain so I think for us

at least- this works just fine. Also, he is still young enough that I can do

funny things while I am stretching him or talk really excitedly about Spiderman

stuff- to where he doesn't even pay attention and he will say - we are done? I

know every kiddo and every situation is different so I definitely appreciate all

points of views I have heard.

Kristal

Mom to Brett- SMA II- 6 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Re: Pain

I wouldn't suggest you would put your child in harm's way, but a 2-3

year old can't know that.

2 more points

If a child that young could consistently complain about the same pain

just to get attention, who cares? Give her the attention. There will

be enough times she has to be a tough warrior. Let her, sometimes,

get away with it. Let her be a kid, not a disabled kid.

For a disabled child to grow up not intimidated by the medical

establishment she has to feel she is believed about what she is

feeling in her own body. Yes, she's too young now, but as you raise

her instill confidence.

Granted, she might be smart enough to try to manipulate you. As mom

you would know best about that. I realize you can't get into that

kind of pattern.

But what if her feet really hurt?

A FEW RULES

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members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

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[Guest guest]

oh, gosh. i was tortured for years by such an assumption.

>

> Chrissy, not being a mother/mommy myself, but as woman who has gone

through

> this (as others likely have, but...) her " pain " may be just her way

of

> getting you to stop.

>

>

[Guest guest]

Thankyou e. So it is possible that her feet do hurt her when no one is

touching them. She gets these red spots that almost look like pressure sores,

but not as bad on the inner side of her foot sometimes. I think that it could

be her shoes thanks so much

CHrissy

PurplGurl3@... wrote:

Stretching does hurt, but it's necessary. When I got a little older, I

learned to tell the difference between the discomfort of healthy stretching,

and

the pain from somebody stretching too far or doing something wrong. Of course,

it didn't matter that I could tell the difference, because nobody ever

actually listened to me.

As for feet hurting when nobody is touching, it might be an exaggeration,

but it might not be. My brother, who also has SMA, has always had extremely

sensitive feet. By high school he had quit wearing shoes because of the pain.

Actually, my right foot is sensitive also. I get bad skin breakdown in a

certain spot on the bottom of my foot, because of the way my ankle turns in a

little and puts pressure on that spot. Depending on the shoes I'm wearing and

how I've been holding my feet, it can hurt pretty badly sometimes.

Just tossing some experiences out there...

-e

In a message dated 12/27/2005 3:03:00 P.M. Pacific Standard Time,

smaangel@... writes:

I appreciate your insight, but I am sure that there is at least one person

on this list who can tell you that they dident stretch and in the long run

it made then worse. my daughter has never been put into any sort of harm.

Nor have I allowed anyone to continue to stretch her when she was hurting.

As a matter of fact, I have never used a stander untill now, that we have

the standi dani, because i knew it hurt her. But since you are speaking as

the child, do you remember when you were two years old? Do you remember how

the pain was, or if you made it up so that you could get attention just

like any other 2 year old does, sick or not. Im not trying to be

confrontational with this subject, but i was not saying that i think she is

lieing about

the pain when she is streched. I AM saying that i do not think that she is

always being truthful about her feet hurting her when no body is touching

them. I do believe that they hurt when she is being streched. I hate to

put that pain upon her, and I do not allow it to go very far, but if she is

ever to fight this disease head on than Myself and her need to fight the

good fight as strongly as we can now and as long as it takes to keep her as

healthy as possible untill a cure is found.

Chrissy

cenlared <cenlared@...> wrote: Sorry, but these statements

bother me:

" And when you stretch them she cries, which is to be expected.... I

wonder if there is a pain, or if this is just her way to get some more

attention from mommy..... She unfortunately is not old enough for me

to be sure if she is really hurting or not. "

Speaking as the child ---

She is hurting.

An adult stretching a child hurts. Necessary or not, it hurts. And

the child doesn't understand why it is necessary. (I never did )

If a child later says an area that has been exercised hurts, it hurts.

Maybe a stretching session got a little enthusiastic. If the child

resists, tensing up, the harder it is to stretch, the more it hurts.

etc.

I'm not criticizing your parenting, because if you weren't concerned

you wouldn't have asked. It's wonderful that you asked. But it was

just on this board that we are not believed when we say STOP, or when

we say something is wrong. Imagine being a child who's told this is

for your own good. . . But it HURTS.

Been there.

P. S. I'm a nice Christian lady now. ...But I still despise

physical therapists. Never did anything but hurt this little girl.

[Guest guest]

The problem of her feet hurting is why i have posted this question in the first

place. And in my first post i stated that she complains sometimes not all the

time. Also she gets plenty of attention. But a single parent of two kids can

only give out so much. I spend 24-7 with my kids and I enjoy every bit of it.

But like i stated earlier, 2 year olds try to put things over on their parents.

She could just be jelious of her sister getting my attention and not her at

times. Either way I will not raise my child as a disabled child/person. I

have grown up around disabled individuals who were raised like that, and they

are undisiplined and bratty and feel that the whole world owes them something.

Yes she will be raised with confidence, but really how much confidence can a

two year old understand? I am not putting the question to my daughter about my

doubts of her really hurting when no one is touching her. I thought that was

one of the things this site was good

for. I can ask my questions and get opnions from others who may or may not

have gone through this very same problem. I did not post this question to find

out other peoples opnions on the way i choose to raise my child, but to see if

there were any others out there who have experienced foot paon when they were

not being touched in their lives or in their childrens.

Chrissy

cenlared <cenlared@...> wrote: I wouldn't suggest you would put

your child in harm's way, but a 2-3

year old can't know that.

2 more points

If a child that young could consistently complain about the same pain

just to get attention, who cares? Give her the attention. There will

be enough times she has to be a tough warrior. Let her, sometimes,

get away with it. Let her be a kid, not a disabled kid.

For a disabled child to grow up not intimidated by the medical

establishment she has to feel she is believed about what she is

feeling in her own body. Yes, she's too young now, but as you raise

her instill confidence.

Granted, she might be smart enough to try to manipulate you. As mom

you would know best about that. I realize you can't get into that

kind of pattern.

But what if her feet really hurt?

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

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[Guest guest]

What exactly would be considered contractures? I am just curious that she may

have a bit of it. Maybe this is why she is complaining of pain when i am not

touching her. Her feet are pointing sown and are turned inwards. And now her

toes are overlapping. Her physical theripist wanted her to get these shoes

that had a bar in betreew them to keep her feet in a certain position, but her

doctor says no. And these AFO'S do not seem to be doing what they should. But

then im not a doctor, they could be working, and only slowing down the process,

i just don't know.

Chrissy

Kristal Koehler <Brettsmom@...> wrote: For us, I can tell

if Brett is " faking to get out of stretching " or truly in pain and always have

been able to. On days, when he is tender - stretches are still mandatory- but

we compromise and cut the reps in half. If he has truly had an incident and is

in pain (as opposed to tender) we take a break for a day or two and then start

back with half reps and then go to our normal routine. I feel that there will

be a time soon enough when he gets older and I won't be able to stretch him-

but for now- I think the sooner I can prevent the contractures from starting

(or getting worse- he does have minor ones)- the better off he will be as he

grows older. As I have heard from many of you that contractures can be painful-

I think that is a fair assumption. But again- we compromise when he is feeling

out of sorts and don't overdo it. He doesn't complain so I think for us at

least- this works just fine. Also, he is still

young enough that I can do funny things while I am stretching him or talk

really excitedly about Spiderman stuff- to where he doesn't even pay attention

and he will say - we are done? I know every kiddo and every situation is

different so I definitely appreciate all points of views I have heard.

Kristal

Mom to Brett- SMA II- 6 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Re: Pain

I wouldn't suggest you would put your child in harm's way, but a 2-3

year old can't know that.

2 more points

If a child that young could consistently complain about the same pain

just to get attention, who cares? Give her the attention. There will

be enough times she has to be a tough warrior. Let her, sometimes,

get away with it. Let her be a kid, not a disabled kid.

For a disabled child to grow up not intimidated by the medical

establishment she has to feel she is believed about what she is

feeling in her own body. Yes, she's too young now, but as you raise

her instill confidence.

Granted, she might be smart enough to try to manipulate you. As mom

you would know best about that. I realize you can't get into that

kind of pattern.

But what if her feet really hurt?

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

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[Guest guest]

Chrissy, I didn't intend to question parenting. Sorry.

I'm just having childhood flashbacks. From what I see, others

experienced the same. Meg said it perfectly.

For instance, the thought those shoes with the bar between are still

being used makes me shudder. i thought they were extinct.

[Guest guest]

I also want to add- I do want to prevent Brett from having " horror " flashbacks

from his childhood like you guys have discussed- which is why we take it day by

day- if he starts complaining on a regular basis- we will try a different route.

I do make sure to tell him on a regular basis that he can always tell me if

something hurts or even if it is just bothering him- and he usually does.

Kristal

Mom to Brett- SMA II- 6 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Re: Pain

Chrissy, I didn't intend to question parenting. Sorry.

I'm just having childhood flashbacks. From what I see, others

experienced the same. Meg said it perfectly.

For instance, the thought those shoes with the bar between are still

being used makes me shudder. i thought they were extinct.

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occur occasionally in emails. Over use of inappropriate language will

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[Guest guest]

I was wondering how many of us adults who need full care have their

caregiver do stretching exercises. I do not. With my/our schedule and

everything that already does, stretching is not even on the list.

Not saying it's not a good thing, I just think many of our caregivers

are so *stretched* that it's not a priority.

Not sure I see the logic in doing it on kids either. The outcome is the

same. *looks around*

Lori

Chrissy Krider wrote:

> I appreciate your insight, but I am sure that there is at least one

> person on this list who can tell you that they dident stretch and in

> the long run it made then worse............

> Chrissy

[Guest guest]

The stretching, standing in braces did squat for me. I just had more pain

in my life. Ultimately, we endup in wheelchairs anyway. Is it really worth

the pain when the outcome is the same? Maybe for some it is. For me, it

wasn't.

Goodnight all.

Meg.

Re: Re: Pain

I was wondering how many of us adults who need full care have their

caregiver do stretching exercises. I do not. With my/our schedule and

everything that already does, stretching is not even on the list.

Not saying it's not a good thing, I just think many of our caregivers

are so *stretched* that it's not a priority.

Not sure I see the logic in doing it on kids either. The outcome is the

same. *looks around*

Lori

Chrissy Krider wrote:

> I appreciate your insight, but I am sure that there is at least one

> person on this list who can tell you that they dident stretch and in

> the long run it made then worse............

> Chrissy

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[Guest guest]

i agree. all the suffering as a child to fight contractions was not worth it for

me personally. as soon it was down to me i did not do the physio so everything

went its own sweet way as i prioritised other things in my life. i dont think i

have any more pain that anyone else here. others will no doubt want to

prioritise keeping straight and maybe with current advances it could be relevent

for children to be straight.

Re: Re: Pain

I was wondering how many of us adults who need full care have their

caregiver do stretching exercises. I do not. With my/our schedule and

everything that already does, stretching is not even on the list.

Not saying it's not a good thing, I just think many of our caregivers

are so *stretched* that it's not a priority.

Not sure I see the logic in doing it on kids either. The outcome is the

same. *looks around*

Lori

Chrissy Krider wrote:

> I appreciate your insight, but I am sure that there is at least one

> person on this list who can tell you that they dident stretch and in

> the long run it made then worse............

> Chrissy

A FEW RULES

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members most be tolerant and respectful to all members.

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occur occasionally in emails. Over use of inappropriate language will

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[Guest guest]

Even though I was not the original poster for this topic, thanks to everyone for

your opinions. I still feel as long as Brett will tolerate it- it is important

to maintain full range in his extremities. When he quits tolerating or is old

enough to decide- I won't do it anymore. I just see things that he used to be

able to do with his left arm but now that he has a little bit of a contracture

in it- he can't do that anymore- and it upsets him- so for us- I think that

confirms my decision that we should maintain range as long as possible. Thanks

again to everyone!

Kristal

Mom to Brett- SMA II- 6 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Re: Re: Pain

I was wondering how many of us adults who need full care have their

caregiver do stretching exercises. I do not. With my/our schedule and

everything that already does, stretching is not even on the list.

Not saying it's not a good thing, I just think many of our caregivers

are so *stretched* that it's not a priority.

Not sure I see the logic in doing it on kids either. The outcome is the

same. *looks around*

Lori

Chrissy Krider wrote:

> I appreciate your insight, but I am sure that there is at least one

> person on this list who can tell you that they dident stretch and in

> the long run it made then worse............

> Chrissy

A FEW RULES

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occur occasionally in emails. Over use of inappropriate language will

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[Guest guest]

Of course she wants the stretching to stop. It hurts!

" And when you stretch them she cries, which is to be expected. " No offense, but

that statement bothers me. If she cries, it is too much. I had a pt when I was

younger. I hated him. Still do. He would always hurt me. I also used to wear leg

braces. I would refuse them. But what could I do about it? I then got a doctor

who agreed with me. He said 'Why be uncomfortable now to be comfortable later?

And honestly, if she's never going to walk, whats the point if her feet are

straight or not? Physical therapists and doctors don't know everything. They

always think disabled people need to be and look normal. I know I have seen

examples of that too many times in this group. Broken bones and other pain. Then

doctors never seem to believe at first. Our bodies aren't normal. If she says

she's in pain, she's in pain. I also always hear physical therapists and

exercise trainers say if it hurts a lot, its too much. If she's crying, I think

it's too much. I dont think stretching is necesary.

Chrissy Krider wrote:

>Im thinking that some of it is from she wants the streching to stop. But I do

believe ti hurts her. Im just not sure if it really hurts her when no one is

touching her. But thankyou so much for your advise. I love this group because

everyone is helpful. Once again thankyou

> Chrissy

>

>Angie <angie@...> wrote: Chrissy, not being a mother/mommy

myself, but as woman who has gone through

> this (as others likely have, but...) her " pain " may be just her way of

> getting you to stop.

>

> I'd be looking for swolleness or redness or even displacement of her foot's

> natural alignment (look for the " Charlie Chaplin " foot stand). I once wore

> ankle splints at that same age and had some minor stretches weekly. All my

> parents & doctors were focusing on was keeping my feet flat and straight. I

> began complaining about " pain " just so they'd take the splints off or stop

> stretching my ankles, knees and hips. By my 6th birthday the doctors said the

> splints were not required. I then went to school with a footbox (it had

> " stalls " in it to keep my feet pointing straight ahead) and once I learned to

> keep them in that position, the footbox was removed.

>

> Of course, see your doctor first.

>

> Just my personal experience.

>

> Angie

>

>

[Guest guest]

gentle stretching really helps my arthritis and reduces my sensitivity

to movement and getting snagged on clothing and such. it reduces sex-

related injuries and increases my circulation. i wish i had gotten

over the stretching-related trauma of my youth sooner (i'm not really

over it) so i might have restarted stretching sooner. or i wish my

PT's and mother were more gentle and respectful - that they believed me

that it hurt, and honored my need to have at least a little control

over how i was being manipulated. now, at age 39 my knees are at a 45

degree angle. it's very difficult/painful to move me.

[Guest guest]

This point is very true, but has anyone ever had to have their tendons or what

ever is behind your knee and in the back of your ankle cut? This is what is

going to happen to my daughter if we stop the stretching they say. Because it

is so stiff.

Chrissy

<eric@...> wrote: Of course she wants the stretching

to stop. It hurts!

" And when you stretch them she cries, which is to be expected. " No offense, but

that statement bothers me. If she cries, it is too much. I had a pt when I was

younger. I hated him. Still do. He would always hurt me. I also used to wear

leg braces. I would refuse them. But what could I do about it? I then got a

doctor who agreed with me. He said 'Why be uncomfortable now to be comfortable

later? And honestly, if she's never going to walk, whats the point if her feet

are straight or not? Physical therapists and doctors don't know everything.

They always think disabled people need to be and look normal. I know I have

seen examples of that too many times in this group. Broken bones and other

pain. Then doctors never seem to believe at first. Our bodies aren't normal. If

she says she's in pain, she's in pain. I also always hear physical therapists

and exercise trainers say if it hurts a lot, its too much. If she's crying, I

think it's too much. I dont think stretching is

necesary.

Chrissy Krider wrote:

>Im thinking that some of it is from she wants the streching to stop. But I

do believe ti hurts her. Im just not sure if it really hurts her when no one

is touching her. But thankyou so much for your advise. I love this group

because everyone is helpful. Once again thankyou

> Chrissy

>

>Angie <angie@...> wrote: Chrissy, not being a

mother/mommy myself, but as woman who has gone through

> this (as others likely have, but...) her " pain " may be just her way of

> getting you to stop.

>

> I'd be looking for swolleness or redness or even displacement of her foot's

> natural alignment (look for the " Charlie Chaplin " foot stand). I once wore

> ankle splints at that same age and had some minor stretches weekly. All my

> parents & doctors were focusing on was keeping my feet flat and straight. I

> began complaining about " pain " just so they'd take the splints off or stop

> stretching my ankles, knees and hips. By my 6th birthday the doctors said

the

> splints were not required. I then went to school with a footbox (it had

> " stalls " in it to keep my feet pointing straight ahead) and once I learned

to

> keep them in that position, the footbox was removed.

>

> Of course, see your doctor first.

>

> Just my personal experience.

>

> Angie

>

>

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[Guest guest]

they being the medical folk too often obsessed with straight bodies? also it

wont happen unless you agree the benefits are worth it. i would question how

much better her life would be with straight legs. i can see feet can get

uncomfy with severe contractions. as has been said before i think finding

exercises which are relevent to real need and not painful is the optimal path or

like me she will just not do any when she is an adult.

cheers

linda

Re: Pain

This point is very true, but has anyone ever had to have their tendons or

what ever is behind your knee and in the back of your ankle cut? This is what

is going to happen to my daughter if we stop the stretching they say. Because

it is so stiff.

Chrissy

<eric@...> wrote: Of course she wants the

stretching to stop. It hurts!

" And when you stretch them she cries, which is to be expected. " No offense,

but that statement bothers me. If she cries, it is too much. I had a pt when I

was younger. I hated him. Still do. He would always hurt me. I also used to

wear leg braces. I would refuse them. But what could I do about it? I then got

a doctor who agreed with me. He said 'Why be uncomfortable now to be

comfortable later? And honestly, if she's never going to walk, whats the point

if her feet are straight or not? Physical therapists and doctors don't know

everything. They always think disabled people need to be and look normal. I

know I have seen examples of that too many times in this group. Broken bones

and other pain. Then doctors never seem to believe at first. Our bodies aren't

normal. If she says she's in pain, she's in pain. I also always hear physical

therapists and exercise trainers say if it hurts a lot, its too much. If she's

crying, I think it's too much. I dont think stretching is

necesary.

Chrissy Krider wrote:

>Im thinking that some of it is from she wants the streching to stop. But

I do believe ti hurts her. Im just not sure if it really hurts her when no

one is touching her. But thankyou so much for your advise. I love this group

because everyone is helpful. Once again thankyou

> Chrissy

>

>Angie <angie@...> wrote: Chrissy, not being a

mother/mommy myself, but as woman who has gone through

> this (as others likely have, but...) her " pain " may be just her way of

> getting you to stop.

>

> I'd be looking for swolleness or redness or even displacement of her

foot's

> natural alignment (look for the " Charlie Chaplin " foot stand). I once

wore

> ankle splints at that same age and had some minor stretches weekly. All

my

> parents & doctors were focusing on was keeping my feet flat and straight.

I

> began complaining about " pain " just so they'd take the splints off or

stop

> stretching my ankles, knees and hips. By my 6th birthday the doctors said

the

> splints were not required. I then went to school with a footbox (it had

> " stalls " in it to keep my feet pointing straight ahead) and once I

learned to

> keep them in that position, the footbox was removed.

>

> Of course, see your doctor first.

>

> Just my personal experience.

>

> Angie

>

>

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[Guest guest]

I had my tendons under my knees, hamstrings, and even my hip tendons

released or cut in jr high. I was stretched as a child by a PT and sometimes

at

home. Contractures are inevitable. The way you described how stiff your

daughters feet already are, I think its past fixing w/rigorous stretching. If

she

cries then it must be too much of a stretch. Stretching is fine as long as

you do not hurt the child to the point of crying. Your child now has a

standing Dani, which will help stretch her feet and help stop foot drop while

weight baring. Also just having the child wear shoes everyday can help.

Please

though, do not overdo the stretching.

Kimi

In a message dated 12/28/2005 9:09:56 A.M. Eastern Standard Time,

smaangel@... writes:

This point is very true, but has anyone ever had to have their tendons or

what ever is behind your knee and in the back of your ankle cut? This is

what is going to happen to my daughter if we stop the stretching they say.

Because it is so stiff.

Chrissy

[Guest guest]

Hi Chrissy

Just wanted to throw in my 2 cents. My toes are all overlapping, have been

for as long as I can remember. That doesn't create any pain to me.

My left foot has a major contracture meaning that the ankle is all twisted

and the sole of the foot faces to right and not downwards as it should. When

I was younger the contracture didn't hurt, and I guess that was one of the

reasons my parents did not treat it aggressively. I never could walk anyway

so it didn't seem to make much difference. Now I'm in my 30's and the foot

with the contracture has started to hurt a bit. The left foot doesn't

tolerate even the weight of the lower leg on it very well.

I have SMA type II.

So, fighting the contractures vs. not tormenting your child is a fine

balance.

smiles

Taya

Re: Pain

>

>

> I wouldn't suggest you would put your child in harm's way, but a 2-3

> year old can't know that.

> 2 more points

> If a child that young could consistently complain about the same pain

> just to get attention, who cares? Give her the attention. There will

> be enough times she has to be a tough warrior. Let her, sometimes,

> get away with it. Let her be a kid, not a disabled kid.

> For a disabled child to grow up not intimidated by the medical

> establishment she has to feel she is believed about what she is

> feeling in her own body. Yes, she's too young now, but as you raise

> her instill confidence.

> Granted, she might be smart enough to try to manipulate you. As mom

> you would know best about that. I realize you can't get into that

> kind of pattern.

> But what if her feet really hurt?

>

>

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

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> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

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> spinal muscular atrophy, health, and the daily issues of the disabled.

>

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[Guest guest]

In a message dated 12/28/2005 7:15:26 P.M. Eastern Standard Time,

smaangel@... writes:

it from getting worse for a bit. But im not to sure about it though.

She is a type two. But the doctors say that if all goes well and with enough

prayor and alot of good luck that she may be able to walk again with some

leg braces. But once again im just not to sure,

CHrissy

Chrissy,

Once we stop walking, I highly doubt anyone here walked again w/assistance

from any device. Leg braces would make her legs heavier to move anyways IMO.

I think the Drs are giving you false hope.

Kimi

[Guest guest]

my niece had her tendons released. it was quite an uncomfortable

recovery time. the benefits did not last despite her exercises.

>

> This point is very true, but has anyone ever had to have their

tendons or what ever is behind your knee and in the back of your ankle

cut? This is what is going to happen to my daughter if we stop the

stretching they say. Because it is so stiff.

> Chrissy

>

[Guest guest]

Why do you think they will need to be cut? For what reason? Walking?

Walking until what age? Didn't you say your dtr. has type II?

Lori

Chrissy Krider wrote:

> This point is very true, but has anyone ever had to have their

> tendons or what ever is behind your knee and in the back of your

> ankle cut? This is what is going to happen to my daughter if we stop

> the stretching they say. Because it is so stiff.

> Chrissy

>

[Guest guest]

The doctors say they will need to be cut in the future, in order to keep her in

a standing position. She has the early stages of scholosis, they say that her

standing will keep it from getting worse for a bit. But im not to sure about

it though. She is a type two. But the doctors say that if all goes well and

with enough prayor and alot of good luck that she may be able to walk again

with some leg braces. But once again im just not to sure,

CHrissy

Those Two <those2@...> wrote: Why do you think they will

need to be cut? For what reason? Walking?

Walking until what age? Didn't you say your dtr. has type II?

Lori

Chrissy Krider wrote:

> This point is very true, but has anyone ever had to have their

> tendons or what ever is behind your knee and in the back of your

> ankle cut? This is what is going to happen to my daughter if we stop

> the stretching they say. Because it is so stiff.

> Chrissy

>

A FEW RULES

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members most be tolerant and respectful to all members.

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occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

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[Guest guest]

I agree totally in doing the stretches. It may be somewhat painful but in

the end it may bee beneficial also. Stretching doesn't always stop contactures,

but it may lessen the severity of them later in life. Sure sometimes they

are painful, but are we really remembering them from that young an age or later

in years. Think of the pain that is put upon us when we are moved of

positioned wrong. Sometimes the shapes of our bodies may have taken this shape

because not of stretching which then causes us pain also. I'd rather be

somewhat

flexible and take the pain than the pain we sometimes suffer because of

contractures. Stretching pains usually go away but sometimes we can be in pain

for a

long or in constant pain due to the way our bodies have shaped over the years.

I have an old brother who never did PT and he is shaped terriblely, he has

contractures in almost every part of his joints including his neck which is now

stuck at an angle. All his fingers and toes are crossed over and you can't

open the hands at all. I know don't compare one person against another. I did

the stretching and still do except I don't do it it on 1 leg. I fell when I

was younger and didn't do stretches because of the pain. It now has little

flex to it. In fact it was broke 1 year ago because of being moved improperly.

Now i've got pain that won't go away. The rest of me is ok just a little

contracture in my good leg at the knee. That is believed to be coming from

getting old and osteoperosis. I'm a type high 2.

My opinion keep up with the stretches. It your new at it, you will learn

over time. Just try to be aware of her reactions during stretching. Slow down

some and see what kind of reaction you get. Sometimes starting out slow helps

then pick it up more. Maybe she needs time to get useful to it all. Remember

she is little and this is new to her too.

I have pain when anybody touches my feet and legs, especially the feet. Does

she have high arches? That's what caused me most pain. I now have edema (

excess fluid) and my feet swell, don't even think about touching them then. The

pain of touch is so terrible I almost can't stand it. I can't figure out is

it the nerve endings. Taking a shower and having water spray on just about

doubles me over. I can't stand shoes, sometimes socks too. I just can't figure

out why. Does anybody have this?

.

[Guest guest]

Another general group question:

How many of you, once you lost the ability to walk where able to walk again?

I did not.

Lori

Chrissy Krider wrote:

> The doctors say they will need to be cut in the future, in order to

> keep her in a standing position. She has the early stages of

> scholosis, they say that her standing will keep it from getting worse

> for a bit. But im not to sure about it though. She is a type two.

> But the doctors say that if all goes well and with enough prayor and

> alot of good luck that she may be able to walk again with some leg

> braces. But once again im just not to sure,

> CHrissy

>

> Those Two <those2@...> wrote: Why do you think

> they will need to be cut? For what reason? Walking?

> Walking until what age? Didn't you say your dtr. has type II?

>

> Lori