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Has anyone braced there child with success?

I really am interested in casting....which member of the gruop has

had the procedure done with the longest time span

Has anyone had any negitive results from the casts or the brace so

far?

I am so happy to have found you guys I really have so many

questions...I just have to keep everyone's e-mails,names and faces

together so I don't get confused.

Thanks so much

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You may want to have him tested for muscular dystrophy. I walk on my toes due to having it and there isnt a permenent fix for it

On Mar 21, 2011 4:08 PM, " Genie Bottle " <bottlegenie56@...> wrote:> My son walks on his tiptoes. We tried therepy to correct this,but it isn't working. They are now saying he will need bracing on his legs and possible medication. The medication would possibly help him relax his muscles to walk straight. I have never heard of this. Does it work? I would be happy for any information I could get. Thanks!

> > > > ------------------------------------> >

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Kinda hard to think what kind of medication would help! I know my son

was a toe walker, and just recently got out of casts to help stretch his

Achilles tendons. The next step is getting fitted for leg braces, which

happens this Friday.

Isaac is very pragmatic, and the casts didn't phase him very much. It

was a bit of a challenge when it came to bath time, but we figured out

how to handle that.

Eleanor, San , CA

Aspie son Isaac, 10.5 years old

On 03/21/2011 13:51 , Genie Bottle wrote:

> My son walks on his tiptoes. We tried therepy to correct this,but it

> isn't working. They are now saying he will need bracing on his legs and

> possible medication. The medication would possibly help him relax his

> muscles to walk straight. I have never heard of this. Does it work? I

> would be happy for any information I could get. Thanks!

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My son walks on his toes also. He started having seizures when he was 2

years old and has had them all of his life, he is 46 now. From what I

understand the walking on toe thing comes from in the brain is not the

feet or legs.

He does love to walk and we take him walking when we can, he has to have

assistance because he cannot balance alone but once he gets going he

goes good and he likes it but mostly on his toes. His hands also are

turned in from the same problem, the brain.

How old is your son? I was thinking if they start physical therapy on a

child young enough in life maybe it would help to avert some of this.

When my son was younger he ran all over the place and was hard to keep

up with, but yes mostly on his toes, it didn't slow him down though.

Carolyn OR ;o)

Reifeiss wrote:

>

>

> You may want to have him tested for muscular dystrophy. I walk on my

> toes due to having it and there isnt a permenent fix for it

>

> On Mar 21, 2011 4:08 PM, " Genie Bottle " <bottlegenie56@...

> <mailto:bottlegenie56@...>> wrote:

> > My son walks on his tiptoes. We tried therepy to correct this,but it

> isn't working. They are now saying he will need bracing on his legs

> and possible medication. The medication would possibly help him relax

> his muscles to walk straight. I have never heard of this. Does it

> work? I would be happy for any information I could get. Thanks!

> >

> >

> >

> > ------------------------------------

> >

>

>

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Guest guest

My son walks on his toes also. He started having seizures when he was 2

years old and has had them all of his life, he is 46 now. From what I

understand the walking on toe thing comes from in the brain is not the

feet or legs.

He does love to walk and we take him walking when we can, he has to have

assistance because he cannot balance alone but once he gets going he

goes good and he likes it but mostly on his toes. His hands also are

turned in from the same problem, the brain.

How old is your son? I was thinking if they start physical therapy on a

child young enough in life maybe it would help to avert some of this.

When my son was younger he ran all over the place and was hard to keep

up with, but yes mostly on his toes, it didn't slow him down though.

Carolyn OR ;o)

Reifeiss wrote:

>

>

> You may want to have him tested for muscular dystrophy. I walk on my

> toes due to having it and there isnt a permenent fix for it

>

> On Mar 21, 2011 4:08 PM, " Genie Bottle " <bottlegenie56@...

> <mailto:bottlegenie56@...>> wrote:

> > My son walks on his tiptoes. We tried therepy to correct this,but it

> isn't working. They are now saying he will need bracing on his legs

> and possible medication. The medication would possibly help him relax

> his muscles to walk straight. I have never heard of this. Does it

> work? I would be happy for any information I could get. Thanks!

> >

> >

> >

> > ------------------------------------

> >

>

>

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They put my son on large doses of muscle relaxants when he was a kid, he

once took 45 mg of Valium a day, took it for several years. It was

supposed to relax his muscles so he wouldn't have seizures. I would not

recommend it as it was really bad for him and made him have more

seizures. As I said it is not a problem in the muscles but is in the

part of the brain that controls this. I don't know what can be done

about it, seems somebody would know but doctors sometimes go the wrong

way. It was a nightmare getting him off Valium, he went through

withdrawal the whole bit.

Carolyn

Genie Bottle wrote:

>

> My son walks on his tiptoes. We tried therepy to correct this,but it

> isn't working. They are now saying he will need bracing on his legs

> and possible medication. The medication would possibly help him relax

> his muscles to walk straight. I have never heard of this. Does it

> work? I would be happy for any information I could get. Thanks!

>

>

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They put my son on large doses of muscle relaxants when he was a kid, he

once took 45 mg of Valium a day, took it for several years. It was

supposed to relax his muscles so he wouldn't have seizures. I would not

recommend it as it was really bad for him and made him have more

seizures. As I said it is not a problem in the muscles but is in the

part of the brain that controls this. I don't know what can be done

about it, seems somebody would know but doctors sometimes go the wrong

way. It was a nightmare getting him off Valium, he went through

withdrawal the whole bit.

Carolyn

Genie Bottle wrote:

>

> My son walks on his tiptoes. We tried therepy to correct this,but it

> isn't working. They are now saying he will need bracing on his legs

> and possible medication. The medication would possibly help him relax

> his muscles to walk straight. I have never heard of this. Does it

> work? I would be happy for any information I could get. Thanks!

>

>

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Also to braces. We have bad experiences there but I don't see why they

might not help some children.

With my son though about ten years ago he had a really hard time

walking, was very weak and could barely stand upright or even sit

upright, so the doctor got the bright idea he needed braces on his legs.

So we took him in and they made plaster casts of each leg, a long and

tedious process, and built the plastic braces with straps to custom fit

his legs from ankle to knee. Every time we put them on him he hated them

but he could not talk so didn't cry out, he just limped and scowled like

they hurt him. Finally we stopped using them.

Well then he got sick and almost died and was in ICU for over a week and

in the hospital for a month altogether. He had strept infection in his

throat that closed it up and was intubated and on life support. Also put

on IV antibiotics... Finally he woke up but could not eat due to his

weakness so they put him on a food tube before he starved to death. And

he perked up, gained weight and got well.

And you know what was next, his LEGS got strong and straight and his

back went straight and he could walk and sit upright again!! Why?

Because now he was nourished and before he had been malnourished. He did

not ever need braces he needed more food! He gained over 20 lb. after

that of pure muscles and was fine, is still fine.

I am still so mad at them for telling us he needed braces when they

could plainly see how skinny and malnourished he was from not being able

to swallow his food.

Carolyn

Carolyn wrote:

> My son walks on his toes also. He started having seizures when he was

> 2 years old and has had them all of his life, he is 46 now. From what

> I understand the walking on toe thing comes from in the brain is not

> the feet or legs.

>

> He does love to walk and we take him walking when we can, he has to

> have assistance because he cannot balance alone but once he gets going

> he goes good and he likes it but mostly on his toes. His hands also

> are turned in from the same problem, the brain.

>

> How old is your son? I was thinking if they start physical therapy on

> a child young enough in life maybe it would help to avert some of

> this. When my son was younger he ran all over the place and was hard

> to keep up with, but yes mostly on his toes, it didn't slow him down

> though.

>

> Carolyn OR ;o)

>

> Reifeiss wrote:

>>

>>

>> You may want to have him tested for muscular dystrophy. I walk on my

>> toes due to having it and there isnt a permenent fix for it

>>

>> On Mar 21, 2011 4:08 PM, " Genie Bottle " <bottlegenie56@...

>> <mailto:bottlegenie56@...>> wrote:

>> > My son walks on his tiptoes. We tried therepy to correct this,but

>> it isn't working. They are now saying he will need bracing on his

>> legs and possible medication. The medication would possibly help him

>> relax his muscles to walk straight. I have never heard of this. Does

>> it work? I would be happy for any information I could get. Thanks!

>> >

>> >

>> >

>> > ------------------------------------

>> >

>>

>>

>

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Eleanor I am glad to hear that the braces helped your son, it makes

sense that the Achilles tendons need to be stretched out in some

children. I know with me I had to start buying those heel lifts because

my Achilles tendon was stretching too far down and boy did that hurt! I

found I cannot wear flat shoes of any kind they have to have some type

of heel. Also many kid's soccer shoes I once read has this problem the

kids get this pain in their Achilles from the poor design in some of them..

I once bought a pair of Teva sandals for summer and road my bike in them

hiked, did everything and one day after a hard bike ride I could NOT

walk for the pain. Do still wear them though for short times because I

like them, cannot find sandals with heels!

Just my little study on the Achilles today.

Carolyn ;o)

Eleanor Oster wrote:

>

> Kinda hard to think what kind of medication would help! I know my son

> was a toe walker, and just recently got out of casts to help stretch his

> Achilles tendons. The next step is getting fitted for leg braces, which

> happens this Friday.

>

> Isaac is very pragmatic, and the casts didn't phase him very much. It

> was a bit of a challenge when it came to bath time, but we figured out

> how to handle that.

>

> Eleanor, San , CA

> Aspie son Isaac, 10.5 years old

>

> On 03/21/2011 13:51 , Genie Bottle wrote:

> > My son walks on his tiptoes. We tried therepy to correct this,but it

> > isn't working. They are now saying he will need bracing on his legs and

> > possible medication. The medication would possibly help him relax his

> > muscles to walk straight. I have never heard of this. Does it work? I

> > would be happy for any information I could get. Thanks!

>

>

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Guest guest

Eleanor I am glad to hear that the braces helped your son, it makes

sense that the Achilles tendons need to be stretched out in some

children. I know with me I had to start buying those heel lifts because

my Achilles tendon was stretching too far down and boy did that hurt! I

found I cannot wear flat shoes of any kind they have to have some type

of heel. Also many kid's soccer shoes I once read has this problem the

kids get this pain in their Achilles from the poor design in some of them..

I once bought a pair of Teva sandals for summer and road my bike in them

hiked, did everything and one day after a hard bike ride I could NOT

walk for the pain. Do still wear them though for short times because I

like them, cannot find sandals with heels!

Just my little study on the Achilles today.

Carolyn ;o)

Eleanor Oster wrote:

>

> Kinda hard to think what kind of medication would help! I know my son

> was a toe walker, and just recently got out of casts to help stretch his

> Achilles tendons. The next step is getting fitted for leg braces, which

> happens this Friday.

>

> Isaac is very pragmatic, and the casts didn't phase him very much. It

> was a bit of a challenge when it came to bath time, but we figured out

> how to handle that.

>

> Eleanor, San , CA

> Aspie son Isaac, 10.5 years old

>

> On 03/21/2011 13:51 , Genie Bottle wrote:

> > My son walks on his tiptoes. We tried therepy to correct this,but it

> > isn't working. They are now saying he will need bracing on his legs and

> > possible medication. The medication would possibly help him relax his

> > muscles to walk straight. I have never heard of this. Does it work? I

> > would be happy for any information I could get. Thanks!

>

>

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Hi there.

I have a son, age 7, with cerebral palsy/right hemiplegia from a stroke in-utero. He has never toe walked but does use a brace to assist with a foot drop on his right (affected) leg.

One thing we did do a couple years ago and are looking into doing again because he is getting tight again is serial casting. What they do is stretch the foot into a flexed position as far as it will go and then stretch just a little bit further. They then cast the foot/leg in that "extra" stretch position. After one week, you go back, they cut the cast off and do it again, this time the stretch should be a bit farther than the last. With my son the last time we only went 4 weeks but others that we know have gone longer like 6 or 8 weeks.

Your son will need a brace afterward as the leg will be weaker from not using the muscles but the gait should soon improve. I am not sure how they would do this with both legs - one then the other ?

You MIGHT be able to accomplish the same thing using night time/home/tv time AFO's (braces) that are also stretched a bit further than what is "comfortable" and then having the braces altered each week to further the stretch. This would probably take much longer as he would be out of the stretch during the day.

We do have a nighttime AFO that is supposed to keep my son's flexing range however he outgrew it and we never replaced and now we will have to do the serial casting again because he lost range of motion.

I would suggest going to an ortho specialist rather than just using the ones at a general clinic. They tend to be more specialized in the formation of the braces and can tweak them to fit your child's exact need. Sometimes the general clinics do more "cookie cutter" bracing.

The medicine that the doctor was probably talking about is Botox. This medication as you know relaxes the muscle(s) it is injected into and this allows other muscles to gain strength. We have done botox one time when my son was about 3 but we did not like the result as he really walked with a limp.

If you have any other questions, please let me know. My son has been in a brace since he was 18 months old.

Aj

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