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Hi ,

It's great that your daughter is doing well. I'm a PT. - once the goals of

therapy have been achieved there is no need to continue forever. Keep in mind

that it is important to continue with the exercise program that was given to

you so that everything that you worked so hard to achieve in therapy will be

maintained. Some therapists will follow up monthly or less frequent to make

sure that range of motion and muscle strength is maintained. Keep up the good

work!

Rena

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Rena,

Thanks for the advice. Back in April when Kelsey was first diagnosed, she

was spending most of her time in the bed or just laying around watching tv.

Now she is very active and hardly ever sits down! I am very pleased with her

progress, needless to say. Sometimes my husband tells me to leave her alone

because I'm constantly trying to incorporate exercise/therapy into her play!

lol Have a nice weekend,

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In a message dated 7/28/00 9:39:38 AM Eastern Daylight Time,

imshellrenee@... writes:

<< 'm constantly trying to incorporate exercise/therapy into her play! >>

I do that to, I have a hard time going shopping and buying a toy just because

its fun, every toy I look at has to be something to use therapeutically, lol.

Always good to hear that i am not alone, lol

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  • 1 year later...

Hello Becki..have you asked your the rheumy if he or she knows of any

organizations that can help you when it comes to the physical therapy. I

know with Tabitha...I have the access card from the state and it covers only

30 min. sessions..so by the time we get in..it is time to leave..but they

taught me therapy to do with her at home when she is smaller.

Tabitha(16..poly) also has troubles with her elbows...she can only

straightened them so far..plus it is like her arms didn't grow the potential

length..or shrunk..I thought of asking about joint replacements in them..We

mentioned to the dr. about her shoulders..because she can only raise her

arms so high. This disease is so aggravating.

But check with your dr. plus..if you see a dr. at a hospital, there might be

a social worker who might be able to help.

Good luck

karen(tabitha16..poly)

From: alarson1@...

Reply-

Subject: physical therapy

Date: Wed, 17 Oct 2001 14:14:34 -0000

hi its becki.s lft elbow has a slight contracture.Can pysical

therapy fix it or is it to late?We have insurance $15 copay 20% at 2

times a week it would still cost us around $150.My daughters school

has a special ed pre-school program where physical and speech

therapists come right to the school Even if they are full my daughters

teacher knows of kids who come in for speech therapy doesnt know about

physical though.I have also read some states offer rehibilitation

services to children under 16 with limited income.Does anyone have an

idea where to start looking,Im getting pretty desperate. isnt

quite 4 months into this disease he has never complained of his elbows

hurting yet his left one wont straighten all the way ouy and he cant

touch his shoulder. Becki and 3 systemic

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Becki,

Contact your local elementary school or superintendent's office. They should

be able to give you the number for your district's early intervention

program. In our county it is called Child Find. Thru this program

should be evaluated for physical therapy and occupational therapy. If his

problems are things that will interfere with learning, then he should

qualify for services.

Liz

physical therapy

> hi its becki.s lft elbow has a slight contracture.Can pysical

> therapy fix it or is it to late?We have insurance $15 copay 20% at 2

> times a week it would still cost us around $150.My daughters school

> has a special ed pre-school program where physical and speech

> therapists come right to the school Even if they are full my daughters

> teacher knows of kids who come in for speech therapy doesnt know about

> physical though.I have also read some states offer rehibilitation

> services to children under 16 with limited income.Does anyone have an

> idea where to start looking,Im getting pretty desperate. isnt

> quite 4 months into this disease he has never complained of his elbows

> hurting yet his left one wont straighten all the way ouy and he cant

> touch his shoulder. Becki and 3 systemic

>

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

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Becki,

Try going through the school district for the physical therapy. I

have a son(nonJRA) who is recieving OT & PT through our school

district and it is free. (MY JRA child) will be tested next

month to see if she is eligable for services. Her teacher watched her

running and thought maybe an evaluation just to see would be a good

idea.

Teri

> hi its becki.s lft elbow has a slight contracture.Can pysical

> therapy fix it or is it to late?We have insurance $15 copay 20% at

2

> times a week it would still cost us around $150.My daughters school

> has a special ed pre-school program where physical and speech

> therapists come right to the school Even if they are full my

daughters

> teacher knows of kids who come in for speech therapy doesnt know

about

> physical though.I have also read some states offer rehibilitation

> services to children under 16 with limited income.Does anyone have

an

> idea where to start looking,Im getting pretty desperate. isnt

> quite 4 months into this disease he has never complained of his

elbows

> hurting yet his left one wont straighten all the way ouy and he

cant

> touch his shoulder. Becki and 3 systemic

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Becki..hello it is karen again...Tabitha receives physical therapy during

school..twice a week..she had an OT do an evaluation on her for school but

it was needed..since she could feed herself and had an aide to assist her

needs..as far as, carrying her lunch tray and such.If you can get your

doctor to write a prescription for in school OT and PT during school..the

school has to get someone to come in and evaluate the child..and the school

system pays for the services while in school. Here it is the Lincoln

Intermediate Unit..check with the guidance counselor at school..they should

be able to help also.

Sorry to keep rambling..trying to think of some solutions for you and .

karen(tabitha16..poly)

From: alarson1@...

Reply-

Subject: physical therapy

Date: Wed, 17 Oct 2001 14:14:34 -0000

hi its becki.s lft elbow has a slight contracture.Can pysical

therapy fix it or is it to late?We have insurance $15 copay 20% at 2

times a week it would still cost us around $150.My daughters school

has a special ed pre-school program where physical and speech

therapists come right to the school Even if they are full my daughters

teacher knows of kids who come in for speech therapy doesnt know about

physical though.I have also read some states offer rehibilitation

services to children under 16 with limited income.Does anyone have an

idea where to start looking,Im getting pretty desperate. isnt

quite 4 months into this disease he has never complained of his elbows

hurting yet his left one wont straighten all the way ouy and he cant

touch his shoulder. Becki and 3 systemic

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Hi Becki, yes PT can help to prevent the conracture of the joints, and as

for the cost, if the therapist shows you, you can work with at home

so you don't have a need to go in for PT , rather just an occasional

check in.

I too faced the joint contraction, although I still have some it stop

severe contracture.

Rusty Limbs

On Wed, 17 Oct 2001 14:14:34 -0000 alarson1@... writes:

> hi its becki.s lft elbow has a slight contracture.Can pysical

> therapy fix it or is it to late?We have insurance $15 copay 20% at 2

>

> times a week it would still cost us around $150.My daughters school

>

> has a special ed pre-school program where physical and speech

> therapists come right to the school Even if they are full my

> daughters

> teacher knows of kids who come in for speech therapy doesnt know

> about

> physical though.I have also read some states offer rehibilitation

> services to children under 16 with limited income.Does anyone have

> an

> idea where to start looking,Im getting pretty desperate. isnt

> quite 4 months into this disease he has never complained of his

> elbows

> hurting yet his left one wont straighten all the way ouy and he cant

>

> touch his shoulder. Becki and 3 systemic

>

>

>

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Dear Becki,

When Kate was dx. at 3--is now 7--she had to go to therapy 8x's a month

due to contractures. Our insurance would only pay for 6 weeks of any one

condition--anyway--she has been going for 4 years now--and the hospital

found us a program called Children With Special Health Care Needs that

will pick up what your insurance doesn't cover. They've been a blessing

to us (they covered her meds as well--but that's another long story!

lol!) Ask to speak to your hospital's social worker and ask about

programs--there are some out there--unfortunately sometimes you have to

look hard for them. We live in Indiana---but I'm sure other places have

them. Kate's program covers everything from her medical to her dental to

legcasts, handsplints etc...that our insurance won't cover, I hope I

could help some.

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  • 3 weeks later...

Does anyone have experience with Physical Therapy in the elementary grades? I

am interested in your response if you get it as a service in school. What do

they do weekly for your child and do they consult with Teacher. I have found

that relatively few ds children receive PT services after preschool. My

daughter does not walk independently up/down stairs, run or jump. She is 5

yrs old. The school PT is resistent to any suggestions. I have my daughter in

4.5 hours a day short of a full day special ed. They have all physical

activities in the pm after she leaves i.e. recess. Any suggestions.

Diane

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In a message dated 11/2/01 11:51:05 PM Pacific Standard Time,

dben937342@... writes:

<< Does anyone have experience with Physical Therapy in the elementary

grades? I

am interested in your response if you get it as a service in school. What do

they do weekly for your child and do they consult with Teacher. I have found

that relatively few ds children receive PT services after preschool. My

daughter does not walk independently up/down stairs, run or jump. She is 5

yrs old. The school PT is resistent to any suggestions. I have my daughter

in

4.5 hours a day short of a full day special ed. They have all physical

activities in the pm after she leaves i.e. recess. Any suggestions.

Diane >>

Hi Diane,

Seth is 5 years old and has had PT since he was a baby. In our county I

think there needs to be a 30% delay in gross motor skills to qualify for PT.

Seth goes to school for 3 hours a day (short full day special ed too) and

still gets PT twice a week. Seth will do stairs and jumping only if he is

holding my hand, but he still can't run yet. Do you know the gross motor

delay for Rochelle? Seth works on trike, balance beam, stairs, stepping

over-in-on courses, laying on a skateboard and pushing with his arms, and

spends a lot of time walking VERY fast to get out of the room. LOL Seth's

class does a lot of playground and walking in the afternoon when he leaves

too, but he is active enough around here, so he isn't missing anything.

Gail :-)

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> Does anyone have experience with Physical Therapy in the elementary

grades? I am interested in your response if you get it as a service

in school. What do they do weekly for your child and do they consult

with Teacher. I have found that relatively few ds children receive PT

services after preschool. My daughter does not walk independently

up/down stairs, run or jump. She is 5 yrs old. The school PT is

resistent to any suggestions. I have my daughter in 4.5 hours a day

short of a full day special ed. They have all physical activities in

the pm after she leaves i.e. recess. Any suggestions. >

> Diane

>

Gee Diane ,

Just trying to remember what went through during his

elemantary days , makes my memory go dizzy , whew ! Its hard to

believe went through all that . had OT/PT since he was

5 months old . By the time he reached elementary , it was easy to

discuss what areas still needed concentration on and so it was

applied to his IEP along with us keeping him home during the summer

for private PT and home Therapy . Don't worry about the jumping

yet , concentrate on Rochelle trying to balance well for now ,

keeping her gross motor skills to strengthen with Therapy needed .

This site will explain why -

http://www.altonweb.com/cs/downsyndrome/winders.html

Once again , I'll see which home Therapy I did for at home . I

know it involved practicing walking up and down the stairs , so that

he could alternate his feet , leg work-out , mini-trampoline ,

walking on a beam , & riding a tricycle with the strapped peddles

with assistance are a few . Oh ! How could I forget the Mickey Mouse

excercise , that one was cute . As his motor skills strength

improved, then gradually adaptive PE was included on his IEP . I was

worried at first when one of his PT had mentioned that no

longer needed it . The PT told me not to worry , he was able to

balance well and if I was still worried we could always go back to

plan A , but it was not necessary because she proved me right . To

this day now he is doing wonderful , even jumping which he had just

learned . It was nice seeing him doing the running long jump and the

standing long jump along with the 50 & 100 yard dash run .

received a Track & Field Award for outstanding achievement at the

Special Olympics training clinic . Yes, could say been there ,

done that . You are not alone on this , many here will be glad to

share what their kids went through , plus there are so much updated

information . Do you have any type of State Health Services in your

area , besides your health insurance ? Ok , you know me I get carried

away . Take care , don't mean to bore you . : )

Irma, 13,DS/ASD.

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In a message dated 11/3/01 12:21:00 PM Eastern Standard Time,

ICANFIELD@... writes:

> To

> this day now he is doing wonderful , even jumping which he had just

> learned . It was nice seeing him doing the running long jump and the

> standing long jump along with the 50 & 100 yard dash run .

> received a Track & Field Award for outstanding achievement at the

>

Wow, I didn't know he got a medal for jumping and running. That is impressive

considering he was still getting PT in elementary school. Thanks for the

website, I did read it. Pat Winders did Rochelle's eval. and I am awaiting

the written copy. I will give this printed copy from Riverbed to the Sped

teacher. Thanks. I asked the PT if she had experience with DS kids and she

said very few get PT in elementary school. Soooo I guess thats a no or not

many. Yet, she disagrees quite nicely with the suggestions Pat has made for

Rochelle. I was so upset I couldn't sleep Friday night. Came down to the

computer and starting writing to you guys. An as usual, you all are very

helpful.

Diane (mom to Rochelle ds-5 and Danny 7)

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I had O.T. when I was younger, I don't know if I had

P.t., I probablly did. I don't know if it was thought

the school- though it might have been.

=====

__________________________________________________

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Hi Diane,

My son Brook is 11 yrs and doesn't run or jump. I'm really not concerned

about it.

He did have a lot of difficulty with stairs and he did have physical therapy

in his IEP until about 3 or so years ago. We had goals in his IEP regarding

climbing and descending stairs safely and transversing uneven surfaces. He

is much better at stair climbing now as long as their is a handrail to hold

onto, otherwise he needs a hand to hold.

Marisa

Mom to Miles 14, Brook 11yrs and Genevieve 4yrs

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In a message dated 11/4/01 12:38:34 AM Eastern Standard Time, poggim@...

writes:

> Hi Diane,

> My son Brook is 11 yrs and doesn't run or jump. I'm really not concerned

> about it.

> He did have a lot of difficulty with stairs and he did have physical

> therapy

> in his IEP until about 3 or so years ago. We had goals in his IEP regarding

> climbing and descending stairs safely and transversing uneven surfaces. He

> is much better at stair climbing now as long as their is a handrail to hold

> onto, otherwise he needs a hand to hold.

>

>

Marisa,

Does Brook wear glasses? I just wonder if some of this cautious movement is

visual perceptual. I just want Rochelle (wears bifocals) to be independent

and I worry that if she continues this stop/drop/flop thing that my back will

suffer. I try to not pick her up because I do have a bad back due to picking

up both kids the wrong way. I am always in a hurry so I need to slow down.

Just want her to have fun too. Thanks for your imput, maybe I worry to much.

Diane (mom to Rochelle ds-5 and Danny 7)

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Does Brook wear glasses? I just wonder if some of this cautious

movement is visual perceptual. I just want Rochelle (wears bifocals)

to be independent and I worry that if she continues this

stop/drop/flop thing that my back will suffer. I try to not pick her

up because I do have a bad back due to picking up both kids the wrong

way. I am always in a hurry so I need to slow down. Just want her to

have fun too. Thanks for your imput, maybe I worry to much.

> Diane (mom to Rochelle ds-5 and Danny 7)

>

Diane ,

Never say worry , just a concerned MOM . Glad you do want to watch

your back , because it will occur in time as the kids get older your

muscle spasms increases and tightens up more , not a pretty picture

when trying to lift them when they're older and stronger . Make sure

you always wear good arch support shoes and a possible ab belt when

staying active , like when your cleaning & etc. . Try to do some back

stretches , at least 15 minutes a day ,3x-a wk.. So that you could

avoid any future major back problems . My doc said my injured back

was due to what you had mentioned . I was always on the go also and

always lifted the wrong way . Say, a Therapeutic excercise ball would

not be bad also at home , for both you and Rochelle . just

loved the huge ball . The visual perception could be a possibility .

I remember would run , such a runner to this day , anyways

before he had his glasses, he would just bump around and looked down

at the floor all the time , no telling if that had triggered some

sensitivity issues .

Irma, 13,DS/ASD.

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In a message dated 11/4/01 8:47:58 AM Eastern Standard Time,

ICANFIELD@... writes:

> Make sure

> you always wear good arch support shoes and a possible ab belt when

> staying active , like when your cleaning & etc. . Try to do some back

> stretches , at least 15 minutes a day ,3x-a wk.. So that you could

> avoid any future major back problems . My doc said my injured back

> was due to what you had mentioned . I was always on the go also and

>

Irma, did you say cleaning? what cleaning? I'm always on the computer now.

LOLO Sorry to hear about your back. Did you go to a Chiropractor? I did when

I was getting no relief. It helped. The best thing though was getting a new

firm mattress. And, I have started working out 3x a week at the gym. Thanks

for being concerned. I will add some back stretches to my routine. Now if I

can just stop eating the kids chocolate.

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> In a message dated 11/4/01 8:47:58 AM Eastern Standard Time,

> Irma, did you say cleaning? what cleaning? I'm always on the

computer now.

HA Ha ! Can't stay away , huh ? How funny ! I don't blame you , when

I first attended my first local autism support group . One of the

WARNINGS was that the INTERNET would be your friend . It does invovle

alot of RESEARCH info, plus many wonderful friends with a Blessed

HEART that can relate , like you all .

LOLO Sorry to hear about your back. Did you go to a Chiropractor?

I still am , going on 2 yrs . now . I have a tiny cyst that is right

next to my lumbar area , so when goes into one of those melt-

downs , I just let him cool down , because if I try to lift him up ,

OUCH ! Its better this year though . I have to twist my husbands arm

to contact his Health Insurance to request for a good orthopedic

(sp.) that will accept our insurance . I mean, to remind him , : )

I did when I was getting no relief. It helped. The best thing though

was getting a new firm mattress. And, I have started working out 3x

a week at the gym. Thanks for being concerned. I will add some back

stretches to my routine. Now if I can just stop eating the kids

chocolate.

Oh yeah , right ! Good luck with those chocolates . You know thats

impossible !! Glad to read that you are taking care of yourself .

Because you do have 2 little ones that need you . Take care .

Irma, 13,DS/ASD.

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In a message dated 11/4/01 9:07:32 PM Eastern Standard Time,

ICANFIELD@... writes:

> Sorry to hear about your back. Did you go to a Chiropractor?

>

>

Thanks for asking Irma. My back is fine these days. I just don't pick-up

Rochelle from the front. I do let her ride piggy back. That doesn't hurt at

all. I did see a Chiropractor for 10 visits or so. I think it helped some. I

haven't had any painful episodes since. Maybe because I haven't done much

cleaning. LOLOLO My DH does the kitchen floor, bathtubs and food shopping. He

is so much more helpful.

I hope we can come up with something so Rochelle won't do that sit anywhere

stuff. Hope she will outgrow it.

Diane

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  • 1 year later...
Guest guest

Becky,

I've typed two messages to you and hit wrong keys at the end, so I'm

not sure if they'll come through to you. I'll email you instead.

Thanks,

loriann

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  • 8 months later...
Guest guest

Re: Physical Therapy

> Are you here in the Portland area Mike?

No, I am actually almost 1000 miles away in Montana. I was referred to OHSU

by a friend. I have seen a half dozen OSs in the last 8 weeks. I am going

with Dr. Crawford's recommendations.

By " full

> knees " , do you mean knee replacements?

Yes.

Mike

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Guest guest

(if I've got the chain of communications right, you're the one whose

doctor is considering TKR) -- may I ask how old you are, give or take? Thanks.

Ann

Re: Physical Therapy

> Are you here in the Portland area Mike?

No, I am actually almost 1000 miles away in Montana. I was referred to OHSU

by a friend. I have seen a half dozen OSs in the last 8 weeks. I am going

with Dr. Crawford's recommendations.

By " full

> knees " , do you mean knee replacements?

Yes.

Mike

------------------------------------------------------------------------------

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Guest guest

Re: Physical Therapy

>

>

> > Are you here in the Portland area Mike?

>

> No, I am actually almost 1000 miles away in Montana. I was referred to

OHSU

> by a friend. I have seen a half dozen OSs in the last 8 weeks. I am

going

> with Dr. Crawford's recommendations.

>

> By " full

> > knees " , do you mean knee replacements?

>

> Yes.

>

> Mike

>

>

>

>

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

----

>

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Guest guest

I asked because I'm 61 and my (now fired) OS told me I was " too young " for a

TKR. I think his real problem was that, he being the team doc for the Sac.

Kings, he'd lost interest in real people.

Ann

Re: Physical Therapy

>

>

> > Are you here in the Portland area Mike?

>

> No, I am actually almost 1000 miles away in Montana. I was referred to

OHSU

> by a friend. I have seen a half dozen OSs in the last 8 weeks. I am

going

> with Dr. Crawford's recommendations.

>

> By " full

> > knees " , do you mean knee replacements?

>

> Yes.

>

> Mike

>

>

>

>

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

----

>

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