RE: Re: Iv injected Steroids - To Robin

[Guest guest]

Thank you Robin. This would be the way I too think you would straighten out

contractions. And that it takes time since the muscles etc has to lengthen.

may I ask you who helped you with the whole " plan " ? Was it a reumatologist , a

physical therapeft or someone else ? I need to take Jackie to the right person

to get this help because I don't thibnk Dr. Wilking at Shriners here in Houston

is on the same page as me. He insists on IV steroids. And he has only seen

Jackie once, in November for 1 hour. She has a sed rate of 26 and that is not

soo high that you would go for IV steroids, I think. They tried to give her the

IV today but missed the bloodvessel and it was so painfull for her so she wanted

us to leave and be done for today. I'm not sure if I will go back tomorrow or

wednesday to try again or just try to find a place that can treat her the way I

belive will help more which is the same as you have explained.

I hope you have time to tell me more.

Thanks

, mum to Jackie 11 syst.ply JRA

@...: Robbin40@...: Sat, 5 Jan 2008 09:22:28

-0500Subject: Re: Re: Iv injected Steroids - need advice

,I do not have any Idea on the IV Injections but someone in the group

will have information for you on this. I do having experience in the

Contractures in the legs. As 's Left leg was so bent at age 12 that

Physical Therapy was not helping. So the PT started with the Serial Casting. She

had to be careful with the left leg as the Muscle's and Ligaments were so

tight.She told me if she worked to hard and straightened it to fast she could do

more damage. So alittle at a time 's leg was straightened. When the leg

was finally straightened out was not finished. After 3 months of this

Finally she was able to stand. But she had to sleep with the cast every night.

for 4 months due to the leg wanted to bend. It took 8 months but was

able to walk again. She could not handle the under arm crutches so she has the

forearm crutches which helped her and then she said I do not want to see another

Wheelchair or Crutches again. She has only had to use the Wheelchair a few times

since. She was not given any IV injections but was given Pain meds on top of her

Arthritis Meds. As the process is painful. It took her 8 months to walk again. I

know a femur can be hard to heal on some kid's. But you mentioned your child has

not walked in 3 yrs. Why are they slow in getting the mobility going again? Has

the Dr done a Bone scan to check the bones in her legs as this was done before

the Serial casting started on and one area was pin point to be careful

with as her Femur bone was very thin. Once the Straightening was put in

Braces for about 4 months so she could walk during the day. At night the Splint

was put on to sleep in. One thing we also had to do was build up her muscles. So

this was done by Walking, Stationary bike riding and kicking a ball. We also had

filled 2 socks with sand and laid this on her feet and she had to lift the socks

while sitting down. She has Poly JA with related issues. So I understand the

Poly part of this. The underarm Crutches caused the shoulders to flare as most

kid's do not use crutches in the right way. So forearm crutches were better.

Most important is getting the Muscles stronger. I had her lifting 1 pound cans

to help with the arms and hands. Oddly enough I got her doing this and she was

helping me put up groceries and rearrange the kitchen and she did not even know

she was doing PT lolol. Interesting as helping around the house Kid's do not

realize it is also Therapy for them. Picking up thing's which shows the child

the right way to pick something up from the floor. WE parents need to learn

this. Never bend over to pick something up. But we need to squat with the back

straight having our legs do the work. Just something to help after she is

walking. Have her watch her shoes. She has to see the toe of the shoe straight

left right left right. As had to wear Braces from the shoe up this

helped her learn to not walk with the toe any direction but straight. Hope this

helps you.Robbin**************Start the year off right. Easy ways to stay in

shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489[Non-text

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