Re: PT problems

May 23, 2001

Hi Everyone,

I was hoping for some help. r 3 yrs old is all of a sudden not wanting

to go to PT or OT. This started about 3 weeks ago and he screams. He has

not been feeling well but has been much worse and attended. He is telling

the therapist it hurts before the even complete the stretching. r is

very smart and his therapist believe this is now becoming a behavior

problem. He has been threw so much and with out any control I think he has

control over this. He will just not cooperate and cries. Anyone else had

this problem? He has to have therapy but with out he cooperating it is not

doing a bit of good. I went today and stayed with him but all he wanted was

for me to hold him. Finally the therapist asked me to leave. We have been

threw spells before but this one is quite bad and I don't know what to do. I

know I should be tougher but these kids go threw so much I just want to be

there for him.

Thanks for listening

Pamela

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May 24, 2001

Dear Pamela,

Just read your letter and I know what you're going through. When my Kate

(6 1/2 yrs.old-severe polyarticular) was first dx. at age three, she had

to go to OT and PT 4 times a week due to severe contractures and

aggressive disease activity. Like you said these kids are smart and they

figure out quickly what's going on! Kate had spells where she hurt so

bad and we had a hard time with her therapies. Her therapists and I also

thought some of it was a control thing--as everyone was doing things to

her and she had no choice. The only things I can think of that we did

was to:

Tell her it was okay to cry and even be mad as long as she didn't

scream, hit, and let them do their job.

When it was over they let her pick one 5 minute activity--a doll house,

bike ride etc.. that she wanted to do

We took a camera and got pics so she could show her friends and family

and started a scrap book

We had " special excercise clothes " that she changed into-when it was

over the clothes were changed and she got to pick an activity

She also picked out a doll (from the hundreds that she has! lol!) and

would do therapy with it or if she couldn't then I would do the doll

along with her--It seemed that helped alot as she worried more about how

her doll felt then herself!

That's not to say that we didn't have our bad days but overall with her

it helped as she had some control over things. Most of all be honest and

don't tell them it won't hurt- let them know it will hurt some but they

need to do it so they can play with their friends etc... I know it's

hard with them as they are so young and as a mother it's just as hard on

you. I hope something here will help. Good luck and try to hang in

there!

May 25, 2001

My daughter just turned 4 and we have been going to PT for over a year now.

There were episodes where she refused to ride the bike. She just sat on the

bike for ½ hour. I was in tears b/c I was so frustrated. I drive 45

minutes one way to the Children's Institute for the PT and it seemed like

some days were just wasted. They had a behavorial psychologist join the

team. We were also seeing the behavorial psychologist for feeding therapy

b/c my daughter had not gained any weight in over a year and was not on the

charts for weight. It really helped!! She has gained 3 pounds since

January. They give you techniques to use. I know my daughter was not

eating b/c she is just not hungry due to the JRA or the medicine but they

also felt it was a control issue as well. The physical therapist used a

sticker system for rewards which helped as well. You could try the stickers

or something else. Have you used splints for the contractures. My daughter

wore splints on her legs at night b/c she had contractures due to the

arthritis in her knees and her legs are perfectly straight now. Hope this

helps somewhat.

Chris

Re: PT problems

Hi Everyone,

I was hoping for some help. r 3 yrs old is all of a

sudden not wanting

to go to PT or OT. This started about 3 weeks ago and he

screams. He has

not been feeling well but has been much worse and attended.

He is telling

the therapist it hurts before the even complete the

stretching. r is

very smart and his therapist believe this is now becoming a

behavior

problem. He has been threw so much and with out any control

I think he has

control over this. He will just not cooperate and cries.

Anyone else had

this problem? He has to have therapy but with out he

cooperating it is not

doing a bit of good. I went today and stayed with him but

all he wanted was

for me to hold him. Finally the therapist asked me to

leave. We have been

threw spells before but this one is quite bad and I don't

know what to do. I

know I should be tougher but these kids go threw so much I

just want to be

there for him.

Thanks for listening

Pamela

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May 25, 2001

Hi Pamela:

Mickey was resistant (though not as much as r) to her physiotherapy. I'm

not sure I can offer any better ideas than the ones already sent by

and ... but one thing that really made a difference with

Mickey was when they started using the immersion tub ( a big stainless steel

tub, looked like an especially deep horse trough with a seat in it!) to do

her physio. They usually started her physio in there and really made a lot

of the exercises and stretches seem like a game. The warm water really

helped soothe the pain, and the therapist was SO good with her, I could not

believe how patient the woman was! But it did go better when I did not stay

where Mickey could see me. They had a two way mirror wall, with a waiting

area. She really did put on quite a show if I stuck around, at least for the

first few weeks. After she became more comfortable with the therapist and

developed a trusting relationship with her, it went much better, and it was

fine then if I stayed to watch and learn. I think a HUGE difference is made

if the therapist takes the time to build a bond with the child. We live in a

small town and just luckily have an excellent physio facility here. We get a

lot of the " personal " touch, and for children, it makes so much difference.

Maybe rs therapist could take a few sessions just to put puzzles

together with him, or play easy games that produce the required moves or

stretches? That's how they started with Mickey. Rolling a big ball along,

dressing dolls up... all requiring movement that helped her joints.

Good luck.

Lynn

From: " Pamela Reagan " <pcflyn@...>

Reply-

Date: Thu, 24 May 2001 03:09:58 -0000

Subject: Re: PT problems