Help/advice regarding OT/PT and child faking symptoms

[Guest guest]

Hello! I have not posted anything in awhile but I do read and learn

a lot from all of you. Thanks for all the information.

My son is actually doing great over all. He only has a few days left

on Orapred. He has done fine through the taper. He is on

Methotrexate and will go on Nambumetone when he goes off the Orapred

this Friday. Here is my first dilema. My son will run around just

fine, then when I need him to say walk to the bath tub he says that

his legs hurt and he wants me to carry him. He just seems to be

doing so well most of the time now that we wonder if sometimes he is

trying to take advantage of the situation. The other day in a store

he did not want to walk one minute because his legs hurt but the next

minute he was running after his sister. He told me that they were

hurting still he was just not complaining about it. I think in that

situation he just did not want to walk. However, I know that after a

lot of running around his legs do still seem to get sore. We are

just having trouble distinguishing from real pain and sympathy pain.

Dilema # 2 I will not bore you with all the details but the bottom

line is that I am very frustrated with our PT and OT visits. What

should I expect from PT and OT visits? I really do not think that

they have benefited us very much especially for the amount they have

charged. They charge twice as much as the pediatric rheumatologist.

( Sorry to complain but I could not believe the charges.) The doctor

asked them to give us a home exercise program, information on joint

protection, etc. but I am not really sure that we got all that. The

PT gave us a few excercises but the OT said we really do not need to

do them because at his age he will move around enough. As far as

joint protection she told us to take breaks when traveling long

distances in the car and when he colors a lot. That was it. When

your children are doing O.K. except for maybe a little pain at the

end of a very active day what type of exercises do you do, if any?

What activites do you keep your children from doing, if any? Do you

have any suggestions for questions that I should ask the PT and OT?

What do you do for joint protection?

I appreciate any advice/suggestions you can give.

Thanks,

Christi (Logan, systemic, 4)

[Guest guest]

Hi Christy,

Can't help with dilema #2 but #1 I have my own stories.

was 4 when Enbrel was added to the mix of drugs and it changed

everything.He was able to do everything any other child could do.He finaly

breezed

through the pred tapers instead of being slamed with severe pain and swelling.

He would play hard every single day then in the evening he would creep on his

belly saying he couldn't walk.Something would catch his attention and he

would be up and out of there.This happened every single night and we thought he

was faking because duiring the day he was fine.At his next trip to the rheumy we

brought this matter up and how we thought he was faking it because he wasn't

getting all the sick child attention anymore.The rheumy tweaked his Enbrel

dose just a smidgen and the belly creaping never happened again. realy was

haveing pain but he was also being overdramatic.

My guess is Logan is haveing some minor pain and not faking it but he is a

bright boy and useing it to his advantage.I would just very calmly tell him that

you understand that he is haveing pain but that he can walk.If he insists on

crawling then let him crawl but no more carrying him.That is his reward and

thats what he is looking for.Try and help him understand how lucky he is that he

can walk now and how happy you are for him.Try and find some special time

together because my gut says he just misses the attention and knows that

crawling

and saying he can't walk gets it.Ok off my Dr.Phil soap box,lol

Hugs

Becki and 6 systemic

[Guest guest]

Hi Christi...all kids are different and so are their reactions and I can only

speak for myself. When I was a child say 4-10 I did not fake my pain or my

ability or lack of. If anything when I was moving well and appearing to be fine

it was me trying to forget I had pain I am still guilty of this at 39! If I

say it hurts now just like as a child then it hurt. Now as I got older things

may have changed but not much. I did learn to use the arthritis as I got older

but it was not often. I have since realized that often when I thought I was

" faking " it, there were some underlying issues other than simply not wanting to

do something. Often there was pain but becoming so use to the pain makes it

harder to see (and feel) sometimes....even now I may move slower or have more of

a limp which is obvious before I even recognize the pain....I am hoping some

adults who have been there can chime in with me on this one..hugs to all! Donna

[Guest guest]

It does seem sometimes that they must be faking the pain whe they

are whining one minute and running the next. It isn't always the

case, however. Some things just have higher priority for them.

Just remember that to a 4 yr old, chasing a sister is more important

than walking to the bathtub lol It is easier to put up with pain

when you're doing something you want to do. Both my hubby and I have

joint problems that flare up in similar circumstances as 's

jra, so we often know when he will have a bad day.

I do still carry him at times. He is 60 lbs now, so it's not easy,

but I do what I can when I know he's hurting. We also have a jogging

stroller rated for 75 lbs that we use for long trips, like to the

zoo. It was expensive, but worth it.

I don't have an answer for your 2nd dilemma. has not been

prescribed even any exercises. His dr says basically he'll move

around enough just playing.

Misty and (6, systemic)