RE: knee injection / charts, etc

[Guest guest]

Hi,

I liked the way Becki explained it. Children can get accustomed to

taking the meds and it becomes normal, as much a part of the everyday

routine as brushing ones teeth. Sometimes, though, they just get sick

and tired of it. If they're real sick and start taking meds regularly

and notice a huge and obvious difference in how they feel and how well

they're able to function they're probably more likely to go along with

it. If they're flaring, having a lot of pain, and the meds aren't doing

the trick ... they probably figure " why even bother? " If they're very

young and don't understand the cause and effect, trying to explain that

the benefits to present behavior can have positive long-term effects,

they probably focus only on the here and now and know they don't like

whatever is going on.

was very compliant about taking all of his meds until one

surprising day when he shocked all of us by just outright refusing.

Everything was ready, his vital signs had been charted, when he said I

hate this shot and stood up and left. He made a bee line straight

towards the door and disappeared outside. He wasn't at the car. He

wasn't anywhere to be seen. One nurse called for security. The rest of

us headed out in various directions. My daughter was the first to spot

him, sitting on the grass non chalantly, beneath a coconut tree outside

hopsital grounds, the rest of us worried and frazzled. I had no idea

that was going to happen.

Josh did still get his shot that day. The nurse actually came outside to

give it to him. The very same nurse left shortly afterwards. Was this

the straw that broke the camel's back? Did my son's outburst cause her

to re-think her career? We don't know. My daughter likes to think so,

sometimes tries to make Josh feel guilty about how he made her feel that

day while just trying to do her job and help make him well.

Josh felt needed to take a more active role in decisions about his

arthritis treatment. He met and spoke with his doctors, they

talked it out and compromised. They agreed on taking the oral dose twice

a month so long as he'd take the shot consistently every other week. For

, the oral dose was never as effective and he got more side

effects from it ... but that was workable. He felt like he'd won a

victory, especially when he continued to do well and we discontinued the

oral dose altogether.

Last month we knew we had to do something, make some kind of change, to

help the arthritis activity that had started up in his wrists again and

the morning stiffness that seemed to be returning. He agreed that as

long as he could still lower his steroid dose he'd be willing to go back

to weekly MTX injections again, at least temporarily. He preferred that

to taking the 6 little pills every other week. As this past Friday

approached he reminded me that this might be his last every week

injection. Somehow he heard something that I didn't, about doing it for

a month to see if it helped and then going back to every other week. I

don't remember the talk going quite like that. I thought it was

to be a more permanent measure, until he was pain and symptom-free

again. We'll have to see how things go. His last SED rate was around 25.

We like to use reinforcement charts for a lot of different things at

home. I started doing that way back when, before JRA, even during the

kids' potty training ... just to recognize the kids doing what

they're supposed to be doing, acknowledging good behavior. For a long

time Josh had a medicine chart where he'd get a sticker each time he

took his meds. The stickers would add up and after a pre-determined

amount he could get a prize: go out for an ice cream cone, see a movie,

things like that. For my daughter, maybe a new outfit for a doll (when

she was younger) or something else special. Things we'd normally do

anyway, probably, but we tied it in with being a reward for being a good

kid.

With his growth hormone injection program they use a similar system. We

weren't going to use a chart for that because we talked about how the

reward was intrinsic. If he took it consistently he could expect growth,

which was reward enough. Caremark, though, has a program where when you

order the new meds on time and use them correctly, they send a sticker

with the new shipment. When you collect 5 stickers you mail them in to

redeem them for a treat. A Blockbuster gift card or another coupon of

some sort. Makes it worthwhile, tangible (and fun) for them, aside from

the other benefits they get.

It can be more challenging at such a young age but maybe reinforcement

charts is something you might consider using for Genevieve if you don't

already? Explain the procedure, whatever it is (I'm thinking about

eyedrops) and set guidelines for acceptable behavior, giving the child

some amount of control over the situation. For example, Josh knew when

he was little that he was allowed to cry about a blood draw, that he

could choose which arm to use, even which kind of bandaid he wanted ...

but he knew he was expected to sit without fidgeting, to cooperate in

having it done. When you're firm and consistent a lot of kids will try

their best to follow through. Knowing that if they do, they might be

rewarded. At least until the behavior becomes habituated.

Just thought I'd mention something that helped us.

Take Care,

Georgina

and Therese Z. wrote:

> The amnesia drug sounds very interesting. Genevieve had a " cocktail " of

> Vercid, Morphine and something else when she had her knee MRI done. She

> never sedated. They tried 2 days in a row. She only became agitated and

> uncomfotable. She kept ripping the IV out and wouldn't sleep. They

> eventually had to put her under general anethesia. I wonder if there are

> other options beside the Versid, etc. and general. I hate putting her

> all the way under, even if it is for a short period of time. It scares

> me, with the breathing tube....

>

> Do these children ever get used to what they need to go through? or does

> it get worse, because they can anticipate what is coming as soon as you

> pull in the hospital/clinic parking lot? is it better when they get

> older and you can explain things? or just different?

>

>

> Therese

> Genevieve (DOB 10/02/02)

> Pauci ANA pos.(dx 1/16/04); Uveitis (dx 1/27/04)

[Guest guest]

Aw poor Josh I felt for him when I read about him just getting up and being like no more. I actually read a story about a kid and his struggle with taking meds and how he came to the realization that its important. I know for me when Im taking meds and feeling alright I think to myself why do I need to keep taking all of this then... and then those times when I dont feel well and all I can think is whats the point. I thought I would pass on the story though.. The kid doesnt have JRA but does have a chronic illness so its easy to relate to the whole not wanting to take the meds thing..

Sets an Example - Lucile Packard Children's Hospital

(poly JRA and Spondy, 19)

[Guest guest]

- Thank you so much for posting this story. I am forwarding it to he needs to read this. I hope you are feeling better soon and all goes well with you. Michele (16,pauci & spondy)

-----Original Message-----From: bncknwurnumber@... [mailto:bncknwurnumber@...] Sent: Monday, February 16, 2004 1:55 PM Subject: Re: knee injection / charts, etc

Aw poor Josh I felt for him when I read about him just getting up and being like no more. I actually read a story about a kid and his struggle with taking meds and how he came to the realization that its important. I know for me when Im taking meds and feeling alright I think to myself why do I need to keep taking all of this then... and then those times when I dont feel well and all I can think is whats the point. I thought I would pass on the story though.. The kid doesnt have JRA but does have a chronic illness so its easy to relate to the whole not wanting to take the meds thing..

Sets an Example - Lucile Packard Children's Hospital

(poly JRA and Spondy, 19)

[Guest guest]

Hi ,

Wow! What a story. That really drives home the reality of having to take

one's prescribed meds, as it sometimes is a life or death situation. I'm

so glad made it and understands the importance, now.

Aloha,

Georgina

bncknwurnumber@... wrote:

> Aw poor Josh I felt for him when I read about him just getting up and

> being like no more. I actually read a story about a kid and his

> struggle with taking meds and how he came to the realization that its

> important. I know for me when Im taking meds and feeling alright I

> think to myself why do I need to keep taking all of this then... and

> then those times when I dont feel well and all I can think is whats the

> point. I thought I would pass on the story though.. The kid doesnt have

> JRA but does have a chronic illness so its easy to relate to the whole

> not wanting to take the meds thing..

>

> Sets an Example - Lucile Packard Children's Hospital

> <http://www.lpch.org/NewsFeatures/anthonyHollingsworth.html>

>

> (poly JRA and Spondy, 19)