4 Michele was RE: Update on Caitlin, IL-1 trial

[Guest guest]

HI Michele-

Thanks for the advice.... I have spoke to her classes in K and 1st.... In

second, Caitlin didn't want me to. That's part of the problem now.... I know

it's normal for kids to not want to be different. But Caitlin is becoming

vehement about not wanting to talk about her arthritis and how it affects her.

Her teachers are great, so I know they will put a stop to anything they hear.

The playground workers and office staff are also very involved and aware... but

at some point, Caitlin will have to " own " it for herself. No matter how I try

to phrase it or approach it with her, she just snaps " I don't want to talk about

it! "

Anyway, I give the psychologist a shot. But I will mention it to the teachers

again too....

Thanks again-

Colleen

" Tepper, Michele " <MTepper@...> wrote:

Sorry to hear about the teasing going on - how awful! Would it be

possible to talk to the teacher about the situation? Or perhaps going

into the classroom and doing a quick educational talk about JRA and the

meds that sometimes cause problems? In third grade the kids are

certainly old enough to learn about such things. Perhaps mention that

some kids need some meds for allergies for example, and those may make

you tired. Or some kids need inhalers for asthma and those may make you

jittery and the med that Caitlin must take may make you look like you

gained weight. Something along those lines, relate it to what they may

know. Maybe give the teacher the pamphlets from the Arthritis Foundation

if you have not already. I passed those out when was first

diagnosed and they did help. Seeing a psychologist is not a bad idea

either. It did help Chris. Good luck, Michele (19,spondy)

________________________________

From: [mailto: ] On

Behalf Of Colleen

Sent: Monday, October 30, 2006 1:56 PM

Subject: Update on Caitlin, IL-1 trial

Hi-

Just a quick update on the Il-1 trap trial Caitlin is participating in.

We decided to continue for now. She has had a small improvement over the

last two months... nothing tremendous. I am still blinded to her SED

rate and CRP... but her D-Dimer and fibrinogen have come down a little.

Joint by joint exam still shows swelling and tenderness in everything

but one ankle, elbows, neck and one wrist. Her fingers are still very

bad... but she has been functioning well and has only missed three days

of school so far. No other big options on the horizon... so status quo.

She's still on 10mg daily pred. We're going to give her an oral pulse

(72mg / day for five days) starting the day after Halloween. We'll try

to taper the pred after that, starting 7.5 for a while, then hopefully

down to 5.

She's in third grade now. We're fortunate that it's a small school, so

she has known most of the kids since kindergarten. And yet, this year,

the teasing has started. I have dreaded it... But her cheeks are puffy

and she is still battling facial warts around her mouth and on her

forhead. It's has taken a toll on her personality and I find she is

quicker to anger (the pred doesn't help) and grows sullen easily. I

mentioned that I thought it might be time to find somebody to talk with

about chronic pain (a child psychologist perhaps) and she broke into

tears. " They all call me Mini-Me!! I'll always be the smallest and the

slowest! " I gave the old 'everybody gets teased for something' speech...

but inside, I just cried. I'm researching counselors now.

It just sucks.... which is why I have waited so long to post. The Il-6

trial was supposed to be underway... but they postponed yet again. I

have a suspicion they will move to file for adults and skip the

pediatric trial. They should come live with some of our kids for

awhile... and maybe time would start to have a different meaning.

Perhaps a year or two is nothing when forecasting a profit margin

potential... but it's a hell of a long time to watch your child suffer

and start to become damaged permanently.

All in all though... much to be grateful for. My sweet girl will be

trick-or-treating on her own two feet this year... instead of on my back

or in a wagon A very good thing indeed.

Fall happiness to all and best wishes for good health-

Colleen (mom to Caitlin, 8, systemic)

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