4 wasRe: Re: Update on Caitlin, IL-1 trial

[Guest guest]

Hi -

Thank you for the reply. I think Caitlin and Aundrea are on the same page

much of the time. I have spoke with the teachers before and I'll mention it

again. One of the great things about it being a small school is that for the

most part, there are no real big problems with bullying. All the teachers know

all the kids, I know most of the kids and most of the parents. And I think that

some of the problem is like Aundrea and the pizza.... even if kids don't comment

on her size, it bothers Caitlin to be so small and slow. So we've got a bit of

a pity-party here too....

But she is not hearing her dear old mother on the issue.... So maybe a

counselor will have some better luck! I'll let you know how it goes.

And I'm so sorry to hear that Aundrea is still having stomach issues..... that

stinks. Hope things turn around...

Best hopes-

Colleen

sonia1md <sonia1md@...> wrote:

Colleen,

Geez, I had really hoped that this trial would have given Caitlin

better results! Its good to hear there has been some improvement

but it sure isn't enough!

Aundrea has been more emotional lately about her friends and this

disease...She always seems more tearful about it whenever she is

feeling poorly. Last night she was crying because she felt rotten

and then she went on about how her friends don't understand and that

they just go on about their lives without any thought to her. She

was complaining because at every party there is pizza and its a

favorite food of hers, now that she has GERD she can't eat it and so

she was having a pity party...

I told her that whenever I am dieting it can be harder to be around

my friends that are skinny and get to eat whatever they want because

I will want to eat it too...but when I am hanging out with other

people that are watching their weight then its easier to stay on

track...i think that is why when she was a jra camp she was so

content and had such a good time because basically they were all in

the same boat....on the other hand I told her that her friends

aren't intentionally trying to hurt her, its easy to forget about

someones else struggles.

Intentional teasing is another matter...Its cruel and is more likely

to occur I think during the " prednisone " stage than perhaps any

other. I am still considering the option of a couneslor for

Aundrea. I think its a good idea for Caitlin. She has had such a

tough road and for such a long time.

I hope she gets stockpiles of candy and has an awesome trick or

treat night!

If you do pursue the counseling let me know how it goes and if you

or Caitlin find it to be helpful.

P.S. We read the keeping the secret book to Aundrea's class for the

last 3 years and answered questions etc...I think its a helpful

thing to do...Sometimes kids will be more understanding if their

eyes are opened to something they don't understand...One year I read

the book and the other 2 the teacher did and drea was the one that

responded to their questions.

Blessings,

(aundrea 11 systemic jra/gerd)

>

> 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)

>

>

> ---------------------------------

> Everyone is raving about the all-new .

>

>