RE: Caroline's Remicade

April 24, 2006

Sorry to hear that Caroline had such a rough go today. How wonderful

that you get to stop the pred!! Here's hoping that the Remicade is

enough for her and everything improves. Michele

Caroline's Remicade

Hey everyone. We are at the hospital right now getting Caroline's

Remicade. We bumped up her dosage to 10mg/kilo for today's infusion.

Our infusion last month was 4mg/kilo so we went up quite a but from

last time. We had a LOT of problems with the IV. They tried three

times with no success. She was throwing herself and kicking and

screaming. I have never seen such a reaction from her. The switched

arms and I think her veins were " rolling " so they were unable to do

that arm either. They finally sedated her, brought in a new IV nurse

and got it in. They are thinking they will sedate her every time now...

So, far we haven't had any reactions. She did wake up once and puked,

but that was about an hour ago..

The good news is that we don't have to go back for 6 weeks - depending

on her eyes!!!!

We also get to stop the oral prednisone after today!!! Yeah! Hopefully

the Remicade is enough and we won't ever have to use that stuff again!!

We see Dr. at the end of May and then Dr. Akin in June.

Alia and Caroline, age 4, poly and uveitis

April 24, 2006

Hi Alia. I am so sorry to hear that Caroline is having more difficulty. Have

you ever taken her to an immunologist? My daughter saw Dr. Hoyt at the U. I

remember speaking to her on the phone before her 1st appointment. She was quite

helpful and often saw rheumatology patients. I will keep praying for you guys.

I just wish something could be easy for Caroline. She never seems to get a

break! Kim

In a message dated 4/24/2006 9:42:49 PM Central Standard Time,

Alia.Pranke@... writes:

I am growing more and more frustrated with this disease!! I can't

understand why she can't respond like most of the other kids. As if

the arthritis wasn't bad enough, she gets to deal with all this

other crap!! Ok, I know I am venting now, but it's been a very long

day with very few highs..

April 24, 2006

Hi Alia. The immunologist is more looking at the actual immune system. I

don't know if Caroline has had these kind of tests, but I remember she did lots

more blood tests. She was looking at things bigger than just neutrophils and

lymphocytes. She broke down the blood to T cells, Natural killer cells, and B

cells. She also looked at the immunoglobulins. I don't remember what else. My

daughter saw her many years ago now. I don't know maybe Caroline has already had

those things tested, but if she hasn't it might be worth looking into. Kim

In a message dated 4/24/2006 10:10:51 PM Central Standard Time,

Alia.Pranke@... writes:

Hi kim. Thanks for the kind words. What is an immunologist? I know I

have heard of them, but honestly I am not really sure what they

do.... At this point I am up for anything to stop this vicious cycle!

Alia and Caroline, age 4, poly and uveitis

April 24, 2006

-My poor sweet Caroline. I had flashbacks to Nicks botched IV starts

when I read your post. How do they sedate?? is it a liquid she

drinks.

How is she doing now?? is she home and doing ok???

On the up side, quiting the prednisone is AWESOME news!!!!

Give her a big hug and kiss from all of us.

hugs Helen and (8,systemic)

-- In , " Alia Pranke " <Alia.Pranke@...>

wrote:

>

> Hey everyone. We are at the hospital right now getting Caroline's

> Remicade. We bumped up her dosage to 10mg/kilo for today's

infusion.

> Our infusion last month was 4mg/kilo so we went up quite a but

from

> last time. We had a LOT of problems with the IV. They tried three

> times with no success. She was throwing herself and kicking and

> screaming. I have never seen such a reaction from her. The

switched

> arms and I think her veins were " rolling " so they were unable to

do

> that arm either. They finally sedated her, brought in a new IV

nurse

> and got it in. They are thinking they will sedate her every time

now...

>

> So, far we haven't had any reactions. She did wake up once and

puked,

> but that was about an hour ago..

>

> The good news is that we don't have to go back for 6 weeks -

depending

> on her eyes!!!!

>

> We also get to stop the oral prednisone after today!!! Yeah!

Hopefully

> the Remicade is enough and we won't ever have to use that stuff

again!!

>

> We see Dr. at the end of May and then Dr. Akin in June.

>

> Alia and Caroline, age 4, poly and uveitis

>

April 24, 2006

Hi kim. Thanks for the kind words. What is an immunologist? I know I

have heard of them, but honestly I am not really sure what they

do.... At this point I am up for anything to stop this vicious cycle!

Alia and Caroline, age 4, poly and uveitis

>

> Hi Alia. I am so sorry to hear that Caroline is having more

difficulty. Have

> you ever taken her to an immunologist? My daughter saw Dr. Hoyt at

the U. I

> remember speaking to her on the phone before her 1st appointment.

She was quite

> helpful and often saw rheumatology patients. I will keep praying

for you guys.

> I just wish something could be easy for Caroline. She never seems

to get a

> break! Kim

>

> In a message dated 4/24/2006 9:42:49 PM Central Standard Time,

> Alia.Pranke@... writes:

> I am growing more and more frustrated with this disease!! I can't

> understand why she can't respond like most of the other kids. As

if

> the arthritis wasn't bad enough, she gets to deal with all this

> other crap!! Ok, I know I am venting now, but it's been a very

long

> day with very few highs..

>

April 24, 2006

Alia, Caroline, sending BIIIG hugs!

This " being cruel to be kind " business sure sucks doesn't it?

BTW- what are " rolling " veins?

Jo

Bayly, 3, extended oligo

>> Hey everyone. We are at the hospital right now getting Caroline's

> Remicade. We bumped up her dosage to 10mg/kilo for today's

infusion.

> Our infusion last month was 4mg/kilo so we went up quite a but from

> last time. We had a LOT of problems with the IV. They tried three

> times with no success. She was throwing herself and kicking and

> screaming. I have never seen such a reaction from her. The switched

> arms and I think her veins were " rolling " so they were unable to do

> that arm either. They finally sedated her, brought in a new IV

nurse > and got it in. They are thinking they will sedate her every

time now...> > So, far we haven't had any reactions. She did wake up

once and puked, > but that was about an hour ago.>

> Alia and Caroline, age 4, poly and uveitis

April 25, 2006

Poor Caroline. She just doesn't catch a break! I sure hope everything

is better this morning! I'm thinking about you all!

Ashlee (Madison, 3 1/2, Poly and Iritis)

Re: Caroline's Remicade

Hi kim. Thanks for the kind words. What is an immunologist? I know I

have heard of them, but honestly I am not really sure what they

do.... At this point I am up for anything to stop this vicious cycle!

Alia and Caroline, age 4, poly and uveitis

>

> Hi Alia. I am so sorry to hear that Caroline is having more

difficulty. Have

> you ever taken her to an immunologist? My daughter saw Dr. Hoyt at

the U. I

> remember speaking to her on the phone before her 1st appointment.

She was quite

> helpful and often saw rheumatology patients. I will keep praying

for you guys.

> I just wish something could be easy for Caroline. She never seems

to get a

> break! Kim

>

> In a message dated 4/24/2006 9:42:49 PM Central Standard Time,

> Alia.Pranke@... writes:

> I am growing more and more frustrated with this disease!! I can't

> understand why she can't respond like most of the other kids. As

if

> the arthritis wasn't bad enough, she gets to deal with all this

> other crap!! Ok, I know I am venting now, but it's been a very

long

> day with very few highs..

>

April 25, 2006

Thanks Ashlee -

The rash looks much better this morning. It's barely there. We are

waiting to hear from the doctor and to see if it is going to come

back once the Benadryl wares off....

Alia and Caroline, age 4, poly and uveitis

> >

> > Hi Alia. I am so sorry to hear that Caroline is having more

> difficulty. Have

> > you ever taken her to an immunologist? My daughter saw Dr. Hoyt

at

> the U. I

> > remember speaking to her on the phone before her 1st

appointment.

> She was quite

> > helpful and often saw rheumatology patients. I will keep praying

> for you guys.

> > I just wish something could be easy for Caroline. She never

seems

> to get a

> > break! Kim

> >

> > In a message dated 4/24/2006 9:42:49 PM Central Standard Time,

> > Alia.Pranke@ writes:

> > I am growing more and more frustrated with this disease!! I

can't

> > understand why she can't respond like most of the other kids. As

> if

> > the arthritis wasn't bad enough, she gets to deal with all this

> > other crap!! Ok, I know I am venting now, but it's been a very

> long

> > day with very few highs..

> >

April 25, 2006

-Alia,

Im so glad to read Caroline's rash is looking better this morning.

I was thinking about her as I drove home, hoping that today would

bring better news.

Now, where do we go from here???

hugs Helen and (8,systemic)

-- In , " Alia Pranke " <Alia.Pranke@...>

wrote:

>

> Thanks Ashlee -

>

> The rash looks much better this morning. It's barely there. We are

> waiting to hear from the doctor and to see if it is going to come

> back once the Benadryl wares off....

>

> Alia and Caroline, age 4, poly and uveitis

>

> > >

> > > Hi Alia. I am so sorry to hear that Caroline is having more

> > difficulty. Have

> > > you ever taken her to an immunologist? My daughter saw Dr.

Hoyt

> at

> > the U. I

> > > remember speaking to her on the phone before her 1st

> appointment.

> > She was quite

> > > helpful and often saw rheumatology patients. I will keep

praying

> > for you guys.

> > > I just wish something could be easy for Caroline. She never

> seems

> > to get a

> > > break! Kim

> > >

> > > In a message dated 4/24/2006 9:42:49 PM Central Standard Time,

> > > Alia.Pranke@ writes:

> > > I am growing more and more frustrated with this disease!! I

> can't

> > > understand why she can't respond like most of the other kids.

As

> > if

> > > the arthritis wasn't bad enough, she gets to deal with all

this

> > > other crap!! Ok, I know I am venting now, but it's been a very

> > long

> > > day with very few highs..

> > >

April 25, 2006

Thanks Kim. We might just want to look into that..

Alia and Caroline, age 4, poly and uveitis

________________________________

From: [mailto: ] On

Behalf Of mnmomof1@...

Sent: Monday, April 24, 2006 10:20 PM

Subject: Re: Caroline's Remicade

Hi Alia. The immunologist is more looking at the actual immune system. I

don't know if Caroline has had these kind of tests, but I remember she

did lots

more blood tests. She was looking at things bigger than just neutrophils

and

lymphocytes. She broke down the blood to T cells, Natural killer cells,

and B

cells. She also looked at the immunoglobulins. I don't remember what

else. My

daughter saw her many years ago now. I don't know maybe Caroline has

already had

those things tested, but if she hasn't it might be worth looking into.

Kim

In a message dated 4/24/2006 10:10:51 PM Central Standard Time,

Alia.Pranke@... writes:

Hi kim. Thanks for the kind words. What is an immunologist? I know I

have heard of them, but honestly I am not really sure what they

do.... At this point I am up for anything to stop this vicious cycle!

Alia and Caroline, age 4, poly and uveitis

April 25, 2006

Thanks !!

Alia

________________________________

From: [mailto: ] On

Behalf Of Tepper, Michele

Sent: Monday, April 24, 2006 2:49 PM

Subject: RE: Caroline's Remicade