update

March 4, 2006

In a message dated 2/27/2006 10:52:38 P.M. Eastern Standard Time,

Arthurnator@... writes:

Then Lovell told him I hope I don't get your cooties or I will

have to find the girl and kiss her too.Told him he's never seen such a bad

case of cooties and just after started to believe him,in a very

serious

voice told him that it was just the chlorine,what was saying all along.

Just totaly differant then Vanderbilt in Nashville.I will never forget when

old man Lawton

Hi Becki:

A doctor who is good at his work and has a sense of humor is such a nice

find. Cooties.......I love it. Sounds like you have found a great place for

's treatment and a doctor who can put him at ease.

Take care.

Patty

March 6, 2006

Hey Becki,

Don't have a lot of time to respond to the intimant details of your

emotional visit, but so happy you are positive. I hope they keep

good tabs on the wrist and that good progress results.

Hugs,

stacia and Hunter 9 systemic, iriitis

>

> Hi all,

> It was quite an intersesting apointment with the Enbrel king today

(Dr.Lovell

> at Cincinnati Childrens).

> Instead of being the property of Amgen and only known as DAL and a

# it was

> Larson.

> The visit was just as long and thorough.I dressed in baggy

sweat pants

> that could be pulled over his knees but he still had to change

into paper

> shorts.Dr Lovell just wasn't sure if he felt anything or not and 3

months ago

> Vanderbilt immediately felt through his jeans and found some small

amount of

> swelling.Or so they said!

> does have active arthritis in his lft wrist with some lost

ROM but no

> pain or tenderness,it was a surprise to all of us.Everything else

looks great

> and in general looks great.

> Dr.Lovell started looking at the cover paige with s

weight,36.2kilo,and

> I just knew he was finaly going to up the Enbrel to the starting

dose of .4mg

> per kilo which would be .6 2x a week or 30mg instead of the 1ml or

25mg 1x

> weekly.

> He got on his palm pilot and started talking about outgrowing his

dose of

> MTX(7.5mg).He continued to explain about a study that consisted of

5mg M2 and

> 10mg M2 and how the 5mg M2 was the same as placebo and the 10mg M2

helped.Not

> saying the dose was 5mg verses 10mg.

> It was explained to me with weighing 80 lbs 7.5mg was the

same as

> giving sugar pills or a placebo.He was going to just up his MTX to

10mg but with

> the way grows in height and weight it would still be

borderline and within

> 6 months definately placebo again.He went ahead and raised the MTX

to 12.5mg

> with the hopes of finding absolutely nothing again in 6

months.Then if a year

> with no sighns or symptoms tapering meds again.

> He is so kid friendly. had a terrible skin reaction to the

pool and

> broke out in a nasty rash Sunday night.Lovell started teasing him

about having

> cooties and the only way to get rid of them was by kissing the

girl that gave it

> to him.Davied floated and floated on his back and a 9-10 yr old

girl swam

> under him a few times. all of a sudden started scraching his

arms until they

> were bright red.Then Lovell told him I hope I don't get your

cooties or I will

> have to find the girl and kiss her too.Told him he's never seen

such a bad

> case of cooties and just after started to believe him,in a

very serious

> voice told him that it was just the chlorine,what was saying

all along.

> Just totaly differant then Vanderbilt in Nashville.I will never

forget when

> old man Lawton told him to get on the table. being 4 at the

time hesitated

> and Lawton yelled at him about how he wasn't his only patient,it's

always

> such a rush.

> It is so worth the 307 mile drive to get the JRA chair for CARRA

to see your

> child,especialy since they treat your kid like a kid.

> The added bonus is seeing and and while unexpexted

this time

> Uncle Rusty.The handsome man is not bald,it's short but good

looking on him and

> oh so soft.He has great hair!

> Got to talk to Tree who sounded great.She is progressing everyday

and

> hopefully by this summer she will be more out and about.

> The kicker to the trip was as soon as we walked into rheumatoligy

was a

> friend of mine from our AJAO checking in her 7 yr old daughter

with SOJRA who sees

> Dr.Graham.They live just outside of Nashville also and HATE

Vanderbilt

> too. seen his dad who headed up ped cardiology when he was 2

weeks old.

> Traiter,needs to come back to Nashville,live around family and fix

our

> rheumatoligy department.

> I'm content with the decision to raise the MTX up 5 mg.Still a far

cry from

> the 25mg sub q was on at 3 yrs old.

> Love and hugs

> Becki and 7 systemic

>

March 14, 2006

Hi :

Sorry to hear that you are still flaring and Remicade is not working. I

hope the Humira is the ticket for your feeling better and your tonsil infection

clears up quickly so you can give it a shot!

Sounds like your Mom is surprising the medical professionals, go Mom! I

pray she defies the statistics and continues to surprise the heck out of all of

them:) That is great news that she will be coming home soon. I am sure she

will feel so much better being in her comfy, familiar home with family.

I have been thinking of her/you all and praying every day and will continue

to keep her and all of you in my thoughts and prayers.

Thanks for the update . Please keep us informed as you can. We are all

thinking of you.

Take care.

Patty

March 14, 2006

,

I am sorry that the remicade wasn't the answer for you. I know the

last thing you would want is another shot, so I sure hope that this

Humira at least has a pay-off in getting you over this flare.

I am glad to hear that your mom is already surpising the docs with

springing from the hospital early.

Of course I am keeping you and your mom both in my prayers. How are

your sisters doing? I forget when their due dates are? I bet you

are the " coolest " aunt!

(aundrea 10 systemic jra)

-

-- In , Salvucci <lisa_salvucci@...>

wrote:

>

> So my doctor decided that Remicade is not working for me at all,

the flare has continued on and at this point its not worth it to

hope that the Remicade will kick in because its leaving me at risk

for damage. So I will be starting Humira. I am not to happy about

starting another shot medication, but if it means feeling better

then I will give it a try. I wont be able to start it this week

because I have some sort of infection going on in my tonsils (tonsil

swabbie thing still pending.. its not strep.. but what is it? they

dont know)..so until my tonsils clear up I'm not allowed to start

the humira. Hopefully this will be the answer to my problems.. i've

been in this flare for a few months now.. and i would love to be

feeling good again..

>

> My mom finally has an official diagnosis she has stage IV large

cell lung cancer.. its so important if anyone still smokes to please

stop now. My mom hasn't smoked in eight years and yet she still

ended up with cancer, please try your hardest to prevent this by not

smoking. It has been devestating watching this all happen. She is

still in the hospital but should be coming home sometime this week.

She began radiation on her brain and lungs (the brain has metestatic

lung cancer on it) and she will do chemotherapy once the radiation

ends.. She has a long hard fight ahead of her.. and statistics are

not in her favor.. but she is going to fight like hell! Thank you to

everyone who has been keeping my mom in their prayers and thoughts..

she has already made more strides then they expected (she is going

to leave the hospital a week before they thought she would be able

to) and if you could continue to keep her in your prayers or

thoughts that would be very appreciated.

>

> Lots of Love

> (JAS, 21)

>

March 15, 2006

- Way to go for you mom! Tell her to keep fighting!!! Beat all those

odds...

I hope that Humira will work for you. I know it has done wonders for Allie -

hopefully will chime in! Stay strong .

Alia and Caroline, age 4, poly and iritis

Evan Guy, 37 weeks

________________________________

From: on behalf of Salvucci

Sent: Tue 3/14/2006 3:39 PM

Subject: Update

So my doctor decided that Remicade is not working for me at all, the flare has

continued on and at this point its not worth it to hope that the Remicade will

kick in because its leaving me at risk for damage. So I will be starting Humira.

I am not to happy about starting another shot medication, but if it means

feeling better then I will give it a try. I wont be able to start it this week

because I have some sort of infection going on in my tonsils (tonsil swabbie

thing still pending.. its not strep.. but what is it? they dont know)..so until

my tonsils clear up I'm not allowed to start the humira. Hopefully this will be

the answer to my problems.. i've been in this flare for a few months now.. and i

would love to be feeling good again..

My mom finally has an official diagnosis she has stage IV large cell lung

cancer.. its so important if anyone still smokes to please stop now. My mom

hasn't smoked in eight years and yet she still ended up with cancer, please try

your hardest to prevent this by not smoking. It has been devestating watching

this all happen. She is still in the hospital but should be coming home sometime

this week. She began radiation on her brain and lungs (the brain has metestatic

lung cancer on it) and she will do chemotherapy once the radiation ends.. She

has a long hard fight ahead of her.. and statistics are not in her favor.. but

she is going to fight like hell! Thank you to everyone who has been keeping my

mom in their prayers and thoughts.. she has already made more strides then they

expected (she is going to leave the hospital a week before they thought she

would be able to) and if you could continue to keep her in your prayers or

thoughts that would be very appreciated.

Lots of Love

(JAS, 21)

March 15, 2006

Glad you posted an update - I was wondering how things were going. I

hope the Humira does the trick for you. Be careful with that infection

on your tonsil - get it all cleared up as those can swell and make

things very difficult for you.

I am glad your mom will be able to come home soon. I'll keep praying for

you all. Michele ( 18, spondy)

Update

So my doctor decided that Remicade is not working for me at all, the

flare has continued on and at this point its not worth it to hope that

the Remicade will kick in because its leaving me at risk for damage. So

I will be starting Humira. I am not to happy about starting another shot

medication, but if it means feeling better then I will give it a try. I

wont be able to start it this week because I have some sort of infection

going on in my tonsils (tonsil swabbie thing still pending.. its not

strep.. but what is it? they dont know)..so until my tonsils clear up

I'm not allowed to start the humira. Hopefully this will be the answer

to my problems.. i've been in this flare for a few months now.. and i

would love to be feeling good again..

My mom finally has an official diagnosis she has stage IV large cell

lung cancer.. its so important if anyone still smokes to please stop

now. My mom hasn't smoked in eight years and yet she still ended up with

cancer, please try your hardest to prevent this by not smoking. It has

been devestating watching this all happen. She is still in the hospital

but should be coming home sometime this week. She began radiation on her

brain and lungs (the brain has metestatic lung cancer on it) and she

will do chemotherapy once the radiation ends.. She has a long hard fight

ahead of her.. and statistics are not in her favor.. but she is going to

fight like hell! Thank you to everyone who has been keeping my mom in

their prayers and thoughts.. she has already made more strides then they

expected (she is going to leave the hospital a week before they thought

she would be able to) and if you could continue to keep her in your

prayers or thoughts that would be very appreciated.

Lots of Love

(JAS, 21)

March 24, 2006

Hi Helen -

I am so sorry to hear of Nick's ongoing struggle - I so know what you are going

through! The crawling sure did stir up memories. Sorry to hear you stumbled on

the ice - I hope both of you have a better weekend!

Val

Rpb's Mom (8,systemic)

Update

Thanks everyone for the kind thoughts for .

It took about 4 hours of heating pads on his knees, but he was

finally able to walk around lunchtime yesterday. He seemed ok for

the rest of the day. This morning he was a little slow, but was able

to move around and insisted on going to school.

His doctors office finally called back this morning and ask that we

get him checked for Strep, they are thinking that this latest

problem might be triggered by an illness. Of course I cannot get an

appt with his ped until monday AM, so ill be taking him in then. For

now i told her we will just keep watching him, seeing as he was able

to go to school this morning. Otherwise we could move his next

infusion up or could try Kineret. Im not ready to move to kineret

yet, call me stubborn, but Nick has done really really well on

remicade until now and im just not ready to give up on it. Kineret

has a 50/50 track record here from what the nurse was telling me

they have been seeing. She also told me she does not think the shot

is as painful as humira, which is good news I guess ( if we do go

down that road)

So for now, ill watch him, spring break is next week, so he can rest

and sleep as long as he likes which i think will do him good. We

will rule out any other illness at the peds office and go from there.

So thats about it....

hugs Helen ( who fell on the darn ice on the driveway and had to

call into the house to get help this morning!!, nothing broken, but

a sore, briused and scrapped up knee and pride!)

and (8 systemic)

April 8, 2006

Dear Group I haven't been on in awhile. what happened to Mairian ? just

caught tail end of it thanks jane c

April 8, 2006

Helen,

Glad to hear that Nick is feeling better and that the remicade seems

to be working. Regarding ports. I think the greatest concern is

regarding the potential for infection. My sister that has chrones

disease had a port for awhile. It became severely infected and

spread to the surrounding tissue. Because of her poor immune system

the infection took a lont time to heal and was quite probematic.

I also had two patients at my nursing home that had ports and they

both ended up with infections. It was easier to remedy with them by

just removing the port and they had better functioning immune

systems.

Didn't Caroline have a port for awhile. If I remember correctly she

had hers pulled due to infection.

Seems like a great alternative to the sticks, but definately check

it out given that Nick has so many other concerns as well.

Blessings,

(Aundrea 10 systemic jra)

>

> Nick saw his rheumy and had his remicade yesterday. All his joints

are

> looking good with the exception of 4 fingers, 2 on each hand. The

consenous

> is that he might of had a slight infection a couple of weeks ago

which

> caused the fevers and the knee flare. His knees are doing great

now and hes

> not having any issues with them ( apart from walking too much)

>

> The remciade is going great, we have even upped the speed at which

its

> infused and he does just fantastic with it. No reactions at all.

Our only

> issue is with the nurse that took 3 tries to get the IV started

and then

> tried to blame it on not holding still. The poor boy was

not moving

> and got quite worked up. He didnt want the elma on and didnt want

them to go

> to this other arm, he just begged to go home (((

>

> I was firm and said it was not an option, it was cream or no cream

and a

> heating pad. he went with the heating pad and finally she got the

iv

> started. Both Nicks forearms are black and blue. I'm not happy, I

was not

> happy with where he gets his remicade and have previously

discussed with the

> rheumy switching and we are going to, this was our last infusion

in the

> oncology clinic. This just made that choice more concrete.

>

> Today at our support group meeting it was suggested we get a port-

a-cath for

> his infusions... anyone gone this route??? I am getting conerned

that with

> monthly infusions and experiences like this last one ( it happened

once

> before at Childrens last Oct) Nick will get trumatized and will

start

> stressing over his shots/blood draws and remicade. He does so

awesome with

> it all now I dont want to loose that.

>

> hugs Helen and (8,systemic)

>

> Hugs..Helen

> DH Dan

> (22)(16)(13)Zachary(11)(8)

> (6)

>

April 8, 2006

Hey ,

I keep checking the board hoping and praying for good news about n.

Caroline had a pic line, not a port...but thank you for the info, its good

to hear all the pro's and cons. A infection is a big concern.

hugs Helen and (8,systemic)

Hugs..Helen

DH Dan

(22)(16)(14)Zachary(11)(8)

(7)

----Original Message Follows----

From: " sonia1md " <sonia1md@...>

Reply-

Subject: Re: Update

Date: Sun, 09 Apr 2006 00:36:25 -0000