update

[Guest guest]

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

[Guest guest]

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

>

>

>

[Guest guest]

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

[Guest guest]

,

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)

>

>

>

[Guest guest]

- 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)

[Guest guest]

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)

[Guest guest]

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)

[Guest guest]

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

caught tail end of it thanks jane c

[Guest guest]

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)

>

[Guest guest]

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

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)

>

[Guest guest]

I keep checking back also hoping for some good news on n. I am

afraid that reading all the lit that Georgina has posted on mas has

only made me worry more.

I guess I don't exactly know the difference between a pic line and a

port. I belive what my sister had and my patients at the nursing

home had was a called a port a cath? Does that sound right? I know

that it was used to draw blood as well as for my sis to get her

injections, (including remicade)...She had it for about 3 months.

Maybe these infections that I am aware of are just pure

coincidence. Do some research and pay particular attention to risk

of infection with immune compromised patients.

(Aundrea 10 systemic jra)-

-- In , " Helen Burger " <hburger64@...> wrote:

>

> 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

>

> 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)

> >

>

[Guest guest]

Hi Helen. I am wondering where Nick been getting his infusions done. Was it

at the U? Probably not an option, since Nick is a child, but my husband gets

his chemo at Minnesota Oncology and Hematology and hasn't had any problem

getting any started. He goes to the one in Burnsville, but they have several

offices. They have been very good. I am glad to hear Nick is feeling better. Kim

In a message dated 4/8/2006 4:22:58 PM Central Standard Time,

hburger64@... writes:

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.

[Guest guest]

Helen,

It was good to see you and Nick yesterday! I'm glad he's doing better

with the remicade infusions. I would have been so mad at the techs

that bruised up his arms. It's a good thing you're not going back

there. I know I certainly wouldn't! ) Whatever decision you make

about the port, I'm sure it will be the right one.

Blessings,

& (11-poly)

(7), Caity (4)

's JRA Page: http://www.caringbridge.org/mn/palexander/

JRA Webring: http://d.webring.com/hub?ring=kidslivingwithar

[Guest guest]

Hi Helen,

I'm so sorry to hear that Nick went through such a difficult time when they

were trying to get his IV started ... again. That must have been so hard ...

on both of you. Poor little guy. Plus, now there's a painful reminder left

behind - all the bruising. Doesn't seem fair, does it?

If I were you, I'd definitely first consider getting the infusions done

elsewhere. If that's a realistic option for you. Give that a chance, before

anything else. As has mentioned, there is a serious risk of infection

that needs to be taken into consideration. I did a brief search through

PubMed and wasn't able to find anything specific to children with arthritis

having a Port-A-Cath but the rate of infection in the published studies,

although deemed worth the risk in some advanced stages of illness and in

certain diseases, really worried me when I thought about Nick and the

immunosuppressives he's taking.

Maybe the experience will go lots more smoothely if the infusions are done

elsewhere or by someone who's more capable of working with small children. I

do hope so. Your Nick has been so strong and brave. It must tear you up, to

see him struggle with this.

Now, about the wonderful joint exam .... yea!!!! Totally thrilled that

things are looking up! I hope Nick's fingers will feel better real soon and

that he continues to have good physical health. It makes me so happy to read

that he's been walking, even too much, after needing to crawl not too long

ago. So many ups and downs. I hope things will begin to level off and remain

stable now.

Aloha,

Georgina

> 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)

[Guest guest]

Jane,

Perhaps you have caught up on posts but if not...n had a case of

mono..she became severely ill and her mom took her to the er and at

her request the doctors looked into a possible diagnosis of mas. She

was then hospiatalized and diagnosed with mas. Her condition became

more serious and she had to be put on a vent. Her mom () has

asked for everyone to be in prayer for n and she did report today

that the chest x-ray showed some improvement, however her condition

remains serious.

In a previous post provided n's address so that we could

send cards etc..

(Aundrea 10 systemic jra)-

-- In , Jitz45@... wrote:

>

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

just

> caught tail end of it thanks jane c

>

>

>

[Guest guest]

Kim,

Nick started his infusions at Childrens which was great, but then had to

move to the U when his rheumy went out on medical leave. At this time hes

getting his infusions at the adult oncology clinic at the U. its just not

suitable for kids. His next infusion ( May 12th) will be done else where at

the U in another clinic. We will see how that goes. Im hopeful his regular

rheumy is back sometime early summer and we can move back to Childrens.

Hugs Helen and (8,systemic)

p.s how is your hubby doing, is he responding to his treatments??

Hugs..Helen

DH Dan

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

(6)

----Original Message Follows----

From: mnmomof1@...

Reply-

Subject: Re: Update

Date: Sun, 9 Apr 2006 17:15:18 EDT

Hi Helen. I am wondering where Nick been getting his infusions done. Was it

at the U? Probably not an option, since Nick is a child, but my husband gets

his chemo at Minnesota Oncology and Hematology and hasn't had any problem

getting any started. He goes to the one in Burnsville, but they have several

offices. They have been very good. I am glad to hear Nick is feeling better.

Kim

In a message dated 4/8/2006 4:22:58 PM Central Standard Time,

hburger64@... writes:

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.

[Guest guest]

Thanks and Alia, always something huh? LOL

H & S

Donna

[Guest guest]

Donna,

Glad you did find out what the Problem was. When was young the Dr

checked her and sure enough she had it. 20 Degrees. continued with

problems and still not Diagnosed with JRA. A Dr said she had AS. Seemed

everytime she turned around it was Pain and the other Dr referred to it as

Growing

pains. lolol. It was hard to believe but we went with the Dr. Now she's 19

and she has a list of thing's. If it ain't one thing it's another.

Robbin

[Guest guest]

Donna,

Sorry to hear about Matts perstistent back problems. I also have

scoliosis and was diagnosed in my early teen years. Its so

miserable to live with a constant back ache...In my case the pain

would also shoot down the back of my leg.

I don't want to give out unsolicited advice but yet I feel compelled

to share this with you. Please take some time to check out the

website www.nucca.org this type of chiropractic changed my life and

after living with daily back pain for over 20 years if it could help

me in my 30's I can't imagine how much better it would have been to

get this care in my teen years! There is a video that you can click

on that will show you patients and the actual care.

I went thru the whole rollercoaster of pt, orthoped, shoe lifts,

etc. they wanted to put rods in my back and a back brace for a year.

Its miserable to find yourself curled up in a ball and the pain

is " constant " . I feel bad about Matt not being able to keep up with

friends. I remember limping down the basketball court because I

wanted to play so bad, but would have this shooting pain in my low

back and leg.

Hot baths, heating pads, massage and nsaids did provide temporairy

relief!

I am thinking of you guys and hope that Matt starts to feel better

soon!

(Aundrea 10 systemic jra)

-

-- In , ajaoky@... wrote:

>

> I am writing to update but not on . This time it is Matt.

He has had

> back problems for a few years and his * & ^* @$$ pediatrician has

said it is

> growing and he is having backaches. In the past few months it has

grown severe.

> He awakens at night crying and doesn't always keep up with friends

due to

> pain. I insisted on further evaluation and today was our first

orthopedic

> appointment. It seems he has scoliosis and spondylisis and even

has a small

> fracture in his lower back. He will go into a back brace for 6

weeks, go through

> some PT, and has been placed on 3 medications, including

naprosyn. I am still a

> bit overwhelmed and although this is minor in comparison to the

many kiddos

> on the list it has been a hard pill to swallow today. I am glad

we got into

> what seems a good ortho when we did and this did not go any

longer. As for

> , the consensus is his problems are still all asthma

related, so that is

> actually a relief. I hope all are well and hangin tight!

> Hugs and smiles!

> Donna

>

>

>

[Guest guest]

Donna - I am sorry to hear that Matt has to go through this. I hope that

some of the meds work soon and he can find some relief!!

Alia and Caroline, age 4, poly and uveitis

________________________________

From: [mailto: ] On

Behalf Of ajaoky@...

Sent: Thursday, April 13, 2006 1:06 PM

Subject: update

I am writing to update but not on . This time it is Matt. He has

had

back problems for a few years and his * & ^* @$$ pediatrician has said it

is

growing and he is having backaches. In the past few months it has grown

severe.

He awakens at night crying and doesn't always keep up with friends due

to

pain. I insisted on further evaluation and today was our first

orthopedic

appointment. It seems he has scoliosis and spondylisis and even has a

small

fracture in his lower back. He will go into a back brace for 6 weeks,

go through

some PT, and has been placed on 3 medications, including naprosyn. I am

still a

bit overwhelmed and although this is minor in comparison to the many

kiddos

on the list it has been a hard pill to swallow today. I am glad we got

into

what seems a good ortho when we did and this did not go any longer. As

for

, the consensus is his problems are still all asthma related, so

that is

actually a relief. I hope all are well and hangin tight!

Hugs and smiles!

Donna

[Guest guest]

Very true!

Alia

________________________________

From: [mailto: ] On

Behalf Of ajaoky@...

Sent: Thursday, April 13, 2006 4:07 PM

Subject: Re: Re: update

Thanks and Alia, always something huh? LOL

H & S

Donna

[Guest guest]

, as I so often say and sign, Hang tight and hang tough. I know you are

doing just that!

It seems that despite all your enduring right now you are doing the best

with the situation given you and your family. I cant even imagine and I admire

your strength. I will continue to pray for you and your family and if there is

anything I can do please let me know....hugs!

Donna

[Guest guest]

- I will keep praying for that miracle. I am so sorry you are going

through this. I am sure it must be finals time and that is always so

stressful. Please know that you are in my thoughts and prayers. I will

pray for strength for you for all you are experiencing, Michele

Update

I had an appointment with my rheumy today and it went pretty well. My

xrays look good and so does my blood work so my doctor wants to wait on

starting me on Humira and for now I'm just on Arava.. I'm definitely ok

with that. I had nerve testing done to check why my feet and legs are

always numb and tingly and nothing showed up so now I am being sent to a

neurologist.. just what I needed another specialist.. Other then that I

am doing ok.

I know asked about my mom, she is doing ok. About two weeks ago

my mother was admitted into the hospital because she was having trouble

breathing and was really disoriented, we found out that the radiation

did not work and her tumors have not shrank at all, the didn't grow but

they didn't shrink either, they put her back on decadron (steriod) and

it helped her breathing but now she has oxygen here at home and they

said since she didnt respond to radiation she probably wont respond to

chemo and even with the chemo its only being used to give her more

time.. The dont really expect for her to make it through the summer..

Its been devestating to say the least, but we are trying to enjoy every

day as it comes. She had a port inplanted last friday and will start

chemotherapy tomorrow.. hopefully everything goes well and she is given

a miracle..

That's basically all though thats been going on.. I've been really

stressed out with school and work and dealing with my mom.. ill be

overjoyed when this semester is over.

Lots of Love

(JAS, 21)

[Guest guest]

,

I am so sorry that you didn't get better news regarding your mom. I

know all of this must be so terribly hard on you and your family. I

am praying that your mom feels well enough to be able to enjoy this

mothers day with all of you and for it to be " extra-special " . I

just want you to know that I am praying for all of you and was glad

to hear that some of your reports came back good.

Let us know how things go with the neurologist.

(Aundrea 10 systemic)-

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

wrote:

>

> I had an appointment with my rheumy today and it went pretty well.

My xrays look good and so does my blood work so my doctor wants to

wait on starting me on Humira and for now I'm just on Arava.. I'm

definitely ok with that. I had nerve testing done to check why my

feet and legs are always numb and tingly and nothing showed up so

now I am being sent to a neurologist.. just what I needed another

specialist.. Other then that I am doing ok.

>

> I know asked about my mom, she is doing ok. About two

weeks ago my mother was admitted into the hospital because she was

having trouble breathing and was really disoriented, we found out

that the radiation did not work and her tumors have not shrank at

all, the didn't grow but they didn't shrink either, they put her

back on decadron (steriod) and it helped her breathing but now she

has oxygen here at home and they said since she didnt respond to

radiation she probably wont respond to chemo and even with the chemo

its only being used to give her more time.. The dont really expect

for her to make it through the summer.. Its been devestating to say

the least, but we are trying to enjoy every day as it comes. She had

a port inplanted last friday and will start chemotherapy tomorrow..

hopefully everything goes well and she is given a miracle..

>

> That's basically all though thats been going on.. I've been

really stressed out with school and work and dealing with my mom..

ill be overjoyed when this semester is over.

>

> Lots of Love

> (JAS, 21)

>

>

>

[Guest guest]

;

I am so sorry to hear about your mom. I, too, will be praying for that

miracle. I can't imagine how challenging every day must be for you right

now. Please know that I think of you and pray for you often.

I also wanted to tell you, the Arava might be the culprit in the numbness

and tingling. Since I've been off it, the numbness and tingling in my

legs and feet is almost gone. There is even some info in medical journals

that this is a known side effect of the Arava. I know, just what you

wanted to hear.

Take care, . I wish there were more I could do for you.

and Rob 17 Spondy

On Mon, 8 May 2006 12:20:31 -0700 (PDT) Salvucci

<lisa_salvucci@...> writes:

I had an appointment with my rheumy today and it went pretty well. My

xrays look good and so does my blood work so my doctor wants to wait on

starting me on Humira and for now I'm just on Arava.. I'm definitely ok

with that. I had nerve testing done to check why my feet and legs are

always numb and tingly and nothing showed up so now I am being sent to a

neurologist.. just what I needed another specialist.. Other then that I

am doing ok.

I know asked about my mom, she is doing ok. About two weeks ago

my mother was admitted into the hospital because she was having trouble

breathing and was really disoriented, we found out that the radiation did

not work and her tumors have not shrank at all, the didn't grow but they

didn't shrink either, they put her back on decadron (steriod) and it

helped her breathing but now she has oxygen here at home and they said

since she didnt respond to radiation she probably wont respond to chemo

and even with the chemo its only being used to give her more time.. The

dont really expect for her to make it through the summer.. Its been

devestating to say the least, but we are trying to enjoy every day as it

comes. She had a port inplanted last friday and will start chemotherapy

tomorrow.. hopefully everything goes well and she is given a miracle..

That's basically all though thats been going on.. I've been really

stressed out with school and work and dealing with my mom.. ill be

overjoyed when this semester is over.

Lots of Love

(JAS, 21)