New to Group

November 28, 2005

Hi ,

Welcome to the group!

was diagnosed with systemic onset at 2 almost 3 and was started on

30mg Prednisilone.He had the fevers, rash and swollen lymph nodes but his

arthritis was severe much more bothersome then the systemic symptoms.

It took us a total of 21 months to get off the pred and his usual dose

range was between 20 and 9mg.

It also took the max amount of Ibuprofen,MTX shots,Plaquenil and finaly

Enbrel to get off the pred.Luckily the end result was no pred,Plaquenil or

Ibuprofen.The MTX is just pills now and a starting dose of 7.5mg and his 1 vial

of

Enbrel a week.

The quicker you can get Blake on the MTX the better,the hematologist can

monitor lab work for side effects and it takes several weeks to a few months to

start working.

Don't start wondering about Enbrel yet,they would max the MTX out first and

Enbrel usualy isn't real efficiant with systemics but 's living proof that

it's worth a try.

Good luck at geeting into a ped rheumy and I hope you can find one you like.

Hugs

Becki and 7 systemic

November 28, 2005

Good morning ,

Well, we are your neighbor, living in Fredericksburg.....My son

was diagnosed with systemic JRA at the age of one...he is now 6..so,

needless to say, we can relate to your situation and hopefully help.

has been treated at Texas ish Rite in Dallas (Shriner

hospital specializing in arthritis and completely FREE). My husband

is a physician and I am a nurse anesthetist...and trust me...it was

still a BIG struggle in the begining... had severe systemic

symptoms..and moderate to severe arthritis. I am happy to report

that he is in full remission after starting a drug called KINERET.

He was quite ill for about 3 1/2 years prior to that. Please call me

if you have any questions (830) 997-4821 or by cell 456-1654 (we are

in the middle of a move/ local..so if you don't reach me please leave

a message)...or by email...mwestfal " at " ktc.com. Hope we can help

you and little Blake, Marguerite and (systemic, 6)

>

> HI All,

> I am new to the group and new to the world of JRA.. My 2 year old

has

> recently been " diagnosed " with systemic JRA. I have a couple of

> questions..

> We live in San , Texas and there is only one pedi Rheum.

that

> does not take our insurance.......so we are being forced to another

> city. We are going to see Ruy Carrasco in Austin, Tx. Has anyone

used

> him or heard of him?

>

> Second, how long have your kids taken predinsone and what dosage?

> Blake started on 20mg a day and we are currently tapering the

dosage

> before we visit the rheum. in Austin. 20 sounds a little excessive

to

> me- is that a normal dose to start off with?

>

> Are there any support groups of any kind in San or Austin?

>

> Thanks.

> (Blake 2, systemic)

>

November 28, 2005

Welcome to the group,

My 4 y/o was diagnosis with systemic JRA last March and was on 15 mg or 1 mg per

kilogram for about 3 of the last 9 months while starting methotrexate pills

then now on injection and having some flares while tapering the prednisone.

With active disease- fevers and joint issues and the inflammation markers high (

CRP and Sed rate) starting dose can vary 1- 2 mg per kilogram up to 60 mg of

prednisone a day. I know with asthma for example, 2 mg per kilogram is used by

many providers for a flare but the burst is given over less a week or a few days

while getting over a cold.

I would discuss your concerns with his doctor and build a strong relationship.

With systemic JRA what is the best treatment is unclear. It is a great question

if it is to o high of a starting does? There is a lot of variable to consider So

keep asking questions this message group has been excellent to learn about

systemic JRA. I hipe Blake starts feeling better soon.

Take care

Joe 4 systemic

Re: New to Group

In a message dated 11/27/05 4:48:23 PM Central Standard Time,

bdwmom@... writes:

> HI All,

> I am new to the group and new to the world of JRA. My 2 year old has

> recently been " diagnosed " with systemic JRA. I have a couple of

> questions.

> We live in San , Texas and there is only one pedi Rheum. that

> does not take our insurance.......so we are being forced to another

> city. We are going to see Ruy Carrasco in Austin, Tx. Has anyone used

> him or heard of him?

>

> Second, how long have your kids taken predinsone and what dosage?

> Blake started on 20mg a day and we are currently tapering the dosage

> before we visit the rheum. in Austin. 20 sounds a little excessive to

> me- is that a normal dose to start off with?

>

> Are there any support groups of any kind in San or Austin?

>

> Thanks.

> (Blake 2, systemic)

>

Hi,

My 10 year old daughter has polyarticular jra. She was diagnosed about 3

years ago. We go see Dr. Cole in San .

Three years ago the nurse at Dr. Cole's got us to go to Jambalaya Jubilee in

Shreveport, Louisiana in the summer. We got tons of information and got to

talk to many parents and experts.

Last year a group was started in San . Since I live in South Texas I

could not join.

My daughter went through the Prednisone. The initial amount was alot but it

was to stimulate the body and to lessen the inflamation. My daughter could

not walk and could not hold a glass or fork. The Prednisone works fast to

lessen the inflamation but it is not that good for the child to have for a

long

time. It was hard tapering. We had to reduce an ml. per week and once we

thought we had it beat she would start hurting and had to give her the

prednisone.

Currently my daughter in on the Folic Acid, Methotrexate and Enbrel.

Hope this helps.

o Salas

November 29, 2005

Do you know how to join the group here in SA? That sounds like it

would be very helpful. We don't see Cole because he does not take

our insurance, so we are going to Houston. Thanks for your help.

>

> In a message dated 11/27/05 4:48:23 PM Central Standard Time,

> bdwmom@y... writes:

>

> > HI All,

> > I am new to the group and new to the world of JRA. My 2 year old

has

> > recently been " diagnosed " with systemic JRA. I have a couple of

> > questions.

> > We live in San , Texas and there is only one pedi Rheum.

that

> > does not take our insurance.......so we are being forced to

another

> > city. We are going to see Ruy Carrasco in Austin, Tx. Has

anyone used

> > him or heard of him?

> >

> > Second, how long have your kids taken predinsone and what

dosage?

> > Blake started on 20mg a day and we are currently tapering the

dosage

> > before we visit the rheum. in Austin. 20 sounds a little

excessive to

> > me- is that a normal dose to start off with?

> >

> > Are there any support groups of any kind in San or Austin?

> >

> > Thanks.

> > (Blake 2, systemic)

> >

>

> Hi,

>

> My 10 year old daughter has polyarticular jra. She was diagnosed

about 3

> years ago. We go see Dr. Cole in San .

> Three years ago the nurse at Dr. Cole's got us to go to Jambalaya

Jubilee in

> Shreveport, Louisiana in the summer. We got tons of information

and got to

> talk to many parents and experts.

> Last year a group was started in San . Since I live in

South Texas I

> could not join.

> My daughter went through the Prednisone. The initial amount was

alot but it

> was to stimulate the body and to lessen the inflamation. My

daughter could

> not walk and could not hold a glass or fork. The Prednisone works

fast to

> lessen the inflamation but it is not that good for the child to

have for a long

> time. It was hard tapering. We had to reduce an ml. per week and

once we

> thought we had it beat she would start hurting and had to give her

the prednisone.

> Currently my daughter in on the Folic Acid, Methotrexate and Enbrel.

>

> Hope this helps.

>

> o Salas

>

November 29, 2005

In a message dated 11/28/05 11:36:30 PM Central Standard Time,

bdwmom@... writes:

> Do you know how to join the group here in SA? That sounds like it

> would be very helpful. We don't see Cole because he does not take

> our insurance, so we are going to Houston. Thanks for your help.

>

Hi,

The group was started by a group of parents whose children also see Dr. Cole.

There are 2 or 3 families that were meeting and inviting people to talk to

them. You could talk to Sylvia, Dr. Cole's nurse, and see if she knows when

and where they meet.

The best answers I have found here and the Jambalaya Jubilee. The beginning

is just scary. You do not know where you are heading or facing or what the

end effect will be. After seeing my daughter regain the ability to walk because

of the Prednisone, I was so happy. Dr. Cole explains to us the medication.

Hope this helps.

o Salas

December 12, 2005

Screaming,

That sounds so awful I don't know what to say except I hope it works

out well for you.

Best of luck with the test

Mike

>

> i belong to a couple of other liver groups but my first time here

my

> short history is i have hep c,cirriossis and now they have found 6

> tumers in my liver because of fluid around my liver and my low

> clotting factors they couldn't do a simple biop to find if they are

> cancer so this wedsday they are going to admit me overnight to the

> hospital insert a tube to drain the fluid and monitor my bleding

for

> the biop not looking forward to it but the not knowing is worse i

am

> still hopeful that maybe they will be benign but the markers show

> better that 90% chance they are maliginant if they are my

oncoligist

> is going to see if i can get in a new clincal trial that they have

> going at vanderbilt well that all for now as if thats not more than

> enough for anyone wish me luck maybe i will have good news next time

>

December 12, 2005

Banshe,

Where do you live? Any chance you can get to FLorida

or maybe even Arizona? I hear they are transplanting

people in both places at pretty low MELD scores, maybe

you could get in and get the surgery done ASAP. Or

they may want to do radiation or chemotherap before

they do the transplant.

Anyway, you're in good hands at Vanderbilt. We ALL

wish you tons of luck and wait to hear good news from

you, OK?

Best wishes,

Michele

-- screamingbanshe2001 <abbr381@...> wrote:

> i belong to a couple of other liver groups but my

> first time here my

> short history is i have hep c,cirriossis and now

> they have found 6

> tumers in my liver because of fluid around my liver

> and my low

> clotting factors they couldn't do a simple biop to

> find if they are

> cancer so this wedsday they are going to admit me

> overnight to the

> hospital insert a tube to drain the fluid and

> monitor my bleding for

> the biop not looking forward to it but the not

> knowing is worse i am

> still hopeful that maybe they will be benign but the

> markers show

> better that 90% chance they are maliginant if they

> are my oncoligist

> is going to see if i can get in a new clincal trial

> that they have

> going at vanderbilt well that all for now as if

> thats not more than

> enough for anyone wish me luck maybe i will have

> good news next time

>

__________________________________________________

February 14, 2006

,

A lot of us have had problems with our kids. Feel

free to post, and I am sure you will get a lot of

support and information to help you.

Maggs.

--- kg4cwz <harp@...> wrote:

> I'm new to your group and this is my first post.

> I'm handling a lot of

> different things right now in addition to my son's

> situation (he's a

> case where doctors could easily prescribe one of the

> SSRI's). Anyway,

> before I make my post about that, I've come upon

> this very interesting

> site as it addresses a concern I've had for some

> time with my son.

> http://psychrights.org/index.htm

> This site talks about court ordered medication for

> your children. I am

> constantly concerned about this happening to my son

> as his behaviors

> are attracting so much attention and concern in

> public, despite all the

> efforts I do to keep him quiet and under some kind

> of control.

> I will post more in a bit, but for now I wanted to

> share this very

> interesting site.

>

__________________________________________________

February 14, 2006

,

A lot of us have had problems with our kids. Feel

free to post, and I am sure you will get a lot of

support and information to help you.

Maggs.

--- kg4cwz <harp@...> wrote:

> I'm new to your group and this is my first post.

> I'm handling a lot of

> different things right now in addition to my son's

> situation (he's a

> case where doctors could easily prescribe one of the

> SSRI's). Anyway,

> before I make my post about that, I've come upon

> this very interesting

> site as it addresses a concern I've had for some

> time with my son.

> http://psychrights.org/index.htm

> This site talks about court ordered medication for

> your children. I am

> constantly concerned about this happening to my son

> as his behaviors

> are attracting so much attention and concern in

> public, despite all the

> efforts I do to keep him quiet and under some kind

> of control.

> I will post more in a bit, but for now I wanted to

> share this very

> interesting site.

>

__________________________________________________

February 14, 2006

,

A lot of us have had problems with our kids. Feel

free to post, and I am sure you will get a lot of

support and information to help you.

Maggs.

--- kg4cwz <harp@...> wrote:

> I'm new to your group and this is my first post.

> I'm handling a lot of

> different things right now in addition to my son's

> situation (he's a

> case where doctors could easily prescribe one of the

> SSRI's). Anyway,

> before I make my post about that, I've come upon

> this very interesting

> site as it addresses a concern I've had for some

> time with my son.

> http://psychrights.org/index.htm

> This site talks about court ordered medication for

> your children. I am

> constantly concerned about this happening to my son

> as his behaviors

> are attracting so much attention and concern in

> public, despite all the

> efforts I do to keep him quiet and under some kind

> of control.

> I will post more in a bit, but for now I wanted to

> share this very

> interesting site.

>

__________________________________________________

February 14, 2006

,

A lot of us have had problems with our kids. Feel

free to post, and I am sure you will get a lot of

support and information to help you.

Maggs.

--- kg4cwz <harp@...> wrote:

> I'm new to your group and this is my first post.

> I'm handling a lot of

> different things right now in addition to my son's

> situation (he's a

> case where doctors could easily prescribe one of the

> SSRI's). Anyway,

> before I make my post about that, I've come upon

> this very interesting

> site as it addresses a concern I've had for some

> time with my son.

> http://psychrights.org/index.htm

> This site talks about court ordered medication for

> your children. I am

> constantly concerned about this happening to my son

> as his behaviors

> are attracting so much attention and concern in

> public, despite all the

> efforts I do to keep him quiet and under some kind

> of control.

> I will post more in a bit, but for now I wanted to

> share this very

> interesting site.

>

__________________________________________________

February 14, 2006

Thank you, Maggs. I've just been so busy lately. It's hard to keep up

with a very demanding child in addition to all the other things that

seem to go on in life. I've joined the group because I'd like to hear

how others have handled their situations and perhaps someone will know

of some things I haven't thought of yet. lol!

I'm going to try to post a little right now.

I've had trouble with my son since he was 18 months old. He just woke

up one day with problems. As I had been in the health food industry

since my early 20's, I had been aware of the importance of staying away

from many dangerous substances, so I had been extremely careful in my

handling of him, as I would be with any child I was caring for. I

therefore had him born at home without any medical intervention. During

my pregnancy, I had not taken any drugs whatsoever. I was very careful

in my food consumption as well. My son did not receive any shots nor

did I, and yet, he just woke up raging one day. It came on like the

flu. Up until that time, he had been very clingy and almost scared like

he was always looking over his shoulder and frightened that something

was going to 'get him'. That's the best way I can describe it. Then,

this one morning, he woke up as if he'd been 'gotten'. From then on, I

have had unreasonable ragings with him. He just turned 16 last month.

Naturally, everyone wanted to diagnosis him and tell me what his problem

was. The medical profession was full of drugs to offer me. I turned

them all down. I had a lot of unease about the drugs for ADHD, which

was the first thing he got diagnosed with. His symptoms would mutate so

that it looked like he was getting better and then something else would

pop out of the closet. I would often think that had I used drugs, the

doctors would have credited his improvement to the drugs, but since I

didn't use drugs, I knew this was the course of whatever was going on.

I watched other children go through the drugs and suffer the side

effects, but yet I didn't see any of them improve, so I didn't

understand why anyone would use something that had such questionable

side effects (and hadn't been proven to do anything to help). I'm not

trying to make anyone wrong here that has used drugs because I

understand the sheer frustration when you have nothing else you can do

and drugs are all that's being offered to you.

So, here we are at age 16. I'm totally fried and worn out with dealing

with him--the stresses of it all, the unpredictability of it, the

threats to himself, the threats from others, and the threats on me from

not just him, but from people in general that think there is something I

can do and I'm not doing it.

I have been fortunate to have some doctors tell me that there was no

drug that would help my son. I don't know why they've said this, but

one psychiatrist did say this to me. I think that might be because his

symptoms don't seem classic to them of any of the disorders. He does

seem to present an unusual case. On one hand, he shows the signs of

OCD, but then another psychologist told me, " I don't know what he has,

but it's definitely not OCD. " Just a week later I had a different

psychologist tell me that she felt it had to be OCD and she would test

for it. I took him in (this was last November) to be tested and the

tester tested him for almost 8 hours straight! I told her that there

was no way you could get an accurate test score like that. My son was

flipping out mentally just doing the test, though he was behaving just

fine. Any kid would have gone nuts with something like that! Then the

tester falsely accused my boyfriend of 9 years, of cussing at my son

outside the men's bathroom while the testing was going on. This simply

didn't happen, and even if it had, the tester never could have witnessed

it because the tester never left her office and the men's bathroom was

outside her office, down the hall! So, I left that psychologist and

that tester, never even collecting the test results from them.

Shortly before we saw this disturbed psychologist in November, my son

had had an incident with me in a parking lot outside of a grocery store.

He had tried to attack me and I had screamed. A grocery boy heard me

and flagged down an unmarked police car. They arrested my son. It was

his first arrest. We have been to court and the case has been

continued. I got a real taste of the justice system. I don't know

where justice has gone, but it's not in the courts any more. My son's

lawyer told me that since no one witnessed this incident, there wasn't a

case if neither of us said anything. Well, neither of us said anything.

However the lawyer said that my son had hit me and the judge decided my

son needed some anger management course and continued the case to see

how that worked out. Now, how does that happen? I didn't say anything.

My son didn't say anything. There was no witness and my son is assumed

guilty of having hit me! What happened to justice??

My son does need some help, but I'm not interested in giving him any

more to deal with than he already has. I'm not interested in giving him

suicide in a pill or destroyed kidneys or a heart condition or whatever

else there is out there in these pills that kill. I have yet to see any

scientific documentation that shows that these pills do anything to

help. I want to know what has happened to medicine? Isn't there still

an oath about first doing no harm? What has happened to our medical

profession?

It seems to me that the lawyers are messed up and the doctors are messed

up. It also seems to me that there is a big machine that's trying to

pull everyone else into the mess up, too. I'm not interested. I don't

know why my son has problems. He clearly has things that make him

almost impossible to live with at times, but he's still very healthy and

he's not contemplating suicide. His behaviors could cause him a lot of

harm, though.

I don't want to make this post too lengthy, so I'll stop here for now.

There is a lot more that I could say, but for now I'll leave it just at

this. Oh, I will add that my son's major problem is unreasonable,

uncontrollable rage. When that's not going on, he's a great kid--very

smart and very physically attractive and liked by everyone. He's

amazingly popular. He does talk about contamination from time to time,

but it has greatly lessened, though it's still there. Several years ago

it was very intense, but it is not now.

So, this is my short story version for now.

> ,

A lot of us have had problems with our kids. Feel free to post, and

I am sure you will get a lot of support and information to help you.

Maggs.

February 14, 2006