Re: A Parents Story/ Larson

[Guest guest]

Becki,

You keep getting the word out, girl!! Wonderful story. If you

haven't already done so, send it to the AF and all the newspapers

you can think of.

And, thanks to Rusty for posting it.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

--HI all,

Im doing a " Patty " and playing catch up!!!! LOL

Becki, this was such a moving story, thank you so much for sharing

it with us all. sure has come a long way, What a poster child

he is!!!!

Hugs Helen and (7,systemic)

- In , " liz smith " <liz_smith@c...> wrote:

> Thank you, , for posting this for us. Becki, what a

wonderful story!!

> I'm glad it will be on the Cincinnati site, as it gives such hope

to others.

>

>

>

> Liz

>

>

>

> A Parents Story/ Larson

>

>

>

> Here it is:Becki! I took the liberty to paste and resend it to the

> for you...

>

> Hire it is;

>

> Juvenile Rheumatoid Arthritis: Larson is No Longer in Pain

>

> " I have a brand new body "

>

> Right before Larson's third birthday, doctors diagnosed him

with

> systemic onset juvenile rheumatoid arthritis. He wasn't able to

run or

> play, and had constant fevers and rashes. tried high doses of

> several drugs, but received no relief. Then, at age 4, a seven

hour drive

> to Cincinnati Children's Hospital Medical Center changed

everything.

> Today, enjoys playing soccer and inline skating.

>

> Becki and Allan Larson live seven hours from Cincinnati Children's

in

> sburg, Tennessee, with their two children, Shelby and .

Both

> children seemed to be healthy, until, at age 2, endured 21

days of

> high fevers and a rash that covered most of his body. " He couldn't

walk,

> use the bathroom or feed himself, " Becki says. " He just screamed

in pain,

> and every day we knew we were getting one day closer to losing

him. "

>

> Doctors diagnosed with systemic onset juvenile rheumatoid

> arthritis, which is characterized by fever and a light skin rash,

and may

> also affect the internal organs. They prescribed him high doses of

> PreloneR, methotrexate and ibuprofen, but nothing proved to be

> successful. needed help just using the bathroom and getting

out of

> bed. He woke up painfully stiff every morning and couldn't run or

play

> with his friends. Six months later, suffered a systemic

flare.

> Becki and then applied for EnbrelR, a fairly new drug that

has

> shown dramatic advancement is treating JRA, in hopes of it taking

away

> 's pain.

>

> Months went by and they received no response to their application

for

> EnbrelR. During those months, , at age 3, weighed as much as

an

> average 8-year-old and had to use a medical stroller. Doctors

added the

> drug PlaquenilR to 's list of medications, but still there

was no

> relief.

>

> A Seven Hour Drive

>

> Finally, Becki learned about a drug study for EnbrelR at Cincinnati

> Children's. She immediately called the number and talked to

> Lovell, MD, MPH, associate director of the Division of

Rheumatology. Dr.

> Lovell notified her that was eligible to join the study.

>

> After talking to Dr. Lovell, the Larsons embarked on a seven hour

drive

> to Cincinnati Children's. " It was the best drive of our life, "

Becki

> says. " We came home with a simple piece of paper but a powerful

piece of

> paper. It gave the permission to obtain EnbrelR. "

>

> With that powerful piece of paper, received his first shot of

> EnbrelR in September 2002.

>

>

> Reason to Celebrate

>

> " Nine days after the first shot woke up jumping and running -

not

> the stiff 80-year-old man we were used to, " Becki says. " He was so

happy

> that he didn't hurt. "

>

> Three months after was able to take EnbrelR, he regained

complete

> control of his disease and has been doing well ever since. " I have

a

> brand new body, " says.

>

> Now, age 6, enjoys playing with his hot wheels, inline

skating, and

> playing soccer. " He is tall and lean and can run like the wind, "

Becki

> says. " Nothing tires him and nothing stops him. "

>

> A Life-Changing Doctor

>

> Becki and Allan believe the care received from Dr. Lovell

has made

> all the difference. " We owe everything to that man, " Becki says.

She

> notices that he always takes thorough exams and looks at every

joint in

> 's body.

>

> Becki and hope never has to go through the same pain

again.

> They know that a recurrence could happen at any time, but feel

confident

> knowing Dr. Lovell is by their side. " Someday right out of the

blue the

> arthritis will come back, " Becki says, but knowing that Cincinnati

> Children's is only a seven hour drive away gives us hope that we

will

> beat it again. "

>

>

>

>

>

[Guest guest]

Hi Becki,

Thanks so much for sending in 's story. Sorry it didn't get posted

right away. Since it came as an attachment, the filter caught it. Needed

to be cut and pasted into a regular text message, like the one

sent. What a great article, though! It really captures the essence of

the positive difference an early aggressive treatment plan can make for

a young child with JRA. I'll bet reading that story gives lots of hope

to many newly diagnosed families. I wouldn't be surprised if the folks

at Amgen/Wyeth want Robbie to be a spokesperson. Maybe when their Enbrel

commercials become more inclusive and feature youngsters as well as

older RA'ers.

It must have felt so crummy, when your little guy started to have some

pain in his wrists and ankles again. If it takes Ibuprofin and MTX added

to the Enbrel, so be it. I know that might feel like a let-down of sorts

but this disease can be so deceptive. Never take a remission, clinical

or medicated, for granted. One never knows when a flare up may occur.

In one of your posts you said that you can cage the beast but he's

always there, just waiting for you to leave the door open so he can

attack again. What a great analogy that was! So true.

Anyway, hang in there. Send our love to and let him know we're

thinking of him and wanting him to feel all better soon ... even if it

means some of that MTX's hiding in his grape juice.

Aloha,

Georgina

A Morse wrote:

> Here it is:Becki! I took the liberty to paste and resend it to the

> for you...

>

> Hire it is;

>

> Juvenile Rheumatoid Arthritis: Larson is No Longer in Pain

>

> “I have a brand new body”

>

> Right before Larson’s third birthday, doctors diagnosed him with

> systemic onset juvenile rheumatoid arthritis. He wasn’t able to run or

> play, and had constant fevers and rashes. tried high doses of

> several drugs, but received no relief. Then, at age 4, a seven hour drive

> to Cincinnati Children’s Hospital Medical Center changed everything.

> Today, enjoys playing soccer and inline skating.

>

> Becki and Allan Larson live seven hours from Cincinnati Children’s in

> sburg, Tennessee, with their two children, Shelby and . Both

> children seemed to be healthy, until, at age 2, endured 21 days of

> high fevers and a rash that covered most of his body. “He couldn’t walk,

> use the bathroom or feed himself,” Becki says. “He just screamed in pain,

> and every day we knew we were getting one day closer to losing him.”

>

> Doctors diagnosed with systemic onset juvenile rheumatoid

> arthritis, which is characterized by fever and a light skin rash, and may

> also affect the internal organs. They prescribed him high doses of

> Prelone®, methotrexate and ibuprofen, but nothing proved to be

> successful. needed help just using the bathroom and getting out of

> bed. He woke up painfully stiff every morning and couldn’t run or play

> with his friends. Six months later, suffered a systemic flare.

> Becki and then applied for Enbrel®, a fairly new drug that has

> shown dramatic advancement is treating JRA, in hopes of it taking away

> ’s pain.

>

> Months went by and they received no response to their application for

> Enbrel®. During those months, , at age 3, weighed as much as an

> average 8-year-old and had to use a medical stroller. Doctors added the

> drug Plaquenil® to ’s list of medications, but still there was no

> relief.

>

> A Seven Hour Drive

>

> Finally, Becki learned about a drug study for Enbrel® at Cincinnati

> Children’s. She immediately called the number and talked to

> Lovell, MD, MPH, associate director of the Division of Rheumatology. Dr.

> Lovell notified her that was eligible to join the study.

>

> After talking to Dr. Lovell, the Larsons embarked on a seven hour drive

> to Cincinnati Children’s. “It was the best drive of our life,” Becki

> says. “We came home with a simple piece of paper but a powerful piece of

> paper. It gave the permission to obtain Enbrel®.”

>

> With that powerful piece of paper, received his first shot of

> Enbrel® in September 2002.

>

>

> Reason to Celebrate

>

> “Nine days after the first shot woke up jumping and running – not

> the stiff 80-year-old man we were used to,” Becki says. “He was so happy

> that he didn’t hurt.”

>

> Three months after was able to take Enbrel®, he regained complete

> control of his disease and has been doing well ever since. “I have a

> brand new body,” says.

>

> Now, age 6, enjoys playing with his hot wheels, inline skating, and

> playing soccer. “He is tall and lean and can run like the wind,” Becki

> says. “Nothing tires him and nothing stops him.”

>

> A Life-Changing Doctor

>

> Becki and Allan believe the care received from Dr. Lovell has made

> all the difference. “We owe everything to that man,” Becki says. She

> notices that he always takes thorough exams and looks at every joint in

> ’s body.

>

> Becki and hope never has to go through the same pain again.

> They know that a recurrence could happen at any time, but feel confident

> knowing Dr. Lovell is by their side. “Someday right out of the blue the

> arthritis will come back,” Becki says, but knowing that Cincinnati

> Children’s is only a seven hour drive away gives us hope that we will

> beat it again.”

[Guest guest]

Hi Georgina,

He keeps asking me when I am going to start putting his MTX in grape

juice,even found a coupon at the grocery store,lol.Actualy the last 2 Friday

nights he

has been getting applesauce,cinnimon, and 7.5mg crushed MTX and doesn't have

a clue.

The analogy about the caged beast was actualy a shorter version from

Dr.Lehmans book.I wish I had bought it at AJAO and probably none of this would

have

happened.While I didn't care for the way he joined this list to solicit his book

it realy is a GREAT book.A real eye opener.

Actualy I wasn't all that disapointed over the return of symptoms.I knew

something wasn't right and am still infuriated that the head rheumy at

Vanderbilt

dismissed s wrists as being fine,even though wouldn't let him touch

them.I was mainly scared of going back to square 1 and afraid of what the

next morning would bring.It's been 2 1/2 months of the same and the sky hasn't

droped yet so just waiting to see how quick the MTX will kick in.He will say

something hurts as he dashes out the door and not another word for a few to

several days later.

It broke my heart to read of all the trouble Josh has been going through.

Our prayers are with him

Becki and 6 systemic

[Guest guest]

-I keep meaning to buy this book and have not yet, everyone says its

such a great read...but i just wonder if most if it is not stuff we

have already read in one form or another?????

Hugs Helen and (7,systemic)

-- In , Arthurnator@w... wrote:

> Hi Georgina,

> He keeps asking me when I am going to start putting his MTX in

grape

> juice,even found a coupon at the grocery store,lol.Actualy the

last 2 Friday nights he

> has been getting applesauce,cinnimon, and 7.5mg crushed MTX and

doesn't have

> a clue.

> The analogy about the caged beast was actualy a shorter version

from

> Dr.Lehmans book.I wish I had bought it at AJAO and probably none

of this would have

> happened.While I didn't care for the way he joined this list to

solicit his book

> it realy is a GREAT book.A real eye opener.

> Actualy I wasn't all that disapointed over the return of

symptoms.I knew

> something wasn't right and am still infuriated that the head

rheumy at Vanderbilt

> dismissed s wrists as being fine,even though wouldn't

let him touch

> them.I was mainly scared of going back to square 1 and afraid of

what the

> next morning would bring.It's been 2 1/2 months of the same and

the sky hasn't

> droped yet so just waiting to see how quick the MTX will kick

in.He will say

> something hurts as he dashes out the door and not another word for

a few to

> several days later.

> It broke my heart to read of all the trouble Josh has been going

through.

> Our prayers are with him

> Becki and 6 systemic

>

>

>