Update on Josh

[Guest guest]

Awesome new, Georgina. I'm so happy for Josh.

Diane (, 5, pauci, iritis)

[Guest guest]

That is truly Wonderful to hear Georgina! KEEP up the

Great job there Josh! and have a GREAT TIME at camp!

from this Rusty Old Mainlander I send a you all Big Hugs!

HPLTA Rusty

Through fuzzy vision imagines be muted, but the love

and strength of heart illuminates like the brightest star!

May Peace be the guardian of tomorrow.

[Guest guest]

Hi ,

Thanks! I'll share a great big hug from you, when Josh gets back. He's

had a really busy day but just went with two friends to the mall. This

morning he was doing a community service project with a youth group he's

a part of, as a volunteer helper for the Maui Charity Walk. Had to wake

up at 4:15am and didn't get home until a little after 9am. While he has

the high energy level, it seems that he wants to take real good

advantage of it.

Aloha,

Georgina

A Morse wrote:

> That is truly Wonderful to hear Georgina! KEEP up the

> Great job there Josh! and have a GREAT TIME at camp!

> from this Rusty Old Mainlander I send a you all Big Hugs!

> HPLTA Rusty

>

> Through fuzzy vision imagines be muted, but the love

> and strength of heart illuminates like the brightest star!

> May Peace be the guardian of tomorrow.

[Guest guest]

Hi Diane,

Thanks. This is very exciting for us!!! I hope things will stay stable

for a very long time. Don't we all? This seemed like it was one of those

obstacles we just weren't able to overcome and had finally just given in

to, imagining that he'd need to stay on a low-dose forever. Which had,

after all the years, seemed okay to us. And then ... the great news.

Okay. I better stop typing. I'm probably over-reacting here. It's just

still a slight feeling of disbelief. Today makes exactly a week with no

prednisone and he's still doing fine. Yea!!!

Lots of Love,

Georgina

dbornscheu@... wrote:

> Awesome new, Georgina. I'm so happy for Josh.

>

> Diane (, 5, pauci, iritis)

[Guest guest]

Hi ,

Is he absolutely thrilled? You better believe it!!! Even as recently as

earlier this school year, he had that one day when he just forgot to

take his morning meds. I got a phone call two hours later from the

school nurse, saying that Josh was feeling awful and didn't look well at

all. Could I come in to pick him up? First thing I did, while still on

the phone, was to go check his pill box. When I saw his meds sitting

there, untouched, it made sense.

Used to be that even if he was just a little late with taking the

prednisone, he'd have symptoms. There were a lot of mornings when he

couldn't get out of bed yet, when he was so weak and his joints hurt so

bad and the fever was raging, when he couldn't get up unaided to even

use the bathroom or shower/bathe, never mind come downstairs for

breakfast ... when he'd ask me to please bring him his medicines ... and

he sounded so desperate. For him to no longer be dependent on it, it's

such a feeling of freedom. He is so excited!

Thanks so much , for your supportive thoughts. Much appreciated.

How is Rob doing now? I hope he's feeling okay these days. I was reading

how he had problems again with his lungs and then possibly his kidneys

but it seemed to clear up. Also, I felt awful hearing what happened with

that outdated test, labeling Rob as psychosomatic. I hope having a

clear and precise explanation in the record, with an addendum, will do

enough to explain Rob's particular situation. I know you'll make things

right.

I was so excited to read about his continued success with the growth

hormone treatments, too. We've got to get in to see the endocrinologist.

We're way overdue. I wish he was on our island, though. It's hard

needing to schedule an appt and make the arrangements, get tickets and

fly off-island for an exam, with busy school and work schedules and the

extracurricular activities. Hopefully we can go during the summer. Josh,

now, is about 4 feet 8 inches tall. Short, still, but such a huge

improvement that he's feeling immensely proud of himself and on top of

the world. Very confident! He feels about 10 feet tall! Not sure if he's

back on the chart yet or not. He used to be way, way, below the 3rd

percentile. I'll have to look it up at some point.

With Lots of Love and Aloha,

Georgina

snooksmama@... wrote:

> Georgina:

> I sit here with tears rolling down my face as I write. Words cannot

> describe how thankful I am to hear about Josh's great news!! Is he

> absolutely thrilled???

> I hope that he continues to do so very well. We are so happy for you!!

> Love,

> and Rob 15 Spondy

[Guest guest]

Greetings, Oliver!

Can you believe it?!? How many years has it been now? Maybe 8, since our

very first email conversation? And how many kids with systemic JRA have

we come to know during this time? One by one, so many of them seemed to

improve dramatically and taper off their meds. Eventually their parents

would often say farewell, leave the group. Occasionally I'd get a letter

to give an update. Sometimes they'd have another serious flare and

rejoin us.

All along, as very happy as I was to hear of the wonderful news, it made

me wonder sometimes why things had to be so different, seemingly so much

more difficult, for . I questioned why he couldn't have the same

kind of positive response from something we'd tried and get a welcome

and deserved break.

Damien, too, seems to have had a very rough case and difficult, years

long, unrelenting, sort of disease course. Even so, we've come a long

way. We've managed to parent a child with arthritis and finally seen

some measures of success. It has always helped me to have the

interactions that we've had, to know of your and Damien's experiences

and struggles and to be able to feel that sense of camaraderie that

comes along with knowing that someone else has walked in your shoes and

knows what it's been like. (That goes for others as well, just that

Oliver was one of my first-ever acquaintances, online or off, whose

child had the very same type of JRA as my child.)

Thank you, for your words of support and for your understanding.

Please update on Damien, when you have a chance. I'd love to know how

he's doing.

Aloha,

Georgina

Super Zola wrote:

> Georgina,

>

> Truly wonderful news! My very best wishes got to Josh and all the family.

>

> Oliver

[Guest guest]

Hi e,

Thanks for your supportive thoughts. Josh had an uphill battle for so

many years. To finally reach this place, and for him to be where he is

now, we are so grateful and very excited.

He was in kindergarten when he first got sick. The long-term prognosis

didn't look good at all, as his arthritis symptoms were so severe and

unrelenting. The systemic symptoms persisted despite our best efforts

and so many of his joints were affected at various times, from his

shoulders down to his ankles.

Now, nearing completion of his first year in high school, his joints are

in very good shape and his pain is minimal. He hasn't had the fevers or

rash in a long time. Xrays might show some " abnormal bony growth " or

other such descriptive labels but one would never know that he's been

battling arthritis for all these years. At this stage, it looks like

he's come out a real winner. I only wish that this was the case for all

of our children with arthritis.

With Love and Aloha,

Georgina

bound for london wrote:

> Wonderful news Georgina and Josh! We are thrilled for you.

We are at 3 years that we have been dealing with the symptoms of the disease

and 2.5 years of Pred. I can't believe he has been on Pred for 9 years.

Wow! Glad that things are looking up for you.

Time to celebrate in your household I am sure!!!!

>

> e, mom to joe , 17 poly

[Guest guest]

Hi Donna,

Thanks so much! For your kind words and all that you do. It's folks like

you (and the rest of the FACES crew) people who have grown up with JRA

and still invest the time and effort to be there for the next

generation, that are our role models and guiding lights, who have helped

to see us through the periods of darkness ~ the worries and the tears ~

when times were tough. The understanding and compassion and kindness has

meant so much to us. Being able to tell your child that so and so had

this too and that this procedure or medication helped and that even if

this doesn't work, we'll still be able to work around it and come out

okay, because others before us have managed, really does make things

easier to cope with.

Keep up your great work, okay? And thanks for being here and sharing

your wisdom with us. And not just Donna ... I mean all the JRA vets! I

cry when I hear you're in the hospital and I breathe a sigh of relief

and then smile, when you come back home, recover, and tell us about your

latest " adventure " ... We're in this together. We're the JRA Warriors!!!

With Much Aloha,

Georgina

faces1999@... wrote:

> Congrats Josh and you too mom. Such exciting news and thoughts for

continued

> success!!!

> Hugs and smiles! Donna

[Guest guest]

Hi Becki,

Thanks! Hugs right back at ya'!!!! When we talked on the phone, I told

you things were looking really good. Well ... here's the proof!

Love,

Georgina

Arthurnator@... wrote:

> Hi Georgina,

> My heart is so happy right now.That is just the best news in the

world.Whoo

> Hooo!!!

> The first 3 things to pop in my head.

> Love and Hugs

> Becki and 5 systemic

[Guest guest]

Georgina and Josh,

Way to go on no more prednisone!!!!!! What a fantasitc milestone,

expecially after so long.

We too hope to join the pred.-free group in about 5 weeks.

Stacia and Hunter, 8,systemic,iritis

[Guest guest]

WOW! it sounds like Josh is really becoming a mover and shaker! Way to

go Josh.. a great role model for younger sister...

Rusty

[Guest guest]

Georgina, what excellent news!!! Dosen't it feel like the world has been

lifted off of your shoulders? We're still living life to the fullest since

is still in remission...what a wonderful feeling when we get our child

back!!!

We wish you and Josh the very best!!!

and

[Guest guest]

I'm so thrilled for you and your son. We're new to this and it just

blows my mind to think of what your son has had to endure....and of

course, you too as the Mom and leader. I hope he continues to

improve!

> Hi,

>

> I'm back. Had to write just one more email, before going upstairs.

And,

> weirdly enough, messages that were sent in the past couple of days

seem

> to still be trickling in? I can't believe a week's passed already

and I

> still haven't typed an update on 's last visit to the

> rheumatologist. Now that I've sort of gotten all caught up with the

most

> recent arthritis-related news from the journals and other online

media,

> I better hurry up and do that. I guess the time has come to finally

> disclose our secret?!?

>

> Dr. Dave flew over to Maui a week ago, on Friday. I was able to

sign up

> for their very last appt of the day and somehow managed to drive

back

> into town from across the island, pick up both kids, and still make

it

> in by 3:30. The three of us were so excited because the nurse told

us

> that and her Mom were still there, in the next

> room, speaking with the doctor. We caught up with each other on the

> events of the day, with me reminding Josh and Kayla to please be

patient

> while waiting for our turn. We've had so many very lengthy visits

> throughout the years, with Dr. Dave and Dr. Kara taking what seemed

like

> all the time in the world to explain in detail all the options we

had,

> what our plan of action could and would be, and try to answer my

many

> questions. As you can imagine, I used to go in, often, with long

lists

> of them! (They were so patient with me. And Josh. Very supportive.)

> Since Josh has been doing so much better these days, our visits are

much

> briefer. I have no problem with the wait time, understanding well

how

> others may need a much longer consultation.

>

> This time, though, we were anxious to finally have the opportunity

to

> meet our online friends. (, if you're reading this, it was

a

> true pleasure to meet you! We could feel your warmth and kindness

in

> your smile and your pleasant personality. Your daughters, both of

them,

> seem like amazing people. My Kayla thought they were just adorable,

and

> so sweet. , already looking forward to this summers JRA Camp,

says

> he will look out for Jackie while they're on the airplane and make

sure

> she's okay. He thinks that she and Holly will get along fabulously

and

> become good friends. Let's hope they have a chance to meet!)

>

> Anyway, when and the girls left we saw the doctor.

's

> last labs showed a decreased SED rate. Down to 19. Very good. His

> hemoglobin numbers were a bit low. We re-did them today and I'm

hopeful

> they'll be better this time around. He hasn't taken iron

supplements in

> a long time. Maybe that's all he needs to do, to resolve the issue

this

> time? (Sounds overly simplified and optimistic, doesn't it? Reading

> Val's latest messages made me think about the various stages we've

been

> through in dealing with JRA-related concerns and how different our

> responses can be, over time.) I didn't ask many questions at this

appt.

> and didn't dwell on the negative ... because there's so much to be

> positive about. Josh is doing so well that finally, nine years to

the

> month, we have successfully discontinued the prednisone! It'll be a

week

> tomorrow ... and the sky didn't fall down. Josh didn't turn green.

He's

> still doing okay

>

> Okay. That part sounded dramatic ... but we've struggled for so

long and

> he's had such a difficult time trying to taper without flaring

majorly

> that at a lot of different points I just felt like it had become

the

> impossible dream. I basically gave up the whole idea of Josh ever

being

> off steroids and, at last, it's become a reality. He's taking an

NSAID

> (indomethacin), Methotrexate, and Plaquenil (Hydroxychloroquine)

and the

> arthritis is being controlled. Folic acid, Cytotec (misoprostol),

and

> growth hormone are still a part of the daily mix too but our

nemesis has

> been defeated!!!!

>

> I am so, so, happy to be able to report that Josh has finally

joined the

> crowd that has been able to 'kick the habit' after being steroid

> dependent. It feels like a whole new ballgame now. A happy ending.

We're

> both fully aware that changes may take place. That things may or

may not

> be smooth sailing from here on. But to have been able to reach a

goal

> that we set our sights on so many years ago gives us both such a

great

> feeling. From feeling worried, scared, apprehensive, deceived,

> heartbroken ... lots of different negative emotions ... we've

finally

> overcome one of the biggest obstacles we've faced. Prednisone was a

> miracle drug for my son. It saved him, when nothing else could act

> quickly enough. It helped keep him going through the most trying of

> times. But, as anyone who has taken it on a long-term basis knows,

there

> were high costs. Both emotional and physical. We originally planned

to

> use it for just a few weeks. Just until the Methotrexate became

> effective. Starting high and tapering quickly, finding the minimum

> maintenance level dose. No matter how well we plan, things don't

always

> work out the way we hope they will. Plans change. For now though,

in

> this particular case, we do seem to have a happy ending.

>

> Okay. I must say goodnight now. I'm just very happy to be able to

share

> our news and I hope that it will perhaps give some hope to those

who may

> be feeling a bit defeated right now. As Kim said so eloquently in

one of

> her recent messages ... my heart hurts too, each time I read of a

child

> who's going through a difficult time (and several immediately come

to

> mind, right now.) just that I haven't had much chance lately to sit

and

> write to offer my support. I've never overcome my wordiness, still

> hoping to some day get the hang of those very brief but succinct

> messages that some seem so good at writing, but please know that

all of

> you, and the children, are in my thoughts.

>

> With Love and Aloha, Georgina

> (Mom to Josh, age 15, systemic JRA since May '95)

[Guest guest]

I'm so happy for your family. That is wonderful news.

Christy (Abbie, 14 systemic)

Update on Josh

> Hi,

>

> I'm back. Had to write just one more email, before going upstairs. And,

> weirdly enough, messages that were sent in the past couple of days seem

> to still be trickling in? I can't believe a week's passed already and I

> still haven't typed an update on 's last visit to the

> rheumatologist. Now that I've sort of gotten all caught up with the most

> recent arthritis-related news from the journals and other online media,

> I better hurry up and do that. I guess the time has come to finally

> disclose our secret?!?

>

> Dr. Dave flew over to Maui a week ago, on Friday. I was able to sign up

> for their very last appt of the day and somehow managed to drive back

> into town from across the island, pick up both kids, and still make it

> in by 3:30. The three of us were so excited because the nurse told us

> that and her Mom were still there, in the next

> room, speaking with the doctor. We caught up with each other on the

> events of the day, with me reminding Josh and Kayla to please be patient

> while waiting for our turn. We've had so many very lengthy visits

> throughout the years, with Dr. Dave and Dr. Kara taking what seemed like

> all the time in the world to explain in detail all the options we had,

> what our plan of action could and would be, and try to answer my many

> questions. As you can imagine, I used to go in, often, with long lists

> of them! (They were so patient with me. And Josh. Very supportive.)

> Since Josh has been doing so much better these days, our visits are much

> briefer. I have no problem with the wait time, understanding well how

> others may need a much longer consultation.

>

> This time, though, we were anxious to finally have the opportunity to

> meet our online friends. (, if you're reading this, it was a

> true pleasure to meet you! We could feel your warmth and kindness in

> your smile and your pleasant personality. Your daughters, both of them,

> seem like amazing people. My Kayla thought they were just adorable, and

> so sweet. , already looking forward to this summers JRA Camp, says

> he will look out for Jackie while they're on the airplane and make sure

> she's okay. He thinks that she and Holly will get along fabulously and

> become good friends. Let's hope they have a chance to meet!)

>

> Anyway, when and the girls left we saw the doctor. 's

> last labs showed a decreased SED rate. Down to 19. Very good. His

> hemoglobin numbers were a bit low. We re-did them today and I'm hopeful

> they'll be better this time around. He hasn't taken iron supplements in

> a long time. Maybe that's all he needs to do, to resolve the issue this

> time? (Sounds overly simplified and optimistic, doesn't it? Reading

> Val's latest messages made me think about the various stages we've been

> through in dealing with JRA-related concerns and how different our

> responses can be, over time.) I didn't ask many questions at this appt.

> and didn't dwell on the negative ... because there's so much to be

> positive about. Josh is doing so well that finally, nine years to the

> month, we have successfully discontinued the prednisone! It'll be a week

> tomorrow ... and the sky didn't fall down. Josh didn't turn green. He's

> still doing okay

>

> Okay. That part sounded dramatic ... but we've struggled for so long and

> he's had such a difficult time trying to taper without flaring majorly

> that at a lot of different points I just felt like it had become the

> impossible dream. I basically gave up the whole idea of Josh ever being

> off steroids and, at last, it's become a reality. He's taking an NSAID

> (indomethacin), Methotrexate, and Plaquenil (Hydroxychloroquine) and the

> arthritis is being controlled. Folic acid, Cytotec (misoprostol), and

> growth hormone are still a part of the daily mix too but our nemesis has

> been defeated!!!!

>

> I am so, so, happy to be able to report that Josh has finally joined the

> crowd that has been able to 'kick the habit' after being steroid

> dependent. It feels like a whole new ballgame now. A happy ending. We're

> both fully aware that changes may take place. That things may or may not

> be smooth sailing from here on. But to have been able to reach a goal

> that we set our sights on so many years ago gives us both such a great

> feeling. From feeling worried, scared, apprehensive, deceived,

> heartbroken ... lots of different negative emotions ... we've finally

> overcome one of the biggest obstacles we've faced. Prednisone was a

> miracle drug for my son. It saved him, when nothing else could act

> quickly enough. It helped keep him going through the most trying of

> times. But, as anyone who has taken it on a long-term basis knows, there

> were high costs. Both emotional and physical. We originally planned to

> use it for just a few weeks. Just until the Methotrexate became

> effective. Starting high and tapering quickly, finding the minimum

> maintenance level dose. No matter how well we plan, things don't always

> work out the way we hope they will. Plans change. For now though, in

> this particular case, we do seem to have a happy ending.

>

> Okay. I must say goodnight now. I'm just very happy to be able to share

> our news and I hope that it will perhaps give some hope to those who may

> be feeling a bit defeated right now. As Kim said so eloquently in one of

> her recent messages ... my heart hurts too, each time I read of a child

> who's going through a difficult time (and several immediately come to

> mind, right now.) just that I haven't had much chance lately to sit and

> write to offer my support. I've never overcome my wordiness, still

> hoping to some day get the hang of those very brief but succinct

> messages that some seem so good at writing, but please know that all of

> you, and the children, are in my thoughts.

>

> With Love and Aloha, Georgina

> (Mom to Josh, age 15, systemic JRA since May '95)

>

>

>

>

>

>

>