Update on

[Guest guest]

is currently taking Kineret, Prednisone, Naproxen, and iron supplements.

>

> Hi Misty,

> That is great news about ! I remember that he was in the hospital over

the summer. If you don't mind me asking, what is taking?

>

> is on Relafen (500mg), Arava (10 mg) and Thalidomide (100 mgs) and we

had to add back daily pred (5 mg/day). She is supposed to take 5 mg/day for 2-3

weeks and then try and take 5 mg every other day. We are in a holding pattern

waiting for the new IL-6 medicine to become available. Take care.

> Sophie

> 's mom, systemic jra, age 9

>

>

>

[Guest guest]

Sophie,how long has been on steroids? Going from 5mg a day to 5mg every

other day is pretty extreme if it's been a while.

Becki and 11 systemic since 2 now #24 football punter aka  the Beast!

________________________________

From: misty_o_c <misty_o_c@...>

Sent: Friday, August 28, 2009 10:00:42 PM

Subject: Re: Update on

 

is currently taking Kineret, Prednisone, Naproxen, and iron supplements.

>

> Hi Misty,

> That is great news about ! I remember that he was in the hospital over

the summer. If you don't mind me asking, what is taking?

>

> is on Relafen (500mg), Arava (10 mg) and Thalidomide (100 mgs) and we

had to add back daily pred (5 mg/day). She is supposed to take 5 mg/day for 2-3

weeks and then try and take 5 mg every other day. We are in a holding pattern

waiting for the new IL-6 medicine to become available. Take care.

> Sophie

> 's mom, systemic jra, age 9

>

>

>

[Guest guest]

She's been on and off over the last year. She had been on 5mgs and we decreased

by 1 mg each week until 2 mgs and then we discontinued. She then was off for

about a week. We started back at 5 mgs/day and are supposed to continue that

for 2-3 weeks and then try every other day. Does that seem extreme? I haven't

had the heart to research steroid dosages as I would much rather she didn't have

them at all. However, without any steroids her hands were in really bad shape.

She couldn't pull her pants up or open doors. I knew that she needed something

in order to start school again.

> >

> > Hi Misty,

> > That is great news about ! I remember that he was in the hospital

over the summer. If you don't mind me asking, what is taking?

> >

> > is on Relafen (500mg), Arava (10 mg) and Thalidomide (100 mgs) and

we had to add back daily pred (5 mg/day). She is supposed to take 5 mg/day for

2-3 weeks and then try and take 5 mg every other day. We are in a holding

pattern waiting for the new IL-6 medicine to become available. Take care.

> > Sophie

> > 's mom, systemic jra, age 9

> >

> >

> >

>

>

>

>

>

>

>

>

[Guest guest]

Wonderful news!!!

Sent from my iPod

On Jan 12, 2010, at 5:11 AM, " slevindoski " <slevindoski@...>

wrote:

> Good morning! I have been hesitant to post this update, as the ups

> and downs of systemic jra have really made me a little superstitious.

>

> After two years of a flare....while trying kineret and then

> thalidomide..... is finally symptom-free. I asked that she be

> taken off thalidomide in October, because she was still on 5 mgs of

> pred every other day with swelling in her fingers, knees and other

> joints. I felt that I didn't want to risk the nerve problems if

> thalidomide wasn't working anyway. We put her back on humira until

> we could somehow get her the new med actemra. Well, two weeks after

> starting humira she started really improving. I was able to get her

> off the prednisone and she even signed up for basketball. The first

> time EVER that she has been well enough to play. She had been on

> Humira in the past and it helped but she had hip problems and other

> joints swell up from time to time. We don't know why Humira is

> working so well this time. But, we will take it! She had her first

> basketball game on Saturday, and I wasn't lookign forward to it. I

> figured she would be lagging behind and sore and limping.....But, it

> wasn't like that at all. She was running very hard, and you would

> have had no idea what she has been through over the last two years.

> I hope this lasts at least until the new meds are available.

>

> I wish all of our kids well and pray for them every day. Take care.

> Sophie

> 's mom, systemic jra, age 9

>

>

[Guest guest]

That is wonderful news!!!!!! Hope it continue's

& Grant (12, psoriatic/uveitis)

>

> Good morning! I have been hesitant to post this update, as the ups and downs

of systemic jra have really made me a little superstitious.

>

> After two years of a flare....while trying kineret and then

thalidomide..... is finally symptom-free. I asked that she be taken off

thalidomide in October, because she was still on 5 mgs of pred every other day

with swelling in her fingers, knees and other joints. I felt that I didn't want

to risk the nerve problems if thalidomide wasn't working anyway. We put her

back on humira until we could somehow get her the new med actemra. Well, two

weeks after starting humira she started really improving. I was able to get her

off the prednisone and she even signed up for basketball. The first time EVER

that she has been well enough to play. She had been on Humira in the past and

it helped but she had hip problems and other joints swell up from time to time.

We don't know why Humira is working so well this time. But, we will take it!

She had her first basketball game on Saturday, and I wasn't lookign forward to

it. I figured she would be lagging behind and sore and limping.....But, it

wasn't like that at all. She was running very hard, and you would have had no

idea what she has been through over the last two years. I hope this lasts at

least until the new meds are available.

>

> I wish all of our kids well and pray for them every day. Take care.

> Sophie

> 's mom, systemic jra, age 9

>

[Guest guest]

Sophie..Thank you so much for sharing this!!!  It's so nice to read good

news!  I hope she stays well forever.

 

Beth & Hannah, 13, OA, HMJS, vitamin d deficiency, asthma

" We can't direct the wind, but we can adjust our sails " -author unknown

________________________________

From: toivonen4 <toivonen4@...>

Sent: Tue, January 12, 2010 8:58:39 AM

Subject: Re: Update on

 

That is wonderful news!!!!!! Hope it continue's

& Grant (12, psoriatic/uveitis)

>

> Good morning! I have been hesitant to post this update, as the ups and downs

of systemic jra have really made me a little superstitious.

>

> After two years of a flare....while trying kineret and then thalidomide.

..... is finally symptom-free. I asked that she be taken off thalidomide

in October, because she was still on 5 mgs of pred every other day with swelling

in her fingers, knees and other joints. I felt that I didn't want to risk the

nerve problems if thalidomide wasn't working anyway. We put her back on humira

until we could somehow get her the new med actemra. Well, two weeks after

starting humira she started really improving. I was able to get her off the

prednisone and she even signed up for basketball. The first time EVER that she

has been well enough to play. She had been on Humira in the past and it helped

but she had hip problems and other joints swell up from time to time. We don't

know why Humira is working so well this time. But, we will take it! She had her

first basketball game on Saturday, and I wasn't lookign forward to it. I figured

she would be lagging behind

and sore and limping..... But, it wasn't like that at all. She was running very

hard, and you would have had no idea what she has been through over the last two

years. I hope this lasts at least until the new meds are available.

>

> I wish all of our kids well and pray for them every day. Take care.

> Sophie

> 's mom, systemic jra, age 9

>

[Guest guest]

Horray for ! It is always wonderful to hear a JIA kid getting to be an

actual kid. I am also on Humira right now and it's the first time I have felt

like me in a long time. I hope it keeps working and that she gets to enjoy

basketball and just being a kid.

With Love,

(MCTD, 25..dx 6.5)

From: slevindoski <slevindoski@...>

Subject: Update on

Date: Tuesday, January 12, 2010, 5:11 AM

 

Good morning! I have been hesitant to post this update, as the ups and

downs of systemic jra have really made me a little superstitious.

After two years of a flare....while trying kineret and then thalidomide.

..... is finally symptom-free. I asked that she be taken off thalidomide

in October, because she was still on 5 mgs of pred every other day with swelling

in her fingers, knees and other joints. I felt that I didn't want to risk the

nerve problems if thalidomide wasn't working anyway. We put her back on humira

until we could somehow get her the new med actemra. Well, two weeks after

starting humira she started really improving. I was able to get her off the

prednisone and she even signed up for basketball. The first time EVER that she

has been well enough to play. She had been on Humira in the past and it helped

but she had hip problems and other joints swell up from time to time. We don't

know why Humira is working so well this time. But, we will take it! She had

her first basketball game on Saturday, and I wasn't lookign forward to it. I

figured she would be

lagging behind and sore and limping..... But, it wasn't like that at all. She

was running very hard, and you would have had no idea what she has been through

over the last two years. I hope this lasts at least until the new meds are

available.

I wish all of our kids well and pray for them every day. Take care.

Sophie

's mom, systemic jra, age 9

[Guest guest]

What wonderful news!!! Michele ( 22, spondy)

..

________________________________

From: [mailto: ] On Behalf Of

slevindoski

Sent: Tuesday, January 12, 2010 7:12 AM

Subject: Update on

Good morning! I have been hesitant to post this update, as the ups and downs of

systemic jra have really made me a little superstitious.

After two years of a flare....while trying kineret and then

thalidomide..... is finally symptom-free. I asked that she be taken off

thalidomide in October, because she was still on 5 mgs of pred every other day

with swelling in her fingers, knees and other joints. I felt that I didn't want

to risk the nerve problems if thalidomide wasn't working anyway. We put her back

on humira until we could somehow get her the new med actemra. Well, two weeks

after starting humira she started really improving. I was able to get her off

the prednisone and she even signed up for basketball. The first time EVER that

she has been well enough to play. She had been on Humira in the past and it

helped but she had hip problems and other joints swell up from time to time. We

don't know why Humira is working so well this time. But, we will take it! She

had her first basketball game on Saturday, and I wasn't lookign forward to it. I

figured she would be lagging behind and sore and limping.....But, it wasn't like

that at all. She was running very hard, and you would have had no idea what she

has been through over the last two years. I hope this lasts at least until the

new meds are available.

I wish all of our kids well and pray for them every day. Take care.

Sophie

's mom, systemic jra, age 9

[Guest guest]

Yeah!! Let it last!!

Kirsten mom to , spondy, age 5

>

> Good morning! I have been hesitant to post this update, as the ups and downs

of systemic jra have really made me a little superstitious.

>

> After two years of a flare....while trying kineret and then

thalidomide..... is finally symptom-free. I asked that she be taken off

thalidomide in October, because she was still on 5 mgs of pred every other day

with swelling in her fingers, knees and other joints. I felt that I didn't want

to risk the nerve problems if thalidomide wasn't working anyway. We put her

back on humira until we could somehow get her the new med actemra. Well, two

weeks after starting humira she started really improving. I was able to get her

off the prednisone and she even signed up for basketball. The first time EVER

that she has been well enough to play. She had been on Humira in the past and

it helped but she had hip problems and other joints swell up from time to time.

We don't know why Humira is working so well this time. But, we will take it!

She had her first basketball game on Saturday, and I wasn't lookign forward to

it. I figured she would be lagging behind and sore and limping.....But, it

wasn't like that at all. She was running very hard, and you would have had no

idea what she has been through over the last two years. I hope this lasts at

least until the new meds are available.

>

> I wish all of our kids well and pray for them every day. Take care.

> Sophie

> 's mom, systemic jra, age 9

>

[Guest guest]

Hi Sophie-

 

That is fantastic news!  I have goosebumps reading the post again and again -

because as you know it takes me back about... two years!  I think Caitlin and

's disease courses have so much in common... and I hope beyond anything

that this is merely the beginning of a LONG, quiet period for ! 

 

Enjoy each one of these running, basketball playing days   In a few months, I

bet you'll be surprised about how little remembers the bad days, while

for you it will still be fresh in your heart.  I think JIA gives moms

post-traumatic stress disorder to some small degree.....

 

SUCH great news!  Thank you so much for posting - I think of you all the time.

Best hopes and blessings to you-

Colleen

From: slevindoski <slevindoski@...>

Subject: Update on

Date: Tuesday, January 12, 2010, 5:11 AM

 

Good morning! I have been hesitant to post this update, as the ups and downs of

systemic jra have really made me a little superstitious.

After two years of a flare....while trying kineret and then thalidomide.

..... is finally symptom-free. I asked that she be taken off thalidomide

in October, because she was still on 5 mgs of pred every other day with swelling

in her fingers, knees and other joints. I felt that I didn't want to risk the

nerve problems if thalidomide wasn't working anyway. We put her back on humira

until we could somehow get her the new med actemra. Well, two weeks after

starting humira she started really improving. I was able to get her off the

prednisone and she even signed up for basketball. The first time EVER that she

has been well enough to play. She had been on Humira in the past and it helped

but she had hip problems and other joints swell up from time to time. We don't

know why Humira is working so well this time. But, we will take it! She had her

first basketball game on Saturday, and I wasn't lookign forward to it. I figured

she would be lagging behind

and sore and limping..... But, it wasn't like that at all. She was running very

hard, and you would have had no idea what she has been through over the last two

years. I hope this lasts at least until the new meds are available.

I wish all of our kids well and pray for them every day. Take care.

Sophie

's mom, systemic jra, age 9

[Guest guest]

I know that n's macrophage activation syndrome gave me post

traumatic stress disorder. I used to think it was kind of a made up

disorder with the war veterans. Not anymore. (n, 21 next

Tuesday, systemic)

On Jan 14, 2010, at 10:37 AM, Colleen wrote:

> Hi Sophie-

>

> That is fantastic news! I have goosebumps reading the post again

> and again - because as you know it takes me back about... two

> years! I think Caitlin and 's disease courses have so much

> in common... and I hope beyond anything that this is merely the

> beginning of a LONG, quiet period for !

>

> Enjoy each one of these running, basketball playing days In a

> few months, I bet you'll be surprised about how little

> remembers the bad days, while for you it will still be fresh in

> your heart. I think JIA gives moms post-traumatic stress disorder

> to some small degree.....

>

> SUCH great news! Thank you so much for posting - I think of you

> all the time.

> Best hopes and blessings to you-

> Colleen

>

>

>

> From: slevindoski <slevindoski@...>

> Subject: Update on

>

> Date: Tuesday, January 12, 2010, 5:11 AM

>

>

>

> Good morning! I have been hesitant to post this update, as the ups

> and downs of systemic jra have really made me a little superstitious.

>

> After two years of a flare....while trying kineret and then

> thalidomide. .... is finally symptom-free. I asked that she

> be taken off thalidomide in October, because she was still on 5 mgs

> of pred every other day with swelling in her fingers, knees and

> other joints. I felt that I didn't want to risk the nerve problems

> if thalidomide wasn't working anyway. We put her back on humira

> until we could somehow get her the new med actemra. Well, two weeks

> after starting humira she started really improving. I was able to

> get her off the prednisone and she even signed up for basketball.

> The first time EVER that she has been well enough to play. She had

> been on Humira in the past and it helped but she had hip problems

> and other joints swell up from time to time. We don't know why

> Humira is working so well this time. But, we will take it! She had

> her first basketball game on Saturday, and I wasn't lookign forward

> to it. I figured she would be lagging behind

> and sore and limping..... But, it wasn't like that at all. She was

> running very hard, and you would have had no idea what she has been

> through over the last two years. I hope this lasts at least until

> the new meds are available.

>

> I wish all of our kids well and pray for them every day. Take care.

> Sophie

> 's mom, systemic jra, age 9

>

>

[Guest guest]

That is fantastic news Tonia. You must be so relieved. It is very interesting to

hear that his spasms have receded so much since taking anti-depressants. I

honestly believe that they could be useful and effective for more people if they

were willing to try them. I think that maybe some people do not like the idea of

them and associate them with mental illness, but many drugs can be used for

different reasons. Wasn't Viagra developed for some sort of cardiac illness? It

didn't seem to work for that, but a lot of men had an interesting side

effect....... Science is fascinating!!!

From: Tonia <tcooper1973@...>

Subject: Update on

achalasia

Date: Wednesday, 3 February, 2010, 13:11

 

He has been on the Nifidiphine extended release meds AND HIS ANTI DEPRESSENT MED

ELAVIL now for a few weeks as well as some counseling. So far so good! No real

bad spasms.NOTHING LIKE WE HAVE BEEN DEALING WITH .He has had 2 or 3 but very

mild and he did have a cold so that always flares them up.He has used the

flexril when he had them but he says didnt really give any relief from it.

He is going back to school this week after many weeks off.He has a ton of

catching up to do!!!

Lets hope all keeps going well.If we can put this surgery off for a while then

thats what we are gonna do.We will be going to see Dr Luketich though soon

anyway to just touch base and talk so when the time comes we will have and know

the basics of whats going on.

Thanks for all the support friends!!!

Tonia

[Guest guest]

Hi Tonia

I have often thought about you and wondering how he is getting on and I am

so pleased that finally things are calming down for him and the he is able to go

back to school.

I hope that your meeting with Dr Luketich goes well.

Pippa

>

> He has been on the Nifidiphine extended release meds AND HIS ANTI DEPRESSENT

MED ELAVIL now for a few weeks as well as some counseling. So far so good! No

real bad spasms.NOTHING LIKE WE HAVE BEEN DEALING WITH .He has had 2 or 3 but

very mild and he did have a cold so that always flares them up.He has used the

flexril when he had them but he says didnt really give any relief from it.

> He is going back to school this week after many weeks off.He has a ton of

catching up to do!!!

> Lets hope all keeps going well.If we can put this surgery off for a while then

thats what we are gonna do.We will be going to see Dr Luketich though soon

anyway to just touch base and talk so when the time comes we will have and know

the basics of whats going on.

> Thanks for all the support friends!!!

> Tonia

>

[Guest guest]

God is good. (n, 21, systemic)

On Mar 25, 2010, at 11:53 AM, carneyval@... wrote:

>

>

> Hello dear friends. I thought it was about time to let you guys

> know how incredibly well has been doing. I have avoided

> using what I refer to as the " R " word for a long time - as in the

> past when would really seem to be improving we would drop

> the steriods 1/2 cc and bam he would have a horrible flare and end

> up back inthe hospital and then on doses increasingly higher than

> he had ever seen before. I always felt like I was waiting for the

> next flare and for so very long, we never seemed to have to wait

> long. The reality now is that it has been over two years since

> 's last flare. It has been about 4 years since his last

> hospitalization!!!! And now - are you ready for this???? It has

> been 9 months since his last steriod dose, 9 months since his last

> cyclosporine dose & 6 months since his last methotrexate

> shot!!!!!!! That's right - my boy has been medication free for 6

> months!!! (With the exceptiion of the very rare motrin.) The rheumy

> is using the " R " word - but I am not quite ready for that... He

> does have the rare stiff morning and ocassional ache - but the ache

> is so rare that it may be from PE or baseball - but I am continuing

> to be vigilant. We still have concerns - his growth, his bone

> density, his back issues related to the compression fracture - but

> I am really starting to believe in that light at the end of the

> tunnel!! Those of you who have been around awhile remember well how

> much struggled - and as much as I was afraid to say out loud

> how well he is doing (like when he went a whole school year without

> being hospitalized for the first time - I didn't say anything til

> the last week of school!) - but there is hope - and there can be

> better times ahead!

>

> Val

> Rob's Mom (12, systemic)

>

>

[Guest guest]

Val,

This is awesome and thank you so much for sharing!!

Beth & Hannah, 13, OA, HMJS, vitamin D deficiency; asthma

" We cannot direct the wind, but we can adjust our sails "

________________________________

From: " carneyval@... " <carneyval@...>

Sent: Thu, March 25, 2010 1:53:21 PM

Subject: Update on

 

Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to as

the " R " word for a long time - as in the past when would really seem to

be improving we would drop the steriods 1/2 cc and bam he would have a horrible

flare and end up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the next flare and

for so very long, we never seemed to have to wait long. The reality now is that

it has been over two years since 's last flare. It has been about 4 years

since his last hospitalization! !!! And now - are you ready for this???? It has

been 9 months since his last steriod dose, 9 months since his last cyclosporine

dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy

has been medication free for 6 months!!! (With the exceptiion of the very rare

motrin.) The rheumy

is using the " R " word - but I am not quite ready for that... He does have the

rare stiff morning and ocassional ache - but the ache is so rare that it may be

from PE or baseball - but I am continuing to be vigilant. We still have concerns

- his growth, his bone density, his back issues related to the compression

fracture - but I am really starting to believe in that light at the end of the

tunnel!! Those of you who have been around awhile remember well how much

struggled - and as much as I was afraid to say out loud how well he is doing

(like when he went a whole school year without being hospitalized for the first

time - I didn't say anything til the last week of school!) - but there is hope -

and there can be better times ahead!

Val

Rob's Mom (12, systemic)

[Guest guest]

What a wonderful update!! Love to hear our success stories! Pretty soon Val you

will be shouting the " R " word from the rooftops! Michele ( 22, spondy)

P.

________________________________

From: [mailto: ] On Behalf Of

carneyval@...

Sent: Thursday, March 25, 2010 1:53 PM

Subject: Update on

Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to as

the " R " word for a long time - as in the past when would really seem to

be improving we would drop the steriods 1/2 cc and bam he would have a horrible

flare and end up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the next flare and

for so very long, we never seemed to have to wait long. The reality now is that

it has been over two years since 's last flare. It has been about 4 years

since his last hospitalization!!!! And now - are you ready for this???? It has

been 9 months since his last steriod dose, 9 months since his last cyclosporine

dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy

has been medication free for 6 months!!! (With the exceptiion of the very rare

motrin.) The rheumy is using the " R " word - but I am not quite ready for that...

He does have the rare stiff morning and ocassional ache - but the ache is so

rare that it may be from PE or baseball - but I am continuing to be vigilant. We

still have concerns - his growth, his bone density, his back issues related to

the compression fracture - but I am really starting to believe in that light at

the end of the tunnel!! Those of you who have been around awhile remember well

how much struggled - and as much as I was afraid to say out loud how well

he is doing (like when he went a whole school year without being hospitalized

for the first time - I didn't say anything til the last week of school!) - but

there is hope - and there can be better times ahead!

Val

Rob's Mom (12, systemic)

[Guest guest]

I'm sitting here with tears in my eyes - WOW and AMAZING and

YIPEE!!!!!!!!!!!!!!!!!!!!! I am rejoicing with you Val! Tell I said hello

and to keep being amazing!!

and Rob 20 JAS

Update on

>

>

>

> Hello dear friends. I thought it was about time to let you

> guys know how incredibly well has been doing. I

> have avoided using what I refer to as the " R " word for a long

> time - as in the past when would really seem to be

> improving we would drop the steriods 1/2 cc and bam he would

> have a horrible flare and end up back inthe hospital and then on

> doses increasingly higher than he had ever seen before. I always

> felt like I was waiting for the next flare and for so very long,

> we never seemed to have to wait long. The reality now is

> that it has been over two years since 's last flare.

> It has been about 4 years since his last

> hospitalization!!!! And now - are you ready for

> this???? It has been 9 months since his last steriod dose,

> 9 months since his last cyclosporine dose & 6 months since his

> last methotrexate shot!!!!!!! That's right - my boy has been

> medication free for 6 months!!! (With the exceptiion of the very

> rare motrin.) The rheumy is using the " R " word -

> but I am not quite ready for that... He does have the rare

> stiff morning and ocassional ache - but the ache is so rare that

> it may be from PE or baseball - but I am continuing to be

> vigilant. We still have concerns - his growth, his bone

> density, his back issues related to the compression fracture -

> but I am really starting to believe in that light at the end of

> the tunnel!! Those of you who have been around awhile

> remember well how much struggled - and as much as I was

> afraid to say out loud how well he is doing (like when he went a

> whole school year without being hospitalized for the first time -

> I didn't say anything til the last week of school!) - but there

> is hope - and there can be better times ahead!

>

> Val

> Rob's Mom (12, systemic)

>

>

>

[Guest guest]

Sooooo nice to hear some good news! It also makes me feel better about the

future for na. Thanks you so much for sharing. Don't be afraid to

celebrate!!!!!

ne & na 5 (Poly & Uveitis MTX Remicade)

>

> I'm sitting here with tears in my eyes - WOW and AMAZING and

YIPEE!!!!!!!!!!!!!!!!!!!!! I am rejoicing with you Val! Tell I said hello

and to keep being amazing!!

> and Rob 20 JAS

>

> Update on

>

>

> >

> >

> >

> > Hello dear friends. I thought it was about time to let you

> > guys know how incredibly well has been doing. I

> > have avoided using what I refer to as the " R " word for a long

> > time - as in the past when would really seem to be

> > improving we would drop the steriods 1/2 cc and bam he would

> > have a horrible flare and end up back inthe hospital and then on

> > doses increasingly higher than he had ever seen before. I always

> > felt like I was waiting for the next flare and for so very long,

> > we never seemed to have to wait long. The reality now is

> > that it has been over two years since 's last flare.

> > It has been about 4 years since his last

> > hospitalization!!!! And now - are you ready for

> > this???? It has been 9 months since his last steriod dose,

> > 9 months since his last cyclosporine dose & 6 months since his

> > last methotrexate shot!!!!!!! That's right - my boy has been

> > medication free for 6 months!!! (With the exceptiion of the very

> > rare motrin.) The rheumy is using the " R " word -

> > but I am not quite ready for that... He does have the rare

> > stiff morning and ocassional ache - but the ache is so rare that

> > it may be from PE or baseball - but I am continuing to be

> > vigilant. We still have concerns - his growth, his bone

> > density, his back issues related to the compression fracture -

> > but I am really starting to believe in that light at the end of

> > the tunnel!! Those of you who have been around awhile

> > remember well how much struggled - and as much as I was

> > afraid to say out loud how well he is doing (like when he went a

> > whole school year without being hospitalized for the first time -

> > I didn't say anything til the last week of school!) - but there

> > is hope - and there can be better times ahead!

> >

> > Val

> > Rob's Mom (12, systemic)

> >

> >

> >

[Guest guest]

Val,

Words can not explain the joy and happiness I am feeling right now.Robbie has

been through so much and this is truly a blessing. Prayers that the R continues

for a very,very long time.

Love you,

Becki and

________________________________

From: " carneyval@... " <carneyval@...>

Sent: Thu, March 25, 2010 1:53:21 PM

Subject: Update on

Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to as

the " R " word for a long time - as in the past when would really seem to

be improving we would drop the steriods 1/2 cc and bam he would have a horrible

flare and end up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the next flare and

for so very long, we never seemed to have to wait long. The reality now is that

it has been over two years since 's last flare. It has been about 4 years

since his last hospitalization! !!! And now - are you ready for this???? It

has been 9 months since his last steriod dose, 9 months since his last

cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's

right - my boy has been medication free for 6 months!!! (With the exceptiion of

the very rare motrin.) The

rheumy is using the " R " word - but I am not quite ready for that... He does

have the rare stiff morning and ocassional ache - but the ache is so rare that

it may be from PE or baseball - but I am continuing to be vigilant. We still

have concerns - his growth, his bone density, his back issues related to the

compression fracture - but I am really starting to believe in that light at the

end of the tunnel!! Those of you who have been around awhile remember well how

much struggled - and as much as I was afraid to say out loud how well he

is doing (like when he went a whole school year without being hospitalized for

the first time - I didn't say anything til the last week of school!) - but there

is hope - and there can be better times ahead!

Val

Rob's Mom (12, systemic)

[Guest guest]

Val, this is absolutely wonderful news!!!

Any chance you'll be at the DC walk this year? It seems like forever since

we last saw you.

Liz

From: [mailto: ] On Behalf

Of carneyval@...

Sent: Thursday, March 25, 2010 2:53 PM

Subject: Update on

Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to

as the " R " word for a long time - as in the past when would really

seem to be improving we would drop the steriods 1/2 cc and bam he would have

a horrible flare and end up back inthe hospital and then on doses

increasingly higher than he had ever seen before. I always felt like I was

waiting for the next flare and for so very long, we never seemed to have to

wait long. The reality now is that it has been over two years since 's

last flare. It has been about 4 years since his last hospitalization!!!! And

now - are you ready for this???? It has been 9 months since his last steriod

dose, 9 months since his last cyclosporine dose & 6 months since his last

methotrexate shot!!!!!!! That's right - my boy has been medication free for

6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is

using the " R " word - but I am not quite ready for that... He does have the

rare stiff morning and ocassional ache - but the ache is so rare that it may

be from PE or baseball - but I am continuing to be vigilant. We still have

concerns - his growth, his bone density, his back issues related to the

compression fracture - but I am really starting to believe in that light at

the end of the tunnel!! Those of you who have been around awhile remember

well how much struggled - and as much as I was afraid to say out loud

how well he is doing (like when he went a whole school year without being

hospitalized for the first time - I didn't say anything til the last week of

school!) - but there is hope - and there can be better times ahead!

Val

Rob's Mom (12, systemic)

[Guest guest]

Wow, that is amazingly good news! Love hearing stories like yours....it's HOPE

to hold onto...

-Hadley

>

>

>

>

> Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to as

the " R " word for a long time - as in the past when would really seem to

be improving we would drop the steriods 1/2 cc and bam he would have a horrible

flare and end up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the next flare and

for so very long, we never seemed to have to wait long. The reality now is that

it has been over two years since 's last flare. It has been about 4 years

since his last hospitalization!!!! And now - are you ready for this???? It has

been 9 months since his last steriod dose, 9 months since his last cyclosporine

dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy

has been medication free for 6 months!!! (With the exceptiion of the very rare

motrin.) The rheumy is using the " R " word - but I am not quite ready for

that... He does have the rare stiff morning and ocassional ache - but the ache

is so rare that it may be from PE or baseball - but I am continuing to be

vigilant. We still have concerns - his growth, his bone density, his back

issues related to the compression fracture - but I am really starting to believe

in that light at the end of the tunnel!! Those of you who have been around

awhile remember well how much struggled - and as much as I was afraid to

say out loud how well he is doing (like when he went a whole school year without

being hospitalized for the first time - I didn't say anything til the last week

of school!) - but there is hope - and there can be better times ahead!

>

> Val

> Rob's Mom (12, systemic)

>

>

>

[Guest guest]

That is amazing news! It is so encouraging to here of positive outcomes!!

Thanks for sharing!

Billie-jo and a (12 poly)

Update on

Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to as

the " R " word for a long time - as in the past when would really seem to

be improving we would drop the steriods 1/2 cc and bam he would have a horrible

flare and end up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the next flare and

for so very long, we never seemed to have to wait long. The reality now is that

it has been over two years since 's last flare. It has been about 4 years

since his last hospitalization!!!! And now - are you ready for this???? It has

been 9 months since his last steriod dose, 9 months since his last cyclosporine

dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy

has been medication free for 6 months!!! (With the exceptiion of the very rare

motrin.) The rhe umy is using the " R " word - but I am not quite ready for

that... He does have the rare stiff morning and ocassional ache - but the ache

is so rare that it may be from PE or baseball - but I am continuing to be

vigilant. We still have concerns - his growth, his bone density, his back issues

related to the compression fracture - but I am really starting to believe in

that light at the end of the tunnel!! Those of you who have been around awhile

remember well how much struggled - and as much as I was afraid to say out

loud how well he is doing (like when he went a whole school year without being

hospitalized for the first time - I didn't say anything til the last week of

school!) - but there is hope - and there can be better times ahead!

Val

Rob's Mom (12, systemic)

[Guest guest]

Yeah!!!Thanks for sharing. Good news is sweet and gives us hope.

, (16,poly?)

>

>

>

>

> Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to as

the " R " word for a long time - as in the past when would really seem to

be improving we would drop the steriods 1/2 cc and bam he would have a horrible

flare and end up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the next flare and

for so very long, we never seemed to have to wait long. The reality now is that

it has been over two years since 's last flare. It has been about 4 years

since his last hospitalization!!!! And now - are you ready for this???? It has

been 9 months since his last steriod dose, 9 months since his last cyclosporine

dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy

has been medication free for 6 months!!! (With the exceptiion of the very rare

motrin.) The rheumy is using the " R " word - but I am not quite ready for

that... He does have the rare stiff morning and ocassional ache - but the ache

is so rare that it may be from PE or baseball - but I am continuing to be

vigilant. We still have concerns - his growth, his bone density, his back

issues related to the compression fracture - but I am really starting to believe

in that light at the end of the tunnel!! Those of you who have been around

awhile remember well how much struggled - and as much as I was afraid to

say out loud how well he is doing (like when he went a whole school year without

being hospitalized for the first time - I didn't say anything til the last week

of school!) - but there is hope - and there can be better times ahead!

>

> Val

> Rob's Mom (12, systemic)

>

>

>

[Guest guest]

We are so glad that things are looking good. Now take a deep breath and relax.

Do not sit there waiting for the flare to come. Just enjoy it and have fun. And

stay around as you have so much to offer those that are now going through what

you have been through. It is good to hear the good reports. Thank you.

Veri & Jaye 16 poly

Update on

Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to as

the " R " word for a long time - as in the past when would really seem to

be improving we would drop the steriods 1/2 cc and bam he would have a horrible

flare and end up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the next flare and

for so very long, we never seemed to have to wait long. The reality now is that

it has been over two years since 's last flare. It has been about 4 years

since his last hospitalization!!!! And now - are you ready for this???? It has

been 9 months since his last steriod dose, 9 months since his last cyclosporine

dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy

has been medication free for 6 months!!! (With the exceptiion of the very rare

motrin.) The rhe umy is using the " R " word - but I am not quite ready for

that... He does have the rare stiff morning and ocassional ache - but the ache

is so rare that it may be from PE or baseball - but I am continuing to be

vigilant. We still have concerns - his growth, his bone density, his back issues

related to the compression fracture - but I am really starting to believe in

that light at the end of the tunnel!! Those of you who have been around awhile

remember well how much struggled - and as much as I was afraid to say out

loud how well he is doing (like when he went a whole school year without being

hospitalized for the first time - I didn't say anything til the last week of

school!) - but there is hope - and there can be better times ahead!

Val

Rob's Mom (12, systemic)

[Guest guest]

Wonderful news! So happy you are seeing the light at the end of a very long

tunnel...you both deserve it!

& , 6, poly (4/09) plus a bunch of other 'stuff'

Sent from my iPhone