Re: can't find MAS archives

December 18, 2004

Hi Lynn,

I have saved most items relevant to systemic and MAS - but the folder is on my

computer at work, since my home computer was down for so long. I'll look on

Monday and forward what I have to you. I hope that you aren't asking because

you have a concern for Mickey? Is she ok?

Val

Rob's Mom (7,systemic)

In a message dated 12/18/2004 9:57:24 PM Eastern Standard Time, Lynn

<llyoung@...> writes:

>

>Hi Georgina or anyone:

>I went looking for some of the archived articles on macrophage

>activation syndrome, and couldn't seem to raise anything in the

>archives of the list. I know I have read articles that were posted

>quite a while back. My computer did a major crash back in August and I

>lost all the stuff I had saved on things I thought were relevant to

>systemic. Can anyone help with this? I would like to refresh my memory

>on the details of this.

>

>Lynn

>Mom to Mickey, systemic jra since 3

>

December 19, 2004

Hi Val:

No, I'm not worried about MAS right now, but thanks for your concern.

Or at least - its just that I realized I have forgotten the details of

what signs we should be watchful for. And she seems to be starting a

flare. You know how when things are going really great, you sort of

relax and let your guard down a bit? But Mickey has been off prednisone

since early September, is just on mtx and indomethacin. She's been fine

- no pain or effusions and we have been very thankful. But in the last

week her R ankle has become painful and shows swelling, and gradually

as the week went on, her knee and hip on the same side have become

painful. So we are wresting with the choices - she really doesn't want

to go back on prednisone - and she is nowhere near the maximum dose of

mtx for her weight, so I guess increasing that is an option.

We are just grateful she has had that huge breakthrough, in a way, for

her. 3 and a half months of no prednisone is a first for her. We've

gotten it low before, and she even came off of it a couple of times...

but flared really badly within a week. So this has been great, even if

its not lasting. We don't see her rheumatologist until mid January,

I'll phone Sick Kids and let them know what's going on, they may fit

her in sooner, but I'm pretty sure not before January, anyhow, given

the holidays. It doesn't feel urgent, and so far only her ankle has

effusions. I'll let them know what's going on and see what they

recommend. She is just so disappointed, though.

So anyway, Monday is fine for the articles... at least you had the

sense to back them up somewhere!!! More than I did, and you'd think I'd

know better - I always back up my work stuff, religiously! So thanks, I

appreciate you offering to send them. Hope you, Rob and your family

have a great Christmas!

Lynn

December 19, 2004

I copied info on MAS and keep it in a folder on my desk. As all of we

systemic parents know, it is a deep fear for us, and you don't have much

time to act with it. Tori's dad wrote to us on FEb 27th, 2004 telling us

that she was in the hospital with it. Then there is more info posted that

day and it came from the archives back in May, 2001. It is an article from

Scotland from June, 1999. I hope this helps. It is nine pages long. It is

titled " Macrophage Activation Syndrome at Juvenile Chronic Arthritis Onset. "

06/99, 6th EPRC, 6-9 June 99, Glasgow and n

Re: can't find MAS archives

>

> Hi Lynn,

> I have saved most items relevant to systemic and MAS - but the folder is

on my computer at work, since my home computer was down for so long. I'll

look on Monday and forward what I have to you. I hope that you aren't

asking because you have a concern for Mickey? Is she ok?

> Val

> Rob's Mom (7,systemic)

>

> In a message dated 12/18/2004 9:57:24 PM Eastern Standard Time, Lynn

<llyoung@...> writes:

>

> >

> >Hi Georgina or anyone:

> >I went looking for some of the archived articles on macrophage

> >activation syndrome, and couldn't seem to raise anything in the

> >archives of the list. I know I have read articles that were posted

> >quite a while back. My computer did a major crash back in August and I

> >lost all the stuff I had saved on things I thought were relevant to

> >systemic. Can anyone help with this? I would like to refresh my memory

> >on the details of this.

> >

> >Lynn

> >Mom to Mickey, systemic jra since 3

> >

December 19, 2004

Hi Lynn,

I know what you mean about letting your guard down! I am sorry to hear that

Mickey is going through so much. i hope that raising the mtx dose is helpful -

if that's the direction you end up taking. Rob is feeling pretty well these

days - few pain complaints - for which I am very grateful - but his labs haven't

come close enough to the normal range to start tapering the steiods - and at 42

total mg a day, he is really showing all of the sings of cushings. The mmod

swings are tough - mostly easy to cry and easily frustrated, but he's coping

pretty well. It's hard sometimes to feel good about how he is doing, when I

look at him - he looks so unlike my little boy right now, so every time I look

at him it's a reminder of all he is going through and it just plain makes me

mad. I wish it was me. He went to a birthday party today, a friend he has had

since kindergarden, though Rob changed sshools when he began first grade, they

have remained friends and get together often. When Rob's friend saw him coming

up the walk, he started jumping up and down, saying " 's here! 's

here! " - and the kid beside Rob's friend looked at him, and said with a sneer

" What grade's HE in " Ohhh the urger to.... - but I smiled and said hello, and

wished Rob's friend a Happy Birhtday. Robbie just looked up at me aad siged.

All the kids tower over him - and all the extra weight and the moon face just

make him look younger - which doesn't help. Sorry to ramble feeling kind of low

- but we have been havning lot fun together - we laugh a lot - which is

wonderful, He is looking forward to Christmas and has finally pulled 15 " I'd

like to get some of these items " from the PAGES of his orignal wish list. I

hope that Mickey feels better soon, and that you and your family have a

wonderful holiday! I'll go through the folder at work, and try not to duplicate

some of the things that Georgina posted. Take care!

val

Rob's Mom (7,systemic)

In a message dated 12/19/2004 11:47:22 AM Eastern Standard Time, Lynn

<llyoung@...> writes:

>

>Hi Val:

>No, I'm not worried about MAS right now, but thanks for your concern.

>Or at least - its just that I realized I have forgotten the details of

>what signs we should be watchful for. And she seems to be starting a

>flare. You know how when things are going really great, you sort of

>relax and let your guard down a bit? But Mickey has been off prednisone

>since early September, is just on mtx and indomethacin. She's been fine

>- no pain or effusions and we have been very thankful. But in the last

>week her R ankle has become painful and shows swelling, and gradually

>as the week went on, her knee and hip on the same side have become

>painful. So we are wresting with the choices - she really doesn't want

>to go back on prednisone - and she is nowhere near the maximum dose of

>mtx for her weight, so I guess increasing that is an option.

>We are just grateful she has had that huge breakthrough, in a way, for

>her. 3 and a half months of no prednisone is a first for her. We've

>gotten it low before, and she even came off of it a couple of times...

>but flared really badly within a week. So this has been great, even if

>its not lasting. We don't see her rheumatologist until mid January,

>I'll phone Sick Kids and let them know what's going on, they may fit

>her in sooner, but I'm pretty sure not before January, anyhow, given

>the holidays. It doesn't feel urgent, and so far only her ankle has

>effusions. I'll let them know what's going on and see what they

>recommend. She is just so disappointed, though.

>

>So anyway, Monday is fine for the articles... at least you had the

>sense to back them up somewhere!!! More than I did, and you'd think I'd

>know better - I always back up my work stuff, religiously! So thanks, I

>appreciate you offering to send them. Hope you, Rob and your family

>have a great Christmas!

>

>Lynn

>

December 21, 2004

Hi Val:

Yup. Been there. The callousness and cruelty that some kids are capable

of is astounding. Mickey also is very small for her age - to the point

we finally saw an endocrinologist. She wasn't even on the percentile

size scale for someone her age. So far, as that appointment coincided

with the time she went off the prednisone, we decided to just wait and

see if she would experience any growth off the pred. So far, very

minimal. She is very philosophical about her size, though. It does

bother her, but she copes with it. It's easier now that she's a little

older, only because her tolerance for other's ignorance has grown too!

One of my concerns about her lack of size is that even adults treat her

as if she was years younger than she is... until they have a

conversation with her! Then its... " how old are you??? " She's more than

capable of dealing with other people's 'lack of awarness' and if people

annoy her too much, they get treated to her very polite lecture on the

affects of arthritis, and arthritis medications on children! One of the

hardest things for me was to learn to keep my mouth shut and let her

deal with it in her own way. Which, depending on her mood is anything

from a silent eyeroll to an all out lecture! THings in this area too,

improve with time!

Lynn

On Dec 20, 2004, at 1:22 AM, carneyval@... wrote:

Hi Lynn,

I know what you mean about letting your guard down! I am sorry to

hear that Mickey is going through so much. i hope that raising the mtx

dose is helpful - if that's the direction you end up taking. Rob is

feeling pretty well these days - few pain complaints - for which I am

very grateful - but his labs haven't come close enough to the normal

range to start tapering the steiods - and at 42 total mg a day, he is

really showing all of the sings of cushings. The mmod swings are tough

- mostly easy to cry and easily frustrated, but he's coping pretty

well. It's hard sometimes to feel good about how he is doing, when I

look at him - he looks so unlike my little boy right now, so every time

I look at him it's a reminder of all he is going through and it just

plain makes me mad. I wish it was me. He went to a birthday party

today, a friend he has had since kindergarden, though Rob changed

sshools when he began first grade, they have remained friends and get

together often. When Rob's friend saw him coming up the walk, he

started jumping up and down, saying " 's here! 's here! " -

and the kid beside Rob's friend looked at him, and said with a sneer

" What grade's HE in " Ohhh the urger to.... - but I smiled and said

hello, and wished Rob's friend a Happy Birhtday. Robbie just looked up

at me aad siged. All the kids tower over him - and all the extra

weight and the moon face just make him look younger - which doesn't

help. Sorry to ramble feeling kind of low - but we have been havning

lot fun together - we laugh a lot - which is wonderful, He is looking

forward to Christmas and has finally pulled 15 " I'd like to get some of

these items " from the PAGES of his orignal wish list. I hope that

Mickey feels better soon, and that you and your family have a wonderful

holiday! I'll go through the folder at work, and try not to duplicate

some of the things that Georgina posted. Take care!

val

Rob's Mom (7,systemic)

In a message dated 12/19/2004 11:47:22 AM Eastern Standard Time, Lynn

<llyoung@...> writes:

>

>Hi Val:

>No, I'm not worried about MAS right now, but thanks for your concern.

>Or at least - its just that I realized I have forgotten the details

of

>what signs we should be watchful for. And she seems to be starting a

>flare. You know how when things are going really great, you sort of

>relax and let your guard down a bit? But Mickey has been off

prednisone

>since early September, is just on mtx and indomethacin. She's been

fine