Re: Josh's Update

January 12, 2000

Georgina,

I hope Josh is feeling better. I know I pray hard every night that Tally

stays well. I'll keep your son in my prayers tonight.

kathy

January 12, 2000

My heart goes out to you Georgina. It's so tough never quite knowing what

you are going to wake up to in the morning. Life is so easy when things are

normal, it's easy to forget the tough times. You must be wondering why this

happened. If only we all knew. We have certainly had our tough times with

but we are truely blessed at the moment. Your story though reminds me

that it could happen to us tomorrow! Good luck to your family and my

thoughts are with you during this tough patch.

January 12, 2000

Hi Georgina,

I felt terrible reading your letter- hopefully this flare will pass as

quickly as it came. Give Josh a big gentle hug ! We hope he feels better soon.

Rena

January 12, 2000

georgina, i am sorry to hear about your son, josh. he sounds like a great

kid, im sure he is.

well tristans appointment for his joint injections is 2 days away and i am

very nervous and trying not to think about it until its time. i got some bad

news yesterday though, tristans rheumy called yesterday and he is VERY anemic

and the stool samples proved he was passing blood. so, they think the

ibuprofen is hurting his tummy and even though hes now taking zantac (i threw

out the liquid and got the pills to crush up) they want to take him off the

motrin. i said " well thats his greatest pain reliever! what do i give him

now? " they said childrens tylenol..yeah! sure! thats like taking PEZ for a

broken foot! and he hates the taste of the tylenol. then to top it all off,

last night we were up all night because tristan started to run a fever (it

was 103.3) and he was miserable. his knees are the size of apples and his

ankles are so swollen. i think hes catching a cold, i pray its not the flu

because then we may have to postpone the joint injections which will kill me

because with him being off the motrin he is in much pain. so i went against

doc's orders and gave him half a dose of motrin. he is feeling much better.

so i know how frustrating this is for everyone. i was so upset last night. i

wonder whens enough FINALLY going to be enough?! i can take a beating but my

child cant. it hurts us all to see them cry. cheri

January 13, 2000

Dear Georgina, I am so sorry to hear about Josh. This disease is so

sneaky. When n feels good I am on top of the world. Then it just

seems to crash in when she has a bad day, and as you know we never know when

they are coming. It gets so depressing to see these kids suffer, and no one

can seem to help. No one knows why these kids have their flares.

n is in her second week of school and so far so good. Her hands are

getting more swollen, but they are just stiff, not sore. She gets the rash

everyday still, but we have been fever free for one month. I really hate

this disease. When our children are doing well , it is even hard to believe

that they are sick. But soon enough they flare, and we are brought back to

reality.

Most everything I know about this disease I have learned through you and

your sight. You are doing a great service for people . I can't thank you

enough. It seems like I know more than the doctors now. We will keep Josh

in our prayers. in Portland

Josh's Update

>From: Georgina <gmckin@...>

>

>Hello everyone,

>

>I hope things are still going in the right direction, health-wise, for

>those whose children are doing well. It's reassuring to hear how others

>have gone through so much and then had periods of feeling well, at last.

>I was so overjoyed at how well Josh was doing. This was the best xmas

>season he's had in 3 years time. The notorious winter-time flare,

>unrelated to any changes in weather around here, was over more quickly

>than usual. His visit last month with the rheumatologist went fantastic.

>All his joints were good. No systemic symptoms. Even the ferritin level

>came back within the normal range. School started yesterday. He went in

>looking so healthy and happy ... and had a great day. Was so happy to be

>back in the old routine and get to hang out with all his friends. even

>enjoyed doing his homework!

>

>Then, this morning, he could barely get down the stairs. Even his long

>shower didn't help. When he feels like this, we all seem to move a

>little slower in the morning. Kayla didn't want to be late for school

>though, on her second day back, so I sort of rushed things along, as

>gently as I could. Getting dressed, having breakfast, taking meds,

>fixing the children's hair... and off we went to the car, me rolling

>Josh's backpack-on-wheels to speed things along a little bit.

>

>Drove to the school, parked in front of the handicapped spot because

>someone else was in it, got out and went around to the other side

>because Josh needed help today with his seatbelt. Kayla jumped out and

>after a hug and kiss was on her way, smiling, to her classroom. I

>reached in to undo Josh's seatbelt for him and saw tear stains on his

>cheeks. That makes me feel so sad. I asked him how he was doing and he

>said not good at all. He was sore everywhere! He said he thought he had

>a fever, too. He wanted to go lay down at the nurse's office. I helped

>him out of the car and felt his forehead. Didn't feel too warm to me but

>then again, I didn't want to accept that he could even have a fever

>after doing so well the past month. He lifted up his shorts to show me

>his thigh. Full blown JRA rash was back again! All splotchy and red. I

>lifted his T-shirt up and there it was, covering his chest too.

>

>I said let's just go see your teacher and drop off your backpack. Let's

>at least let her know you're here at school but not feeling so good and

>that you'll be back in class when you're feeling a little better, later.

>Sometimes even when the mornings are really bad, Josh will start

>improving and wind up feeling just fine again, in a couple of hours. We

>walked past the health room and went on to his classroom. The teacher

>immediately knew that he was not well. She said it was amazing how

>things can change so suddenly, just overnight. She has regular RA, so

>she's very understanding. She asked Josh how his joints were feeling and

>he showed us his wrists. They were fine just yesterday but today, he has

>major swelling/developing-nodules again and they are hot to touch. I let

>her know that we'd stop at the nurse's to take Josh's temp, as I broke

>our thermometer here at home and with Josh doing so well, we hadn't yet

>needed to replace it. Well, the nurse took his temp and it kept climbing

>higher and higher till it finally started beeping .... at 104.

>

>So, our plans for the morning changed. I took Josh back home with me,

>stopping first at Long's to buy a new thermometer. He was trying to

>figure out why this happened and said maybe his wrists got swollen

>because he hadn't been at school for almost a month and when he went

>back yesterday he did more writing than he had for a long time. I really

>don't know. Maybe that had something to do with his bent finger and

>swollen wrists but it doesn't explain the high fever or rash. Meanwhile,

>Josh is resting, sleeping on and off, here on the couch. I don't think

>he'll be going back to school today. It's after 11:30 and there isn't

>much improvement yet. Plus, Wednesday is their short day and they get

>out at 1:15pm. So, we'll try again tomorrow (after Dr appt.) or Friday.

>He really wanted to be at school today, as they get their report cards

>and he loves seeing how well he's done. He thinks he made the Honor Roll

>again. If so, that will cheer him up a bit

>

>Sorry for such a long story. Some people can be so concise in just a few

>words. I'll have to work harder on that But now you've got the full

>story. Josh was doing really, really well. No pain or sore joints for a

>long time, a month ... and now this again! But he'll be okay, I'm sure.

>After taking it easy. I didn't even call his pediatrician, as his

>rheumatologist is coming over tomorrow for the Maui JRA clinic and it's

>probably better that we talk to him about this. Last month he said that

>if Josh stayed stable for the next few weeks we might consider lowering

>the prednisone dose. I hope this doesn't interfere with that. I'll let

>you all know how it goes.

>

>Aloha,

>Georgina

>

>---------------------------

January 13, 2000

Hi Georgina

I'm finally back myself. My computer died a month ago, just got it finally

all repaired and up and running today. I had 328 e-mails WOW! But that's

okay I spent quite a bit of time reading them and deleting the junk.

For the new parent's on the list welcome. To let them know who I am, I

will briefly tell you that I have a 13 year old daughter who has systemic

JRA and who was diagnosed at the age of 2.

Georgina, I can fully relate to you and Josh's flare. That happened to us

many, many times, but hang in there, it will settle again.

To update you all on Leigh-Ann, she is doing really well right now. Her

arthritis has been very quiet (thank God) for over a year now. I can only

say that I feel that the cyclosporine has made the difference to her and

all of us.

She hasn't had a kidney stone attack in a few months either, so hopefully

that is starting to settle down as well. We have been steroid free for such

a long time I'm hoping that the stones will be less and less.

Georgina I'm saying a special prayer for you and Josh that his flare is

quick and will quieten down fast.

Well gotta get back to all the e-mails and it's good to be back with the

group.

-Coady

Josh's Update

From: Georgina <gmckin@...>

Hello everyone,

I hope things are still going in the right direction, health-wise, for

those whose children are doing well. It's reassuring to hear how others

have gone through so much and then had periods of feeling well, at last.

I was so overjoyed at how well Josh was doing. This was the best xmas

season he's had in 3 years time. The notorious winter-time flare,

unrelated to any changes in weather around here, was over more quickly

than usual. His visit last month with the rheumatologist went fantastic.

All his joints were good. No systemic symptoms. Even the ferritin level

came back within the normal range. School started yesterday. He went in

looking so healthy and happy ... and had a great day. Was so happy to be

back in the old routine and get to hang out with all his friends. even

enjoyed doing his homework!

Then, this morning, he could barely get down the stairs. Even his long

shower didn't help. When he feels like this, we all seem to move a

little slower in the morning. Kayla didn't want to be late for school

though, on her second day back, so I sort of rushed things along, as

gently as I could. Getting dressed, having breakfast, taking meds,

fixing the children's hair... and off we went to the car, me rolling

Josh's backpack-on-wheels to speed things along a little bit.

Drove to the school, parked in front of the handicapped spot because

someone else was in it, got out and went around to the other side

because Josh needed help today with his seatbelt. Kayla jumped out and

after a hug and kiss was on her way, smiling, to her classroom. I

reached in to undo Josh's seatbelt for him and saw tear stains on his

cheeks. That makes me feel so sad. I asked him how he was doing and he

said not good at all. He was sore everywhere! He said he thought he had

a fever, too. He wanted to go lay down at the nurse's office. I helped

him out of the car and felt his forehead. Didn't feel too warm to me but

then again, I didn't want to accept that he could even have a fever

after doing so well the past month. He lifted up his shorts to show me

his thigh. Full blown JRA rash was back again! All splotchy and red. I

lifted his T-shirt up and there it was, covering his chest too.

I said let's just go see your teacher and drop off your backpack. Let's

at least let her know you're here at school but not feeling so good and

that you'll be back in class when you're feeling a little better, later.

Sometimes even when the mornings are really bad, Josh will start

improving and wind up feeling just fine again, in a couple of hours. We

walked past the health room and went on to his classroom. The teacher

immediately knew that he was not well. She said it was amazing how

things can change so suddenly, just overnight. She has regular RA, so

she's very understanding. She asked Josh how his joints were feeling and

he showed us his wrists. They were fine just yesterday but today, he has

major swelling/developing-nodules again and they are hot to touch. I let

her know that we'd stop at the nurse's to take Josh's temp, as I broke

our thermometer here at home and with Josh doing so well, we hadn't yet

needed to replace it. Well, the nurse took his temp and it kept climbing

higher and higher till it finally started beeping .... at 104.

So, our plans for the morning changed. I took Josh back home with me,

stopping first at Long's to buy a new thermometer. He was trying to

figure out why this happened and said maybe his wrists got swollen

because he hadn't been at school for almost a month and when he went

back yesterday he did more writing than he had for a long time. I really

don't know. Maybe that had something to do with his bent finger and

swollen wrists but it doesn't explain the high fever or rash. Meanwhile,

Josh is resting, sleeping on and off, here on the couch. I don't think

he'll be going back to school today. It's after 11:30 and there isn't

much improvement yet. Plus, Wednesday is their short day and they get

out at 1:15pm. So, we'll try again tomorrow (after Dr appt.) or Friday.

He really wanted to be at school today, as they get their report cards

and he loves seeing how well he's done. He thinks he made the Honor Roll

again. If so, that will cheer him up a bit

Sorry for such a long story. Some people can be so concise in just a few

words. I'll have to work harder on that But now you've got the full

story. Josh was doing really, really well. No pain or sore joints for a

long time, a month ... and now this again! But he'll be okay, I'm sure.

After taking it easy. I didn't even call his pediatrician, as his

rheumatologist is coming over tomorrow for the Maui JRA clinic and it's

probably better that we talk to him about this. Last month he said that

if Josh stayed stable for the next few weeks we might consider lowering

the prednisone dose. I hope this doesn't interfere with that. I'll let

you all know how it goes.

Aloha,

Georgina

---------------------------

January 13, 2000

Cheri,

My heart goes out to you I hope Tristin is doing better? I have

home

again because he woke up felling bad and has another flare. Does anyone out

there

whos child is sick with jra also notice that their childs eyes are very

sensitive to

sunlight of flouresent light?? Take care all.

Teena

January 13, 2000

Georgina,

Hello how is Josh doing? I sure hope that he is feeling much

better:)

Isn't it so weird how they can be ok then just over nite get sick I know I've

got

home he was fine last nite then during the nite he became ill again.

Everytime

he gets sick I get scared because this time last year he was hospitalized due

to his jra and that is truely scarey! It sounds to me like Josh is a real

trooper like

my derek he hates missing school and there are many times when he does go

and he is not feeling to good he says " Oh mom I will be ok " . I hope he will be

well enough to go to basketball camp this weekend coming up well see, he

really

likes sports but, I'am very cautious! but that's a mom you get worried

everytime

they catch a cold. Take care:)

Teena

January 13, 2000

Dearest Georgina:

I am really sorry to hear that Josh is not doing so well. I hope by today he

is feeling much better. I hate this sneaky illness, it always creeps up on the

poor kids when least expected. But I am sure he will overcome this flare just

like he has done in the past. But I know how frustrating it can become. I am

so proud of Josh for being such an incredibly good student. He is such a jewel

and I am sure he must be making you proud too. Please congradulate him on my

behalf for being such a good and honarable student. You guies are in my

prayers. Please take care and I look forward to hearing from you that Josh is

doing much better.

Sincerely,

Afsi

January 13, 2000

Georgina,

I am really sorry to hear that Josh is flaring again and I hope he improves

very soon.

Here is a small photo of Damien from Xmas (he likes to be called Kipper now

for some reason). I know I shouldn't really post this to the list, but it is

only 16Kb, and I reckon some of your longer emails must easily take up that

much space ;-)

Best Wishes,

Oliver

Josh's Update

> From: Georgina <gmckin@...>

>

> Hello everyone,

>

> I hope things are still going in the right direction, health-wise, for

> those whose children are doing well. It's reassuring to hear how others

> have gone through so much and then had periods of feeling well, at last.

> I was so overjoyed at how well Josh was doing. This was the best xmas

> season he's had in 3 years time. The notorious winter-time flare,

> unrelated to any changes in weather around here, was over more quickly

> than usual. His visit last month with the rheumatologist went fantastic.

> All his joints were good. No systemic symptoms. Even the ferritin level

> came back within the normal range. School started yesterday. He went in

> looking so healthy and happy ... and had a great day. Was so happy to be

> back in the old routine and get to hang out with all his friends. even

> enjoyed doing his homework!

>

> Then, this morning, he could barely get down the stairs. Even his long

> shower didn't help. When he feels like this, we all seem to move a

> little slower in the morning. Kayla didn't want to be late for school

> though, on her second day back, so I sort of rushed things along, as

> gently as I could. Getting dressed, having breakfast, taking meds,

> fixing the children's hair... and off we went to the car, me rolling

> Josh's backpack-on-wheels to speed things along a little bit.

>

> Drove to the school, parked in front of the handicapped spot because

> someone else was in it, got out and went around to the other side

> because Josh needed help today with his seatbelt. Kayla jumped out and

> after a hug and kiss was on her way, smiling, to her classroom. I

> reached in to undo Josh's seatbelt for him and saw tear stains on his

> cheeks. That makes me feel so sad. I asked him how he was doing and he

> said not good at all. He was sore everywhere! He said he thought he had

> a fever, too. He wanted to go lay down at the nurse's office. I helped

> him out of the car and felt his forehead. Didn't feel too warm to me but

> then again, I didn't want to accept that he could even have a fever

> after doing so well the past month. He lifted up his shorts to show me

> his thigh. Full blown JRA rash was back again! All splotchy and red. I

> lifted his T-shirt up and there it was, covering his chest too.

>

> I said let's just go see your teacher and drop off your backpack. Let's

> at least let her know you're here at school but not feeling so good and

> that you'll be back in class when you're feeling a little better, later.

> Sometimes even when the mornings are really bad, Josh will start

> improving and wind up feeling just fine again, in a couple of hours. We

> walked past the health room and went on to his classroom. The teacher

> immediately knew that he was not well. She said it was amazing how

> things can change so suddenly, just overnight. She has regular RA, so

> she's very understanding. She asked Josh how his joints were feeling and

> he showed us his wrists. They were fine just yesterday but today, he has

> major swelling/developing-nodules again and they are hot to touch. I let

> her know that we'd stop at the nurse's to take Josh's temp, as I broke

> our thermometer here at home and with Josh doing so well, we hadn't yet

> needed to replace it. Well, the nurse took his temp and it kept climbing

> higher and higher till it finally started beeping .... at 104.

>

> So, our plans for the morning changed. I took Josh back home with me,

> stopping first at Long's to buy a new thermometer. He was trying to

> figure out why this happened and said maybe his wrists got swollen

> because he hadn't been at school for almost a month and when he went

> back yesterday he did more writing than he had for a long time. I really

> don't know. Maybe that had something to do with his bent finger and

> swollen wrists but it doesn't explain the high fever or rash. Meanwhile,

> Josh is resting, sleeping on and off, here on the couch. I don't think

> he'll be going back to school today. It's after 11:30 and there isn't

> much improvement yet. Plus, Wednesday is their short day and they get

> out at 1:15pm. So, we'll try again tomorrow (after Dr appt.) or Friday.

> He really wanted to be at school today, as they get their report cards

> and he loves seeing how well he's done. He thinks he made the Honor Roll

> again. If so, that will cheer him up a bit

>

> Sorry for such a long story. Some people can be so concise in just a few

> words. I'll have to work harder on that But now you've got the full

> story. Josh was doing really, really well. No pain or sore joints for a

> long time, a month ... and now this again! But he'll be okay, I'm sure.

> After taking it easy. I didn't even call his pediatrician, as his

> rheumatologist is coming over tomorrow for the Maui JRA clinic and it's

> probably better that we talk to him about this. Last month he said that

> if Josh stayed stable for the next few weeks we might consider lowering

> the prednisone dose. I hope this doesn't interfere with that. I'll let

> you all know how it goes.

>

> Aloha,

> Georgina

>

> ---------------------------

January 13, 2000

Oliver,

Damien is so cute! Thanks for sharing with us. Janet