(No subject)

[Guest guest]

Hi Georgina,

This morning Diego was very bad... He screamed for the pain... Now he is

sleeping because he had a bad night (and us too). He take his pred to 8am

(10mg) and 2pm (5mg), but now we advance the dose of the morning, but the

pain didn't stop. We gave him it at 5am.

He sweat a lot but he doesn't have fever. I can't explain this.

My husband called to the doctor this morning and said that this pain isn't

natural of Still, maybe it is a bad posture in the night... I don't know.

I'm at work in this moment and I'll call to home to speak a little with

Diego.

Take care (sorry for the english)

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

[Guest guest]

Hi Deanna,

I'm really sorry that it's taken me so long to sit down and write back.

Things have been a little crazy around here, lately. These flares often

seem to catch me off guard and all of our schedules get a little mixed

up, in the process. I'm sure you know how that goes :-)

It sounds like your daughter has had more than her share of ups

and downs. It amazes me that all they gave her for four years was an

NSAID! I really thought that most doctors these days believed in

treating this disease more aggressively no than they used to!

You know, instead of just trying to lessen the symptoms, they usually

try to actually stop the disease process, by prescribing DMARDS like

methotrexate and hydroxychloroquine (plaquinel). It sounds like the

latest doctor knows what he's talking about and really wants to help, by

wanting to try Enbrel. I just hope that she hasn't had too much

deterioration of her joints, now that so much time has passed already.

Hopefully, it will all work out okay. When you see the doctor again, let

us know what he says. Since you didn't mention fevers and such, I'm

wondering if your daughter has pauci or poly articular arthritis and not

the systemic? Just curious?

Well, I'm off again, back to Josh's school. I'll write more when we get

more settled.

I hope all is well!

Take Care,

Georgina

[Guest guest]

I haven't been dreaming for quite some time now, and I use to dream every

night.Does know if there is any reason for this, Chris

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

[Guest guest]

Hi Georgina,

Alecia has the same problem with her teeth.No room for the adult teeth they

are all crowed and some are growing in back of other teeth i am going to take

her to an orthodontist when they all come in to see if he or she can figure

something out(I hope)

It looks like there could be problems if they stay that way ya know.

She seems to be doing ok so far i didn't give her the methotrexate this past

Saturday i don't want her to go through any unnecessary discomfort.She is

already in enough pain as it is.I guess we just have to see what comes next i

am always sitting on the edge of my seat with this illness waiting for it's

next move.

I am sorry to hear that Josh isn' t feeling well! Is he feeling any better

yet?

I got snow here to you definitely don't miss it very messy stuff.LOL

Well hope this letter finds everyone in good spirits

[Guest guest]

Hi Jeanette and all to the list,

I'm very grateful for all of you that sent me words of support. This thing

help me very much. I'm receiving much support for my friends and family here

and this help a lot too. Dieguito is fine at this moment, the hemorrhage is

controlled but he need additional test to observe better his condition. His

plaquettes are very low and he can catch an infection quickly. In this week

we should have some answer of the doctors and I tell you that it happens

Georgina, I don't tell you but I'm very glad for you for the interview to

the magazine

Kisses for all

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

Dear ,

I have also been talking to Georgina as my friend's little

boy Ben is in

the same position as Diego and Josh. Ben is 9 years old and lives in the

Glasshouse Mountains in Queensland.I just wanted to say to you that you are

doing very well and being very brave and that lots of people are praying

for Diego to be well soon. I've got four kids who have luckily all been

well. is 21 and just completed his Batchelor of journalism, Hallie

is 19 and studying environmental science at University, Lachlan is 16 and

in year 11 at High School and Kirk is 10 and in year 5. He was very sad to

hear that Diego was so sick as he saw your email to Georgina, and said he

hopes he is better soon.We live at Callala Bay which is on Jervis Bay on

the south coast of NSW.Anyway look after yourself and Diego.

All the Best

Jen

[Guest guest]

Hi Kim,

Our son Elliot was diagnosed with systemic onset JRA when he was 22 months

old. He is 5 now. Elliot was a late talker and also couldn't tell us what was

wrong but he refused to bear weight when he woke up from his nap- when he

finally would walk he limped. This came at the end of a week of high fever

and rash. Our Pediatric Rheum. was aggressive at the beginning and put Elliot

on naproxyn but was monitoring him every one to two weeks by way of blood

tests and checking his range of motion. I played with the naproxyn by

dividing up the total daily dose over the course of the day -adjusting the

time to correlate with when his fever would spike, waking up at odd hours to

give Elliot his dose but it wasn't enough. After playing with quantity and

interval of naproxyn Elliot began taking prednisone.

If your daughter is not responding well-don't wait one month before visiting

or talking to the Dr. Maybe you can try playng with the timing or amount of

naproxyn.

The purpose of splints is to prevent loss of motion. When a child has joint

pain they may not fully flex or extend the limb resulting in contracture of

the joint. It's not a permanent thing but a preventive measure.

Steroid injection into the joint may or may not be effective depending on how

active the JRA is.

Getting back to what I was writing earlier the Dr. was seeing Elliot every

other week initially and when he stabilized we got to a monthly routine. Even

then I remember Elliot having a very bad night and he told us to come in.

I think it is important to be aggressive so that you can get your daughter

pain free so she can resume functional activites-which is the best exercise .

I hope all goes well.

Rena

[Guest guest]

Hi Kim,

I sure hope some of the recent emails haven't scared you. Though there's

still no cure for JRA, there are lots of different treatments. And a lot

of times they work really well to help control this illness. JRA

symptoms can range from being very mild to severe. JRA can affect just

one joint or many. The systemic type can affect other organs as well,

causing fevers, rash and inflammation all over. It's different for each

person and can change over time. With proper treatment JRA can be

controlled ... and the children often times won't have any outward

symptoms at all.

I think it's great that your doctors are at least exploring the

possibility of JRA. In the past, it used to go untreated for long

periods and there was greater chance of joint damage occurring. If it is

JRA and you catch it early on, you may be able to prevent this from

happening. Or at least slow it down. Has your daughter seen a

rheumatologist or just her pediatrician? A rheumatologist would probably

be better qualified to treat her and have more knowledge and experience.

Naprocyn was one of the first meds they prescribed for my son josh.

Unfortunately, it didn't do a darn thing for him. Didn't stop the fevers

or help the inflammation or pain much, either. When they tried another

NSAID, indomethacin, we saw a positive difference.

He also needed other meds too but your daughter may not. If your

daughter does in fact have JRA and the NSAID's alone don't give enough

effect, they may mention trying methotrexate. It's more commonly being

prescribed earlier in the treatment plan and often has very good

results. I guess the doctors will talk more about these kinds of options

when you see them next month. If she seems to be in a lot of pain still,

or any other symptoms get worse, you might want to call them earlier.

They'll probably be very glad to be informed of her progress or lack of

progress.

My son hasn't used leg splints. He's needed them for both his wrists,

though. Sometimes during the night, most times during waking hours. Josh

has never had steroid injections into his joints. He's needed to take

them orally though, to help control the systemic symptoms. Others here

can offer their personal experiences and that might help a little.

Try not to feel too pressured by concerned family members and friends.

They want to understand this better and know what they can do to help.

It's a great feeling to know that you have supportive people close by

but sometimes this illness can be very hard to understand. Sometimes

everything seems just fine and without warning, things can take a turn

for the worse. Or vice versa. I think it gets easier to deal with over

time but it can still be stressful when unexpected things pop up. You

really have to take things one day at a time and learn to be ready for

whatever comes up, while appreciating those periods when everything is

going really well.

We're here for you, whenever you need some cyber support. Anytime you

have worries or questions, just send a note. I'm sure you'll get

responses from those of us who have already been there and done that.

Let us know how everything's going, okay?

Aloha,

Georgina

Squirt324@... wrote:

> Hi all,

> Even though I have been lurking in the background reading all your

> emails, I am not sure I am right for this list. I feel as though my

> situation with my daughter is less severe and more unsure than all of yours.

> But I am also interested in asking some questions that maybe some of you

> might know.

> A little background history- My name is Kim and my husband Jay and I have

> a 18 month old daughter Casey. She is our only and has been prematurely

> diagnosed with JRA-although they are still not sure to what degree she has

> it. She only has it in her knee, but she cannot even sit up or stand up in

> her crib. She went from being an extremely active child (running, playing,

> climbing stairs and talking to people) to hardly walking, demanding to be

> carried, and leery of everyone including my husband. It wasn't until last

> Monday we found out she was in so much pain. She also weighs a mere 18 lb.

> and we are seeing a Specialist about her weight as well. From reading your

> emails, it seems this is fairly common with Kids with JRA.

> She has been put on Naprosyn, fairly high doses compared to out Motrin

> treatment before the diagnosis. I know this doesn't seem as severe as

> others. She had been on this for a week and at first it seemed to help, but

> now she is back to her old ways - swollen knee, no appetite, and extremely

> cranky. So my first question is- how long should it take, being on meds

> every day, for the swelling to diminish?

> Now we wait, we have an appointment in a month, and then they will decide

> if this med works, if she needs a splint (any feelings about this?) at night,

> and steroid injections into the knee (good? bad?).

> I just don't know where this falls in severity category since they

> haven't even given us a full diagnosis. I feel a lot of pressure from family

> and friends to understand this better. Since, she is first grandchild,

> niece, and we are the first of our friends to have children, every one is

> extremely caring. Which is great, but they want answers I cannot give.

> Since she is so young, I am having a hard time, because she cannot tell

> me if this is a good day or a bad day. Reading all of your emails is very

> interesting to me, and is helping me a lot. If anyone has any insights for

> me, I would greatly appreciate it.

> Kim

[Guest guest]

Hi Kim,

I hope I did not scare you..... I was just amazed at how similar our

children are. Mandy has also gone through periods where she is totally pain

free. Some children have been known to grow out of JRA. Several times I

thought she was, as she could run circles around her brother...... Once

again, I do hope I did not scare you in any way. Take care, Janet

Re: [ ] (no subject)

> From: Georgina <gmckin@...>

>

>

> Hi Kim,

>

> I sure hope some of the recent emails haven't scared you. Though there's

> still no cure for JRA, there are lots of different treatments. And a lot

> of times they work really well to help control this illness. JRA

> symptoms can range from being very mild to severe. JRA can affect just

> one joint or many. The systemic type can affect other organs as well,

> causing fevers, rash and inflammation all over. It's different for each

> person and can change over time. With proper treatment JRA can be

> controlled ... and the children often times won't have any outward

> symptoms at all.

>

> I think it's great that your doctors are at least exploring the

> possibility of JRA. In the past, it used to go untreated for long

> periods and there was greater chance of joint damage occurring. If it is

> JRA and you catch it early on, you may be able to prevent this from

> happening. Or at least slow it down. Has your daughter seen a

> rheumatologist or just her pediatrician? A rheumatologist would probably

> be better qualified to treat her and have more knowledge and experience.

>

> Naprocyn was one of the first meds they prescribed for my son josh.

> Unfortunately, it didn't do a darn thing for him. Didn't stop the fevers

> or help the inflammation or pain much, either. When they tried another

> NSAID, indomethacin, we saw a positive difference.

> He also needed other meds too but your daughter may not. If your

> daughter does in fact have JRA and the NSAID's alone don't give enough

> effect, they may mention trying methotrexate. It's more commonly being

> prescribed earlier in the treatment plan and often has very good

> results. I guess the doctors will talk more about these kinds of options

> when you see them next month. If she seems to be in a lot of pain still,

> or any other symptoms get worse, you might want to call them earlier.

> They'll probably be very glad to be informed of her progress or lack of

> progress.

>

> My son hasn't used leg splints. He's needed them for both his wrists,

> though. Sometimes during the night, most times during waking hours. Josh

> has never had steroid injections into his joints. He's needed to take

> them orally though, to help control the systemic symptoms. Others here

> can offer their personal experiences and that might help a little.

>

> Try not to feel too pressured by concerned family members and friends.

> They want to understand this better and know what they can do to help.

> It's a great feeling to know that you have supportive people close by

> but sometimes this illness can be very hard to understand. Sometimes

> everything seems just fine and without warning, things can take a turn

> for the worse. Or vice versa. I think it gets easier to deal with over

> time but it can still be stressful when unexpected things pop up. You

> really have to take things one day at a time and learn to be ready for

> whatever comes up, while appreciating those periods when everything is

> going really well.

>

> We're here for you, whenever you need some cyber support. Anytime you

> have worries or questions, just send a note. I'm sure you'll get

> responses from those of us who have already been there and done that.

> Let us know how everything's going, okay?

>

> Aloha,

> Georgina

>

> Squirt324@... wrote:

>

> > Hi all,

> > Even though I have been lurking in the background reading all your

> > emails, I am not sure I am right for this list. I feel as though my

> > situation with my daughter is less severe and more unsure than all of

yours.

> > But I am also interested in asking some questions that maybe some of you

> > might know.

> > A little background history- My name is Kim and my husband Jay and I

have

> > a 18 month old daughter Casey. She is our only and has been prematurely

> > diagnosed with JRA-although they are still not sure to what degree she

has

> > it. She only has it in her knee, but she cannot even sit up or stand up

in

> > her crib. She went from being an extremely active child (running,

playing,

> > climbing stairs and talking to people) to hardly walking, demanding to

be

> > carried, and leery of everyone including my husband. It wasn't until

last

> > Monday we found out she was in so much pain. She also weighs a mere 18

lb.

> > and we are seeing a Specialist about her weight as well. From reading

your

> > emails, it seems this is fairly common with Kids with JRA.

> > She has been put on Naprosyn, fairly high doses compared to out

Motrin

> > treatment before the diagnosis. I know this doesn't seem as severe as

> > others. She had been on this for a week and at first it seemed to help,

but

> > now she is back to her old ways - swollen knee, no appetite, and

extremely

> > cranky. So my first question is- how long should it take, being on meds

> > every day, for the swelling to diminish?

> > Now we wait, we have an appointment in a month, and then they will

decide

> > if this med works, if she needs a splint (any feelings about this?) at

night,

> > and steroid injections into the knee (good? bad?).

> > I just don't know where this falls in severity category since they

> > haven't even given us a full diagnosis. I feel a lot of pressure from

family

> > and friends to understand this better. Since, she is first grandchild,

> > niece, and we are the first of our friends to have children, every one

is

> > extremely caring. Which is great, but they want answers I cannot give.

> > Since she is so young, I am having a hard time, because she cannot

tell

> > me if this is a good day or a bad day. Reading all of your emails is

very

> > interesting to me, and is helping me a lot. If anyone has any insights

for

> > me, I would greatly appreciate it.

> > Kim

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Dear Kim:

My daughter Sara was also 18 months when she was diagnosed. Her problems

started when she turned 15 months. She also used to be a very active child and

she would climb up everything (the couch, her stroller, etc). All of the

sudden, she became less active and started not walking properly and if I took

her out of her high chair she would not be able to stand up. We kept thinking

that may be she had fallen and hurt her ankle or knee. Also, her left index

finger had become swollen when she had turned 1 year old. That's why we kept

taking her to different orthopedic doctors and they could not see anything wrong

with her index finger or ankles or knees. They would not even notic the

swelling. Until one of the orthopedic doctors (God bless his heart) told us to

go see a pediatric rhuematologist since he did not see anything wrong with her

bones. In the meanwhile, our pediatricians kept thinking that she had

behavioral problems since she would not want to eat and she always wanted to be

carried around. So finally, I asked the pediatrician to do an extensive blood

test (CBC w/ diff, platelets, sed rate, ANA, etc.) on her. The blood work

showed high sed rate (in the 30s range), high white blood count and positive

ANA. At this point we were reffered to a pediatric rhuematologist and by

examining her, he said that she had pauciarticular JRA and he put her on Advil

and he said he wanted to see her in two weeks. We did not stop at this point

for we wanted to get a 2nd opinion. So, we saw another rhuematologist and since

we wanted to rule out other malignancies we did a bone scan on her which showed

arthritic activities around her wrists, ankles, and knees (my poor baby). The

2nd rhuematologist wanted to put her on Naproxyn. But neither Naroxyn nor Advil

took her pain away totally. That is why she was placed on Prelone (prednisone)

for six months. In the meanwhile, in conjunction with predinisone and naproxyn

they started on Methotrexate (5 mg per week). She has been off of prednisone

since August of 98 and off of Naproxyn since Nov 98 (since she developed

internal bleeding). We have been very lucky in that she has been able to do

well on Methotrexate and she has no signs of pain anywhere. The only place

where she has swelling is her index finger, but even that has diminished alot.

So righ now she acts and looks very normal and she is only on Methotrextate.

Personally, I think the key in treating JRA is to treat it aggressively and

early before it can cause any damages to the joints. If I were you, I would not

wait a month to see the dr especially if Casey is not being very responsive to

Naproxyn. May be prednisone would be the next step or even Methotrexate. Also,

I think it is very important to rule out a lot of other diseases that can mimick

JRA symptoms and have a defenite diagnosis so that you are not going around in

circles. I hope this helps you out and that you will be able to get a firm

diagnosis on your daughter so that proper treatment can be started as early as

possible. That is the most important thing (I think). Good luck and I hope

Casey starts feeling better soon. Take care......

Squirt324@... on 11/04/99 07:33:49 PM

Please respond to onelist

onelist

cc: (bcc: Afsi Goodarzpoor/C/Fairfax/Mobil-Notes)

Subject: [ ] (no subject)

From: Squirt324@...

Hi all,

Even though I have been lurking in the background reading all your

emails, I am not sure I am right for this list. I feel as though my

situation with my daughter is less severe and more unsure than all of yours.

But I am also interested in asking some questions that maybe some of you

might know.

A little background history- My name is Kim and my husband Jay and I have

a 18 month old daughter Casey. She is our only and has been prematurely

diagnosed with JRA-although they are still not sure to what degree she has

it. She only has it in her knee, but she cannot even sit up or stand up in

her crib. She went from being an extremely active child (running, playing,

climbing stairs and talking to people) to hardly walking, demanding to be

carried, and leery of everyone including my husband. It wasn't until last

Monday we found out she was in so much pain. She also weighs a mere 18 lb.

and we are seeing a Specialist about her weight as well. From reading your

emails, it seems this is fairly common with Kids with JRA.

She has been put on Naprosyn, fairly high doses compared to out Motrin

treatment before the diagnosis. I know this doesn't seem as severe as

others. She had been on this for a week and at first it seemed to help, but

now she is back to her old ways - swollen knee, no appetite, and extremely

cranky. So my first question is- how long should it take, being on meds

every day, for the swelling to diminish?

Now we wait, we have an appointment in a month, and then they will decide

if this med works, if she needs a splint (any feelings about this?) at night,

and steroid injections into the knee (good? bad?).

I just don't know where this falls in severity category since they

haven't even given us a full diagnosis. I feel a lot of pressure from family

and friends to understand this better. Since, she is first grandchild,

niece, and we are the first of our friends to have children, every one is

extremely caring. Which is great, but they want answers I cannot give.

Since she is so young, I am having a hard time, because she cannot tell

me if this is a good day or a bad day. Reading all of your emails is very

interesting to me, and is helping me a lot. If anyone has any insights for

me, I would greatly appreciate it.

Kim

Visit my homepage for a list of sites with info on childhood arthritis:

http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Rena,

Thank you. I think that the playing with doses is a good idea. We are

supposed to be giving it to her 3 times a day, but her last dose is at 6:30pm

right before bed...she wakes at 11 or 12 and is in pain. I am going to try

that.

Also, thank you for telling me to call the doc. i have this weird

tendancy to think i am overreactiing.

Kim

[Guest guest]

Georgina,

Thanks for listening...reading?

We took Casey to Children's Memorial in Chicago and saw a rheumatologist.

I have sever asthma and allergies...which he found to be very common in

family med history with JRA and he also got very excited when he asked about

Manic depression links. I have an uncle who is a manic depressive at it's

most severe stage- he has been hospitalized for 40 years. Our doc told us

that they find this link common and don't know why...interesting huh?

Anyway, I am going to call casey's specialist tomorrow- thank you.

Kim

[Guest guest]

Janet,

No you did not scare me...I know what it might become. The whole reason i

joined was to be more informed and to know what might happen. that way I

could make informed decisions, with my hubby, and not let the doctors be

intimidating to me. I feel that this is the best use of the internet there

is. Don't you?

Kim

[Guest guest]

In a message dated 11/6/99 5:13:11 PM Eastern Standard Time, gmckin@...

writes:

<< He has

had pericarditis in the past, where the sac surrounding the heart gets

inflamed. >>

Ow ... I've had that too. I spent a bit of time in the ICU for it, more than

a few years ago. But my mom STILL hauls me to the emergency room every time

I'm a little short of breath. It's a mom thing. <g>

cheers

Jenni

[Guest guest]

Hi Kim,

I think that every single one of us parents here has felt at one time or

another that we might be over-reacting. And has questioned whether or

not this latest episode is something that needs the attention of a

medical professional. I've heard that so many times ... and felt exactly

the same way, myself, more than once :-) Even after a few years when you

think there will be no more surprises and by now you know well enough

how to handle anything that comes up, there's still the chance that

something will happen that you're not quite sure what to do about.

A recent example was about two months ago, when Josh started having

chest pains. It was a weekend. Doctors had already left, as it was early

evening. I thought, hmmm... if we wait it out it may just go away. I

tried applying a warm washcloth, having him lie still. Didn't help much.

Then, he started hyperventilating. He had never done that before! He has

had pericarditis in the past, where the sac surrounding the heart gets

inflamed. And he's had pleurisy, where he gets tightness and pain in his

chest/lung area. But he didn't have any other symptoms. He started

crying and said he needed to see the doctor. I was nervous. He usually

doesn't ever suggest that he needs to see them. And balks sometimes,

when they say bring him in and he doesn't feel like going. So this was

different. I called a nurse, to see what she thought. She convinced me

to bring him to the hospital right away, instead of waiting till the

morning to see a doctor where we usually go. Well, turned out it was

what they call costeochondritis. Spelling is off, I'm sure. They took

xrays first to see if he had any hurt ribs. His heart was racing a bit

but he was going to be okay. It's like an inflammation in the

rib/sternum area. I was so glad it wasn't his heart. They gave him some

tylenol with codeine and that helped a lot.

Okay. Thinking about it, that wasn't such a good example. There have

been other times when it wasn't as severe symptoms. Borderline. Just a

fever, achiness, some stiff joints. Sort of the regular kind of

arthritic symptoms. But they prefer to see him. Just in case. I guess

they figure with the medicines he's taking, he shouldn't really be

having any of those kinds of symptoms, unless something is going on.

I've told them I sometimes feel sort of like a hypochondriac. And Josh's

medical records are getting so thick. But it's better to be safe than

sorry!

Take care,

Georgina

Squirt324@... wrote:

> Rena,

> Thank you. I think that the playing with doses is a good idea. We are

> supposed to be giving it to her 3 times a day, but her last dose is at 6:30pm

> right before bed...she wakes at 11 or 12 and is in pain. I am going to try

> that.

> Also, thank you for telling me to call the doc. i have this weird

> tendancy to think i am overreactiing.

> Kim

[Guest guest]

Oh, Janet! And here I thought that maybe it was some of my stories that

might have scared Kim :-) These kids, when being treated correctly, can

be in great shape for long periods of time. It's just these darn flares,

that when they come along seem to turn the whole world upside down.

Take care,

Georgina

> From: " Janet & Gilbert Moyer " <gjam@...>

> Hi Kim,

>

> I hope I did not scare you..... I was just amazed at how similar our

> children are. Mandy has also gone through periods where she is totally pain

> free. Some children have been known to grow out of JRA. Several times I

> thought she was, as she could run circles around her brother...... Once

> again, I do hope I did not scare you in any way. Take care, Janet

>

> ----- Original Message -----

> > From: Georgina <gmckin@...>

> > Hi Kim,

> >

> > I sure hope some of the recent emails haven't scared you. Though there's

> > still no cure for JRA, there are lots of different treatments. And a lot

> > of times they work really well to help control this illness. JRA

> > symptoms can range from being very mild to severe. JRA can affect just

> > one joint or many. The systemic type can affect other organs as well,

> > causing fevers, rash and inflammation all over. It's different for each

> > person and can change over time. With proper treatment JRA can be

> > controlled ... and the children often times won't have any outward

> > symptoms at all.

> >

> > I think it's great that your doctors are at least exploring the

> > possibility of JRA. In the past, it used to go untreated for long

> > periods and there was greater chance of joint damage occurring. If it is

> > JRA and you catch it early on, you may be able to prevent this from

> > happening. Or at least slow it down. Has your daughter seen a

> > rheumatologist or just her pediatrician? A rheumatologist would probably

> > be better qualified to treat her and have more knowledge and experience.

> >

> > Naprocyn was one of the first meds they prescribed for my son josh.

> > Unfortunately, it didn't do a darn thing for him. Didn't stop the fevers

> > or help the inflammation or pain much, either. When they tried another

> > NSAID, indomethacin, we saw a positive difference.

> > He also needed other meds too but your daughter may not. If your

> > daughter does in fact have JRA and the NSAID's alone don't give enough

> > effect, they may mention trying methotrexate. It's more commonly being

> > prescribed earlier in the treatment plan and often has very good

> > results. I guess the doctors will talk more about these kinds of options

> > when you see them next month. If she seems to be in a lot of pain still,

> > or any other symptoms get worse, you might want to call them earlier.

> > They'll probably be very glad to be informed of her progress or lack of

> > progress.

> >

> > My son hasn't used leg splints. He's needed them for both his wrists,

> > though. Sometimes during the night, most times during waking hours. Josh

> > has never had steroid injections into his joints. He's needed to take

> > them orally though, to help control the systemic symptoms. Others here

> > can offer their personal experiences and that might help a little.

> >

> > Try not to feel too pressured by concerned family members and friends.

> > They want to understand this better and know what they can do to help.

> > It's a great feeling to know that you have supportive people close by

> > but sometimes this illness can be very hard to understand. Sometimes

> > everything seems just fine and without warning, things can take a turn

> > for the worse. Or vice versa. I think it gets easier to deal with over

> > time but it can still be stressful when unexpected things pop up. You

> > really have to take things one day at a time and learn to be ready for

> > whatever comes up, while appreciating those periods when everything is

> > going really well.

> >

> > We're here for you, whenever you need some cyber support. Anytime you

> > have worries or questions, just send a note. I'm sure you'll get

> > responses from those of us who have already been there and done that.

> > Let us know how everything's going, okay?

> >

> > Aloha,

> > Georgina

> >

[Guest guest]

RenaPT@... wrote:

> I think it is important to be aggressive so that you can get your daughter

> pain free so she can resume functional activites-which is the best exercise .

Hi Rena,

That was so very well said. When our children's arthritis is being

controlled well, they are often playing and running and skipping again,

and moving all of their joints in the usual manner. Getting the needed

exercise. When we notice that this isn't so, it's usually because the

disease is active again and we have to work on what can be done to help

get it under control again.

Take care,

Georgina

[Guest guest]

Hi Kim,

Yes! This is very interesting, indeed! I'm not sure how it might play a

part in my son's JRA as there is no known family history (maternal or

paternal) of either asthma or allergies but ~although never diagnosed or

treated~ I have had suspicions about my mother possibly suffering from

some form of manic depression. If you ever come across any more info on

this possible conncetion, please do share it with us.

Thanks,

Georgina

> From: Squirt324@...

>

> Georgina,

> Thanks for listening...reading?

> We took Casey to Children's Memorial in Chicago and saw a rheumatologist.

> I have sever asthma and allergies...which he found to be very common in

> family med history with JRA and he also got very excited when he asked about

> Manic depression links. I have an uncle who is a manic depressive at it's

> most severe stage- he has been hospitalized for 40 years. Our doc told us

> that they find this link common and don't know why...interesting huh?

> Anyway, I am going to call casey's specialist tomorrow- thank you.

> Kim

>

[Guest guest]

Hi Jenni,

Yup. I guess it is :-) But only 'cause we love you so much!

Please forgive the sometimes overly active maternal instincts!

Aloha,

Georgina

ChaosPearl@... wrote:

> In a message dated 11/6/99 5:13:11 PM Eastern Standard Time, gmckin@...

> writes:

>

> << He has

> had pericarditis in the past, where the sac surrounding the heart gets

> inflamed. >>

>

> Ow ... I've had that too. I spent a bit of time in the ICU for it, more than

> a few years ago. But my mom STILL hauls me to the emergency room every time

> I'm a little short of breath. It's a mom thing. <g>

>

> cheers

> Jenni

[Guest guest]

I don't know if it's connected b 's Great Uncle was manic for a while

and also My husband's cousin's granddaughter has sojra. Each on different

sides of the family. they both seem rather far off to be related, but who

knows.

[Guest guest]

>

> > Subject: FW: FW: missing child please take the time

> > > >

> > > > missing child please take the time

> > > > > > > >

> > > > > > > > >>>This is an important one, please take the time to look

> > at

> > > > the

> > > > > picture

> > > > > > > > >>>and pass it on.. thanks, sandra

> > > > > > > > >>>

> > > > > > > > >>>I am asking you all, begging you, to please forward

> > this

> > > > email on

> > > > >

> > > > > to

> > > > > > > > >>>anyone and everyone. As most all of you know, I have a

> > 5

> > > > year

> > > > > old

> > > > > > > > >>>daughter named Kelsey . We are from

> > Southern

> > > > > Minnesota.

> > > > > > > > >>>She has been missing since 4pm Oct.11, 1999. The

> > police

> > > > were

> > > > > > notified

> > > > > > > > >>>shortly after. If anyone

> > > > > > > >

> > > > > > > > >>>anywhere knows anything, sees anything, pleeeeaaaase

> > > > contact me

> > > > > if

> > > > > > you

> > > > > > > > >>>have my number. The police don't recommend I put my

> > number

> > > > > online,

> > > > > > but

> > > > > > > > >>>you can contact the Police, a missing persons report

> > has

> > > > been

> > > > > filed.

> > > > > > I

> > > > > > > > >>>am including a picture of her.

> > > > > > > > >>>All prayers are appreciated!!

> > > > > > > > >>>

> > > > > > > > >>>Thank you, Amy

> > > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> >

> > Bethany Largent

> > Sikeston Kindergarten Center

> > 1310 East Salcedo Road

> > Sikeston, MO 63801

> > (573)471-0653 <<SNAPSHOT.jpg>>

>

>

>

>

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

----

[Guest guest]

Kat,

Maybe I'm missing something (I've been breezing through posts lately) but

you've scheduled RAI for the end of this week and are still learning about

Graves disease AND have a doctor who has little experience with

hyperthyroidism?

Stop the process! Learn by searching through archives here. . . frankly, I

would never do RAI (and I think this is a popular sentiment on this list).

Learn about your options, including the option of following the supplement

list and other naturopathic remedies. 30-40% of Graves patients go into

remission without treatment. Why wouldn't you use alternative methods for a

while and see if you're one of that third?

(no subject)

> Hi Group,

>

> I am so thankful this group exists!...Oh and thank you for your

> encouragement! Approximately 3 weeks my P.A. ran blood tests to check my

TSH

> and discovered it were quite low. (He didn't give the number but I will

> ask). He had me go a second time for blood work because he couldn't

believe

> the numbers (now he has me really scared). Later on that next week I came

in

> and he ordered the RAI scan test for me and I am scheduled this Thursday

and

> Friday. He likened me to be his " guinea pig " as he had never seen anyone

as

> of yet that was hyper as opposed to hypo. By now I'm wondering what is

going

> on here?!!!! He did not explain what the RAI was all about and quite

frankly

> I am scared to go through with it. Can anyone help me here...?

>

> Kat

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/936/7/_/6563/_/953511865/

>

> -- 20 megs of disk space in your group's Document Vault

> -- docvault/hyperthyroidism/?m=1

>

>

>

[Guest guest]

- & All

The Chiropractor at " Bioluminetics " gave me a simple way to test how

hyper the thyroid is - get iodine from the px. paint a little on the thin

part in the crease in the elbow - check it in an hour - if it's gone - the

thyroid has pulled it in - if it lasts a long time the iodine level is

sufficient - and thyroid is not acting as " hyper. "

I'll try to get more infor on this.

Melinda

[Guest guest]

Hi Group,

I forgot to ask one more question from my last E-mail - I would like to start

right now on the supplements from 's list but would like to know if

anyone could suggest something to help strengthen my immune system. It

seems very weak and vulnerable to everything and anything. Thanks again!

Kat

[Guest guest]

Hi Kai,

Yes, has told me that is what happens to a lot of Hypers. You

start out hypo, then turn hyper. Isn't thyroiditis inflammation of the

thyroid causing it to produce more hormone resulting in temporary hyper

t. ? So, it sounds treatable. I guess it is ALL treatable.

Deb

[Guest guest]

Hi Kat;

Sorry if I sound like I'm " snapping back " but I felt my buttons being pushed

by your MD's replies. First of all, thyroiditis simply means " inflamed "

thyroid, itis meaning inflamed anything. I'm wondering how your MD palpated

your thyroid. My endo, if he ever touched mine at all does so with butterfly

wings, so to speak. " Regular " palpating of the thyroid sqqueex\zes more of

the hormone into your body, which if you're hyper T is the last thing you

want, and can even cause a thyroid storm. When you asked her about an ADT I

suspect if you'd mentioned PTU she would have told you your endo would

probably prescribe Tapazole. In my experience, MD's expressly don't like

" patients " to tell them what to do. i.e. asking about a specific drug sounds

like that's what you want whereas, they want to feel in charge. I agree tha

ASAP sure does not jive with waiting a month. ALmost all MD's can work

someone in sooner if they are asked real nicely by another MD especially. I

can't reply to your question about your numbers, I'd be more interested in

your symptoms. Mine were horrendus before my numbers went way wacky, or visa

versa. Your symptoms plus the numbers will guide your endo in prescribing to

" control " the thyroid plus symptoms. AND, you do not have to have RAI to

control them, ATD usually do a very good job, they just take a little while

to kick in, about three weeks.

As to your last question, the answer is a definite yes. In retrospect, I

realize that I was very hypo for many years before suddenly going hyper T.

Hang in, ask us lots of questions, and don't let the MD's rush you into

something you're not comfortable and knowledgable about. Sorry this got so

long.

Peace and Light,

'

(Lower case) NHBANDRNA@...