Re: Thank You all......

[Guest guest]

Hi ,

I thought i would give you my 2 cents as well..........My daughter is 7,

she has had systemic jra since she was 9 months old.......so " telling " her

she had arthritis didnt really occur to us in that way.......it was something

she just always had.......as far as how we talk to her about her arthritis,

we talk to her pretty straightforward, she for the most part is told by us

all that we know..........i kinda feel like that if you are open and sharing

with them, they in turn will be open and sharing with you. Holly doesn't hide

symptoms from me, she usually comes and tells me something hurts as if its no

bigger a deal, than what she is watching on television, or which book she

decided to read. In that way i think it is easier to provide them with the

best care, as a clear picture is always easier to paint. If you have any

questions, feel free to ask :-)

n

[Guest guest]

Hi :

Mickey, too, has had jra (systemic) since 3. It is maybe hard to know

exactly what or how much to tell them, but for us personally, we have

explained as much to Mickey as she wanted to know, which has been

everything. The scope of her questions and understanding has astounded us at

times... But what we have found is that the more she knows, the greater her

sense of having some " control " of the disease. She has definitely benefitted

from the truth, explained in simple terms of course. Do you get the " Magic

School Bus " show? It has been of tremendous help! In one episode, one of the

characters has a cold, and his classmates have a trip inside his body to see

how his body fights the cold. This is a good starting point. What we

explained to Mickey, is that even though the doctors don't know exactly what

causes the arthritis to start in some people, what happens is that the body

mistakenly starts fighting itself, working against itself. The drugs and

medicine Mickey has to take, keep her body's white cells (the mixed up ones)

from fighting in her own body... not explaining this nearly as well here as

we did for Mickey!!!! The drugs " put the arthritis to sleep " . The drugs

don't get rid of the arthritis, just keep it sleeping so it doesn't hurt

her. And that over time, if we do a good job of keeping the arthritis

asleep, there's a chance the mixed up cells will forget what they were

fighting about, and then she might be able to stop taking the medicine, and

still feel okay. Most of what we have explained goes along those lines.

Accurate information, scaled down in terms she can understand. Not sure I

understand it much better myself!

Having a basic understanding of how the body works, with a great deal of

help from the Magic School Bus, was definitely a good starting point. If

Halie is 6, going on 7, she can certainly understand. And I know that it has

helped her emotionally, to know as much as possible about the disease she is

afflicted with. It's her body, and a disease she may have her whole life...

she has a right to know, to have her questions answered. She knows the

proper names of all the drugs she takes, and what they are meant to do. She

knows the consequences of not taking them...

Maybe it sounds cruel, or bad parenting, but at one point about a year ago,

she refused to take her meds. I told her what was likely to happen

(increased pain, stiffness, etc) and she insisted it was her body, her right

to decide. So she went without her meds for a day... and spent 2 days in bed

unable to move without pain. I felt terrible, but she needed to know the

consequences of her decision... and we talked about it after and she agreed

that her body isn't ready to fight the arthritis on its own without help.

It's hard to explain, maybe, but I know with absolute certainty that knowing

as much as she does has helped Mickey to cope with her disease better. She

knows what she feels, she knows her body is different from her sister's -

she knows she has to take medicine and have needles and see doctors way more

often than other kids - " regular kids " , she calls them. To deny her the

knowledge of why she hurts when others don't, why she takes so many

medicines - it would be denying her intelligence and her right to respect.

Someday she is going to have to manage this disease herself - it is HER

body. She needs to have some input into decisions, even at this age. And of

course, she has asked, is she going to have arthritis forever, or will it go

away? - and we are honest with her too, in that nobody can answer that

question. There is a lot of uncertainty around this disease and we all have

to take it one day at a time. Again, to be less than completely honest with

her would, for us, be denying her right to respect, and her intelligence.

She has benefitted greatly from knowing we will answer her questions, even

when the answers are painful. She is wise and generous and empathetic beyond

her years, but still very much a " regular " child in her relationships with

her sister, and her peers.

Boy, have I rambled on. I asked her, as I wrote this, whether she thought a

kid has a right to know, was she glad or sorry to know all the details, and

she most emphatically asserted that it would be " way worse " to not know.

Good luck in your decision, only you and your husband can decide what is

right for your family, but for us, for Mickey, telling her the truth was the

best thing all around.

Lynn

From: mbvanert@...

Reply-

Date: Sat, 04 Aug 2001 04:38:41 -0000

Subject: Thank You all......

.......for the positive thoughts and prayers. Halie saw the

Ophthamologist today and checked out clear - Whew! Luckily, we have

been blessed with a brave and stoic child; she rarely complains of

her aches and pains and is a real trooper when it comes to Dr.

visits. As of now, we have not yet directly explained the extent or

the severity of her diagnosis (she was Dx'd 2 days ago) because my

husband and I have differing opinions on how to approach it. I

believe in being straitforward and completely honest about all of it

(she is 6 1/2) while my husband thinks that we should be less direct

in order to not cause her further distress. Does anyone have advice

on explaining all of this to her??? How did you handle this

situation with your children and what was the outcome???

(mother of Kate)- I am particularly interested in hearing

your story as our daughters are the same age (6 1/2) and both

Polyarticular. Halie, too, has had JRA since the age of 3 (although

undiagnosed). Her wrists, feet, hips, and neck seem to be most

affected. When you have the time, I would love to hear the details

and progress of Kates disease.

Will continue to keep you all updated as we begin the first leg of

our journey, and will keep you all in my prayers.

- mom to Halie, 6, Poly

To manage your subscription settings, please visit:

For links to websites about JRA:

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

[Guest guest]

Hi ,

I agree wholeheartedly with what Lynn said. There hasn't been anything

that I haven't shared with about his JRA. Whenever he's had any

questions I've always tried to answer them honestly, in an age

appropriate manner. Even if that meant saying, well, I really don't

know. I'd follow that up with saying, let's ask the doctor. Or lets find

out what others with JRA have had happen, like children in the group.

Like Lynn said (so eloquently) I think having as much knowledge about it

as they need at any given time allows them to have a sense of control

over the processes and I believe it helps with compliance. They may need

lots of meds, lots of doctor visits .... I think they need to understand

why.

Just asked ... and he says parents " should explain everything

about JRA to their kids. That way they can know more about why they're

feeling sore and they won't be so scared like they would be if they

don't know why some things are happening to their body. Even if some bad

things might happen, at least the children won't worry so much if they

know about it. "

In our family, we've learned together. At office visits, from reading

online and in books, from talking with others. Our doctor gave us some

coloring books about growing up with JRA, made in Hawaii and geared to a

really young audience. Showed children with splints, in wheelchairs,

some PT exercises, talked about taking medicine, etc. They were really

helpful in the beginning. Josh brought them to first and second grade as

a show and tell type thing, as a way to educate his classmates on JRA.

Something like that might be available through the AF. Or, like Lynn

mentioned, the Magic School Bus stories might be a good way to breach

the subject. Something on the kids level that they'll be able to relate

to.

Good Luck,

Georgina

Lynn Young wrote:

>

> Hi :

> Mickey, too, has had jra (systemic) since 3. It is maybe hard to know

> exactly what or how much to tell them, but for us personally, we have

> explained as much to Mickey as she wanted to know, which has been

> everything. The scope of her questions and understanding has astounded us at

> times... But what we have found is that the more she knows, the greater her

> sense of having some " control " of the disease. She has definitely benefitted

> from the truth, explained in simple terms of course. Do you get the " Magic

> School Bus " show? It has been of tremendous help! In one episode, one of the

> characters has a cold, and his classmates have a trip inside his body to see

> how his body fights the cold. This is a good starting point. What we

> explained to Mickey, is that even though the doctors don't know exactly what

> causes the arthritis to start in some people, what happens is that the body

> mistakenly starts fighting itself, working against itself. The drugs and

> medicine Mickey has to take, keep her body's white cells (the mixed up ones)

> from fighting in her own body... not explaining this nearly as well here as

> we did for Mickey!!!! The drugs " put the arthritis to sleep " . The drugs

> don't get rid of the arthritis, just keep it sleeping so it doesn't hurt

> her. And that over time, if we do a good job of keeping the arthritis

> asleep, there's a chance the mixed up cells will forget what they were

> fighting about, and then she might be able to stop taking the medicine, and

> still feel okay. Most of what we have explained goes along those lines.

> Accurate information, scaled down in terms she can understand. Not sure I

> understand it much better myself!

>

> Having a basic understanding of how the body works, with a great deal of

> help from the Magic School Bus, was definitely a good starting point. If

> Halie is 6, going on 7, she can certainly understand. And I know that it has

> helped her emotionally, to know as much as possible about the disease she is

> afflicted with. It's her body, and a disease she may have her whole life...

> she has a right to know, to have her questions answered. She knows the

> proper names of all the drugs she takes, and what they are meant to do. She

> knows the consequences of not taking them...

>

> Maybe it sounds cruel, or bad parenting, but at one point about a year ago,

> she refused to take her meds. I told her what was likely to happen

> (increased pain, stiffness, etc) and she insisted it was her body, her right

> to decide. So she went without her meds for a day... and spent 2 days in bed

> unable to move without pain. I felt terrible, but she needed to know the

> consequences of her decision... and we talked about it after and she agreed

> that her body isn't ready to fight the arthritis on its own without help.

>

> It's hard to explain, maybe, but I know with absolute certainty that knowing

> as much as she does has helped Mickey to cope with her disease better. She

> knows what she feels, she knows her body is different from her sister's -

> she knows she has to take medicine and have needles and see doctors way more

> often than other kids - " regular kids " , she calls them. To deny her the

> knowledge of why she hurts when others don't, why she takes so many

> medicines - it would be denying her intelligence and her right to respect.

> Someday she is going to have to manage this disease herself - it is HER

> body. She needs to have some input into decisions, even at this age. And of

> course, she has asked, is she going to have arthritis forever, or will it go

> away? - and we are honest with her too, in that nobody can answer that

> question. There is a lot of uncertainty around this disease and we all have

> to take it one day at a time. Again, to be less than completely honest with

> her would, for us, be denying her right to respect, and her intelligence.

> She has benefitted greatly from knowing we will answer her questions, even

> when the answers are painful. She is wise and generous and empathetic beyond

> her years, but still very much a " regular " child in her relationships with

> her sister, and her peers.

>

> Boy, have I rambled on. I asked her, as I wrote this, whether she thought a

> kid has a right to know, was she glad or sorry to know all the details, and

> she most emphatically asserted that it would be " way worse " to not know.

>

> Good luck in your decision, only you and your husband can decide what is

> right for your family, but for us, for Mickey, telling her the truth was the

> best thing all around.

>

> Lynn

>

> Subject: Thank You all......

>

> ......for the positive thoughts and prayers. Halie saw the

> Ophthamologist today and checked out clear - Whew! Luckily, we have

> been blessed with a brave and stoic child; she rarely complains of

> her aches and pains and is a real trooper when it comes to Dr.

> visits. As of now, we have not yet directly explained the extent or

> the severity of her diagnosis (she was Dx'd 2 days ago) because my

> husband and I have differing opinions on how to approach it. I

> believe in being straitforward and completely honest about all of it

> (she is 6 1/2) while my husband thinks that we should be less direct

> in order to not cause her further distress. Does anyone have advice

> on explaining all of this to her??? How did you handle this

> situation with your children and what was the outcome???

> (mother of Kate)- I am particularly interested in hearing

> your story as our daughters are the same age (6 1/2) and both

> Polyarticular. Halie, too, has had JRA since the age of 3 (although

> undiagnosed). Her wrists, feet, hips, and neck seem to be most

> affected. When you have the time, I would love to hear the details

> and progress of Kates disease.

> Will continue to keep you all updated as we begin the first leg of

> our journey, and will keep you all in my prayers.

>

> - mom to Halie, 6, Poly

[Guest guest]

Hi, . Welcome to the group. Just one little thought - my son is older

(14) than your daughter and when he was diagnosed he still did not totally

understand everything the dr was talking about (I didn't either!) and so

when we discussed it further his first question was will I die from this? I

think what they can imagine is worse sometimes than reality. I'm sure your

daughter has seen you and everyone else upset by this and is beginning to

form ideas in her head which are not entirely accurate. If you check with

the arthritis foundation website they have many different books on the

subject about how kids get arthritis too. Good luck to you as you decide how

much to tell her. I do agree with you, being honest can save alot of

misconceptions with her. She knows something is wrong, you know how smart

kids are!! Michele

Thank You all......

.......for the positive thoughts and prayers. Halie saw the

Ophthamologist today and checked out clear - Whew! Luckily, we have

been blessed with a brave and stoic child; she rarely complains of

her aches and pains and is a real trooper when it comes to Dr.

visits. As of now, we have not yet directly explained the extent or

the severity of her diagnosis (she was Dx'd 2 days ago) because my

husband and I have differing opinions on how to approach it. I

believe in being straitforward and completely honest about all of it

(she is 6 1/2) while my husband thinks that we should be less direct

in order to not cause her further distress. Does anyone have advice

on explaining all of this to her??? How did you handle this

situation with your children and what was the outcome???

(mother of Kate)- I am particularly interested in hearing

your story as our daughters are the same age (6 1/2) and both

Polyarticular. Halie, too, has had JRA since the age of 3 (although

undiagnosed). Her wrists, feet, hips, and neck seem to be most

affected. When you have the time, I would love to hear the details

and progress of Kates disease.

Will continue to keep you all updated as we begin the first leg of

our journey, and will keep you all in my prayers.

- mom to Halie, 6, Poly

To manage your subscription settings, please visit:

For links to websites about JRA:

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

[Guest guest]

Hi all

- that is a brilliant explanation! I'll have to remember it!

Ady Ogilvie

(011) 686 6323 (Telephone)

(011) 686 6666 (Fax)

083 412 0174

> Thank You all......

> >

> > ......for the positive thoughts and prayers. Halie saw the

> > Ophthamologist today and checked out clear - Whew! Luckily, we have

> > been blessed with a brave and stoic child; she rarely complains of

> > her aches and pains and is a real trooper when it comes to Dr.

> > visits. As of now, we have not yet directly explained the extent or

> > the severity of her diagnosis (she was Dx'd 2 days ago) because my

> > husband and I have differing opinions on how to approach it. I

> > believe in being straitforward and completely honest about all of it

> > (she is 6 1/2) while my husband thinks that we should be less direct

> > in order to not cause her further distress. Does anyone have advice

> > on explaining all of this to her??? How did you handle this

> > situation with your children and what was the outcome???

> > (mother of Kate)- I am particularly interested in hearing

> > your story as our daughters are the same age (6 1/2) and both

> > Polyarticular. Halie, too, has had JRA since the age of 3 (although

> > undiagnosed). Her wrists, feet, hips, and neck seem to be most

> > affected. When you have the time, I would love to hear the details

> > and progress of Kates disease.

> > Will continue to keep you all updated as we begin the first leg of

> > our journey, and will keep you all in my prayers.

> >

> > - mom to Halie, 6, Poly

>

> To manage your subscription settings, please visit:

> <>

>

> For links to websites about JRA:

> <http://www.geocities.com/Heartland/Village/8414/Links.html>

>

>

[Guest guest]

Dear ,

Sorry it took so long for me to reply--but we're getting ready to move

and have been busy packing and pitching! lol!

Kate's story goes like this: She had just turned three in October and

started to get cranky and tired alot. Two weeks before Christmas she

woke with a fever and not feeling well--thought was flu or something.

Within 4 days was complaining of her left ankle hurting and limping

some (thought maybe she twisted it) Right before Christmas she started

complaining of her other ankle and would wake up in the middle of the

night crying and thrashing her legs around. We got her back to the dr.

and he immediately ordered x-rays (at the time he thought she had

leaukemia!) After noting the iflammation in her ankles, we were sent the

next day to the orthopedic dr. at our children's hospital. The dr.

there was very familiar with jra so he sent us straight to the

rheaumatologist. (we were very lucky to have such quick action by all

the drs.)

She was first dx. with pauci but " went downhill " very fast and was

" upgraded " to an aggressive case of polyarticular (or severe case)

Needless to say we didn't have too happy a holiday that year! She's

been on many meds, sleeps in leg casts and hand splints. She also

developed avascular necrosis of both hips--though this is fairly

uncommon and usually seen more in kids on steroids. (she's never been on

them). She too is very affected in her knees, hips, neck, shoulders,

lower back (actually all over). Well I " ll stop here at " chapter one "

lol! You can write me directly at address below. Take care

and Kate

nLilly@...

[Guest guest]

Hi , I also reccommend telling almost everything. In my situation , I was

not told alot just the bare minimum. This left me very confused and after awhile

depressed. In my mind I had decided I was going to die and JRA was the reason

...so I rebeled and secretly didn't take my meds for 3 weeks ... I wound up in

the hospital (10 1/2 yrs old) thinking I was going to die ... All because I was

left in the dark ... Nothing was spared me after that

and I felt much more in control of my disease and my life . I can't stress to

you enough how important it is for Halie to be tuned into her body because

ultimately she will be the one to manage the arthritis or it will manage her. My

mom and Dad were always a word of caution in my ear but If I wanted to try

something they would ussually agree to it or to it in a modified way... For

instance I had brothers and sisters the would water ski and even though I tried

I didn't have the strength in my hands and arms to do it. so my folks bought a

surf board with a handle that I could sit or even lay on ,the boat pulled the

board and all i had to do was keep myself on it ... It was the best for my

confidence and self- esteem and I had something that I could do too, so that

made me not so different ... In Fact I think I do almost everything that

everyone else does , just maybe in a little different way.I've learned to

celebrate those differences and be proud of them. Being the water dog that I am

.... my lastest adventure was riding jet skis , even with Titanium hips .

Although I soon learned it's not good to fall off in the middle of the lake,

because I didn't have enough upper body strength to pull myself back on , so I

had to swim back to shore and drag the jet ski too . The moral to this story

is... stay fairly close to the shore or you spend all your time swimming back

when you fall off lol. Well back to the reason I wrote you ..the thing I

wouldn't share with your child is the what if's ... Don't share the

dissappointment's that you may feel as a parent that again there is a swollen

joint where there for months wasn't one ... if plans have to be changed...make a

point to make it no big deal . Don't cross bridges before you get to them .. and

if you do ,don't let your child in on it . Never underestimate the abilities of

your child to cope with things that make your knee's weak and your heart

shatter. well I've yacked enough now!! Hope this has helped some !!

Tree

Thank You all......

.......for the positive thoughts and prayers. Halie saw the

Ophthamologist today and checked out clear - Whew! Luckily, we have

been blessed with a brave and stoic child; she rarely complains of

her aches and pains and is a real trooper when it comes to Dr.

visits. As of now, we have not yet directly explained the extent or

the severity of her diagnosis (she was Dx'd 2 days ago) because my

husband and I have differing opinions on how to approach it. I

believe in being straitforward and completely honest about all of it

(she is 6 1/2) while my husband thinks that we should be less direct

in order to not cause her further distress. Does anyone have advice

on explaining all of this to her??? How did you handle this

situation with your children and what was the outcome???

(mother of Kate)- I am particularly interested in hearing

your story as our daughters are the same age (6 1/2) and both

Polyarticular. Halie, too, has had JRA since the age of 3 (although

undiagnosed). Her wrists, feet, hips, and neck seem to be most

affected. When you have the time, I would love to hear the details

and progress of Kates disease.

Will continue to keep you all updated as we begin the first leg of

our journey, and will keep you all in my prayers.

- mom to Halie, 6, Poly

To manage your subscription settings, please visit:

For links to websites about JRA:

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

[Guest guest]

In a message dated 8/7/2001 7:47:37 AM Pacific Daylight Time,

nLilly@... writes:

> rays (at the time he thought she had

> leaukemia!)

Kinda makes ya glad it is " just " JRA

Marcie ( s Mom )

[Guest guest]

Hey Tree:

I just wanted to say, really good points you added at the end there, about

not sharing some things, like the disappointments, etc. The things I haven't

told Mickey are what the odds are of her outgrowing it or going into

permanent remission. I just stress that many many kids with jra do grow out

of it, and then I find lots of opportunities to point out how lucky and

blessed she is/we are in many areas of our lives.

I don't tell her about the possible side effects of the drugs she's on -

except certain things, like how prednisone can really cause terrible mood

swings, so when she has an out-of-proportion reaction to something, we can

help her understand where it may have come from. Sometimes her reactions

frighten her, even, and it helps her to know, that all things considered,

its normal for her... or can be explained.

I didn't consider all that I haven't told her until I read your letter. So I

guess really, I haven't been as " honest " with her as it sounded... but there

is plenty about this that she doesn't need to be burdened with at her age.

It's hard enough as it is, but I do think we gave her the information she

needed to understand the differences between her and her sister, the ways it

affects her body, what we know about why, how the drugs help her body to

deal with the arthritis. It's hard to know where to draw the line on what to

explain, and what to leave alone. You got me thinking, thanks!!

Lynn

From: " theresa sappenfield " <treesap0@...>

Reply-

Date: Tue, 7 Aug 2001 23:51:17 -0400

< >

Subject: Re: Thank You all......

Hi , I also reccommend telling almost everything. In my situation , I

was not told alot just the bare minimum. This left me very confused and

after awhile depressed. In my mind I had decided I was going to die and JRA

was the reason ..so I rebeled and secretly didn't take my meds for 3 weeks

.... I wound up in the hospital (10 1/2 yrs old) thinking I was going to die

.... All because I was left in the dark ... Nothing was spared me after that

and I felt much more in control of my disease and my life . I can't stress

to you enough how important it is for Halie to be tuned into her body

because ultimately she will be the one to manage the arthritis or it will

manage her. My mom and Dad were always a word of caution in my ear but If I

wanted to try something they would ussually agree to it or to it in a

modified way... For instance I had brothers and sisters the would water ski

and even though I tried I didn't have the strength in my hands and arms to

do it. so my folks bought a surf board with a handle that I could sit or

even lay on ,the boat pulled the board and all i had to do was keep myself

on it ... It was the best for my confidence and self- esteem and I had

something that I could do too, so that made me not so different ... In Fact

I think I do almost everything that everyone else does , just maybe in a

little different way.I've learned to celebrate those differences and be

proud of them. Being the water dog that I am ... my lastest adventure was

riding jet skis , even with Titanium hips . Although I soon learned it's not

good to fall off in the middle of the lake, because I didn't have enough

upper body strength to pull myself back on , so I had to swim back to shore

and drag the jet ski too . The moral to this story is... stay fairly close

to the shore or you spend all your time swimming back when you fall off lol.

Well back to the reason I wrote you ..the thing I wouldn't share with your

child is the what if's ... Don't share the dissappointment's that you may

feel as a parent that again there is a swollen joint where there for months

wasn't one ... if plans have to be changed...make a point to make it no big

deal . Don't cross bridges before you get to them .. and if you do ,don't

let your child in on it . Never underestimate the abilities of your child to

cope with things that make your knee's weak and your heart shatter. well

I've yacked enough now!! Hope this has helped some !!

Tree

Thank You all......

.......for the positive thoughts and prayers. Halie saw the

Ophthamologist today and checked out clear - Whew! Luckily, we have

been blessed with a brave and stoic child; she rarely complains of

her aches and pains and is a real trooper when it comes to Dr.

visits. As of now, we have not yet directly explained the extent or

the severity of her diagnosis (she was Dx'd 2 days ago) because my

husband and I have differing opinions on how to approach it. I

believe in being straitforward and completely honest about all of it

(she is 6 1/2) while my husband thinks that we should be less direct

in order to not cause her further distress. Does anyone have advice

on explaining all of this to her??? How did you handle this

situation with your children and what was the outcome???

(mother of Kate)- I am particularly interested in hearing

your story as our daughters are the same age (6 1/2) and both

Polyarticular. Halie, too, has had JRA since the age of 3 (although

undiagnosed). Her wrists, feet, hips, and neck seem to be most

affected. When you have the time, I would love to hear the details

and progress of Kates disease.

Will continue to keep you all updated as we begin the first leg of

our journey, and will keep you all in my prayers.

- mom to Halie, 6, Poly

To manage your subscription settings, please visit:

For links to websites about JRA:

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

[Guest guest]

Dear Tree -

Thank You so much for sharing your insight on all of this. I cried

and I laughed at your outpouring of honesty! Ironically, we too,

spend a lot of time on the lake; we have a patio boat and a

waverunner that we take out almost every weekend during the summer.

We are waterdogs as well, and Halie has a great time when we go - she

spends the entire day in the lake swimming and playing frisbee, and

on occasion, will take a ride on the ski. It is at those times, that

I almost forget that she has JRA and stiff joints. I think, in some

ways, that she forgets too since she NEVER complains even after an 8

hour day at the lake. It is therapeutic for all of us and I am

already beginning to feel a little sad that summer will not be here

forever.

I have had an honest and open talk with her about all of this, and

she responded sooooo well! She had some perceptive thoughts and

questions, and I answered them as honestly as I could. It went as

well as I could have hoped and we both agreed to learn about this

together. What a terrific kid I have!!!

It is so nice to get honest feedback from people who have been

through this already. It has really helped me learn how to handle

the tough questions and the hard days. Thanks again...... Take

care....

> Hi , I also reccommend telling almost everything. In my

situation , I was not told alot just the bare minimum. This left me

very confused and after awhile depressed. In my mind I had decided I

was going to die and JRA was the reason ..so I rebeled and secretly

didn't take my meds for 3 weeks ... I wound up in the hospital (10

1/2 yrs old) thinking I was going to die ... All because I was left

in the dark ... Nothing was spared me after that

> and I felt much more in control of my disease and my life . I can't

stress to you enough how important it is for Halie to be tuned into

her body because ultimately she will be the one to manage the

arthritis or it will manage her. My mom and Dad were always a word of

caution in my ear but If I wanted to try something they would

ussually agree to it or to it in a modified way... For instance I had

brothers and sisters the would water ski and even though I tried I

didn't have the strength in my hands and arms to do it. so my folks

bought a surf board with a handle that I could sit or even lay

on ,the boat pulled the board and all i had to do was keep myself on

it ... It was the best for my confidence and self- esteem and I had

something that I could do too, so that made me not so different ...

In Fact I think I do almost everything that everyone else does , just

maybe in a little different way.I've learned to celebrate those

differences and be proud of them. Being the water dog that I am ...

my lastest adventure was riding jet skis , even with Titanium hips .

Although I soon learned it's not good to fall off in the middle of

the lake, because I didn't have enough upper body strength to pull

myself back on , so I had to swim back to shore and drag the jet

ski too . The moral to this story is... stay fairly close to the

shore or you spend all your time swimming back when you fall off lol.

Well back to the reason I wrote you ..the thing I wouldn't share with

your child is the what if's ... Don't share the dissappointment's

that you may feel as a parent that again there is a swollen joint

where there for months wasn't one ... if plans have to be

changed...make a point to make it no big deal . Don't cross bridges

before you get to them .. and if you do ,don't let your child in on

it . Never underestimate the abilities of your child to cope with

things that make your knee's weak and your heart shatter. well I've

yacked enough now!! Hope this has helped some !!

> Tree

> Thank You all......

>

>

> ......for the positive thoughts and prayers. Halie saw the

> Ophthamologist today and checked out clear - Whew! Luckily, we have

> been blessed with a brave and stoic child; she rarely complains of

> her aches and pains and is a real trooper when it comes to Dr.

> visits. As of now, we have not yet directly explained the extent or

> the severity of her diagnosis (she was Dx'd 2 days ago) because my

> husband and I have differing opinions on how to approach it. I

> believe in being straitforward and completely honest about all of it

> (she is 6 1/2) while my husband thinks that we should be less direct

> in order to not cause her further distress. Does anyone have advice

> on explaining all of this to her??? How did you handle this

> situation with your children and what was the outcome???

> (mother of Kate)- I am particularly interested in hearing

> your story as our daughters are the same age (6 1/2) and both

> Polyarticular. Halie, too, has had JRA since the age of 3 (although

> undiagnosed). Her wrists, feet, hips, and neck seem to be most

> affected. When you have the time, I would love to hear the details

> and progress of Kates disease.

> Will continue to keep you all updated as we begin the first leg of

> our journey, and will keep you all in my prayers.

>

> - mom to Halie, 6, Poly

>

>

>

> To manage your subscription settings, please visit:

>

>

> For links to websites about JRA:

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

>

>

[Guest guest]

, So glad I could help some!!! Your making lasting fun and painfree

memories for your daughter . Don't hesitate to encourage her to think about them

when pain is her shadow. Laughing and reliving those great times will hell her

through the rough spots.

I live for my summers and think of them fondly all thru fall , winter and

spring. KEEP SMILIN:):):)Tree

Thank You all......

>

>

> ......for the positive thoughts and prayers. Halie saw the

> Ophthamologist today and checked out clear - Whew! Luckily, we have

> been blessed with a brave and stoic child; she rarely complains of

> her aches and pains and is a real trooper when it comes to Dr.

> visits. As of now, we have not yet directly explained the extent or

> the severity of her diagnosis (she was Dx'd 2 days ago) because my

> husband and I have differing opinions on how to approach it. I

> believe in being straitforward and completely honest about all of it

> (she is 6 1/2) while my husband thinks that we should be less direct

> in order to not cause her further distress. Does anyone have advice

> on explaining all of this to her??? How did you handle this

> situation with your children and what was the outcome???

> (mother of Kate)- I am particularly interested in hearing

> your story as our daughters are the same age (6 1/2) and both

> Polyarticular. Halie, too, has had JRA since the age of 3 (although

> undiagnosed). Her wrists, feet, hips, and neck seem to be most

> affected. When you have the time, I would love to hear the details

> and progress of Kates disease.

> Will continue to keep you all updated as we begin the first leg of

> our journey, and will keep you all in my prayers.

>

> - mom to Halie, 6, Poly

>

>

>

> To manage your subscription settings, please visit:

>

>

> For links to websites about JRA:

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

>

>