Re: Death of JRA friend, how do I help my DD

[Guest guest]

Hi,

You have to reinforce a Positive attitude. It is ok to be sad but there's

a time for it. Tell her the issue which it was from a Car accident not the

JA. Car accidents can kill anyone. I have seen a car crushed but the driver

comes out without a scratch. Other times the driver passes. Then there's times

when just a bump can cause death. God has his special angels and that's why

the saying only the good die young comes from. You have to be honest with her

and let her get it out.

Just like some JA kids hear that Grandma or Grandpa has Arthritis and

they pass away. Then the child will relate this to them. We know that Grandma

and Grandpa have other issues health wise which caused the passing. So to be

Honest with the child as much as you can.

Reassurance is good. Letting the child find comfort is best. If you

would like we have many JA Survivors who would talk and let you and your

daughter

know that she is 11 and the others are older than she is with JA. This may

be good for her to see others with JA do not pass. My daughter is 21 now. She

has had JA issues since age 3 and was Diagnosed at age 12.

Robbin

Robbin

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. Try it now.

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[Guest guest]

I love your name btw.... Paddington bear is awesome.

Do you know the circumstances of the other childs death... Was their

diagnosis the same?

We had a camper die that attended our JA camp but she had another rheumatic

disease that was very very very severe and had been untreated for a long

time due to lack of proper pediatric rheumatologist in the area and

misunderstanding of how aggressive her Lupus was.

I think it might help knowing what exactly happend or getting more

information. You might want to call the rheumatologist too... if the campers

see the same doctor in the area... and ask them to talk to your child....

I know out pediatric rheumatologist called many of us who were close to this

camper and spoke with us. She also had a social worker at the appointments

to offer support as well. It was helpful in addressing concernss and worries

and knowing what was going on with this particular girls situation and why

it wasnt likely to happen to us.

Anyways, good fortune

Issadora

On Fri, Dec 26, 2008 at 5:41 PM, paddingt0n_bear

<paddingt0n_bear@...>wrote:

> DD ,11, went to camp and finally met other children that have JRA like

> herself and made lots of friends. We got the news that one of these

> friends died. She now thinks that she is going to die. We have talked

> about the risks and that she is in great shape and has nothing to worry

> about. That her friend is now in a better place without pain.

>

> What eles can I say? How do I reasure her that she is not going to die?

>

>

>

--

" How exactly does one become a butterfly? You must want to fly so badly that

you are willing to give up being a caterpillar. "

- Trina us

[Guest guest]

The camper died in a car crash. Nothing to do with the illness and he

was well managed not major problems.

The problems are with my daughter she has one kidney, Ig A deficent,

plus JRA all over her body. Her JRA is not under controll and keeps

getting worse. The doctors have told her she my live until 16. She is

unable to do any sports that can put her kidney at risk. We have been

told that she will not qualify for a transplant.

So hearing a healthy JRA friend die, just gets her thinking her time

is ticking.

>

> > DD ,11, went to camp and finally met other children that have

JRA like

> > herself and made lots of friends. We got the news that one of

these

> > friends died. She now thinks that she is going to die. We have

talked

> > about the risks and that she is in great shape and has nothing to

worry

> > about. That her friend is now in a better place without pain.

> >

> > What eles can I say? How do I reasure her that she is not going

to die?

> >

> >

> >

>

>

>

> --

> " How exactly does one become a butterfly? You must want to fly so

badly that

> you are willing to give up being a caterpillar. "

> - Trina us

>

>

>

[Guest guest]

I'm so sorry to hear about your daughter's friend.

What doctor would tell your daughter that she MAY live till 16? What kind of a

doctor would take away a child's hope?

My son has kidney disease and juvenile ankylosing spondylitis. His AS is in

remission. His kidney disease, may get suddenly worse in his 20's and he stands

the chance of losing his hearing. He freaked out about this about 3 months ago.

I'd told him about the possiblities of this with his kidney disease (a genetic

collagen disorder) but we really believe his case is very mild and that these

things will not come to pass. He seemed unfazed by the info, but come to find

out, he was tuning me out the whole time. He is now 19, and about 3 months ago

decided to look up his Alport syndrome on the internet. He totallly freaked out

and thought he was going to die. Now, he has the attitude that he really doesn't

care about what time he has left. He is intent on finishing college and pursuing

his dreams. He will not let this stop him. Granted, we really don't know what

his outcome will be. And neither do your daughter's docs. Sorry for saying this,

but being a nurse, I know that these doctor's are not God. They do not know how

a person will do. Attitude is EVERYTHING! I have a dear friend whose elderly

aunt was predicted to die 3 years ago! She is doing great. Art Buchwald, the

famous columnist and comedian, was in a hospice waiting to die for a few YEARS!

Attitude is EVERYTHING!

I personally would also think about having a talk with your daughter's doctors

about trying to give her HOPE. Also think about getting her into a good

counselor.

Sorry to butt in, but when it comes to what I think is poor medical practice, I

have to speak my peace. Sorry if I got it wrong.

mom to Rob, 19, JAS, and Alport syndrome

Re: Death of JRA friend, how do I help my DD

> The camper died in a car crash. Nothing to do with the illness

> and he

> was well managed not major problems.

> The problems are with my daughter she has one kidney, Ig A

> deficent,

> plus JRA all over her body. Her JRA is not under controll and

> keeps

> getting worse. The doctors have told her she my live until 16.

> She is

> unable to do any sports that can put her kidney at risk. We have

> been

> told that she will not qualify for a transplant.

> So hearing a healthy JRA friend die, just gets her thinking her

> time

> is ticking.

>

>

>

>

>

> >

> > > DD ,11, went to camp and finally met other

> children that have

> JRA like

> > > herself and made lots of friends. We got the news that one

> of

> these

> > > friends died. She now thinks that she is going to die. We

> have

> talked

> > > about the risks and that she is in great shape and has

> nothing to

> worry

> > > about. That her friend is now in a better place without pain.

> > >

> > > What eles can I say? How do I reasure her that she is not

> going

> to die?

> > >

> > >

> > >

> >

> >

> >

> > --

> > " How exactly does one become a butterfly? You must want to fly

> so

> badly that

> > you are willing to give up being a caterpillar. "

> > - Trina us

> >

> >

> >

[Guest guest]

What a HORRRIBLE thing for a doctor to say!!! I am really just amazed about

some of the things that doctors will predict.....and when it comes to

PEDIATRIC populations, one can NEVER say when one will die.

The girl i was speaking about... she had SLE (Systemic Lupus Erythematosus)

since she was age 5.... had not been treated properly... was sooo sick for

much of her life with disease out of control.... she had double stranded

anti-DNA in the last stage and even had smooth brain matter. She had been on

chemo multiple times, had kidney disease, lung disease, brain disease. joint

disease and the list goes on. When she was my camper, she was on 21

medications including antirejection medications to keep her body from

rejecting her own organs.

We all knew that she wasn't going to live but no one knew How Long..... one

dr said she probbaly wouldnt make it to adult hood and she didnt.. she died

when she was 14 but again, shre had absolutely tremendously out of control

disease that affected her organs including the brain rigth down to her DNA

structures had actually changed.

I have met many many people with JRA and with Kidney disease..... it shocks

me that they would say she is not a good kidney transplant recipient since

there are many people with rheumatic diseases who get kidney transplants. I

know someone with Lupus who got a kidney transplant and another who was

going to need one. she also had heart disease but ended up not needing one

in the end fortunately however they would have given it to her.

It sounds like your daughters hospital has some sort of dreary issue or

something!!!! I would really seek a 2nd or 3rd opinion on such things like

that.

There have been people with very severe disease from JRA .... meds not

working.... severe deformaties... some end up wheelchair bound but they are

still very happy lovely people and many who have been severely ill but still

do awesome in the end. JRA is VERY unpredictable. It is EXTREMELY rare for

anyone to die from JRA related disease. Yes, it can happen but the

mortaility rate is quite low especialy in developed countries and even when

dealing with organ involvement.

It sounds like your daugther needs a new doctor.... I'm just appauled that

they would tell an 11 year old that they will probbaly die from JRA when

they are 16!! I mean I do not eve believe they tell kids with cancer things

like that unless there is absolute proof that nothing else is going to work

and that the disease is definately terminal!

Please tell your daughter that no one can know what will happen with these

illnesses. And doctors are wrong all of the time. It's more strresful to

spend life worrying about death than to go on living.

Issadora

On Fri, Dec 26, 2008 at 7:45 PM, and Schulz <

snooksmama@...> wrote:

> I'm so sorry to hear about your daughter's friend.

> What doctor would tell your daughter that she MAY live till 16? What kind

> of a doctor would take away a child's hope?

> My son has kidney disease and juvenile ankylosing spondylitis. His AS is in

> remission. His kidney disease, may get suddenly worse in his 20's and he

> stands the chance of losing his hearing. He freaked out about this about 3

> months ago. I'd told him about the possiblities of this with his kidney

> disease (a genetic collagen disorder) but we really believe his case is very

> mild and that these things will not come to pass. He seemed unfazed by the

> info, but come to find out, he was tuning me out the whole time. He is now

> 19, and about 3 months ago decided to look up his Alport syndrome on the

> internet. He totallly freaked out and thought he was going to die. Now, he

> has the attitude that he really doesn't care about what time he has left. He

> is intent on finishing college and pursuing his dreams. He will not let this

> stop him. Granted, we really don't know what his outcome will be. And

> neither do your daughter's docs. Sorry for saying this, but being a nurse, I

> know that these doctor's are not God. They do not know how a person will do.

> Attitude is EVERYTHING! I have a dear friend whose elderly aunt was

> predicted to die 3 years ago! She is doing great. Art Buchwald, the famous

> columnist and comedian, was in a hospice waiting to die for a few YEARS!

> Attitude is EVERYTHING!

> I personally would also think about having a talk with your daughter's

> doctors about trying to give her HOPE. Also think about getting her into a

> good counselor.

> Sorry to butt in, but when it comes to what I think is poor medical

> practice, I have to speak my peace. Sorry if I got it wrong.

> mom to Rob, 19, JAS, and Alport syndrome

>

>

> Re: Death of JRA friend, how do I help my DD

> < %40>

>

> > The camper died in a car crash. Nothing to do with the illness

> > and he

> > was well managed not major problems.

> > The problems are with my daughter she has one kidney, Ig A

> > deficent,

> > plus JRA all over her body. Her JRA is not under controll and

> > keeps

> > getting worse. The doctors have told her she my live until 16.

> > She is

> > unable to do any sports that can put her kidney at risk. We have

> > been

> > told that she will not qualify for a transplant.

> > So hearing a healthy JRA friend die, just gets her thinking her

> > time

> > is ticking.

> >

> >

> >

> >

> >

> > >

> > > > DD ,11, went to camp and finally met other

> > children that have

> > JRA like

> > > > herself and made lots of friends. We got the news that one

> > of

> > these

> > > > friends died. She now thinks that she is going to die. We

> > have

> > talked

> > > > about the risks and that she is in great shape and has

> > nothing to

> > worry

> > > > about. That her friend is now in a better place without pain.

> > > >

> > > > What eles can I say? How do I reasure her that she is not

> > going

> > to die?

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > > --

> > > " How exactly does one become a butterfly? You must want to fly

> > so

> > badly that

> > > you are willing to give up being a caterpillar. "

> > > - Trina us

> > >

> > >

> > >

[Guest guest]

Oh,  how sad to lose a friend.  I am sure your daughter is very confused and

worried right now.  I think i would be as well, if i was in her place.

   My son doesn't have JRA, but worries about dying all the time.  He is afraid

that he is going to leave us and this makes him very afraid.  I told him, we can

not control when we die and heavenly father would not like us to worry about

death.  He would like us to live life to it's fullest.  When it is time for us

to go, he will call us home.  I don't know if this helps him not to worry about

the unknown, he tends to be a worrier, but i think it helps him to know that God

is in-control of everything.

  I am sorry that your daughter lost a friend.

Love,

mia

Mia is cute

   Ian    10 years old

   Sashi 5

     

  

 

From: paddingt0n_bear <paddingt0n_bear@...>

Subject: Death of JRA friend, how do I help my DD

Date: Friday, December 26, 2008, 4:41 PM

DD ,11, went to camp and finally met other children that have JRA

like

herself and made lots of friends. We got the news that one of these

friends died. She now thinks that she is going to die. We have talked

about the risks and that she is in great shape and has nothing to worry

about. That her friend is now in a better place without pain.

What eles can I say? How do I reasure her that she is not going to die?