Re: Calling all Lurkers/Infrequent Contributor

January 13, 2008

I'll be next

I am the mother of Caleb age 6 well we were told last week

systemic JRA but then they decided that they wanted to retract that

for now and want to check again for malignancys again! But the Dr

said we are going to treat this like it is JRA until we know

different but just hold off of the chemo drugs until we absolutely

need them. We are on naproxyn as of about 2 weeks ago. Caleb still

has nightly fevers up to 105, bilateral knee pain, a sore throat,

shoulder pain and that pesky rash that comes and goes. He also

sleeps in school they have finally agreed to modify his school

activity. He sleepe alot here and now at school also.

nice to meet all of you!

whos next?

>

> Hey Everyone,

>

> It was so nice to hear from Oliver. I'd like to push those of us

who are

> regular readers, but not so much contributors, to add our voices

to the

> board. There is so much knowledge out there in so many areas. Who

are you

> and who are your children? What kind of arthritis do they have?

What works

> for your child regarding medicines and other treatments? What

hasn't

> worked? Are your biggest problems medical issues, or school issues

or social

> interactions, or something else completely? Does having jra affect

your life

> all the time, some of the time, hardly at all? Let's kind of re-

introduce

> ourselves.

>

> I'll start. My son Ezra has had systemic jra since the age of 4.

He has been

> on lots of prednisone, methotrexate, enbrel, remicade, and

thalidomide.

> Either nothing worked well, or for long, or he had complications

with the

> meds and had to be taken off. He has been hospitalized several

times for

> infections, MAS, and a weird lung inflammation. He started on

kineret, along

> with arava, IVIG every three weeks and a little bit of prednisone

almost two

> years ago, and has done amazingly well. He has not used a

wheelchair or

> slept in school for well over a year. Many of his issues have been

school

> and social. He has missed lots of school and is not very adept

socially. He

> is making progress. He has a few friends, but he's not quite in

the normal

> range yet. We are always waiting for the next complication or the

meds to

> stop working, but we are beginning to enjoy this time. It has

taken me a

> year not to be in " emergency mode " , every time Ezra slept a half

hour later

> than usual. So that's a little bit of who we are.

>

> So, who's next?

>

January 13, 2008

i forgot its systemic JRA that we are treating him for and he starts

PT in two weeks.

> >

> > Hey Everyone,

> >

> > It was so nice to hear from Oliver. I'd like to push those of us

> who are

> > regular readers, but not so much contributors, to add our voices

> to the

> > board. There is so much knowledge out there in so many areas.

Who

> are you

> > and who are your children? What kind of arthritis do they have?

> What works

> > for your child regarding medicines and other treatments? What

> hasn't

> > worked? Are your biggest problems medical issues, or school

issues

> or social

> > interactions, or something else completely? Does having jra

affect

> your life

> > all the time, some of the time, hardly at all? Let's kind of re-

> introduce

> > ourselves.

> >

> > I'll start. My son Ezra has had systemic jra since the age of 4.

> He has been

> > on lots of prednisone, methotrexate, enbrel, remicade, and

> thalidomide.

> > Either nothing worked well, or for long, or he had complications

> with the

> > meds and had to be taken off. He has been hospitalized several

> times for

> > infections, MAS, and a weird lung inflammation. He started on

> kineret, along

> > with arava, IVIG every three weeks and a little bit of

prednisone

> almost two

> > years ago, and has done amazingly well. He has not used a

> wheelchair or

> > slept in school for well over a year. Many of his issues have

been

> school

> > and social. He has missed lots of school and is not very adept

> socially. He

> > is making progress. He has a few friends, but he's not quite in

> the normal

> > range yet. We are always waiting for the next complication or

the

> meds to

> > stop working, but we are beginning to enjoy this time. It has

> taken me a

> > year not to be in " emergency mode " , every time Ezra slept a half

> hour later

> > than usual. So that's a little bit of who we are.

> >

> > So, who's next?

> >

>

January 13, 2008

ok we were up all night he is 7 not 6 soon to be 8. LOL we were up

all night with the sickies! and I am on overload LOL

> >

> > Hey Everyone,

> >

> > It was so nice to hear from Oliver. I'd like to push those of us

> who are

> > regular readers, but not so much contributors, to add our voices

> to the

> > board. There is so much knowledge out there in so many areas.

Who

> are you

> > and who are your children? What kind of arthritis do they have?

> What works

> > for your child regarding medicines and other treatments? What

> hasn't

> > worked? Are your biggest problems medical issues, or school

issues

> or social

> > interactions, or something else completely? Does having jra

affect

> your life

> > all the time, some of the time, hardly at all? Let's kind of re-

> introduce

> > ourselves.

> >

> > I'll start. My son Ezra has had systemic jra since the age of 4.

> He has been

> > on lots of prednisone, methotrexate, enbrel, remicade, and

> thalidomide.

> > Either nothing worked well, or for long, or he had complications

> with the

> > meds and had to be taken off. He has been hospitalized several

> times for

> > infections, MAS, and a weird lung inflammation. He started on

> kineret, along

> > with arava, IVIG every three weeks and a little bit of

prednisone

> almost two

> > years ago, and has done amazingly well. He has not used a

> wheelchair or

> > slept in school for well over a year. Many of his issues have

been

> school

> > and social. He has missed lots of school and is not very adept

> socially. He

> > is making progress. He has a few friends, but he's not quite in

> the normal

> > range yet. We are always waiting for the next complication or

the

> meds to

> > stop working, but we are beginning to enjoy this time. It has

> taken me a

> > year not to be in " emergency mode " , every time Ezra slept a half

> hour later

> > than usual. So that's a little bit of who we are.

> >

> > So, who's next?

> >

>

January 13, 2008

Hi ,

We met years ago at an AJAO - I can't remember which one now!? I believe you and

your mother were sitting behind me, or in front of me at one of the sessions and

we chatted about your Ezra, my Robbie and Systemic onset.? Robbie (now )

experienced several complications and frequent hospitalizations with his JRA -

his second admission was for MAS, and inflammation of nearly every internal

organ.? This was the admission that resulted in? his diagnosis - he had been ill

about 3 -4 months at that time.? A diagnosis the year before of Minimal Change

Disease (a kidney disorder/disease) kept throwing them off when he first became

ill with his jra symptoms - and the treatment for the MCD following his first

JRA symptom admission masked the JRA symptoms for awhile.? He was tested for

leukemia - like many others here and when they finally walked in the hospital

room with the JRA diagnosis (which based on my own internet research - like many

here - I had already identified as the possible/probably culprit) I didn't know

whether to laugh or cry.? Part of you is horrified that your child is going to

be facing what you have already learned about the disease, and the other part is

relieved that you know what is making your child so deathly ill, and can now

begin the fight.

So, we have been in this fight now for six and a half years.? has taken

prednisolone the entire time.? We are now at a very low dose, which is equal to

what the body would produce on it's own, were it able to do so.? He has been fed

steriods for so long that the adrenal system doesn't make it on it's own.? He

takes cyclosporine, methotrexate and the pred for his jra.? Motrin prn when

needed for pain or stiffness.? He takes prevacid, lisinopril, to combat the side

affects of the meds, in addition to a calcium supplement with vit D, and folic

acid.? Happily, he has no permanent joint damage with the exception of one or

two toes.? It has been 2.5 years since he has required a hospitalization - which

after the our frequent stays at the hospital in the first few years I still find

amazing, and hopeful.? Like , for the longest time I kept waiting for the

next time - keeping my hospital bag ever packed.?

Our biggest issues these days are more side affect related than from his JRA.?

He had experienced hypertension, osteopenia, compression fractures of his

vertebra, stretch marks and growth delay.? Recently we attended the 6th birthday

party of a family friend - and all of the first graders at this party were as

big as or bigger than my 10 year old 5th grader.? The good news is that the last

bone age study has his bone age equivalent to his growth - which means that

there is still hope that he will achieve more appropriate growth.? The thought

of sending my baby to middle school next year at the size of a 1st or 2nd grader

makes my blood run cold - particularly as he is going into a really large school

fed by several in the area.? He is currently experiencing dental problems, as

his mouth (along with the rest of his body) hasn't grown enough to accomodate

the adult teeth.

will probally do just fine in middle school - as socially he has excelled

through (or perhaps because of) all of this.? He makes friends easily, everyone

in the school knows him and he adapts.? When confronted about his size in the

past he had been very matter of fact in his responses - and the other kids have

learned along with and they accept him and he does very well.? There are

the few that resulted?in several notes in his school journal where he wrote

about being called a midget - and even drew a picture of himself playing

basketball in the school gym with the word " midget " written in huge letters over

him.?

also excells in baseball - his true passion.? He has refused to allow the

JRA to keep him from playing.? He was devastated a few years ago when a

compression fracture of his vertabra resulted in his not being about to play for

a huge part of one spring season.? He still talks about the gifts he received

from the son (older sibling of a girl with JRA) who sent him a baseball book, a

hitaway for when he could play again, a prized " game ball " and some other gifts

when he learned of 's sadness.? He hopes to play for the Boston Red Sox

someday - and I try to encourage him to believe in himself and his dreams - and

try to have him discuss other ways to keep his beloved baseball in his life

should that dream not come true.? His coaches often talk about being the

heart of the team and commenting that if all the players on the team had his

drive and determination, the team would be unstoppable.

has recently developed a love of poetry and wrote a poem that was

published in a book of kids poetry.? This was the result of a poetry contest

that he entered in school.? He is an honor role student.

We saw his pediatrician this past Friday - and met the new pediatric

rheumatologist at the Naval Medical Center in Bethesda.? Sadly, the day I have

dreaded for years - his pediatrician is leaving the military.? This physician

has been my rock through many difficult years, and has made himself totally

accessible to me should I need his assistance (with the exception of when the

Navy saw fit to deploy him) - and even then, he made sure that I had a contact

should I need one.? I am pleased with my first meeting with the pediatric rheumy

- after our initial discussion, she told me that was a priority to her,

and that the immediate concerns she wanted to address in 's care was to

follow up on his bone density health and growth issues with endocrinology, and

to evaluate the need of some of his meds - consulting with Nephrology before

moving to remove the cyclosporine and hopefully the need for lisinopril. And

then to evaluate his present medication and move on from there.? Finally -

someone besides his pediatrician is listening to my concerns regarding 's

growth.

Gotta run - but there's our brief history and a catch up.? I read nearly daily -

but just don't have the time with job and Rob's scouting and baseball schedule

to keep up. (Yes - winter practice is here - and we are headed to the car!)

Val

Rob's Mom (10,systemic)

Calling all Lurkers/Infrequent Contributor

Hey Everyone,

It was so nice to hear from Oliver. I'd like to push those of us who are

regular readers, but not so much contributors, to add our voices to the

board. There is so much knowledge out there in so many areas. Who are you

and who are your children? What kind of arthritis do they have? What works

for your child regarding medicines and other treatments? What hasn't

worked? Are your biggest problems medical issues, or school issues or social

interactions, or something else completely? Does having jra affect your life

all the time, some of the time, hardly at all? Let's kind of re-introduce

ourselves.

I'll start. My son Ezra has had systemic jra since the age of 4. He has been

on lots of prednisone, methotrexate, enbrel, remicade, and thalidomide.

Either nothing worked well, or for long, or he had complications with the

meds and had to be taken off. He has been hospitalized several times for

infections, MAS, and a weird lung inflammation. He started on kineret, along

with arava, IVIG every three weeks and a little bit of prednisone almost two

years ago, and has done amazingly well. He has not used a wheelchair or

slept in school for well over a year. Many of his issues have been school

and social. He has missed lots of school and is not very adept socially. He

is making progress. He has a few friends, but he's not quite in the normal

range yet. We are always waiting for the next complication or the meds to

stop working, but we are beginning to enjoy this time. It has taken me a

year not to be in " emergency mode " , every time Ezra slept a half hour later

than usual. So that's a little bit of who we are.

So, who's next?

________________________________________________________________________

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January 13, 2008

Hi there, I am Jane in London UK and have been a member for about 3 weeks

now.

My granddaughter Maia was diagnosed with Juvenile Polyarthritis 2 months

ago, which was a bit of a shock as we had all thought that she has a couple of

ganglions on her hands up until that point. In fact she had had ultrasounds and

visits to the specialists at the Royal Free, who felt it was a wait and see

situation.

I wasn't happy about her consequent stiffness in her fingers and inability

to straighten more fingers than there were ganglions so i asked for a

referral........that was the result.

She is a very stoical 9 year old, who tolerates elbow blood tests without

pain relief, and who deals with her own medication.

She is on Methotraxate, folic acid and Ibuprofen, with a slight anorexia and

queasiness only. She had sight, blood and consultation again in the week

before Christmas for possible rheumatoid and uveitis, but the rheumatoid came

back negative and she doesn't have the protein in her blood for uveitis.

It's funny, but it seems such a relief that she 'only' has JpA, that it

seems a bearable thing to live with. She has deformities in her fingers and her

right elbow, but as such it hasn't affected any joints outside of her arms and

hands.

Reading about all the symptoms and struggles of the dear familes here, I

coumt my blessings that Maia is not so afflicted.

Her life has been sadly traumatic with the break-up of her parents, being an

only child and having to bear the pain of her father who can't hide his

feelings, and the irritability of her mother towards him and her.

I strongly feel that sometimes dis-ease occurs in the place that affects you

most. In her case it is the joints, as she 'carries' the pain of her

parents, and indeed has to parent them. She is so grown up but is in such

emotional

pain. She has wet the bed for ever, and was prescribed some melts to counter

this. They work fairly well, but the miracle is that we bought her a hypnosis

tape which she plays every night, and now she actually gets up and goes to

the loo when she needs to. She has gone from 5 out of 7 nights wet, to 1 out

of 7.......amazing, and it worked the first night....such a sweet tape.

Make me think that other things could be overcome or eased with hypnosis. Am

going to try to get her immune system back on track with a combination of

hypnosis and naturopathic treatment. I already do Reiki on her, which she says

helps......

Long message I know......anyone in the Herts or London area please get in

touch. BTW Barnet Hospital Trust is EXCELLENT......we are so privileged to have

free medical care in this country, and we don't appreciate

it...................... Kindness and love Jane

January 14, 2008

> > >

> > > Hey Everyone,

> > >

> > > It was so nice to hear from Oliver. I'd like to push those of

us

> > who are

> > > regular readers, but not so much contributors, to add our

voices

> > to the

> > > board. There is so much knowledge out there in so many areas.

> Who

> > are you

> > > and who are your children? What kind of arthritis do they

have?

> > What works

> > > for your child regarding medicines and other treatments? What

> > hasn't

> > > worked? Are your biggest problems medical issues, or school

> issues

> > or social

> > > interactions, or something else completely? Does having jra

> affect

> > your life

> > > all the time, some of the time, hardly at all? Let's kind of

re-

> > introduce

> > > ourselves.

> > >

> > > I'll start. My son Ezra has had systemic jra since the age of

4.

> > He has been

> > > on lots of prednisone, methotrexate, enbrel, remicade, and

> > thalidomide.

> > > Either nothing worked well, or for long, or he had

complications

> > with the

> > > meds and had to be taken off. He has been hospitalized several

> > times for

> > > infections, MAS, and a weird lung inflammation. He started on

> > kineret, along

> > > with arava, IVIG every three weeks and a little bit of

> prednisone

> > almost two

> > > years ago, and has done amazingly well. He has not used a

> > wheelchair or

> > > slept in school for well over a year. Many of his issues have

> been

> > school

> > > and social. He has missed lots of school and is not very adept

> > socially. He

> > > is making progress. He has a few friends, but he's not quite

in

> > the normal

> > > range yet. We are always waiting for the next complication or

> the

> > meds to

> > > stop working, but we are beginning to enjoy this time. It has

> > taken me a

> > > year not to be in " emergency mode " , every time Ezra slept a

half

> > hour later

> > > than usual. So that's a little bit of who we are.

> > >

> > > So, who's next?

> > >

> >

>Hi heather..hope you are doing ok!

flower

January 17, 2008

Hi Jane and welcome,

Reiki is amazing, isn't it? I wanted to ask you a question about something

you wrote because I don't understand it. You said that she doesn't have the

protein in her blood for uveitis, what do you mean? Do you mean she isn't

hla-b27? Or am I way off? My daughter isn't hla-b27, but she does have

uveitis.

Sorry I am confused. So glad you found this wonderful supportive group of

people,

' & a 12 jia/uveitis

PetSpectrum@... wrote: