New member

[Guest guest]

Hello Jerry!

I am so glad you found this group! My heart goes out to you. We're been into

this disease(how I hate that word!) for nearly two years now. It is

heartbreaking to see your child hurt. This group has helped me so much. I just

found it a couple of months ago. My heart skipped a little beat when I read

that you are from Austin Texas. We live in Round Rock! I have been searching

for someone in my area to meet. My daughter has poly jra as well. We drive 3

hours to the ish Rite Hospital in Dallas. I look forward to hearing more

from you. And my prayers are with you as well as all the kiddo's on this list!

Summer-Gabi 7 poly

thundercatsmom <lumineri@...> wrote:

Hello,

I joined the group yesterday. I was very excited to find it! My son,

Logan (5 years old), was diagnosed with severe poly JRA the week

before Christmas. I've been up and down emotionally in the past

month, but thought I'd come to terms. Reading some of your posts

brought a lot of that back to me. I think I'm still shocked and

haven't accepted that my beautiful son has this nasty disease that has

the potential to cripple him. We live in Austin, TX and his doctor is

in Houston (almost a 4 hour drive), so I feel very much alone up here.

I know people mean well, but I just don't feel like they can truly

understand how I feel when their children aren't taking a handful of

pills everyday and a chemo drug every week for something that may or

may not get better. So, although I've upset myself once again, I

would like to say 'THANK YOU' to this group and I'm so happy to have

found all of you.

Jerry

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

[Guest guest]

Hi Jerry,

You are not alone anymore.We are all here by your side in spirit.

The beginning is so hard.The worst not knowing what is to come and thinking

your child will never get better and will always be in pain.The good news is

for most and with some time and trial and error with meds things do get better.

You have come to a great place for support.We are like one,big family that is

here for everyone.

Vent away and ask any question you want.We have all been there and done that

and unlike the general population,we do understand.

Hugs to Logan

Becki and 6 systemic

[Guest guest]

Welcome Jerry

Which doc do you see in Houston? We used to see Barry Myones when we lived

in Corpus. It was a hike for us, too, but definitely worth it! The quality

of care at Texas Children's was excellent!

Hang in there and give the meds time. Although this is often a roller

coaster ride, you will be absolutely amazed when you see the meds kick in

and Logan starts feeling better.

Liz (, 13, poly)

New Member

Hello,

I joined the group yesterday. I was very excited to find it! My son,

Logan (5 years old), was diagnosed with severe poly JRA the week

before Christmas. I've been up and down emotionally in the past

month, but thought I'd come to terms. Reading some of your posts

brought a lot of that back to me. I think I'm still shocked and

haven't accepted that my beautiful son has this nasty disease that has

the potential to cripple him. We live in Austin, TX and his doctor is

in Houston (almost a 4 hour drive), so I feel very much alone up here.

I know people mean well, but I just don't feel like they can truly

understand how I feel when their children aren't taking a handful of

pills everyday and a chemo drug every week for something that may or

may not get better. So, although I've upset myself once again, I

would like to say 'THANK YOU' to this group and I'm so happy to have

found all of you.

Jerry

_____

[Guest guest]

Hi Jerry. Welcome to the group. I am soo sorry to hear about little Logan.

It is always sad to hear when another one of our little angels gets this

horrible beast. Please know that this list is AMAZING! It is so caring,

generous, helpful, kind, etc. etc. You will always find an ear to vent to, a

shoulder to cry on, and a brain to pick! Trust me when I say this, this list

will become your biggest confidant!

Don't be afraid of this disease. Instead, attack it and conquer it.

Nowadays, you don't need to be as fearful about the crippling effects of

years ago. They have made so many advances medically and many of our

severely affected children live very close to normal lives. The important

thing is to be comfortable with your doctor and have one that's aggressive.

Good luck to you and Logan. Please keep us updated on his progress and know

that we are all praying for him!

Alia and Caroline, age 3, poly and uveitis

New Member

Hello,

I joined the group yesterday. I was very excited to find it! My son,

Logan (5 years old), was diagnosed with severe poly JRA the week

before Christmas. I've been up and down emotionally in the past

month, but thought I'd come to terms. Reading some of your posts

brought a lot of that back to me. I think I'm still shocked and

haven't accepted that my beautiful son has this nasty disease that has

the potential to cripple him. We live in Austin, TX and his doctor is

in Houston (almost a 4 hour drive), so I feel very much alone up here.

I know people mean well, but I just don't feel like they can truly

understand how I feel when their children aren't taking a handful of

pills everyday and a chemo drug every week for something that may or

may not get better. So, although I've upset myself once again, I

would like to say 'THANK YOU' to this group and I'm so happy to have

found all of you.

Jerry

_____

[Guest guest]

WOW! I'm actually in Cedar Park. I would love to get together.

Logan has 2 older sisters (7 & 8) that love to make new friends. I

found another mom through a friend who's daughter has JRA (she's 12

now). We've exchanged emails, but haven't met. We should definitely

get together ASAP. How exciting to find someone so close!

Jerry - Logan 5 poly

>

>

> Hello,

> I joined the group yesterday. I was very excited to find it! My son,

> Logan (5 years old), was diagnosed with severe poly JRA the week

> before Christmas. I've been up and down emotionally in the past

> month, but t

hought I'd come to terms. Reading some of your posts

> brought a lot of that back to me. I think I'm still shocked and

> haven't accepted that my beautiful son has this nasty disease that has

> the potential to cripple him. We live in Austin, TX and his doctor is

> in Houston (almost a 4 hour drive), so I feel very much alone up here.

> I know people mean well, but I just don't feel like they can truly

> understand how I feel when their children aren't taking a handful of

> pills everyday and a chemo drug every week for something that may or

> may not get better. So, although I've upset myself once again, I

> would like to say 'THANK YOU' to this group and I'm so happy to have

> found all of you.

>

> Jerry

>

>

>

>

>

>

>

>

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

>

[Guest guest]

Thank you. Knowing there are others out there certainly helps. I'm

generally not daunted by medical problems. I trust in the doctors,

gather information and just deal with it. Logan, for now, just

accepts it and is very good about taking his medicines. Which sure

makes my life easier! Logan had this for several years before he was

diagnosed and began treatment. His doctor is treating it

aggressively, but also tells me she can't undo the damage that has

already been done. It is that damage that I worry about. Along with

the guilt of not pressuring the doctors more. But that is in the past

and I can't undo it, so we'll just go on from here and do the best we can.

Jerry - Logan 5 poly

> Jerry:

> Welcome to the group. You have found a wonderful source of support.

> WIth your son so newly diagnosed, it is very understandable that you are

> still quite upset. It gets better. You will also find that you will have

> emotional setbacks, also understandable, when all of a sudden, when you

> are used to this unusual disease being a normal thing in your life now,

> that it will hit you that it shouldn't be this way. We all go through

> this. But do give yourself a break and allow yourself to grieve that

your

> child has this illness.

> On the other hand, in this group, you will find much hope!! There are

> many new drugs out on the horizon, as well as some being used currently,

> and I would say a good portion of the children with JRA are having

pretty

> good results. They have hope of avoiding the severe joint damage. Most

> rheumatologists are treating aggressively and are more aware of the fact

> that the sooner they can get a child controlled, the better off they

will

> be.

> My son couldn't walk when first diagnosed, and he is doing much better

> now. With all the new drugs in development, we are very hopeful for his

> future.

> and Rob 15 Spondy

>

> On Wed, 02 Feb 2005 14:18:10 -0000 " thundercatsmom "

> <lumineri@r...> writes:

>

>

> Hello,

> I joined the group yesterday. I was very excited to find it! My son,

> Logan (5 years old), was diagnosed with severe poly JRA the week

> before Christmas. I've been up and down emotionally in the past

> month, but thought I'd come to terms. Reading some of your posts

> brought a lot of that back to me. I think I'm still shocked and

> haven't accepted that my beautiful son has this nasty disease that has

> the potential to cripple him. We live in Austin, TX and his doctor is

> in Houston (almost a 4 hour drive), so I feel very much alone up here.

> I know people mean well, but I just don't feel like they can truly

> understand how I feel when their children aren't taking a handful of

> pills everyday and a chemo drug every week for something that may or

> may not get better. So, although I've upset myself once again, I

> would like to say 'THANK YOU' to this group and I'm so happy to have

> found all of you.

>

> Jerry

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you!

Jerry - Logan 5 poly

<feels luvved and hugged>

> Hi Jerry,

> I am on my way to bed, but wanted to wish you a quick welcome to

our

> little corner of the world.........even though i wish none of us

had to meet

> because of this disease, i am so thankful everyday for the friends i

have made

> over the years on this list........any questions just holler, there

are plenty

> of us here more than likely having gone thru what you are asking about.

>

> Luv and hugs,

> Aj and Holly 11yrs (diagnosed 9/94)

>

>

>

[Guest guest]

Jerry - Please try not to feel guilt. I know there are SEVERAL children on

this list that went years before they were diagnosed. The important thing is

that Logan now has the care he needs.

What medicines is he on??

Alia and Caroline, age 3, poly and uveitis

Re: New Member

Thank you. Knowing there are others out there certainly helps. I'm

generally not daunted by medical problems. I trust in the doctors,

gather information and just deal with it. Logan, for now, just

accepts it and is very good about taking his medicines. Which sure

makes my life easier! Logan had this for several years before he was

diagnosed and began treatment. His doctor is treating it

aggressively, but also tells me she can't undo the damage that has

already been done. It is that damage that I worry about. Along with

the guilt of not pressuring the doctors more. But that is in the past

and I can't undo it, so we'll just go on from here and do the best we can.

Jerry - Logan 5 poly

> Jerry:

> Welcome to the group. You have found a wonderful source of support.

> WIth your son so newly diagnosed, it is very understandable that you are

> still quite upset. It gets better. You will also find that you will have

> emotional setbacks, also understandable, when all of a sudden, when you

> are used to this unusual disease being a normal thing in your life now,

> that it will hit you that it shouldn't be this way. We all go through

> this. But do give yourself a break and allow yourself to grieve that

your

> child has this illness.

> On the other hand, in this group, you will find much hope!! There are

> many new drugs out on the horizon, as well as some being used currently,

> and I would say a good portion of the children with JRA are having

pretty

> good results. They have hope of avoiding the severe joint damage. Most

> rheumatologists are treating aggressively and are more aware of the fact

> that the sooner they can get a child controlled, the better off they

will

> be.

> My son couldn't walk when first diagnosed, and he is doing much better

> now. With all the new drugs in development, we are very hopeful for his

> future.

> and Rob 15 Spondy

>

> On Wed, 02 Feb 2005 14:18:10 -0000 " thundercatsmom "

> <lumineri@r...> writes:

>

>

> Hello,

> I joined the group yesterday. I was very excited to find it! My son,

> Logan (5 years old), was diagnosed with severe poly JRA the week

> before Christmas. I've been up and down emotionally in the past

> month, but thought I'd come to terms. Reading some of your posts

> brought a lot of that back to me. I think I'm still shocked and

> haven't accepted that my beautiful son has this nasty disease that has

> the potential to cripple him. We live in Austin, TX and his doctor is

> in Houston (almost a 4 hour drive), so I feel very much alone up here.

> I know people mean well, but I just don't feel like they can truly

> understand how I feel when their children aren't taking a handful of

> pills everyday and a chemo drug every week for something that may or

> may not get better. So, although I've upset myself once again, I

> would like to say 'THANK YOU' to this group and I'm so happy to have

> found all of you.

>

> Jerry

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I do feel fortunate to have found this. Logan has already responded

to his medication. My once quiet, calm boy has turned into a bouncing

ball of energy! He's discovered that now he can snap his fingers and

he drives me nuts sometimes. He'll be talking to me at 100 words per

second, snapping his fingers and bouncing on his toes. I tell him he

makes me all jittery too when he does that. He just laughs and snaps

and bounces. It's good to see him feeling better, but geez! There

are days I'd love to take that medicine away!

>

> Jerry,

>

> You are very fortunate to have found this group so quickly after

> diagnosis and I'm sure you'll feel better about your son's JRA

> sooner rather than later because of that.

>

> There are others in TX on this list. Go to the site on the

> page, look in the FILES database and you can find the list of

> members on this list. I know one of them has also made mention of

> trying to get people in various TX cities together to meet face to

> face. I know TX is a large state, but I'm sure I remember people

> being from Austin.

>

> Your comment about the crippling aspect of this disease.....In

> today's world and knowledge of treatment and new biologic response

> modifier drugs, chances that kids today will be crippled are slim.

> There are certainly hard cases to crack, and many of them are on

> this . But the majority of kids will ultimately find some

> level of comfort and normalcy, in time. The key is, time. It can

> take a while to find the right meds., right combination of meds,

> right doses, etc. to gain " medicated control " . After a while of

> that, without any setbacks, it is possible to wean off some drugs

> and maybe even all, for some kids.

>

> I'm not minimizing the disease by any means. It is a serious dragon

> to deal with. There are lots of truly trying times. But there are

> a lot of success stories out there as well.

>

> Education about JRA is one of your best friends, especially early

> on. Keep reading and posting here and you'll learn a ton. Welcome

> to a wonderful place to be, if you have to.

>

> Stacia and Hunter 8 systemic, iritis

[Guest guest]

Right now he's on prelone and folic acid once a day, ibuprofen 3 times

a day and methotrexate once a week. I am overcoming the guilt, but it

rears it's ugly head on occasion.

Jerry - Logan 5 poly

> > Jerry:

> > Welcome to the group. You have found a wonderful source of support.

> > WIth your son so newly diagnosed, it is very understandable that

you are

> > still quite upset. It gets better. You will also find that you

will have

> > emotional setbacks, also understandable, when all of a sudden,

when you

> > are used to this unusual disease being a normal thing in your life

now,

> > that it will hit you that it shouldn't be this way. We all go through

> > this. But do give yourself a break and allow yourself to grieve that

> your

> > child has this illness.

> > On the other hand, in this group, you will find much hope!! There are

> > many new drugs out on the horizon, as well as some being used

currently,

> > and I would say a good portion of the children with JRA are having

> pretty

> > good results. They have hope of avoiding the severe joint damage. Most

> > rheumatologists are treating aggressively and are more aware of

the fact

> > that the sooner they can get a child controlled, the better off they

> will

> > be.

> > My son couldn't walk when first diagnosed, and he is doing much better

> > now. With all the new drugs in development, we are very hopeful

for his

> > future.

> > and Rob 15 Spondy

> >

> > On Wed, 02 Feb 2005 14:18:10 -0000 " thundercatsmom "

> > <lumineri@r...> writes:

> >

> >

> > Hello,

> > I joined the group yesterday. I was very excited to find it! My son,

> > Logan (5 years old), was diagnosed with severe poly JRA the week

> > before Christmas. I've been up and down emotionally in the past

> > month, but thought I'd come to terms. Reading some of your posts

> > brought a lot of that back to me. I think I'm still shocked and

> > haven't accepted that my beautiful son has this nasty disease that has

> > the potential to cripple him. We live in Austin, TX and his doctor is

> > in Houston (almost a 4 hour drive), so I feel very much alone up here.

> > I know people mean well, but I just don't feel like they can truly

> > understand how I feel when their children aren't taking a handful of

> > pills everyday and a chemo drug every week for something that may or

> > may not get better. So, although I've upset myself once again, I

> > would like to say 'THANK YOU' to this group and I'm so happy to have

> > found all of you.

> >

> > Jerry

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Jerry,

Welcome! There isn't a person here that hasn't felt the same emotions

you are feeling. I don't know that they every go away, you just get in

more control of them. This board is a great source of information, as

well as support! Some people you may never meet face to face, but know

that they think of you and YOUR child.

This is an amazing group of people who have delt with this disease for a

few short weeks to years. There isn't a dumb question out there...keep

asking...because you are your child's advocate for this disease, and you

will help them the most! You will hear numerous references to the AJAO

conference in July. If you can all afford to go, try to attend. Your

eyes will open up to the great marvels of modern medicine, and you will

find you are not alone in this struggle. My daughter was diagnosed 2

years ago. We have the good with the bad, but she is a normal kid. She

fights with her sisters, she has lots of friends, and is a good student,

she participates in sport activities...it is just she has to have a shot

to make her feel better.

There are lots of hurdles you will over come, but take them one day at a

time.

and Allie (8poly)

________________________________

From: thundercatsmom [mailto:lumineri@...]

Sent: Thursday, February 03, 2005 8:53 AM

Subject: Re: New Member

Oh, goodness. She's so young. I appreciate the support I've found

here already.

Jerry - Logan 5 poly

> >

> >

> > Hello,

> > I joined the group yesterday. I was very excited to find it! My

> son,

> > Logan (5 years old), was diagnosed with severe poly JRA the week

> > before Christmas. I've been up and down emotionally in the past

> > month, but thought I'd come to terms. Reading some of your posts

> > brought a lot of that back to me. I think I'm still shocked and

> > haven't accepted that my beautiful son has this nasty disease that

> has

> > the potential to cripple him. We live in Austin, TX and his doctor

> is

> > in Houston (almost a 4 hour drive), so I feel very much alone up

> here.

> > I know people mean well, but I just don't feel like they can truly

> > understand how I feel when their children aren't taking a handful of

> > pills everyday and a chemo drug every week for something that may or

> > may not get better. So, although I've upset myself once again, I

> > would like to say 'THANK YOU' to this group and I'm so happy to have

> > found all of you.

> >

> > Jerry

[Guest guest]

Welcome to the group Jerry. Believe me, we all feel the same as you

about others not really understanding it. That is why this group has

been such a lifesaver for me. People here understand what even my

closest friends do not. I have come here to vent, cry and share my son's

successes with people who are going through the same things as we are.

You will learn so much here from the most arthritis knowledgeable people

I know. We are always learning something new from each other. Once

again, welcome and come back often to share. That is what we are here

for. Michele (17, pauci & spondy)

New Member

Hello,

I joined the group yesterday. I was very excited to find it! My son,

Logan (5 years old), was diagnosed with severe poly JRA the week

before Christmas. I've been up and down emotionally in the past

month, but thought I'd come to terms. Reading some of your posts

brought a lot of that back to me. I think I'm still shocked and

haven't accepted that my beautiful son has this nasty disease that has

the potential to cripple him. We live in Austin, TX and his doctor is

in Houston (almost a 4 hour drive), so I feel very much alone up here.

I know people mean well, but I just don't feel like they can truly

understand how I feel when their children aren't taking a handful of

pills everyday and a chemo drug every week for something that may or

may not get better. So, although I've upset myself once again, I

would like to say 'THANK YOU' to this group and I'm so happy to have

found all of you.

Jerry

[Guest guest]

Jerry,

I'm with you. One day my son was playing soccer. He was the fastest

on the team. He could actually play defense, cheat on offense and

run back and defend his goal. And, in an instant..our life has

changed. He couldn't walk, high fevers for 7 weeks, 4 weeks at Duke

Hosp. Now, we are 3 months into it and life has improved. He's not

all better...it hurts him to walk the stairs. He's puffy from the

steroids, distended belly is coming down..whew. So, I'm in pain the

way you are... thinking we were robbed of our sons normal life. But,

I still have hope...he'll beat this thing as he is a tough kid and

the strongest in our family!

Good Luck to you & Logan...it will get better!

, Dad of Mitch Systemic 6 yo.

> > >

> > >

> > > Hello,

> > > I joined the group yesterday. I was very excited to find it!

My

> > son,

> > > Logan (5 years old), was diagnosed with severe poly JRA the

week

> > > before Christmas. I've been up and down emotionally in the

past

> > > month, but thought I'd come to terms. Reading some of your

posts

> > > brought a lot of that back to me. I think I'm still shocked

and

> > > haven't accepted that my beautiful son has this nasty disease

that

> > has

> > > the potential to cripple him. We live in Austin, TX and his

doctor

> > is

> > > in Houston (almost a 4 hour drive), so I feel very much alone

up

> > here.

> > > I know people mean well, but I just don't feel like they can

truly

> > > understand how I feel when their children aren't taking a

handful of

> > > pills everyday and a chemo drug every week for something that

may or

> > > may not get better. So, although I've upset myself once

again, I

> > > would like to say 'THANK YOU' to this group and I'm so happy

to have

> > > found all of you.

> > >

> > > Jerry

>

>

>

>

>

>

[Guest guest]

Jerry, Welcome to the group and it is indeed a group of very

compassionate and truely understanding folks.

These are people who can relate to your feelings and through their own

experices with their childrens plight, can offer sound guiling advise, or

just an ear and cyber shoulder to lean on.

I'm known around these here parts as, Rusty O " Limbs, also called Uncle

Rusty at times. I've been living with jra for 37 years this coming July

when i was diagnosed at the age of 13. I guess one might say that my jra

is

systemic. I just say it's 'Arthritis!' and a pain in the dairy aire!

I understand the drug cocktail, and I wish I had a dollar for every pill

i've ever had to swallow, in the course of treating this crud!

This is indeed a live altering disease, which changes the lifes pathway

before your son, as he grows into a man. It puts roadblocks before us,

causes a slow down in our lifes highway, even creating a traffic jam at

times.

Others around us view it as a crippling condition, though I would have

them know, I'm not crippled because of it, Societal views and

perceptions is the crippling factor as far as this disease goes.

I offer to every parent of a jra kid one piece of advise, based on my own

lifes experiences.

Let them push them selfs to their own physical limits, encourage them to

go for what they what to accomplish in life, for they are and do become

the best judge of their limitations, as you'll see from this group of

great parents have with their kiddo's!

Please take no ofense at anything i've wrote here, for it is only meant

as encouragement and nothing more.

My self, I found this list, this group, this FAMILY of very loving folks

just 4 years ago this coming May and now, I don't know what I'd do

without them in my life. I have reaped so much love and support and

understanding. from sharing with everyone here.

I've learned more in the past four years about this disease, than i ever

learned in the 33 years of living with jra, before finding the group.

They are wonderful, teacher's, mentor's and role model's! ESPECIALLY

these kids!

I hold you, Logan and family in my thoughts and prayes, knowing that he

will, make it through with his family by his side.

Welcome to our cyber family, right Georgina! she the mama of this

group...

Hugs, Prayers, Love to All...

Rusty

[Guest guest]

Hi Jerry and welcome.

JRA is a tough diagnosis for a parent to hear and if you're anything like me

you have scared yourself silly by reading all of the available information on

the disease. You have come to the right place. There is nothing quite like

hearing about the experiences of other parents in the same type of situation.

I personally don't think I stopped crying but for when my daughter Riley was

looking directly at me for at least the first month. The people in this group

held me up. Riley had a tough start and I was terrified of how this disease

would affect her growing body. We have been blessed with a great rheumy and

the knowledge and experience of the people in this group and Riley was in

remission for about a year before flaring again a few months ago. We are

working

hard to get her symptom free again. The odds are in Logan's favor that they

will find the right medications to control his arthritis. I will keep Logan and

you in my thoughts and prayers as will so many others here.

xoxo,

Ellie and Riley 7 poly

[Guest guest]

I've stopped reading. I went through all the literature the

rheumatologist gave me and read " Parenting a Child with Arthritis. "

As I've had questions or concerns, I've referred back to those sources

as well as the internet, but I'm not actively seeking more stuff to

read. I'm glad I now have this new source of even more information.

I totally relate to your not crying only when Riley was looking at

you! Logan's doctor is in Houston (3.5 hour trip). When we got his

diagnosis, his doctor remarked that I looked like a deer in the

headlights. Which is exactly how I felt. We loaded up in the car and

started the drive home. That was the longest trip I think I've ever

made. Luckily I had my fiance with me to do the driving. Logan had

no idea anything was wrong and it took everything I had to put on a

happy face for him. We dropped him off at his dad's and by the time

we got to our house, I was a mess! It took about a week before I

could even talk to people about it. I've gotten past that now and

have a more positive outlook these last few weeks.

Jerry-Logan 5 poly

> Hi Jerry and welcome.

> JRA is a tough diagnosis for a parent to hear and if you're anything

like me

> you have scared yourself silly by reading all of the available

information on

> the disease. You have come to the right place. There is nothing

quite like

> hearing about the experiences of other parents in the same type of

situation.

> I personally don't think I stopped crying but for when my daughter

Riley was

> looking directly at me for at least the first month. The people in

this group

> held me up. Riley had a tough start and I was terrified of how this

disease

> would affect her growing body. We have been blessed with a great

rheumy and

> the knowledge and experience of the people in this group and Riley

was in

> remission for about a year before flaring again a few months ago.

We are working

> hard to get her symptom free again. The odds are in Logan's favor

that they

> will find the right medications to control his arthritis. I will

keep Logan and

> you in my thoughts and prayers as will so many others here.

> xoxo,

> Ellie and Riley 7 poly

>

>

>

[Guest guest]

Hi Jerry,

I totally relate to your feeling like a deer in the headlights! When we

finally got a diagnosis from a pediatric orthopedist who had little to no

bedside

manner, he snapped at me the she had jra and that she was going to lose the

use of her muscle in her left leg if she didn't exercise it. How was I to know?

My instinct told me if it hurts for your baby to walk you carry her! So I

started to get all hot and lightheaded and he yelled for the nurse to bring me

smelling salts, what a nightmare. All the while they are laying me down on

the examination table and I'm smiling through tears at my 4 year old daughter

saying " Mommy's turn " ! She looked a bit confused.

xoxo,

Ellie and Riley 7 poly

In a message dated 2/6/2005 6:59:48 AM Pacific Standard Time,

lumineri@... writes:

> I totally relate to your not crying only when Riley was looking at

> you! Logan's doctor is in Houston (3.5 hour trip). When we got his

> diagnosis, his doctor remarked that I looked like a deer in the

> headlights. Which is exactly how I felt.

[Guest guest]

Hi Cheryl,

I make my kefir with instant dry powdered milk (no boiling required

because the milk is dry). I add 2 cups of instant milk to 3.5 cups of

distilled water. This yields 1 qt. of thick, creamy kefir. Works for

me. Hope this helps.

In health,

>

> Hi,

> I live in Northeast Kentucky on a small farm and I

> have recently became interested in Kefir & Kombucha.

>

> I currently have my first batch of Kombucha tea brewing

> and I have been trying to get a more yogurt consistency

> to my kefir.

>

> So far I am also interested in kefir kraut, cheeses & water kefir.

>

>

> Cheryl C-Ky

>

> ----------

>

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.300 / Virus Database: 265.8.7 - Release Date: 2/10/2005

>

>

>

[Guest guest]

Hey & ,

Thanks!

My first batch of Kombucha tea was a success. So I started another batch.

Is there a chance of drinking too much too soon, LOL?

Either when I have extra milk grains or come across some water grains I want to

try that.

And I have a small cheese log curing.

I want to start kefir kraut & a batch of kefir butter next week. I

suppose that the milk drained from the butter can be used as a

buttermilk substitute in recipes? Does anyone know if you substitute

cup per cup ie: 2 cups milk = 2 cups kefir?

I couldn't wait to try your recipe , it sounds like what I am looking for.

I'll let you know as soon as it's done.

Smoothies,drinks are good but we like the thicker yogurt texture to eat

with fresh or frozen fruit. The two boys and I could eat a quart of yogurt a

day. LOL!

I am still reading the archives and taking notes but in a few months I will have

2 goats freshened so I hope to be able to make more cheeses etc. Yummy! I can

hardly wait.

Cheryl C-Ky

----------

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.300 / Virus Database: 265.8.7 - Release Date: 2/10/2005

[Guest guest]

Hi Cheryl,

Fyi...you can also use the dry instant milk to thicken up whatever

milk you're currently using. I just like using 100% dry milk as I

don't have to lug jugs of milk home, take up room in the fridge,

hurry to drink it before it spoils, and because it's so cheap. I get

mine at Sam's and at Aldi. Probably $7 per 5 gallon box.

But if I had a goat, wow, I'd probably do both. Or just drink the

goat milk raw! I live in the city and raw milk of any sort is very

difficult to get. Good luck!

> Hey & ,

> Thanks!

> My first batch of Kombucha tea was a success. So I started another

batch.

> Is there a chance of drinking too much too soon, LOL?

>

> Either when I have extra milk grains or come across some water

grains I want to try that.

>

> And I have a small cheese log curing.

>

> I want to start kefir kraut & a batch of kefir butter next week. I

> suppose that the milk drained from the butter can be used as a

> buttermilk substitute in recipes? Does anyone know if you substitute

> cup per cup ie: 2 cups milk = 2 cups kefir?

>

> I couldn't wait to try your recipe , it sounds like what I am

looking for. I'll let you know as soon as it's done.

> Smoothies,drinks are good but we like the thicker yogurt texture to

eat

> with fresh or frozen fruit. The two boys and I could eat a quart of

yogurt a day. LOL!

>

> I am still reading the archives and taking notes but in a few

months I will have 2 goats freshened so I hope to be able to make

more cheeses etc. Yummy! I can hardly wait.

>

> Cheryl C-Ky

>

> ----------

>

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.300 / Virus Database: 265.8.7 - Release Date: 2/10/2005

>

>

>

[Guest guest]

>

>

> Hi!

>

> I am new here. My 9 1/2 yr old daughter, , has complained of

> pain in her legs for years. Her last doctor would just sweep it

> under the rug. About 16 months ago, by chance, we learned that a

> possible cause of her pain was flat feet. This prompted me to

change

> doctors. We also got inserts for her shoes.

>

> The inserts seem to help some, then right before this past

> Thanksgiving she started having severe pain in her left

ankle/heel.

> I took her in to her new doctor and she recommended some things to

> try. These things didn't work and informed me that at the

same

> time as the ankle/heel was hurting she was having pain in her hips

> and knees. So the next time I took her in to the new doctor, I

> informed her that the pain in the ankle/heel had not improved,

that

> had additional pain , that 's knees often seemed to

be

> swollen and I pointed out that 's lower left leg looked

bowed.

> Based on these she decided to test for rheumatoid factor (I

> still don't have the results from this) and to refer her to

Shiner's

> Hospital for Children, Northern California, which suprised me, for

> further diagnosis and treatment. Shriner's has accepted and

her

> first appointment is April 19th.

>

> Since 's doctor refered her to Shriner's is hiding a lot

> less of her pain. I have since learned from her that she also has

> pain in her left wrist and fingers. One time when she informed me

of

> the pain in her wrist, the wrist was swollen, red and warm.

Another

> time when she informed me of pain in her pinkie, it was swollen,

red

> and bent towards the other fingers.

>

> Beth

Hi Beth ,I'm new to this whole thing too , but your post caught my

eye because of the age of your daughter .My " Belle " is 10 and having

a bit of am ajustment to all of the special attention that goes

along with a dx of JRA.I have found that the people on this board

know there stuff ! Although it dosent sound like we are dealing with

the same sort of symptoms we are still going through the stress of

the condition . If i can lend a shoulder at ant time ... its here .

Teri

[Guest guest]

Beth,

I am glad that you finally have an idea of what might be causing the pain.

Shriners Hospitals are great from what I hear. I am currently trying to get my

daughter ( who was diagnosed in 2002) into the one in Springfield Mass. If

there is pain and swelling in 5 or more joints she will probably be diagnosed as

Polyarticular JRA. That is what my daughter has. There are great meds out

there these days to take care of the joints and stop the disease process.. I

wish you the best of luck and welcome to the list..

Emilie mom to age 5, Polyarticular JRA

New Member

Hi!

I am new here. My 9 1/2 yr old daughter, , has complained of

pain in her legs for years. Her last doctor would just sweep it

under the rug. About 16 months ago, by chance, we learned that a

possible cause of her pain was flat feet. This prompted me to change

doctors. We also got inserts for her shoes.

The inserts seem to help some, then right before this past

Thanksgiving she started having severe pain in her left ankle/heel.

I took her in to her new doctor and she recommended some things to

try. These things didn't work and informed me that at the same

time as the ankle/heel was hurting she was having pain in her hips

and knees. So the next time I took her in to the new doctor, I

informed her that the pain in the ankle/heel had not improved, that

had additional pain , that 's knees often seemed to be

swollen and I pointed out that 's lower left leg looked bowed.

Based on these she decided to test for rheumatoid factor (I

still don't have the results from this) and to refer her to Shiner's

Hospital for Children, Northern California, which suprised me, for

further diagnosis and treatment. Shriner's has accepted and her

first appointment is April 19th.

Since 's doctor refered her to Shriner's is hiding a lot

less of her pain. I have since learned from her that she also has

pain in her left wrist and fingers. One time when she informed me of

the pain in her wrist, the wrist was swollen, red and warm. Another

time when she informed me of pain in her pinkie, it was swollen, red

and bent towards the other fingers.

Beth

[Guest guest]

Emilie,

Polyarticular JRA is a posibility. However, I suspect that has

Juvenile Spondyloarthritis (JSpA). Her symptoms are consistent with

this, esp her heel pain. In addition, her father has spondylitis

associated with Crohn's disease, which could mean he has the HLA-B27

gene and passed it on to her.

Beth

> Beth,

>

> I am glad that you finally have an idea of what might be causing

the pain. Shriners Hospitals are great from what I hear. I am

currently trying to get my daughter ( who was diagnosed in 2002)

into the one in Springfield Mass. If there is pain and swelling in

5 or more joints she will probably be diagnosed as Polyarticular

JRA. That is what my daughter has. There are great meds out there

these days to take care of the joints and stop the disease process..

I wish you the best of luck and welcome to the list..

> Emilie mom to age 5, Polyarticular JRA

> New Member

>

>

>

>

> Hi!

>

> I am new here. My 9 1/2 yr old daughter, , has complained

of

> pain in her legs for years. Her last doctor would just sweep it

> under the rug. About 16 months ago, by chance, we learned that

a

> possible cause of her pain was flat feet. This prompted me to

change

> doctors. We also got inserts for her shoes.

>

> The inserts seem to help some, then right before this past

> Thanksgiving she started having severe pain in her left

ankle/heel.

> I took her in to her new doctor and she recommended some things

to

> try. These things didn't work and informed me that at the

same

> time as the ankle/heel was hurting she was having pain in her

hips

> and knees. So the next time I took her in to the new doctor, I

> informed her that the pain in the ankle/heel had not improved,

that

> had additional pain , that 's knees often seemed to

be

> swollen and I pointed out that 's lower left leg looked

bowed.

> Based on these she decided to test for rheumatoid factor (I

> still don't have the results from this) and to refer her to

Shiner's

> Hospital for Children, Northern California, which suprised me,

for

> further diagnosis and treatment. Shriner's has accepted

and her

> first appointment is April 19th.

>

> Since 's doctor refered her to Shriner's is hiding a

lot

> less of her pain. I have since learned from her that she also

has

> pain in her left wrist and fingers. One time when she informed

me of

> the pain in her wrist, the wrist was swollen, red and warm.

Another

> time when she informed me of pain in her pinkie, it was swollen,

red

> and bent towards the other fingers.

>

> Beth

>

>

>

>

>

>

>

>

>

[Guest guest]

I would definitely get a second opinion. You need a rheumatologist who is

active in your child's treatment and is willing to tell you everything and be

really involved in getting your daughter the best treatment. I hear Duke is

really good.

Lots of LOve Poly JRA and Spondy, 20

[Guest guest]

Hi -

I have a 2 1/2 year old who also has pauciarticular JRA. She was diagnosed last

January when she was 15 months. Hers started out the same way as your daughters.

She had it in one knee at the time. She was on naproxen (Prescription dose of

Aleve) for af few months. It did nothing. She had a joint injection in May that

allowed her to learn how to walk. Physical therapy was critical for period of

time. She also wore a knee splint to help with the contracture that she had.

Basically, her knee was stuck in the bent position. Last summer she went into a

remission. It lasted until this January. She, too, has spread to both knees and

an ankle. I never noticed the ankle. The rhematologist did. Last night was the

first night she cried out about the ankle. Before it was always the knees that

hurt. She has been on tolmetin (another non-steroidal anti-inflamatory) for 6

weeks now. It has done nothing. It sounds like our girls are in the exact same

boat right now. We have an appt. on Friday with the Rheumatologist to see where

we go from here. Genevieve cries for hours each morning in pain and lately has

been completely unable to walk at all until lunch time. She also has a terrible

cold. SHe flares worse with each little virus or sinus infection she has. Make

sure she has her eyes checked for a related disease called uveitis or iritis.

Genevieve has this as well. It is currently under control but can be very

serious. The eye dr. needs to know she has JRA and should do a slit lamp test. I

found that a lot of eye drs. don't really know much about uveitis, so try to

find someone who is familiar with this. I feel sad that you don;t have a

supportive dr. That is absolutely essential, so if you can get that second

opinion, that would be great! You as her parent are her biggest advocate. If you

need to be pushy with the drs., go ahead and do just that. This is a great group

of people with a HUGE amount of knowledge. Don't be afraid to ask any questions.

Therese Z.

Genevieve 10/2/02

Pauci 1/04

Uveitis 1/04

New member

My 2 yr old daughter was diagnosed with JRA in January of this year.

It started out in her left knee, but is now in her right knee and

ankle. They have diagnosed her for the time being with

pauciauticular. She had steroid injections done on Feb 6 and thought

that would make a dramatic difference, it did for about 4 days and

since then it has gone into her ankle. she takes advil 4 times a

day, the most she can have in a 24 hr period. Her rheumatologist is

hard to get anything out of and had not scheduled any physical

therapy and when i kept reading about how important that was i

phoned him and had to speak with his nurse. she told me well that

can be set up with her pediatrician. she also said she was under the

impression that she was seeing the physical therapist when she goes

to Chapel Hill. I am very upset about all this happening to my once

happy, healthy little girl. I am confused about where to turn and

what to do. I am fixing to have them refer her to Duke for a second

opinion and to see if i can see someone who is more helpful in

educating me on this. i have tried to do research and have found

some helpful things, but i have lots of questions that should have

been answered already. Her present rheumatologist seems to have no

interest and acts like it is no big deal. well it is a very big deal

to me especially with her being so young and her sight can be

affected as well. I would appreciate any help and information any

one can provide for me. I am also trying to find a support group in

our area.I know have been long winded in writing this, but i need

all the help i can get!

Thanks to all who can help