Re: Abby

[Guest guest]

>From: " Bonnie " <block312@...>

>Reply-LifeLiftegroups

><LifeLiftegroups>

>Subject: Abby

>Date: Tue, 11 Apr 2000 11:19:21 -0400

>

Thanks Bonnie. I will.

Sincerely,

Abby

>HAPPY, HAPPY BIRTHDAY ABBY!!!!!!!!!!!! Have a really great day!!

>God bless, Bonnie

>**********************************************

>With God, ALL things are possible.

>**********************************************

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

>From: magzz1@...

>Reply-LifeLiftegroups

>LifeLiftegroups

>Subject: Abby

>Date: Wed, 12 Apr 2000 02:38:32 EDT

>

Hi Maggie,

Thank-you and everyone else who has sent me birthday greetings. I really

appreciate it. My husband, daughter, son, and my daughter's boyfriend and a

group of his friends showed up where I work with a cake my children had

baked. Right there in the store they all sang " Happy Birthday " to me. It

was great. I had a smile on my face all night long.

Sincerely,

Abby

>Dear Abby,

>

>I'm always so behind with the messages, unfortunately, but I wanted to wish

>you a very happy birthday!! Hope you enjoyed it!!

>

>Maggie

>

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

>You can win $1000!

>Time-limited offer. Enter today at:

>1/2864/1/_/_/_/955521518/

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

>

>

[Guest guest]

You're welcome, Abby!

It seems as though your family just made your day! You deserve it and that

smile!!

Maggie

[Guest guest]

Welcome, Christie. I'm Kathy, and my daughter, (who will be 2 in

October) was diagnosed at 18 months with polyarticular JRA. We too have been on

the same rollercoaster ride dealing with this disease. I'm glad you found this

list. It's been a tremendous help for me. I would suggest seeing a pediatric

rheumatologist if at all possible. We drive 2 hours to get to the nearest one,

but as I understand rheumatoid arthritis is different than JRA, and I also would

think a pediatric rheumy's office is just in general more equipped to deal with

kids. For example, all of the support staff in our rheumy's office are so great

with ...they know how to ease her fears and are typically people who WANT

to work with kids. I don't have a lot of specific advice to give you, I'll

leave that to the experts out there.....but just wanted to welcome you.

Kathy

mom to , 23 months, poly

and Luke 4-1/2

christiewillett <christiewillett@...> wrote:

Hi everyone,

I am so glad I found this list! My daughter Abby, who will be 2 on

Friday, was diagnosed with pauciarticular JRA affecting one knee the

beginning of the summer, and I have been on a roller coaster ride

ever since! I had JRA (? many joints involved) as a small child,

with my last flare in 3rd grade and no symptoms until I was

postpartum with my first child (Gracie, now 4). After having Abby

two years ago, I have found myself back in the cycle of flares and

remissions in one knee. My DH doesn't understand; he tells me I

need more exercise (!?) and in the midst of this new development my

then 18 month old daughter was diagnosed with JRA! Facing her JRA

diagnosis has meant facing parts of my childhood that have long been

buried, but this is the least of my worries. I struggle every day

with whether or not I am making the right choices with her health

care. Right now she is seeing a general rheumatologist (not a pedi)

and he has her on prescription strength Naproxen with pt to begin

two times a week. I don't know if I should insist on seeing a

pediatric specialist, but I do know she is still having a lot of

stiffness and falls often. It is heartbreaking to watch her hobble

around at the park and not be able to enjoy herself as much as kids

much younger than her. But she is so strong! She hardly cries about

it and continues to be the happy and sunny little girl she has

always been. Explaining to other moms has been hard; I now remember

the kinds of responses my own mom got when she talked with the

school/ other parents about my struggles. As moms who have walked

this way before, what are your opinions about pediatric vs. general

rheumatology?? Anyone else experiencing a second generation of JRA??

Christie in Massachusetts

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

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

[Guest guest]

Hi Christie,

I can't help you in regards to the second generation of the disease,

but I can comment on the ped rheumy. I think it is very important to

see a ped rheumy. You not only have to take into account the

arthritis, but also growth issues. Adults don't have that issue.

Also, please follow up with an eye doctor for your little girl. What

part of the country do you live in? Maybe, someone on the list is

near you and can suggest a ped rheumy.

My daughter is 17 now and has had the disease for 7 years. Her ped

rheumy has told us that he will see n forever, if that is what

we choose. That is what we want. Even though n will be 18 in

several months, she still has systemic JRA-even when she is 30. Her

ped rheumy knows her complicated history, has saved her life during a

complication, and we aren't planning on changing. Take care,

(n, 17, systemic-deep into the complicated college process)

On Sep 25, 2006, at 8:56 PM, christiewillett wrote:

> Hi everyone,

>

> I am so glad I found this list! My daughter Abby, who will be 2 on

> Friday, was diagnosed with pauciarticular JRA affecting one knee the

> beginning of the summer, and I have been on a roller coaster ride

> ever since! I had JRA (? many joints involved) as a small child,

> with my last flare in 3rd grade and no symptoms until I was

> postpartum with my first child (Gracie, now 4). After having Abby

> two years ago, I have found myself back in the cycle of flares and

> remissions in one knee. My DH doesn't understand; he tells me I

> need more exercise (!?) and in the midst of this new development my

> then 18 month old daughter was diagnosed with JRA! Facing her JRA

> diagnosis has meant facing parts of my childhood that have long been

> buried, but this is the least of my worries. I struggle every day

> with whether or not I am making the right choices with her health

> care. Right now she is seeing a general rheumatologist (not a pedi)

> and he has her on prescription strength Naproxen with pt to begin

> two times a week. I don't know if I should insist on seeing a

> pediatric specialist, but I do know she is still having a lot of

> stiffness and falls often. It is heartbreaking to watch her hobble

> around at the park and not be able to enjoy herself as much as kids

> much younger than her. But she is so strong! She hardly cries about

> it and continues to be the happy and sunny little girl she has

> always been. Explaining to other moms has been hard; I now remember

> the kinds of responses my own mom got when she talked with the

> school/ other parents about my struggles. As moms who have walked

> this way before, what are your opinions about pediatric vs. general

> rheumatology?? Anyone else experiencing a second generation of JRA??

>

> Christie in Massachusetts

>

>

>

[Guest guest]

Dear Christie,

Hi, and welcome to the list. My daughter, (now 9

years old) was diagnosed with pauci-articular JRA two

months before her second birthday. She also started

out having just one knee affected (now her arthritis

is well under control with medication, but her other

knee subsequently developed arthritis, and now her big

toe is also affected). I agree with the other moms

about the importance of taking your Abby to a

pediatric rheumatologist. I know that pediatric

rheumatologists are available in the Boston area---my

family and I attended an American Juvenile Arthritis

Organization (AJAO) conference in Boston in the summer

of 2001.

Did Abby's rheumatologist also mention that she would

need to have her eyes examined? (I know someone else

asked about that). For my daughter, , she

developed uveitis, and that's been her most difficult

battle (more so than her joints). When we left the

medical center after 's first appointment over

seven years ago, we left with a " script " for PT, blood

work, medication, and orders to make an appointment

with a pediatric ophthalmologist ASAP.

I remember being on the emotional rollercoaster that

you are currently on. And I remember giving myself

little lectures, because I knew that 's type of JA

was not the most severe, and she had a very mild case,

and this is not the worst thing in the world to

happen, but the diagnosis did change our life

drastically. I had never been to so many different

doctors and medical professionals in such a short

amount of time for one person! It did take me awhile,

but now that we are years down the road, we've

developed our " sea legs, " and we are used to lots of

doctors' visits and regular lab work, and regular

medication, and except for those things, life seems

relatively normal! (I want to empathize and validate

your feelings but also give you hope for a sort of

" normalcy " for the future!).

Have you seen a rheumatologist yourself, since you

seem to have a flare-up of symptoms? Do you take

anything?

Tammy in Pennsylvania (mom to , age 9, with

pauci-articular JA and uveitis)

http://www.geocities.com/tlzeigler/sJRA.html

--- christiewillett <christiewillett@...> wrote:

> Hi everyone,

>

> I am so glad I found this list! My daughter Abby,

> who will be 2 on

> Friday, was diagnosed with pauciarticular JRA

> affecting one knee the

> beginning of the summer, and I have been on a roller

> coaster ride

> ever since! I had JRA (? many joints involved) as a

> small child,

> with my last flare in 3rd grade and no symptoms

> until I was

> postpartum with my first child (Gracie, now 4).

> After having Abby

> two years ago, I have found myself back in the cycle

> of flares and

> remissions in one knee. My DH doesn't understand;

> he tells me I

> need more exercise (!?) and in the midst of this new

> development my

> then 18 month old daughter was diagnosed with JRA!

> Facing her JRA

> diagnosis has meant facing parts of my childhood

> that have long been

> buried, but this is the least of my worries. I

> struggle every day

> with whether or not I am making the right choices

> with her health

> care. Right now she is seeing a general

> rheumatologist (not a pedi)

> and he has her on prescription strength Naproxen

> with pt to begin

> two times a week. I don't know if I should insist

> on seeing a

> pediatric specialist, but I do know she is still

> having a lot of

> stiffness and falls often. It is heartbreaking to

> watch her hobble

> around at the park and not be able to enjoy herself

> as much as kids

> much younger than her. But she is so strong! She

> hardly cries about

> it and continues to be the happy and sunny little

> girl she has

> always been. Explaining to other moms has been

> hard; I now remember

> the kinds of responses my own mom got when she

> talked with the

> school/ other parents about my struggles. As moms

> who have walked

> this way before, what are your opinions about

> pediatric vs. general

> rheumatology?? Anyone else experiencing a second

> generation of JRA??

>

> Christie in Massachusetts

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Thank you Kathy, and Tammy for your kind responses! Abby has

already been checked by a pedi opthamologist for uveitis...and seen

twice by the general rheumy. Her pedi recommended him because he

had seen a few JRA patients in their practice, but I have been

questioning whether or not a pedi rheumy was more appropriate ever

since she was diagnosed. Thank you for your encouragement and

validation of my concerns! I guess as a mom of a child with JRA I

will have to grow a thicker skin and be more concerned about

advocating what is best for my child instead of worrying about

rocking the boat too much. I am so thankful that I found this

website as a resource for understanding all of the treatments and

their helpfulness from a parent's perspective (not just from a

general overview or a drug company's sales ads!); I feel like I will

be so much better equipped for Abby's next appointment. We are

about an hour and a half from Boston, but considering the fact that

her current rheumy is almost an hour away the distance certainly

isn't a factor in our decision!! Her current rheumy has been great

with her and has been totally forthright with all of her lab results

and what they exclude/what they shed light on. This is why I have

had such a hard time deciding whether or not to switch. But she is

SO little that I feel only a pedi can know the best course of

action; she is not just a miniature adult but still a baby so a lot

of the drugs and treatments may be risky for her!

As for my own JRA, I have seen my GP a few times with no real help.

My RH factor tests always come back negative (they always have, and

Abby's have as well), and no significant findings on xray make my

treatment low priority/management of pain in the GP's opinion.

Every time I experience a remission of symptoms, I stop taking the

NSAIDS and I guess ultimately I need to start fighting for myself

and get seen by a rheumy too.

Have other moms found the PT very helpful? I am eager to get her

seen to minimize any damage/ setbacks her current condition may be

causing and to strengthen the muscles needed to support her stiff

knee. Thank you for the encouragement about developing a new

sense of rhythm. Having a 2 year old and a 4 year old, life is

chaotic enough! I hope that we will figure things out over the next

few months and get on a slightly more predictable path (although I

know that JRA is notoriously unpredictable!!).

Thank you guys again! It's good not to feel so alone

Christie in Massachusetts

>

> > Hi everyone,

> >

> > I am so glad I found this list! My daughter Abby,

> > who will be 2 on

> > Friday, was diagnosed with pauciarticular JRA

> > affecting one knee the

> > beginning of the summer, and I have been on a roller

> > coaster ride

> > ever since! I had JRA (? many joints involved) as a

> > small child,

> > with my last flare in 3rd grade and no symptoms

> > until I was

> > postpartum with my first child (Gracie, now 4).

> > After having Abby

> > two years ago, I have found myself back in the cycle

> > of flares and

> > remissions in one knee. My DH doesn't understand;

> > he tells me I

> > need more exercise (!?) and in the midst of this new

> > development my

> > then 18 month old daughter was diagnosed with JRA!

> > Facing her JRA

> > diagnosis has meant facing parts of my childhood

> > that have long been

> > buried, but this is the least of my worries. I

> > struggle every day

> > with whether or not I am making the right choices

> > with her health

> > care. Right now she is seeing a general

> > rheumatologist (not a pedi)

> > and he has her on prescription strength Naproxen

> > with pt to begin

> > two times a week. I don't know if I should insist

> > on seeing a

> > pediatric specialist, but I do know she is still

> > having a lot of

> > stiffness and falls often. It is heartbreaking to

> > watch her hobble

> > around at the park and not be able to enjoy herself

> > as much as kids

> > much younger than her. But she is so strong! She

> > hardly cries about

> > it and continues to be the happy and sunny little

> > girl she has

> > always been. Explaining to other moms has been

> > hard; I now remember

> > the kinds of responses my own mom got when she

> > talked with the

> > school/ other parents about my struggles. As moms

> > who have walked

> > this way before, what are your opinions about

> > pediatric vs. general

> > rheumatology?? Anyone else experiencing a second

> > generation of JRA??

> >

> > Christie in Massachusetts

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Christie,

I totally know where you're coming from. I am (was?) one of those 'don't rock

the boat' people too. But since 's been diagnosed, I have had my share of

opportunities to practice boat rocking, and I'm actually getting pretty good at

doing so. ;o)

I have a 4 year old too.....if you're like me, you're probably exhausted so

even though it's hard...take time for yourself regularly...I don't practice what

I preach enough, but I try to do this to recharge for my kiddos!

Kathy

christiewillett <christiewillett@...> wrote:

Thank you Kathy, and Tammy for your kind responses! Abby has

already been checked by a pedi opthamologist for uveitis...and seen

twice by the general rheumy. Her pedi recommended him because he

had seen a few JRA patients in their practice, but I have been

questioning whether or not a pedi rheumy was more appropriate ever

since she was diagnosed. Thank you for your encouragement and

validation of my concerns! I guess as a mom of a child with JRA I

will have to grow a thicker skin and be more concerned about

advocating what is best for my child instead of worrying about

rocking the boat too much. I am so thankful that I found this

website as a resource for understanding all of the treatments and

their helpfulness from a parent's perspective (not just from a

general overview or a drug company's sales ads!); I feel like I will

be so much better equipped for Abby's next appointment. We are

about an hour and a half from Boston, but considering the fact that

her current rheumy is almost an hour away the distance certainly

isn't a factor in our decision!! Her current rheumy has been great

with her and has been totally forthright with all of her lab results

and what they exclude/what they shed light on. This is why I have

had such a hard time deciding whether or not to switch. But she is

SO little that I feel only a pedi can know the best course of

action; she is not just a miniature adult but still a baby so a lot

of the drugs and treatments may be risky for her!

As for my own JRA, I have seen my GP a few times with no real help.

My RH factor tests always come back negative (they always have, and

Abby's have as well), and no significant findings on xray make my

treatment low priority/management of pain in the GP's opinion.

Every time I experience a remission of symptoms, I stop taking the

NSAIDS and I guess ultimately I need to start fighting for myself

and get seen by a rheumy too.

Have other moms found the PT very helpful? I am eager to get her

seen to minimize any damage/ setbacks her current condition may be

causing and to strengthen the muscles needed to support her stiff

knee. Thank you for the encouragement about developing a new

sense of rhythm. Having a 2 year old and a 4 year old, life is

chaotic enough! I hope that we will figure things out over the next

few months and get on a slightly more predictable path (although I

know that JRA is notoriously unpredictable!!).

Thank you guys again! It's good not to feel so alone

Christie in Massachusetts

>

> > Hi everyone,

> >

> > I am so glad I found this list! My daughter Abby,

> > who will be 2 on

> > Friday, was diagnosed with pauciarticular JRA

> > affecting one knee the

> > beginning of the summer, and I have been on a roller

> > coaster ride

> > ever since! I had JRA (? many joints involved) as a

> > small child,

> > with my last flare in 3rd grade and no symptoms

> > until I was

> > postpartum with my first child (Gracie, now 4).

> > After having Abby

> > two years ago, I have found myself back in the cycle

> > of flares and

> > remissions in one knee. My DH doesn't understand;

> > he tells me I

> > need more exercise (!?) and in the midst of this new

> > development my

> > then 18 month old daughter was diagnosed with JRA!

> > Facing her JRA

> > diagnosis has meant facing parts of my childhood

> > that have long been

> > buried, but this is the least of my worries. I

> > struggle every day

> > with whether or not I am making the right choices

> > with her health

> > care. Right now she is seeing a general

> > rheumatologist (not a pedi)

> > and he has her on prescription strength Naproxen

> > with pt to begin

> > two times a week. I don't know if I should insist

> > on seeing a

> > pediatric specialist, but I do know she is still

> > having a lot of

> > stiffness and falls often. It is heartbreaking to

> > watch her hobble

> > around at the park and not be able to enjoy herself

> > as much as kids

> > much younger than her. But she is so strong! She

> > hardly cries about

> > it and continues to be the happy and sunny little

> > girl she has

> > always been. Explaining to other moms has been

> > hard; I now remember

> > the kinds of responses my own mom got when she

> > talked with the

> > school/ other parents about my struggles. As moms

> > who have walked

> > this way before, what are your opinions about

> > pediatric vs. general

> > rheumatology?? Anyone else experiencing a second

> > generation of JRA??

> >

> > Christie in Massachusetts

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi!

I'm new to this list, as well. This is my first time posting, though

I have been reading. I really felt like responding to your post,

because our stories are very similar for our little girls, at least.

I do not know of anyone in our family that has ever had JRA, so this

has been quite a shock to our family! We are still trying to grasp

what all of this means.

My daughter, Abby, was just diagnosed with pauciarticular JRA, also,

on September 11th, 2006. She is three. Her JRA also began this

summer and is in her right knee.

We are very lucky, as I'm reading this list and learning, to have a

pedi rheumatologist at a Children's Hospital in Akron, Ohio very near

our home. We are going to this same hospital twice a week for

physical therapy and I'm working with her on the other days, at home,

to try the same exercises. She is also taking Naproxen twice a day.

We found that this did help her knee right away, but now we are not

experiencing much more of the swelling going down. There is about a

1/2 centimeter difference between her two knees in size. The PT has

helped her to regain some of her bending range of motion, but not so

much in terms of straightening her knee. At this point, we

understand that this is still considered making progress, so we feel

fairly happy about it.

I'm so pleased with the people that are working with our Abby.

EVERYONE at the Children's Hospital has been excellent and made this

so much easier for us. I highly recommend looking for pediatric

people - - they " get " young children -- we are constantly getting

prizes and stickers and they seem to understand the three year

old " fits " ! I'm so thankful. Also, everything we do at PT is a very

fun game - - this has made all of the difference. I would be glad to

tell you about the " games, " if you would like to try some at home,

too!

Essentially we have been receiving about the same treatment, though,

that you have been given from your rheumy, so in that sense, I think

you are getting the right " stuff. "

I would love to hear how your daughter is progressing, since they

both started the same types of treatment at about the same time and

would be glad to talk more with you, too. It feels like every day

I'm learning of something else I should be doing or helping her

with! It has been overwhelming.

Also, Abby's stiffness tends to just be in the morning and after she

sits for awhile. She does have a small limp much of the day, though.

Hope this information is helpful to you.

Becky

>

> Hi everyone,

>

> I am so glad I found this list! My daughter Abby, who will be 2 on

> Friday, was diagnosed with pauciarticular JRA affecting one knee

the

> beginning of the summer, and I have been on a roller coaster ride

> ever since! I had JRA (? many joints involved) as a small child,

> with my last flare in 3rd grade and no symptoms until I was

> postpartum with my first child (Gracie, now 4). After having Abby

> two years ago, I have found myself back in the cycle of flares and

> remissions in one knee. My DH doesn't understand; he tells me I

> need more exercise (!?) and in the midst of this new development my

> then 18 month old daughter was diagnosed with JRA! Facing her JRA

> diagnosis has meant facing parts of my childhood that have long

been

> buried, but this is the least of my worries. I struggle every day

> with whether or not I am making the right choices with her health

> care. Right now she is seeing a general rheumatologist (not a

pedi)

> and he has her on prescription strength Naproxen with pt to begin

> two times a week. I don't know if I should insist on seeing a

> pediatric specialist, but I do know she is still having a lot of

> stiffness and falls often. It is heartbreaking to watch her hobble

> around at the park and not be able to enjoy herself as much as kids

> much younger than her. But she is so strong! She hardly cries

about

> it and continues to be the happy and sunny little girl she has

> always been. Explaining to other moms has been hard; I now

remember

> the kinds of responses my own mom got when she talked with the

> school/ other parents about my struggles. As moms who have walked

> this way before, what are your opinions about pediatric vs. general

> rheumatology?? Anyone else experiencing a second generation of JRA??

>

> Christie in Massachusetts

>

[Guest guest]

Hi!

I'm new to this list, as well. This is my first time posting, though

I have been reading. I really felt like responding to your post,

because our stories are very similar for our little girls, at least.

I do not know of anyone in our family that has ever had JRA, so this

has been quite a shock to our family! We are still trying to grasp

what all of this means.

My daughter, Abby, was just diagnosed with pauciarticular JRA, also,

on September 11th, 2006. She is three. Her JRA also began this

summer and is in her right knee.

We are very lucky, as I'm reading this list and learning, to have a

pedi rheumatologist at a Children's Hospital in Akron, Ohio very near

our home. We are going to this same hospital twice a week for

physical therapy and I'm working with her on the other days, at home,

to try the same exercises. She is also taking Naproxen twice a day.

We found that this did help her knee right away, but now we are not

experiencing much more of the swelling going down. There is about a

1/2 centimeter difference between her two knees in size. The PT has

helped her to regain some of her bending range of motion, but not so

much in terms of straightening her knee. At this point, we

understand that this is still considered making progress, so we feel

fairly happy about it.

I'm so pleased with the people that are working with our Abby.

EVERYONE at the Children's Hospital has been excellent and made this

so much easier for us. I highly recommend looking for pediatric

people - - they " get " young children -- we are constantly getting

prizes and stickers and they seem to understand the three year

old " fits " ! I'm so thankful. Also, everything we do at PT is a very

fun game - - this has made all of the difference. I would be glad to

tell you about the " games, " if you would like to try some at home,

too!

Essentially we have been receiving about the same treatment, though,

that you have been given from your rheumy, so in that sense, I think

you are getting the right " stuff. "

I would love to hear how your daughter is progressing, since they

both started the same types of treatment at about the same time and

would be glad to talk more with you, too. It feels like every day

I'm learning of something else I should be doing or helping her

with! It has been overwhelming.

Also, Abby's stiffness tends to just be in the morning and after she

sits for awhile. She does have a small limp much of the day, though.

Hope this information is helpful to you.

Becky

>

> Hi everyone,

>

> I am so glad I found this list! My daughter Abby, who will be 2 on

> Friday, was diagnosed with pauciarticular JRA affecting one knee

the

> beginning of the summer, and I have been on a roller coaster ride

> ever since! I had JRA (? many joints involved) as a small child,

> with my last flare in 3rd grade and no symptoms until I was

> postpartum with my first child (Gracie, now 4). After having Abby

> two years ago, I have found myself back in the cycle of flares and

> remissions in one knee. My DH doesn't understand; he tells me I

> need more exercise (!?) and in the midst of this new development my

> then 18 month old daughter was diagnosed with JRA! Facing her JRA

> diagnosis has meant facing parts of my childhood that have long

been

> buried, but this is the least of my worries. I struggle every day

> with whether or not I am making the right choices with her health

> care. Right now she is seeing a general rheumatologist (not a

pedi)

> and he has her on prescription strength Naproxen with pt to begin

> two times a week. I don't know if I should insist on seeing a

> pediatric specialist, but I do know she is still having a lot of

> stiffness and falls often. It is heartbreaking to watch her hobble

> around at the park and not be able to enjoy herself as much as kids

> much younger than her. But she is so strong! She hardly cries

about

> it and continues to be the happy and sunny little girl she has

> always been. Explaining to other moms has been hard; I now

remember

> the kinds of responses my own mom got when she talked with the

> school/ other parents about my struggles. As moms who have walked

> this way before, what are your opinions about pediatric vs. general

> rheumatology?? Anyone else experiencing a second generation of JRA??

>

> Christie in Massachusetts

>

[Guest guest]

Same story here. Daugter is 2. Had has JRA 8 months in one knee. Had

one shot to reduce swelling. Concerned about her eyes. She's been

rubbing one for over a week now.

[Guest guest]

Has she been to the opthamologist? The test is VERY easy. Was she ANA

positive? Our eye doctor said that we will need to come every four

months if Abby is ANA positive, or every six months if not. He said we

would do this for a long time (as in many years). My impression is

that there are no syptoms of the eye infection.

Has she been on meds and in physical therapy for eight months? Or did

she have the shot right away? Does her knee seem totally back to

normal?

Becky

>

> Same story here. Daugter is 2. Had has JRA 8 months in one knee. Had

> one shot to reduce swelling. Concerned about her eyes. She's been

> rubbing one for over a week now.

>

[Guest guest]

Has she been to the opthamologist? The test is VERY easy. Was she ANA

positive? Our eye doctor said that we will need to come every four

months if Abby is ANA positive, or every six months if not. He said we

would do this for a long time (as in many years). My impression is

that there are no syptoms of the eye infection.

Has she been on meds and in physical therapy for eight months? Or did

she have the shot right away? Does her knee seem totally back to

normal?

Becky

>

> Same story here. Daugter is 2. Had has JRA 8 months in one knee. Had

> one shot to reduce swelling. Concerned about her eyes. She's been

> rubbing one for over a week now.

>

[Guest guest]

Thanks for writing back! I was hoping to talk about our particular

situation with someone who understands. Here's her 8 month history:

didn'dt respond to Naprosyn, so we took her off it after 3

months. It was also started to upset her stomach. She'd throw up

almost every day before we took her off of it. The swelling never

really went down much over the course of her 8 months. We got the

injection because it was getting too swollen. Yes, she is ANA+ and

we've been to check her eyes every 3 months. We're going back tomorrow

for a special exam. She's not due for 6 weeks, but (like I said) she's

been saying her eyes hurt. I've been researching ways to treat

uveitis. I know it can be harder to deal with than the joint pain and

swelling... I hope she doesn't have it. We've been " lucky " so far.

[Guest guest]

Yes, the swelling has gone down. Her knees look the same for once. She

hasn't gotten any PT, just the shoe lift. She just got the shot a few

weeks ago. Up til then the knee was just swollen.

[Guest guest]

Hi!

I keep reading so many other postings, but have had a hard time finding

anyone with a young child in the beginning stages of JRA. I was glad

to see that you had responded!!

How was the eye appointment?

I'm sorry that the Naprosyn didn't work and made her sick, how awful.

We feel like the Naprosyn is working, but we aren't sure how much

further her knee will go down. We are having a very difficult time

getting her knee to straighten. Did the shoe lift help with this? Or

does it just help her to walk without the limp? They haven't mentioned

this yet for Abby, but we have only known about her diagnosis for about

a month now.

I'm not sure how long it will take to determine wether she is

responding enough to the medicine. We are scheduled for another

appointment at the end of November. We are scheduled for PT twice a

week until the end of November, at this point. We also have started

taking her to a pool this week and have found that she kicks and moves

around so much more in the water than anywhere else - - we're thinking

this will be the most helpful.

We have had lots of blood work, but didn't yet have an ANA test. When

Abby was first diagnosed, she needed an initial eye exam anyway, so

they figured we could just wait until closer to our next appointment

and not put her through extra sessions of bloodwork! I was quite

thankful, but I will be glad to know.

I'll be anxious to hear how your appointment went . . .

Becky

>

> Thanks for writing back! I was hoping to talk about our particular

> situation with someone who understands. Here's her 8 month history:

> didn'dt respond to Naprosyn, so we took her off it after 3

> months. It was also started to upset her stomach. She'd throw up

> almost every day before we took her off of it. The swelling never

> really went down much over the course of her 8 months. We got the

> injection because it was getting too swollen. Yes, she is ANA+ and

> we've been to check her eyes every 3 months. We're going back tomorrow

> for a special exam. She's not due for 6 weeks, but (like I said) she's

> been saying her eyes hurt. I've been researching ways to treat

> uveitis. I know it can be harder to deal with than the joint pain and

> swelling... I hope she doesn't have it. We've been " lucky " so far.

>

[Guest guest]

Hi Becky and !

It does help so much to know that we are not alone and to hear of

other's successes and trials; my Abby is 2 and was diagnosed in July

with pauciarticular JRA (negative ANA) and has been on naprosyn

since then with little relief. The swelling has gone down but she

still limps/drags her leg part or most of the day when playing. She

gets around so slowly and is very cautious with her leg. PT seemed

to be helping straighten her contraction the first two weeks but now

it is worse than when we began and I am worried that we pushed her

too far because she is really struggling again. I don't know if it

was the PT or the weather (wet, cool fall days) or both or

neither...I guess we can't always have all of the answers. But if

it was related to the PT then she needs to discontinue it or ease

back on the exercises. Good to hear about the pool helping your

Abby, Becky; I would love to get mine into a swim class at the Y or

find a jacuzzi we could use (one of my friends has one).

How was 's eye appointment, ? I will be praying for good

news for you!! It sounds like she had a terrible time with the

Naprosyn; I am glad she had some relief with the injection. Our

rheumy is going to see Abby the week after next to discuss having a

steroid injection; he doesn't believe she should still be struggling

as much as she is. Good to know he is taking our concerns

seriously, but we will have to see how things go when we see him. I

am not at all excited about the prospect of an injection; he wants

to put her under to do it! Did go under for her injection?

Talk to you both soon!

Christie (poly JRA in remission since childhood?), mom to Abby, 2

(pauci JRA) and Gracie, 4

> >

> > Thanks for writing back! I was hoping to talk about our

particular

> > situation with someone who understands. Here's her 8 month

history:

> > didn'dt respond to Naprosyn, so we took her off it after

3

> > months. It was also started to upset her stomach. She'd throw up

> > almost every day before we took her off of it. The swelling never

> > really went down much over the course of her 8 months. We got the

> > injection because it was getting too swollen. Yes, she is ANA+

and

> > we've been to check her eyes every 3 months. We're going back

tomorrow

> > for a special exam. She's not due for 6 weeks, but (like I said)

she's

> > been saying her eyes hurt. I've been researching ways to treat

> > uveitis. I know it can be harder to deal with than the joint

pain and

> > swelling... I hope she doesn't have it. We've been " lucky " so

far.

> >

>

[Guest guest]

Hi Becky and Christie,

's eys were fine, thank God. The Dr. said, " False alarm! " . He was very

affirming and made us feel like we did the absolute best thing for by

bringing her in to check to be sure.

No, the shoe lift does not help her Range of Motion, but it evens out the legs

so she doesn't limp.

No, we didn't need to put her under for the injection. There is a Very Small

risk of problems in doing that. I think they said she may not react well to it,

but mostly it just wan't necessary. They had 5 people in there steadying her

(and me). It was very quick and " friendly " . They even gave her a teddy bear to

help her be brave (she got to keep it - a little " " tribute beanie baby).

Having the swelling down is very nice, although she still doesn't have full ROM

and limps.

We enjoy swimming, too. is most active in the pool, and our health club

has one that's almost 90 degrees! (A therapeutic one). I'm thinking of putting

her in swim lessons, she loves the water so much! Our club has no hottub though.

Doesn't need it, really, although i miss using one.

I think I answered your questions. Good to be in touch with you. Affectionately,

(with , 2, pauci-JRA 8 -months ago)

Re: Abby

Hi Becky and !

It does help so much to know that we are not alone and to hear of

other's successes and trials; my Abby is 2 and was diagnosed in July

with pauciarticular JRA (negative ANA) and has been on naprosyn

since then with little relief. The swelling has gone down but she

still limps/drags her leg part or most of the day when playing. She

gets around so slowly and is very cautious with her leg. PT seemed

to be helping straighten her contraction the first two weeks but now

it is worse than when we began and I am worried that we pushed her

too far because she is really struggling again. I don't know if it

was the PT or the weather (wet, cool fall days) or both or

neither...I guess we can't always have all of the answers. But if

it was related to the PT then she needs to discontinue it or ease

back on the exercises. Good to hear about the pool helping your

Abby, Becky; I would love to get mine into a swim class at the Y or

find a jacuzzi we could use (one of my friends has one).

How was 's eye appointment, ? I will be praying for good

news for you!! It sounds like she had a terrible time with the

Naprosyn; I am glad she had some relief with the injection. Our

rheumy is going to see Abby the week after next to discuss having a

steroid injection; he doesn't believe she should still be struggling

as much as she is. Good to know he is taking our concerns

seriously, but we will have to see how things go when we see him. I

am not at all excited about the prospect of an injection; he wants

to put her under to do it! Did go under for her injection?

Talk to you both soon!

Christie (poly JRA in remission since childhood?), mom to Abby, 2

(pauci JRA) and Gracie, 4

> >

> > Thanks for writing back! I was hoping to talk about our

particular

> > situation with someone who understands. Here's her 8 month

history:

> > didn'dt respond to Naprosyn, so we took her off it after

3

> > months. It was also started to upset her stomach. She'd throw up

> > almost every day before we took her off of it. The swelling never

> > really went down much over the course of her 8 months. We got the

> > injection because it was getting too swollen. Yes, she is ANA+

and

> > we've been to check her eyes every 3 months. We're going back

tomorrow

> > for a special exam. She's not due for 6 weeks, but (like I said)

she's

> > been saying her eyes hurt. I've been researching ways to treat

> > uveitis. I know it can be harder to deal with than the joint

pain and

> > swelling... I hope she doesn't have it. We've been " lucky " so

far.

> >

>

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[Guest guest]

Hello again,

I'm so glad that the appointment went well! What a relief.

We are to the point now where we are wondering what will happen next

for our Abby. She is still swollen and warmish after about six weeks

now of Naproxen and PT. How long do you guess they will have her

wait before trying something else? She doesn't seem to get sick from

the medicine, which is good, but it only seemed to help initially

(just like you were saying the first two weeks).

I still feel like the pool is the best therapy for Abby. She is also

having a pariffin treatment and ultrasound done on her knee twice a

week. The pariffin, at least, is nice and warm and helps her to be a

bit more flexible for the therapy, but I'm not sure if the ultrasound

helps or not.

I've noticed that Abby wakes up so grumpy on days when she is really

stiff. We will have to get her out of bed (actually we have to do

this almost every day). This week, though, twice she has got up on

her own and been VERY happy all day. She has said on both of those

days, " my knee doesn't hurt! " which makes me feel sad that it has

hurt every other day! Do you notice any difference in your

daughters' behavior? Of course, then all of this makes me wonder,

too, if maybe this is a sign that it is getting better . . .

Like you said, we just never know . . .

It is nice to chat with you both. I've appreciated our conversations.

Becky

>

> > >

>

> > > Thanks for writing back! I was hoping to talk about our

>

> particular

>

> > > situation with someone who understands. Here's her 8 month

>

> history:

>

> > > didn'dt respond to Naprosyn, so we took her off it

after

>

> 3

>

> > > months. It was also started to upset her stomach. She'd throw up

>

> > > almost every day before we took her off of it. The swelling

never

>

> > > really went down much over the course of her 8 months. We got

the

>

> > > injection because it was getting too swollen. Yes, she is ANA+

>

> and

>

> > > we've been to check her eyes every 3 months. We're going back

>

> tomorrow

>

> > > for a special exam. She's not due for 6 weeks, but (like I

said)

>

> she's

>

> > > been saying her eyes hurt. I've been researching ways to treat

>

> > > uveitis. I know it can be harder to deal with than the joint

>

> pain and

>

> > > swelling... I hope she doesn't have it. We've been " lucky " so

>

> far.

>

> > >

>

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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[Guest guest]

Hi Becky and !

How are your girls doing? , I am so glad to hear that 's

eyes are fine. You definitely did the right thing by following

through on them...glad that the dr. reaffirmed you too (nice to know

your dr. is supportive and not treating you like a overreactive mom!

Some drs can be such jerks).

Becky, I will definitely ask Abby's PT about therapeutic pools

available in the area. The paraffin bath also sounds like a

possibility, although she gets skittish with strange equipment (she

has resisted the warm pack) so I'm not sure it would fly for her.

She could use the relief. Her rheumy just upped the dose of her

naproxen to help combat the extreme stiffness and pain she was

having last week (even the PT was concerned with her decline--maybe

due to change in seasons?), and it seemed to help...she is walking

better and has had several consecutive good mornings (like your Abby

has). She DEFINITELY has a very different personality on these good

mornings. She isn't as much grouchy as she is clingy on her bad

mornings, but she insists on being held ALL the time and if I put

her down to walk she screams in pain and nearly falls over trying to

get moving

So mornings are better but now she is having these weird night

episodes. She has been waking up screaming around midnight every

night; she is inconsolable and keeps asking for mommy even when I am

holding her. She kicks her feet wildly for about 5 minutes and

eventually settles down and falls back asleep. Sometimes it seems

to be associated with a gas bubble, but other times not. Weird

huh? My husband is about ready to move out I think I remember

the rheumy mentioning that naproxen can have digestive side effects

besides stomach irritation. I don't know what we will do if he takes

her off of it; she still limps a lot but her relief is visible and

her swelling has come way down.

I am also trying to get her an appointment with a pedi rheumy. Her

name is Dr. Dedeoglu (anyone heard of her?) and she operates out of

Children's Hospital in Boston, but also has office hours in

Lexington (much closer to us). Her Lexington office can't fit Abby

in for an initial consultation until February (!!) and I have yet to

hear back from the Boston office. I will have to call again today

and see if they can fit her in any earlier. Then I can schedule

follow ups in Lexington.

Take care and God bless...thanks for the support!

Christie (poly JRA in remission ?) mom to Abby 2, pauci JRA

> >

> > > >

> >

> > > > Thanks for writing back! I was hoping to talk about our

> >

> > particular

> >

> > > > situation with someone who understands. Here's her 8 month

> >

> > history:

> >

> > > > didn'dt respond to Naprosyn, so we took her off it

> after

> >

> > 3

> >

> > > > months. It was also started to upset her stomach. She'd

throw up

> >

> > > > almost every day before we took her off of it. The swelling

> never

> >

> > > > really went down much over the course of her 8 months. We

got

> the

> >

> > > > injection because it was getting too swollen. Yes, she is

ANA+

> >

> > and

> >

> > > > we've been to check her eyes every 3 months. We're going

back

> >

> > tomorrow

> >

> > > > for a special exam. She's not due for 6 weeks, but (like I

> said)

> >

> > she's

> >

> > > > been saying her eyes hurt. I've been researching ways to

treat

> >

> > > > uveitis. I know it can be harder to deal with than the joint

> >

> > pain and

> >

> > > > swelling... I hope she doesn't have it. We've been " lucky "

so

> >

> > far.

> >

> > > >

> >

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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[Guest guest]

Hi again,

It is so nice to have people to chat with about this. I'm so glad to

hear that you are experiencing similar things, though I'm not glad

you have to go through it, too.

We have thought that Abby's knee was getting worse, because of the

weather, too, but it is so hard to tell. This morning she was really

stiff, but the weather was less rainy here than it has been in days!

So, it just doesn't make sense.

The thing that you are describing at night sounds like something a

couple of my friends talk about with their children. They call the

episodes " night terrors. " Their children really do not seem to

notice that they (the parent) are there, either, there is no way to

stop this and the children have no memory of the episode in the

morning. These children do not have JRA. They talked with their

pediatritions about these episodes and apparently there is nothing to

stop it. I guess it also can be a precursor to sleep walking. It is

the strangest thing to me. I couldn't believe it when they told me

about it.

I'm glad the new dosage is helping. That is good news, at least.

I've never heard of the doctor that you mention, but I live in Ohio,

so I wouldn't expect that I would! I had no idea how difficult it

would be for people to find a pedi rheumatologist. We are so lucky -

- we drive fifteen minutes to our doctor's office. We were able to

get into her in two days after seeing a pedi orthopedic surgeon - -

obviously there was a cancellation! I just had no idea. We have

only seen her one time, but I feel like she did everything that she

could have in the one visit. So, I want to say that I like her so

far!

About the paraffin . . . the PT dips cut up strips of gauze into the

paraffin, then lets it cool just a bit. After it is slightly cooler

she wraps Abby's knee in these strips, then covers the whole thing

with plastic wrap and then covers it with a wrap. So, it is much

easier than attempting to dip her knee into the wax machine. The one

they use is very small, too. I have one that I'm using at home (it

was given to me, but it looks to be something you could find - - made

by homedics). I have been giving these to Abby myself on Fridays, so

she ends up getting them three times a week. It is very easy to do,

but it does take the home wax machine four hours to melt the wax, so

I have to set it the night before I will want to use it on her in the

morning.

We thought of putting Abby back into swimming lessons, but it seems

like she gets more kicking in with us, just playing around and

swimming with her one on one. So, the four of us have been going as

a family two to three times a week (Abby has an older brother who is

six!). So, we are all having fun, too!

Thought I'd quick add my reply . . . hope you are having a good day!

Becky (Abby, 3, pauci)

> > >

> > > > >

> > >

> > > > > Thanks for writing back! I was hoping to talk about our

> > >

> > > particular

> > >

> > > > > situation with someone who understands. Here's her 8 month

> > >

> > > history:

> > >

> > > > > didn'dt respond to Naprosyn, so we took her off it

> > after

> > >

> > > 3

> > >

> > > > > months. It was also started to upset her stomach. She'd

> throw up

> > >

> > > > > almost every day before we took her off of it. The swelling

> > never

> > >

> > > > > really went down much over the course of her 8 months. We

> got

> > the

> > >

> > > > > injection because it was getting too swollen. Yes, she is

> ANA+

> > >

> > > and

> > >

> > > > > we've been to check her eyes every 3 months. We're going

> back

> > >

> > > tomorrow

> > >

> > > > > for a special exam. She's not due for 6 weeks, but (like I

> > said)

> > >

> > > she's

> > >

> > > > > been saying her eyes hurt. I've been researching ways to

> treat

> > >

> > > > > uveitis. I know it can be harder to deal with than the

joint

> > >

> > > pain and

> > >

> > > > > swelling... I hope she doesn't have it. We've been " lucky "

> so

> > >

> > > far.

> > >

> > > > >

> > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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[Guest guest]

Yes, when she was first dealing with this, was much less easy-going than

she was. I was worried that it would " take her spirit " away, and she'd just

become irritable and reactive, BUT, it's not that way anymore. In the same way

that it took us time to get used to this condition, and the frustration over

having to do so, has also gotten used to it and will ask for a bath if

she's sore. We also have her sit with a blanket when she's watching a video. She

is very much herself now, and she can articulate " my knee hurts " or " doesn't

hurt " . Most of the time she doesn't even talk about it.

She's still rubbing her eye, though... If it continues for another week or two

we may take her into the ped.opthamolgist again, just to be sure.

Thanks. --

Re: Abby

Hello again,

I'm so glad that the appointment went well! What a relief.

We are to the point now where we are wondering what will happen next

for our Abby. She is still swollen and warmish after about six weeks

now of Naproxen and PT. How long do you guess they will have her

wait before trying something else? She doesn't seem to get sick from

the medicine, which is good, but it only seemed to help initially

(just like you were saying the first two weeks).

I still feel like the pool is the best therapy for Abby. She is also

having a pariffin treatment and ultrasound done on her knee twice a

week. The pariffin, at least, is nice and warm and helps her to be a

bit more flexible for the therapy, but I'm not sure if the ultrasound

helps or not.

I've noticed that Abby wakes up so grumpy on days when she is really

stiff. We will have to get her out of bed (actually we have to do

this almost every day). This week, though, twice she has got up on

her own and been VERY happy all day. She has said on both of those

days, " my knee doesn't hurt! " which makes me feel sad that it has

hurt every other day! Do you notice any difference in your

daughters' behavior? Of course, then all of this makes me wonder,

too, if maybe this is a sign that it is getting better . . .

Like you said, we just never know . . .

It is nice to chat with you both. I've appreciated our conversations.

Becky

>

> > >

>

> > > Thanks for writing back! I was hoping to talk about our

>

> particular

>

> > > situation with someone who understands. Here's her 8 month

>

> history:

>

> > > didn'dt respond to Naprosyn, so we took her off it

after

>

> 3

>

> > > months. It was also started to upset her stomach. She'd throw up

>

> > > almost every day before we took her off of it. The swelling

never

>

> > > really went down much over the course of her 8 months. We got

the

>

> > > injection because it was getting too swollen. Yes, she is ANA+

>

> and

>

> > > we've been to check her eyes every 3 months. We're going back

>

> tomorrow

>

> > > for a special exam. She's not due for 6 weeks, but (like I

said)

>

> she's

>

> > > been saying her eyes hurt. I've been researching ways to treat

>

> > > uveitis. I know it can be harder to deal with than the joint

>

> pain and

>

> > > swelling... I hope she doesn't have it. We've been " lucky " so

>

> far.

>

> > >

>

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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[Guest guest]

Hello Barb,May I send this request to our animal group over ning, there are many Animal healers there. My personal experience is when giving Reiki, to animals, they do not tolerate much, what I do is I give to them the energy in a form of Golden bow, I place it around their neck, so they can use it at will, They usually get very sleepy afterwards. I will keep Abby in my personal prayers and thoughts.Much love and respect,Liane>> Please may I ask for all in this wonderful family to send healing and > prayers to my elderly (± 11 year-old) grand dame lady-cat, Abby? She > is not the friendliest cat, and the vet can't really figure out what > is wrong with her (he can't even use his stethoscope, she growls so > loudly!!!). He suspects arthritis - she really is in pain. My > daughters and I have been giving her Reiki, but she is not comfortable > with the direct application. She has not had an easy life, and any > prayers or distance healing will be HUGELY welcomed! In love and > light and gratitude> > Barbara>