RE: Introduction - and a little about me

May 3, 2006

Kathleen:

Go straight to the best children's hospital you can get to in your area. Get

a Rheumatoligist to look at her ASAP. And, let them treat her as

aggressively as you can get them to do it relative to her age and condition.

(ie..

steriod injections at the swelling joints and MTX injections to get her

inflammation under control). Your pediatricain doesn't know the disease

intimately

enough.

(son, Carrick, age 13, poly onset age 10)

May 4, 2006

Kathy-

I concur with the mom who suggests getting your sweet little baby girl to a

Children's Hospital with a rheumatologist on staff asap. Good for you for

stopping the office staff when they dismissed you because of negative results.

I am not a dr., but I will tell you this: many on this list serve,

including myself, have found that very often, the blood tests are negative for

arthritis, but the symptoms and clinical presentation of the disease are right

there in front of you. (Which indicates to me that the blood tests are not up

to

par, as they are not accurately reflecting the presenting symptoms). I

would suggest insisting on a referral to a pediatric rheumatologist through

your

pediatrician and make it clear (as it sounds like you are) that you will not

take " no " for an answer.

Also, have x-rays and bone scans been done to rule out other orthopedic

issues? We did all of that (negative results) before seeing the

rheumatologist,

so that we had multiple types of tests to provide to him. He then observed

the x-rays with me and pointed out 3 things that indicated and confirmed

arthritis in my daughter:

1. " shadows " around the joints that were inflamed

2. a large number of small bones(and the spacing between them) clustered

together in her knees.

3. bony inward growth of both knees.

Together with the blood tests and type of tests done(tested for Lyme

Disease, too, because Lyme very often causes arthritis), the above x-rays, my

reports of her gross motor decline and when, as you mentioned, her symptoms

were at

their worst(the a.m., just as you said), and of course, the clincher, his

examination of her toe, finger, and knee joints which were all inflamed.

It sounds like you know how to handle things and to keep pushing, and by all

means, you have every right to feel overwhelmed. THIS IS OVERWHELMING!

This isn't supposed to happen to babies or children and it is interfering with

your daughter's development. Allow yourself to feel awful, angry, sad,

scared, whatever it is, Kathy. It's completely understandable and normal!

We're glad you've come to this list serve, too! Best Wishes.

Keep us posted; we are here for you!

Beth, Mom to (age 5 years)

May 4, 2006

Kathy,

Hang in there, I agree you need to find a really good rheumy. I am in the

same situatin right now..still waiting on results for my 9 year old daguther,

Hannah. One thing I have learned is these tests seem to take forever to come

back. Hang in there and push for them to help make your daughter pain free. No

child should have to suffer being in pain.

Beth..Happy thoughts..Be well

Kathleen Bender <kathleenbender@...> wrote:

My name is Kathy, and my daughter is 18 months old and, although

all of the bloodwork is not in yet, everything so far is pointing to

poly JRA.

It started about a month ago. She started walking at 10 months of age

and up until last month, she was very agile and had an astounding (we

thought exceptional) sense of balance and body awareness. Well, all of

that started to change a month ago. We noticed she had started to walk

on the outsides and heels of her feet, avoiding putting the front and

toes down. Her balance was not good, and she seemed like she was in

pain. Her feet/ankles appeared to be a bit swollen, but with chubby

baby feet it was hard to tell and there was no bruising or other

indication of injury. Her ped ordered xrays of her hips, legs and

ankles to rule out synovosis (sp?). Everything came back normal. They

suggested we wait a couple of weeks and watch her closely, in case we

just caught something at its beginning stages. She never developed a

fever or other signs of infection, but her walking wasn't getting

better. If anything, it got worse. Mornings for the first couple of

hours seemed to be her absolute worst times. She didn't even want to

walk for the first couple to few hours of the a.m. She also started

awakening at about 3-4 am, shreiking, and had a hard time settling back

to sleep. I pressed the ped's office and they ordered more xrays, this

time of her feet, along with blood work. Again, nothing significant

showed up, other than a very slightly elevated platelet count and a high

normal white cell count. We insisted on an appt with the ped so he

could see her left ankle in particular, which has very little range of

motion. After seeing her, he ordered more bloodwork, specialists to see

her, etc. in the hospital, so we wouldn't have to cart her all over

town.

She was admitted to the hospital on Monday and as you are undoubtedly

familiar with, was subjected to more tests than I could detail here.

She also saw a ped ortho, who after seeing the recent blood work,

(elevated protein and sedimentation rate is what he mentioned) and

observing her, feels pretty strongly that it's poly JRA. At least 3 of

her fingers are involved as well as some toes and both ankles. I'm

relieved that we seem to be at or close to a diagnosis, but am also

fearful of what my little girl will have to endure. I know there are

others who are dealing with much worse, and my heart goes out to them.

Right now, I'm just really trying to come to grips with all of this,

understand what it means to my daughter and our family, and learn what I

can so that I can make intelligent decisions about her care. She's on

motrin around the clock right now and it does seem to help her, as she

slept through the night last night and on Monday in the hospital. She's

such a little trooper and a very happy little girl. I hate to see her

in pain. I also have a son age 4 who is a very " spirited " child and a

handful. I have concerns about him as well and how his behavior may be

affected. That's a whole other story for another day, though...

Another thing I must add is that I've already seen how I will need to be

very assertive in dealing with those who care for my daughter. During

this whole thing, it was amazing how quickly the doctor's office staff

(not even nurses in many cases) were taking it upon themselves to

basically diagnose my daughter's condition over the telephone. It's

like they form this barricade around the doctor, and you have to break

through it by persistence and sometimes force....very exhuasting and

frustrating. Each time I would call for the results of a test or xray,

the staff member would say something like " ok, well everything is

normal, so that's good....alrighty then, ba-bye! " I had to actually

stop them and ask, " woah....wait a minute...my daughter cannot

walk...what am I supposed to do? Something is obviously wrong. " Their

suggestions ranged from " buy her good shoes " to " she's probably just

experimenting with walking that way, toddlers do that you know " . Now,

the ped is not like this at all, and I would venture to guess that he

would be shocked if I were to tell him this was occurring. (If he

wasn't, I would then be concerned) It is totally incomprehensible to me

how someone who is not qualified to make such determinations can just

casually take it upon themselves to basically make a diagnosis like

this. Unbelievable

Anyway, I'm glad to have found the group. I will take anyone's

advice/suggestions, etc. at this point as I'm feeling more than a little

overwhelmed.

Kathy

_____

From: [mailto: ] On

Behalf Of Robbin40@...

Sent: Wednesday, May 03, 2006 11:02 AM

Subject: Re: ATLANTA!!!!

n,

You got the get up and go South need now? lololol. I am here already

:-).

What kind of Plans you have include and I. As you know the

Olympic

Park is across the street. On the Corner theres a BIG Sign saying CNN

Center

on the other corner is

the Philips Arena with a Big TV Screen on the outside. The Omni is on

the

same side of the street as the CNN Center. Inside the CNN Center are

Resturants

or you can walk outside and find them close. Just let me know

Robbin

May 4, 2006

I can't believe that you all are still waiting for results. I feel so

sorry for you all. My daughter's doctors (all of them) call me at least

the very next day with results of any type of test and even her rheumy

sometimes calls me the same day.

I hope you all get test results back very soon...unfortunately blood

tests won't diagnose JRA....just give an indication.

Let us all know when both of you get results back.

Also my daughter was diagnosed at 15 months with Pauci JRA then

eventually with Poly JRA. If anyone has any questions you are more than

welcome to e-mail me personally if you'd like!

Ashlee (Madison, 3 1/2, Poly and Iritis)

Re: ATLANTA!!!!

n,

You got the get up and go South need now? lololol. I am here already

:-).

What kind of Plans you have include and I. As you know the

Olympic

Park is across the street. On the Corner theres a BIG Sign saying CNN

Center

on the other corner is

the Philips Arena with a Big TV Screen on the outside. The Omni is on

the

same side of the street as the CNN Center. Inside the CNN Center are

Resturants

or you can walk outside and find them close. Just let me know

Robbin

May 4, 2006

First of all, I want to thank everyone who has responded so far,

welcomed me, and offered their advice and support. As I'm sure you are

all aware, most people who I have discussed this with did not even know

that JRA existed until now. So it is good to have others to discuss

things with who have first-hand knowledge of this.

We have a follow up appointment with her ped today and he is supposed to

refer us to a pediatric rheumatologist. The ortho already gave me a few

names while we were in the hospital. We are in FL, and at first I

thought we were at a disadvantage having " only " 6 ped rheumatologists in

the state. Now I know that 6 is actually a lot to choose from, compared

to what others have available to them. I have started to write down my

questions for the pediatrician.

Here's what I have so far...I have a couple hours before I leave for the

appointment, so if you have any other recommendations, please feel free

to post them.

1) I want to know what blood tests they did, what they were

looking for or trying to rule out, and what the results were

2) Rheumatoid factor positive or negative?

3) What did xrays show? Inflammation? Where?

4) Any pending results that have not been returned from the labs

yet?

5) Originally, ped had a bone scan on the hospital orders. What

was the reason this wasn't done?

Thanks again!

_____

From: [mailto: ] On

Behalf Of bebase7@...

Sent: Thursday, May 04, 2006 2:24 PM

Subject: Re: Introduction - and a little about me

Kathy-

I concur with the mom who suggests getting your sweet little baby girl

to a

Children's Hospital with a rheumatologist on staff asap. Good for you

for

stopping the office staff when they dismissed you because of negative

results.

I am not a dr., but I will tell you this: many on this list serve,

including myself, have found that very often, the blood tests are

negative for

arthritis, but the symptoms and clinical presentation of the disease

are right

there in front of you. (Which indicates to me that the blood tests are

not up to

par, as they are not accurately reflecting the presenting symptoms). I

would suggest insisting on a referral to a pediatric rheumatologist

through your

pediatrician and make it clear (as it sounds like you are) that you

will not

take " no " for an answer.

Also, have x-rays and bone scans been done to rule out other orthopedic

issues? We did all of that (negative results) before seeing the

rheumatologist,

so that we had multiple types of tests to provide to him. He then

observed

the x-rays with me and pointed out 3 things that indicated and

confirmed

arthritis in my daughter:

1. " shadows " around the joints that were inflamed

2. a large number of small bones(and the spacing between them)

clustered

together in her knees.

3. bony inward growth of both knees.

Together with the blood tests and type of tests done(tested for Lyme

Disease, too, because Lyme very often causes arthritis), the above

x-rays, my

reports of her gross motor decline and when, as you mentioned, her

symptoms were at

their worst(the a.m., just as you said), and of course, the clincher,

his

examination of her toe, finger, and knee joints which were all

inflamed.

It sounds like you know how to handle things and to keep pushing, and

by all

means, you have every right to feel overwhelmed. THIS IS OVERWHELMING!

This isn't supposed to happen to babies or children and it is

interfering with

your daughter's development. Allow yourself to feel awful, angry, sad,

scared, whatever it is, Kathy. It's completely understandable and

normal!

We're glad you've come to this list serve, too! Best Wishes.

Keep us posted; we are here for you!

Beth, Mom to (age 5 years)

May 4, 2006

Kathy, Ask for copies of all labs. We get copies of all labs and x

rays for n. You may want to change doctors, and then you will

have all of this info. Also, start keeping a diary on your child.

Symptoms, good days, medication, anything you want to write down. I

have found it to be invaluable throughout the years. Remember, you

are your child's strongest advocate. Good luck. (n,

systemic, 17)

On May 4, 2006, at 11:43 AM, Kathleen Bender wrote:

> First of all, I want to thank everyone who has responded so far,

> welcomed me, and offered their advice and support. As I'm sure you

> are

> all aware, most people who I have discussed this with did not even

> know

> that JRA existed until now. So it is good to have others to discuss

> things with who have first-hand knowledge of this.

>

> We have a follow up appointment with her ped today and he is

> supposed to

> refer us to a pediatric rheumatologist. The ortho already gave me

> a few

> names while we were in the hospital. We are in FL, and at first I

> thought we were at a disadvantage having " only " 6 ped

> rheumatologists in

> the state. Now I know that 6 is actually a lot to choose from,

> compared

> to what others have available to them. I have started to write

> down my

> questions for the pediatrician.

>

> Here's what I have so far...I have a couple hours before I leave

> for the

> appointment, so if you have any other recommendations, please feel

> free

> to post them.

>

> 1) I want to know what blood tests they did, what they were

> looking for or trying to rule out, and what the results were

>

> 2) Rheumatoid factor positive or negative?

>

> 3) What did xrays show? Inflammation? Where?

>

> 4) Any pending results that have not been returned from the labs

> yet?

>

> 5) Originally, ped had a bone scan on the hospital orders. What

> was the reason this wasn't done?

>

> Thanks again!

>

> _____

>

> From: [mailto: ] On

> Behalf Of bebase7@...

> Sent: Thursday, May 04, 2006 2:24 PM

>

> Subject: Re: Introduction - and a little about me

>

> Kathy-

> I concur with the mom who suggests getting your sweet little baby

> girl

> to a

> Children's Hospital with a rheumatologist on staff asap. Good for

> you

> for

> stopping the office staff when they dismissed you because of negative

> results.

> I am not a dr., but I will tell you this: many on this list serve,

> including myself, have found that very often, the blood tests are

> negative for

> arthritis, but the symptoms and clinical presentation of the disease

> are right

> there in front of you. (Which indicates to me that the blood

> tests are

> not up to

> par, as they are not accurately reflecting the presenting

> symptoms). I

>

> would suggest insisting on a referral to a pediatric rheumatologist

> through your

> pediatrician and make it clear (as it sounds like you are) that you

> will not

> take " no " for an answer.

>

> Also, have x-rays and bone scans been done to rule out other

> orthopedic

>

> issues? We did all of that (negative results) before seeing the

> rheumatologist,

> so that we had multiple types of tests to provide to him. He then

> observed

> the x-rays with me and pointed out 3 things that indicated and

> confirmed

> arthritis in my daughter:

> 1. " shadows " around the joints that were inflamed

> 2. a large number of small bones(and the spacing between them)

> clustered

> together in her knees.

> 3. bony inward growth of both knees.

>

> Together with the blood tests and type of tests done(tested for Lyme

> Disease, too, because Lyme very often causes arthritis), the above

> x-rays, my

> reports of her gross motor decline and when, as you mentioned, her

> symptoms were at

> their worst(the a.m., just as you said), and of course, the clincher,

> his

> examination of her toe, finger, and knee joints which were all

> inflamed.

>

> It sounds like you know how to handle things and to keep pushing, and

> by all

> means, you have every right to feel overwhelmed. THIS IS

> OVERWHELMING!

>

> This isn't supposed to happen to babies or children and it is

> interfering with

> your daughter's development. Allow yourself to feel awful, angry,

> sad,

>

> scared, whatever it is, Kathy. It's completely understandable and

> normal!

>

> We're glad you've come to this list serve, too! Best Wishes.

>

> Keep us posted; we are here for you!

>

> Beth, Mom to (age 5 years)

>

May 4, 2006

Kathy - those are good questions and welcome to the list. Just a thought

- the rheumatoid factor is not an indicator really. My son is RH

negative, ANA positive, HLAB-27 negative yet is diagnosed with a form of

JRA - Spondylitis. The last test, if positive, can indicate having more

complications with spondy. A child that is ANA pos may have a greater

chance of developing uveitis. That is another important dr to see - an

ophthalmologist. Your daughter should have a slit lamp test to check her

eyes for inflammation. It is great that you are seeing a ped rheumy.

They are usually up to date with things (note I said usually LOL) and

are more likely to be aggressive when treating the disease, not waiting

too long to start a DMARD (disease modifying anti rheumatic drug) like

methotrexate, sulfasalazine, enbrel or any of the others. If the first

" cocktail " of meds doesn't work, various combinations are usually tried.

Keep us posted on what happens, and ask any questions you may have. This

is a great group of people, very supportive and quite helpful, Michele

( 18, spondy)

Re: Introduction - and a little about me

Kathy-

I concur with the mom who suggests getting your sweet little baby girl

to a

Children's Hospital with a rheumatologist on staff asap. Good for you

for

stopping the office staff when they dismissed you because of negative

results.

I am not a dr., but I will tell you this: many on this list serve,

including myself, have found that very often, the blood tests are

negative for

arthritis, but the symptoms and clinical presentation of the disease

are right

there in front of you. (Which indicates to me that the blood tests are

not up to

par, as they are not accurately reflecting the presenting symptoms). I

would suggest insisting on a referral to a pediatric rheumatologist

through your

pediatrician and make it clear (as it sounds like you are) that you

will not

take " no " for an answer.

Also, have x-rays and bone scans been done to rule out other orthopedic

issues? We did all of that (negative results) before seeing the

rheumatologist,

so that we had multiple types of tests to provide to him. He then

observed

the x-rays with me and pointed out 3 things that indicated and

confirmed

arthritis in my daughter:

1. " shadows " around the joints that were inflamed

2. a large number of small bones(and the spacing between them)

clustered

together in her knees.

3. bony inward growth of both knees.

Together with the blood tests and type of tests done(tested for Lyme

Disease, too, because Lyme very often causes arthritis), the above

x-rays, my

reports of her gross motor decline and when, as you mentioned, her

symptoms were at

their worst(the a.m., just as you said), and of course, the clincher,

his

examination of her toe, finger, and knee joints which were all

inflamed.

It sounds like you know how to handle things and to keep pushing, and

by all

means, you have every right to feel overwhelmed. THIS IS OVERWHELMING!

This isn't supposed to happen to babies or children and it is

interfering with

your daughter's development. Allow yourself to feel awful, angry, sad,

scared, whatever it is, Kathy. It's completely understandable and

normal!

We're glad you've come to this list serve, too! Best Wishes.

Keep us posted; we are here for you!

Beth, Mom to (age 5 years)

May 4, 2006

Thanks. I forgot to mention that has a pediatric

ophthalmologist appointment this Friday. (Daddy will be taking her to

that one).

Has anyone had to deal with spouses/family members/others who are VERY

hesitant about medications? My hubby is (overly) paranoid about any

kind of medicine. He mentioned the other night that perhaps we should

not give her less than the recommended dose of Motrin (I'm following

dr's orders right now....hubby can fight this one out with the doctors,

but not me) in case a lower dose works for her. He doesn't even take

full doses of OTC sinus medicine for himself....drives me crazy because

I know that many drugs, especially when you are dealing with pain, it's

important to keep the levels in the system so that the pain response

doesn't kick in. I don't know enough about this yet, but I'm just

curious if any of you has had to deal with similar issues and how you

did so with your spouse or other family member. I see either long

discussions with the docs (who he really doesn't trust...might not do

any good) or counselors in our future.

Kathy

_____

From: [mailto: ] On

Behalf Of Tepper, Michele

Sent: Thursday, May 04, 2006 2:59 PM

Subject: RE: Introduction - and a little about me