Re: Howdy From TEXAS! *New Member Introduction*

[Guest guest]

Hi my daughter was dianosed with jra when she was 2 and she is 5 now and

will start kindergarden in the fall. She has been going to daycare since

birth. I always enrolled her in special needs if she needed it. Right now

she is doing alright and can walk so I seen no need for it at this time.

Although it is only affected her r knee. The only problem I am having now is

in her eye, she was diagnosed with glacoma 3 weeks ago and will be going in

for surgery soon. I am very sorry to hear about your daughter, I have alot

of stories to share if you like, I know i always found it easy when others

shared their stories with me. ziegler

>From: ~Deborah Sawey~ <sawey@...>

>Reply- egroups

>JRA-List < egroups>

>Subject: Howdy From TEXAS! *New Member Introduction*

>Date: Tue, 18 Apr 2000 12:15:07 -0500

>

>Howdy Ya'll,

>

>My name is Deborah and I have a 5 year old daughter named . She

>was diagnosed with JRA on March 31st and we saw the opthalmologist 4

>days later and was diagnosed as having the uveitis in both eyes and a

>2.5mm cataract in her left eye.

>

>She just turned 5 in Jan and right now has 4 joints involved and the dr

>has noted 3 more as " possible " . She currently has problems with her,

>right ankle, both knees, and right hip. Both thumbs show some mild

>edema, and her right elbow as well.

>

>I went from having a " normal " if there is such a thing *giggle* 5 year

>old to having one that cannot run and wants to just sit all the time in

>matter of 3 months.

>

>The symptoms first started as a swollen ankle, she told me she bumped

>it on her bed (this was on a Friday night). I am a nurse so I just

>wrapped in ace wrap, elevated it, applied cold--was not too worried as

>she would bear weight on it. Called the dr on Monday and he agreed with

>me. After a week still swollen now called dr back and saw him for

>visit(could not see him for 4 days). Knee now swollen and ankle still

>swollen too but would bear weight on them. Dr said " swelling on knee

>due to her compensating for ankle and was not broke " ...Ok so home we

>went. Another week went by and still swollen and now I am worried.

>Called dr and made another appt (3 more days wait) demanded X-rays and

>referral to Pediatriatic Ortho dr.

>

>Ok the radiologist was not sure but could not rule out a Salter I

>fracture on the growth plate? So right ankle was put in cast----3 weeks

>later took cast off and ankle was more swollen and knee was as well.

>

>So now more x-rays taken and see another dr---this ortho. dr says " I

>think she has JRA " OH MY!!!

>

>So now call Texas Children's and make appt with rehum. (wait 2 more

>weeks) so then we go and get final diagnosis!! What a blow. She is

>positive for the antigen....and so then rush to see eye dr and then BAM

>again----has the eye infection and cataract.

>

>Ok now I have told you our story---the rest you probably know.

>

>We have 2 week visit with eye dr tomorrow and see if the drops have

>helped check the infection and cataract.

>

>I had 3 babies in 35 months (YES--you read that correctly--so I will not

>be able to reply to all of your emails, but they will be read!!!

>

>I have a web site that is ***badly out of date*** sorry, just too busy!

>

>My question now.....any moms of 5 year olds out there? will

>start Kindergarten in the fall---and I want to know if I should enroll

>her in the " special services " or just enroll her as normal child? I

>have no clue as to how well she will do...as is now she is slow to rise

>and get going but once up is OK untill she gets too tired and does too

>much and then gets really cranky~

>

>What did you moms of 5 year old's do when they started school??

>

>Thanks and {{{Beanie Hugs}}}

>

>Deborah, , & Family

>===============================================================

>HOWDY from TEXAS-----Meet me and my family

>http://www.ForeverCollectible.com

> !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

>http://www.fortunecity.com/uproar/sports/301/beanies.html

>-------Sign Up Here And Get $10.00 For FREE--------

>https://secure.paypal.com/refer/pal=sawey%40alpha1.net

>$$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy)

>http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

______________________________________________________

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

[Guest guest]

Hi Deborah,

You story sounds a lot like my daughters. She was just 2 when she

was diagnosed. Regarding you question of school, I would take to

your district to find out what special programs they have that can

work with the regular classes. Its been my experience that if you

allow JRA to overshadow life it will be a lot harder for her

to go back to her old life. is currently in 1st grade, in a

regular class setting. I think to make their lifes as normal as

possible is the key. has some difficulting in PE but the school

is wonderful with modifying her activities.

Email me if you would like to talk more.

Reynolds

> Howdy Ya'll,

>

> My name is Deborah and I have a 5 year old daughter named .

She

> was diagnosed with JRA on March 31st and we saw the opthalmologist 4

> days later and was diagnosed as having the uveitis in both eyes and

a

> 2.5mm cataract in her left eye.

>

> She just turned 5 in Jan and right now has 4 joints involved and

the dr

> has noted 3 more as " possible " . She currently has problems with

her,

> right ankle, both knees, and right hip. Both thumbs show some mild

> edema, and her right elbow as well.

>

> I went from having a " normal " if there is such a thing *giggle* 5

year

> old to having one that cannot run and wants to just sit all the

time in

> matter of 3 months.

>

> The symptoms first started as a swollen ankle, she told me she

bumped

> it on her bed (this was on a Friday night). I am a nurse so I just

> wrapped in ace wrap, elevated it, applied cold--was not too worried

as

> she would bear weight on it. Called the dr on Monday and he agreed

with

> me. After a week still swollen now called dr back and saw him for

> visit(could not see him for 4 days). Knee now swollen and ankle

still

> swollen too but would bear weight on them. Dr said " swelling on

knee

> due to her compensating for ankle and was not broke " ...Ok so home we

> went. Another week went by and still swollen and now I am worried.

> Called dr and made another appt (3 more days wait) demanded X-rays

and

> referral to Pediatriatic Ortho dr.

>

> Ok the radiologist was not sure but could not rule out a Salter I

> fracture on the growth plate? So right ankle was put in cast----3

weeks

> later took cast off and ankle was more swollen and knee was as well.

>

> So now more x-rays taken and see another dr---this ortho. dr says " I

> think she has JRA " OH MY!!!

>

> So now call Texas Children's and make appt with rehum. (wait 2 more

> weeks) so then we go and get final diagnosis!! What a blow. She is

> positive for the antigen....and so then rush to see eye dr and then

BAM

> again----has the eye infection and cataract.

>

> Ok now I have told you our story---the rest you probably know.

>

> We have 2 week visit with eye dr tomorrow and see if the drops have

> helped check the infection and cataract.

>

> I had 3 babies in 35 months (YES--you read that correctly--so I

will not

> be able to reply to all of your emails, but they will be read!!!

>

> I have a web site that is ***badly out of date*** sorry, just too

busy!

>

> My question now.....any moms of 5 year olds out there? will

> start Kindergarten in the fall---and I want to know if I should

enroll

> her in the " special services " or just enroll her as normal child?

I

> have no clue as to how well she will do...as is now she is slow to

rise

> and get going but once up is OK untill she gets too tired and does

too

> much and then gets really cranky~

>

> What did you moms of 5 year old's do when they started school??

>

> Thanks and {{{Beanie Hugs}}}

>

> Deborah, , & Family

> ===============================================================

> HOWDY from TEXAS-----Meet me and my family

> http://www.ForeverCollectible.com

> !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

> http://www.fortunecity.com/uproar/sports/301/beanies.html

> -------Sign Up Here And Get $10.00 For FREE--------

> https://secure.paypal.com/refer/pal=sawey%40alpha1.net

> $$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy)

> http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

[Guest guest]

,

I saw on your posting that your daughter was diagnosed with glaucoma. Was she

having inflammation in her eye prior to the diagnosis? My son has

pauciarticular JRA the pain being in his knees. That has gone away since he

has been on Methotrexate now for 7 months. His problem has been in his eye.

He has been on the predforte drops for over a year. 2 months ago his pressure

started to increase in both of his eyes from the steriod in the Predforte. we

had the best checkup ever @ his eyew dr a couple weeks ago. But now it is

inflammed all over again with 2+ cells in his left eye. I spoke with Angel a

few weeks ago re: her daughter seems to have the same problem as .

Just wondering if your dr told you anything re: the steroid drops. They have

upped ' methotrexate to 25mg. and cyclosporine to 100mg. Does this

ever end???

Nan Bianchine

Nicks Mom

[Guest guest]

Welcome to the list Deborah. You will receive lots of good info. here. My

daughter is older, but has been quite sick some of these last 5 months.

n is in fifth grade and has systemic JRA. She missed about 3 months

this year off and on. We have tried to keep her life as normal as possible.

When she is in a flare, we might bring her to school later in the day when

she loosens up. I tutor her at home on the really bad days. Now this was

really at the beginning of the disease, and now that it is more under

control she is attending regularly. She doesn't have a normal amount of

energy for an 11 year old, and we put her to bed very early. We find that

if she gets overtired she can really go downhill fast. I don't know if they

ever get there regular amount of energy back unless they go in remission.

The school has been very supportive of us and it makes allowances for n

when she is in a flare. Praying for a cure.

Howdy From TEXAS! *New Member Introduction*

>Howdy Ya'll,

>

>My name is Deborah and I have a 5 year old daughter named . She

>was diagnosed with JRA on March 31st and we saw the opthalmologist 4

>days later and was diagnosed as having the uveitis in both eyes and a

>2.5mm cataract in her left eye.

>

>She just turned 5 in Jan and right now has 4 joints involved and the dr

>has noted 3 more as " possible " . She currently has problems with her,

>right ankle, both knees, and right hip. Both thumbs show some mild

>edema, and her right elbow as well.

>

>I went from having a " normal " if there is such a thing *giggle* 5 year

>old to having one that cannot run and wants to just sit all the time in

>matter of 3 months.

>

>The symptoms first started as a swollen ankle, she told me she bumped

>it on her bed (this was on a Friday night). I am a nurse so I just

>wrapped in ace wrap, elevated it, applied cold--was not too worried as

>she would bear weight on it. Called the dr on Monday and he agreed with

>me. After a week still swollen now called dr back and saw him for

>visit(could not see him for 4 days). Knee now swollen and ankle still

>swollen too but would bear weight on them. Dr said " swelling on knee

>due to her compensating for ankle and was not broke " ...Ok so home we

>went. Another week went by and still swollen and now I am worried.

>Called dr and made another appt (3 more days wait) demanded X-rays and

>referral to Pediatriatic Ortho dr.

>

>Ok the radiologist was not sure but could not rule out a Salter I

>fracture on the growth plate? So right ankle was put in cast----3 weeks

>later took cast off and ankle was more swollen and knee was as well.

>

>So now more x-rays taken and see another dr---this ortho. dr says " I

>think she has JRA " OH MY!!!

>

>So now call Texas Children's and make appt with rehum. (wait 2 more

>weeks) so then we go and get final diagnosis!! What a blow. She is

>positive for the antigen....and so then rush to see eye dr and then BAM

>again----has the eye infection and cataract.

>

>Ok now I have told you our story---the rest you probably know.

>

>We have 2 week visit with eye dr tomorrow and see if the drops have

>helped check the infection and cataract.

>

>I had 3 babies in 35 months (YES--you read that correctly--so I will not

>be able to reply to all of your emails, but they will be read!!!

>

>I have a web site that is ***badly out of date*** sorry, just too busy!

>

>My question now.....any moms of 5 year olds out there? will

>start Kindergarten in the fall---and I want to know if I should enroll

>her in the " special services " or just enroll her as normal child? I

>have no clue as to how well she will do...as is now she is slow to rise

>and get going but once up is OK untill she gets too tired and does too

>much and then gets really cranky~

>

>What did you moms of 5 year old's do when they started school??

>

>Thanks and {{{Beanie Hugs}}}

>

>Deborah, , & Family

>===============================================================

>HOWDY from TEXAS-----Meet me and my family

>http://www.ForeverCollectible.com

> !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

>http://www.fortunecity.com/uproar/sports/301/beanies.html

>-------Sign Up Here And Get $10.00 For FREE--------

>https://secure.paypal.com/refer/pal=sawey%40alpha1.net

>$$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy)

>http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

>

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

>Get your bargains at AndysGarage.com!

>1/2582/1/_/524922/_/956078219/

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

>

>For links to websites with JRA info visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Hi Deborah,

What the school does for my daughter is meet her needs accordingly to

what is needed at that time. Whatever you do please don't handicap her you'll

regret it later. she has poly. and they wanted to put in special ed, but i

said no because she didn't need sped. so they have a nurse to help when

needed. when her hands swells another student writes for her and the school

bought her those fat pencils the dr. said she had to use. as far as p. e

goes it depends on how my daughter feels that day. please don't let the

school handicap her either. they can help her while in her regular classes to

don't let them tell you differerntly ok. my daughter is 9 1/2

sweetpea200001

[Guest guest]

Hi,

My name is Deborah---Daughter is , and no indication of anything

wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and

she doesn't have glaucoma, was diagnosed with a cataract in left eye and

the infection in both eyes.

I have gotten some emails from people telling me that I should not put

my daughter in *special education* you must have misunderstood my

question. Not considering special education....here in Texas they call

it special services.

She will be in regular class room with *normal* children but when and if

she has problems can get special help-----like they have a physical

therapist in the school district and can have that in place of PE if we

sign her up, and on days when cannot write will be excused from doing

so---but only if I sign her up---if I dont sign her up then is expected

to do as all *normal* children are to do---and if misses too much school

will be held back if not signed up for " special services " . And if not

signed up is expected to preform in PE as well...if they told her and 3

other little girls to go jump rope she could not do it--and that would

count against her. She cannot even run and has hard time walking up

steps, much less play hop scotch or jump rope or do jumping jacks.

I was told by dr NO impact on joints of any kind----anyone else told

this? She just diagnosed 19 days ago and has lots of swelling in many

joints and hip????

She will not be in a special class room or have special teacher---just

be given additional time to do things that are *difficult* for her when

she is having bad day~ They can and will provide a buddy for her on

days when she cannot carry her own lunch tray, or open her locker, and

will let her make up home work during PE if she was just too tired the

night before to complete the nights assigned homework~

Is anyone signed up for a program similar to this?

Not special education---would never consider that as she is very bright

only has physical limitations---unless the cataract gets much bigger or

on Thurs we find that has one in other eye too...and will take that as

it comes.

Is anyone on this list in TEXAS???

Thanks,

Deborah

njbsmom@... wrote:

>

> ,

>

> I saw on your posting that your daughter was diagnosed with glaucoma. Was she

> having inflammation in her eye prior to the diagnosis? My son has

> pauciarticular JRA the pain being in his knees. That has gone away since he

> has been on Methotrexate now for 7 months. His problem has been in his eye.

> He has been on the predforte drops for over a year. 2 months ago his pressure

> started to increase in both of his eyes from the steriod in the Predforte. we

> had the best checkup ever @ his eyew dr a couple weeks ago. But now it is

> inflammed all over again with 2+ cells in his left eye. I spoke with Angel a

> few weeks ago re: her daughter seems to have the same problem as .

> Just wondering if your dr told you anything re: the steroid drops. They have

> upped ' methotrexate to 25mg. and cyclosporine to 100mg. Does this

> ever end???

>

> Nan Bianchine

> Nicks Mom

>

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

> Avoid the lines and visit avis.com for quick and easy online

> reservations. Enjoy a compact car nationwide for only $29 a day!

> Click here for more details.

> 1/3011/1/_/524922/_/956096413/

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

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

--

===============================================================

HOWDY from TEXAS-----Meet me and my family

http://www.ForeverCollectible.com

!+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

http://www.fortunecity.com/uproar/sports/301/beanies.html

-------Sign Up Here And Get $10.00 For FREE--------

https://secure.paypal.com/refer/pal=sawey%40alpha1.net

$$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy)

http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

[Guest guest]

,

Your reply was excellent. I know I've never

intorduced myself to the group here but when I read

your reply, I knew I needed to tell you how true it

is. I am speaking as an adult who has been through

JRA. Keep life as normal as possible. PE was my

downfall at times. In middle school, the PE teacher

had me do laundry for my grade.

Waynette

--- rous@... wrote:

> Hi Deborah,

>

> You story sounds a lot like my daughters. She was

> just 2 when she

> was diagnosed. Regarding you question of school, I

> would take to

> your district to find out what special programs they

> have that can

> work with the regular classes. Its been my

> experience that if you

> allow JRA to overshadow life it will be a lot

> harder for her

> to go back to her old life. is currently in

> 1st grade, in a

> regular class setting. I think to make their lifes

> as normal as

> possible is the key. has some difficulting in

> PE but the school

> is wonderful with modifying her activities.

>

> Email me if you would like to talk more.

> Reynolds

>

>

> > Howdy Ya'll,

> >

> > My name is Deborah and I have a 5 year old

> daughter named .

> She

> > was diagnosed with JRA on March 31st and we saw

> the opthalmologist 4

> > days later and was diagnosed as having the uveitis

> in both eyes and

> a

> > 2.5mm cataract in her left eye.

> >

> > She just turned 5 in Jan and right now has 4

> joints involved and

> the dr

> > has noted 3 more as " possible " . She currently has

> problems with

> her,

> > right ankle, both knees, and right hip. Both

> thumbs show some mild

> > edema, and her right elbow as well.

> >

> > I went from having a " normal " if there is such a

> thing *giggle* 5

> year

> > old to having one that cannot run and wants to

> just sit all the

> time in

> > matter of 3 months.

> >

> > The symptoms first started as a swollen ankle,

> she told me she

> bumped

> > it on her bed (this was on a Friday night). I am

> a nurse so I just

> > wrapped in ace wrap, elevated it, applied

> cold--was not too worried

> as

> > she would bear weight on it. Called the dr on

> Monday and he agreed

> with

> > me. After a week still swollen now called dr back

> and saw him for

> > visit(could not see him for 4 days). Knee now

> swollen and ankle

> still

> > swollen too but would bear weight on them. Dr

> said " swelling on

> knee

> > due to her compensating for ankle and was not

> broke " ...Ok so home we

> > went. Another week went by and still swollen and

> now I am worried.

> > Called dr and made another appt (3 more days wait)

> demanded X-rays

> and

> > referral to Pediatriatic Ortho dr.

> >

> > Ok the radiologist was not sure but could not rule

> out a Salter I

> > fracture on the growth plate? So right ankle was

> put in cast----3

> weeks

> > later took cast off and ankle was more swollen and

> knee was as well.

> >

> > So now more x-rays taken and see another dr---this

> ortho. dr says " I

> > think she has JRA " OH MY!!!

> >

> > So now call Texas Children's and make appt with

> rehum. (wait 2 more

> > weeks) so then we go and get final diagnosis!!

> What a blow. She is

> > positive for the antigen....and so then rush to

> see eye dr and then

> BAM

> > again----has the eye infection and cataract.

> >

> > Ok now I have told you our story---the rest you

> probably know.

> >

> > We have 2 week visit with eye dr tomorrow and see

> if the drops have

> > helped check the infection and cataract.

> >

> > I had 3 babies in 35 months (YES--you read that

> correctly--so I

> will not

> > be able to reply to all of your emails, but they

> will be read!!!

> >

> > I have a web site that is ***badly out of date***

> sorry, just too

> busy!

> >

> > My question now.....any moms of 5 year olds out

> there? will

> > start Kindergarten in the fall---and I want to

> know if I should

> enroll

> > her in the " special services " or just enroll her

> as normal child?

> I

> > have no clue as to how well she will do...as is

> now she is slow to

> rise

> > and get going but once up is OK untill she gets

> too tired and does

> too

> > much and then gets really cranky~

> >

> > What did you moms of 5 year old's do when they

> started school??

> >

> > Thanks and {{{Beanie Hugs}}}

> >

> > Deborah, , & Family

> >

>

===============================================================

> > HOWDY from TEXAS-----Meet me and my family

> > http://www.ForeverCollectible.com

> > !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

> >

>

http://www.fortunecity.com/uproar/sports/301/beanies.html

> > -------Sign Up Here And Get $10.00 For

> FREE--------

> >

>

https://secure.paypal.com/refer/pal=sawey%40alpha1.net

> > $$$$ Make Money from Your Web Site $$$$$ (Sign Up

> It Is Easy)

> >

>

http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

>

>

=====

I'm not under the alkafluence of inkahol that some thinkle peep I am.

__________________________________________________

[Guest guest]

My daughter is not on the meth, never heard about it. Right now she is on

celebrex for the joints and her left eye is is on cosopt 3 times a day and

timolol 2 times a day, at this point there is no active arthritis in her

eye, just the pressure is up to 38, no nerve damage yet, (thank god) and she

was on the predforte but they took her off because that also can damage the

nerve. On my way to work will check later.

>From: ~Deborah Sawey~ <sawey@...>

>Reply- egroups

> egroups

>Subject: Re: Howdy From TEXAS! *New Member Introduction*

>Date: Tue, 18 Apr 2000 21:37:20 -0500

>

>Hi,

>

>My name is Deborah---Daughter is , and no indication of anything

>wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and

>she doesn't have glaucoma, was diagnosed with a cataract in left eye and

>the infection in both eyes.

>

>I have gotten some emails from people telling me that I should not put

>my daughter in *special education* you must have misunderstood my

>question. Not considering special education....here in Texas they call

>it special services.

>

>She will be in regular class room with *normal* children but when and if

>she has problems can get special help-----like they have a physical

>therapist in the school district and can have that in place of PE if we

>sign her up, and on days when cannot write will be excused from doing

>so---but only if I sign her up---if I dont sign her up then is expected

>to do as all *normal* children are to do---and if misses too much school

>will be held back if not signed up for " special services " . And if not

>signed up is expected to preform in PE as well...if they told her and 3

>other little girls to go jump rope she could not do it--and that would

>count against her. She cannot even run and has hard time walking up

>steps, much less play hop scotch or jump rope or do jumping jacks.

>

>I was told by dr NO impact on joints of any kind----anyone else told

>this? She just diagnosed 19 days ago and has lots of swelling in many

>joints and hip????

>

>She will not be in a special class room or have special teacher---just

>be given additional time to do things that are *difficult* for her when

>she is having bad day~ They can and will provide a buddy for her on

>days when she cannot carry her own lunch tray, or open her locker, and

>will let her make up home work during PE if she was just too tired the

>night before to complete the nights assigned homework~

>

>Is anyone signed up for a program similar to this?

>

>Not special education---would never consider that as she is very bright

>only has physical limitations---unless the cataract gets much bigger or

>on Thurs we find that has one in other eye too...and will take that as

>it comes.

>

>Is anyone on this list in TEXAS???

>

>Thanks,

>

>Deborah

>

>

>

>njbsmom@... wrote:

> >

> > ,

> >

> > I saw on your posting that your daughter was diagnosed with glaucoma.

>Was she

> > having inflammation in her eye prior to the diagnosis? My son

>has

> > pauciarticular JRA the pain being in his knees. That has gone away since

>he

> > has been on Methotrexate now for 7 months. His problem has been in his

>eye.

> > He has been on the predforte drops for over a year. 2 months ago his

>pressure

> > started to increase in both of his eyes from the steriod in the

>Predforte. we

> > had the best checkup ever @ his eyew dr a couple weeks ago. But now it

>is

> > inflammed all over again with 2+ cells in his left eye. I spoke with

>Angel a

> > few weeks ago re: her daughter seems to have the same problem as

>.

> > Just wondering if your dr told you anything re: the steroid drops. They

>have

> > upped ' methotrexate to 25mg. and cyclosporine to 100mg. Does

>this

> > ever end???

> >

> > Nan Bianchine

> > Nicks Mom

> >

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

> > Avoid the lines and visit avis.com for quick and easy online

> > reservations. Enjoy a compact car nationwide for only $29 a day!

> > Click here for more details.

> > 1/3011/1/_/524922/_/956096413/

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

> >

> > For links to websites with JRA info visit:

> > http://www.geocities.com/Heartland/Village/8414/Links.html

>

>--

>===============================================================

>HOWDY from TEXAS-----Meet me and my family

>http://www.ForeverCollectible.com

> !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

>http://www.fortunecity.com/uproar/sports/301/beanies.html

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>http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

______________________________________________________

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[Guest guest]

Hi Deborah

We were in Texas til June'98, so my daughter only attended kindergarten

there. My younger kids--those not in high school--attended Catholic

schools, so I did not have to deal with the special services plan.

As far as being absent goes---you should not have to enroll your

daughter in special services in case of too many days out. My then 9th

grader has a severe bout with mono in Texas and missed three weeks of

school. The only reason she didn't miss more was the arrival of

Christmas break. Due to " excessive " absences, the school district said

we would have to appear before a committe and ask that my daughter be

promoted. I called the principal and told him I WOULD NOT waste my time

like that. They had several notes from the doctor, keeping them fully

informed. And did all her work and passed all classes and tests.

Bottom line---you can fight this!

As for PE----I did speak to the local public school, in case we decided

to enroll the kids there (we are military,so move often). I got the same

basic line that you got--services or regular PE. They said the doctor

needed to tell them what could and could not do. I tried to

explain that JRA does not work that way---some days a child might be

able to run and run, and the next day that same child might need help

getting around. That's one of the reasons I didn't put the kids in

public schools. What I have since learned is that you can request a 504

plan be drawn up for your child. This is FEDERAL LAW, not a state thing.

In 's case, her 504 covers things like PE (we had a problematic PE

teacher last year), stating that she is to be permitted to set her own

limits. is not a complainer, so if she tells a teacher that

something is too painful, she is telling the truth. So I wanted to make

sure she is in regular PE, but not penalized if she sits out sometimes.

The other things in her 504 are pretty basic--allowed to get up and move

around if she is getting stiff (more for substitute teacher's--her

teacher is wonderful!!), extra time with written assignments when her

hands flare. Basic stuff. What I did learn is that here in Virginia,

where we have SOL testing--similar to TASS--any needed accomodations for

testing MUST be in a 504 or an IEP BEFORE testing begins. So if your

child has hand involvement, you may need to look into this. You could

say something like " An aide is needed to color in the circles on

standardized testing " or that your daughter is to get extra time. While

she might be capable of taking the test without accomodations when the

time comes, I have learned that you need to " cover your bases " .

Hope this all makes sense, and I'm sorry it got so long.

Liz

~Deborah Sawey~ wrote:

>

> Hi,

>

> My name is Deborah---Daughter is , and no indication of anything

> wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and

> she doesn't have glaucoma, was diagnosed with a cataract in left eye and

> the infection in both eyes.

>

> I have gotten some emails from people telling me that I should not put

> my daughter in *special education* you must have misunderstood my

> question. Not considering special education....here in Texas they call

> it special services.

>

> She will be in regular class room with *normal* children but when and if

> she has problems can get special help-----like they have a physical

> therapist in the school district and can have that in place of PE if we

> sign her up, and on days when cannot write will be excused from doing

> so---but only if I sign her up---if I dont sign her up then is expected

> to do as all *normal* children are to do---and if misses too much school

> will be held back if not signed up for " special services " . And if not

> signed up is expected to preform in PE as well...if they told her and 3

> other little girls to go jump rope she could not do it--and that would

> count against her. She cannot even run and has hard time walking up

> steps, much less play hop scotch or jump rope or do jumping jacks.

>

> I was told by dr NO impact on joints of any kind----anyone else told

> this? She just diagnosed 19 days ago and has lots of swelling in many

> joints and hip????

>

> She will not be in a special class room or have special teacher---just

> be given additional time to do things that are *difficult* for her when

> she is having bad day~ They can and will provide a buddy for her on

> days when she cannot carry her own lunch tray, or open her locker, and

> will let her make up home work during PE if she was just too tired the

> night before to complete the nights assigned homework~

>

> Is anyone signed up for a program similar to this?

>

> Not special education---would never consider that as she is very bright

> only has physical limitations---unless the cataract gets much bigger or

> on Thurs we find that has one in other eye too...and will take that as

> it comes.

>

> Is anyone on this list in TEXAS???

>

> Thanks,

>

> Deborah

>

> njbsmom@... wrote:

> >

> > ,

> >

> > I saw on your posting that your daughter was diagnosed with glaucoma. Was

she

> > having inflammation in her eye prior to the diagnosis? My son has

> > pauciarticular JRA the pain being in his knees. That has gone away since he

> > has been on Methotrexate now for 7 months. His problem has been in his eye.

> > He has been on the predforte drops for over a year. 2 months ago his

pressure

> > started to increase in both of his eyes from the steriod in the Predforte.

we

> > had the best checkup ever @ his eyew dr a couple weeks ago. But now it is

> > inflammed all over again with 2+ cells in his left eye. I spoke with Angel a

> > few weeks ago re: her daughter seems to have the same problem as .

> > Just wondering if your dr told you anything re: the steroid drops. They have

> > upped ' methotrexate to 25mg. and cyclosporine to 100mg. Does this

> > ever end???

> >

> > Nan Bianchine

> > Nicks Mom

> >

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

> > Avoid the lines and visit avis.com for quick and easy online

> > reservations. Enjoy a compact car nationwide for only $29 a day!

> > Click here for more details.

> > 1/3011/1/_/524922/_/956096413/

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

> >

> > For links to websites with JRA info visit:

> > http://www.geocities.com/Heartland/Village/8414/Links.html

>

> --

> ===============================================================

> HOWDY from TEXAS-----Meet me and my family

> http://www.ForeverCollectible.com

> !+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

> http://www.fortunecity.com/uproar/sports/301/beanies.html

> -------Sign Up Here And Get $10.00 For FREE--------

> https://secure.paypal.com/refer/pal=sawey%40alpha1.net

> $$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy)

> http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

>

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

> Avoid the lines and visit avis.com for quick and easy online

> reservations. Enjoy a compact car nationwide for only $29 a day!

> Click here for more details.

> 1/3011/1/_/524922/_/956111955/

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

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

hi deborah. my name is cheri and my son tristan was diagnosed with poly JRA

when he was 16 months old. he turns 3 this saturday and has been going to

texas childrens hospital. he sees dr perez and occasionally dr warren. i love

it there, they have taken excellent care of my son and my husband and i as

well, as far as making us feel comfortable and answering any questions. i

would DEFINITELY sign your daughter up for the special services when you

enroll her in school. atleast it will be there if she needs it, and if she

doesnt, fantastic. i still have a few years before tristan starts school and

you can bet if he is still having problems i will take all the help he can

get, without making him feel *different*. good luck, i know how it feels to

be at the beginning but it gets much easier! cheri

[Guest guest]

Hi,

Welcome, Deborah! We're in Hawaii. That's pretty far from Texas. Well,

it's pretty far from everywhere! My son Josh has had systemic JRA for

almost 5 years. He has never had eye involvement from the JRA but he

sees the eye doctor at least twice a year because he takes plaquinel and

because we have to monitor his eyes to see if there's been any

progression or change in the early cataracts that were first noticed

about two years ago ~ which are probably a result of his long-term

steroid use.

My son has had JRA since the last month of kindergarden. We went a few

years with just speaking to the teachers and school staff about his

illness and what might be expected as far as more frequent absences and

possible changes in behavior or special adaptations. I'd bring in any

doctors notes, as far as any short-term limitations for things like PE.

When the arthritis was very active in his ankles, he was having some

mobility issues. He couldn't be expected to participate in activities

like running and jumping during those times, as he was having difficulty

doing things like just walking.

Then we went ahead and did an IEP and signed him up for special ed. His

JRA led to inclusion in the 'other health' category. He's always been in

a regular classroom. And he excels in academic work. It's just in case,

like others have said, he needs any adaptations in the routine or

workload because of the illness. He tends to miss more school days than

a child without a chronic illness, or be brought to school late if he is

having a difficult morning and starts to feel better in a few hours. It

just made it easier, once it was all in writing, to do things like have

an extra set of text books at home, be sure he can go to the health room

if he's having a hard time and needs to rest for a while, give him a

little extra time to get from his homeroom class to his math class, on

the other side of the large campus.

Actually, the first time we ever got any 'real services' because of his

illness was this past January, when he started getting a home tutor

twice a week to help him with any areas that he may have been feeling

stressed about possibly not doing his best, because he had missed

lessons. He's a perfectionistic. I pick up his homework and classwork

each day and as soon as he's well enough he gets to work. In some

situations it was harder for him because he wasn't there when a new

concept was introduced. I'd help him learn the material but now his

tutor does that instead. His IEP says he has to complete at least 80% of

the coursework with a C or better average. He normally completes 100% of

the work and usually gets a B or better(made the honor roll again this

last quarter). The only instance I can think of is that with some math

homework they'd be assigned, say, 100 problems to write out and answer.

If his wrists or fingers were affected badly, he'd have me write out the

answers he got. Now, if need be, once he understands the concepts and

how to do the work, he would only have to 80% of the problems and still

be okay.

With Josh, different joints have been affected to varying degrees, at

different times. He's also had arthritic involvement in other parts of

his body. Pericarditis, pleurisy, chosteochondritis, tendonitis, organ

inflammation. His JRA was pretty severe and persistent, despite strong

meds. He had very high fevers and rash regularly ~almost everyday~ for

over a year and this still happens, even now, whenever he has a flare.

We never really know where it will be bothering him next. Right now he

seems to be doing really well (despite his last labs coming back

not-so-good) but we never know if or when another crisis will present. A

lot of times things will be going smoothely and then all of a sudden,

the status changes. He sees the rheumatologist once a month. Usually

gets blood labs done once a month (in the beginning, it was every two

weeks).

Still, he's a great kid with a very normal childhood and physically,

he's come a long way. It seems like the arthritis is being controlled

very well right now. I know ... I've said that before! Hopefully no

setbacks, any time soon. In a lot of ways, this gets easier to deal with

over time. Except that you want to believe that the worst is over when

they're doing so good and a flare up can disappoint you and bring you

back to the reality that this can be a long-term chronic illness that

tends to subside and recur with a will of it's own. It has taught us a

lot about not taking things for granted though and I truly do appreciate

times like right now, when most things are going just fine for my son

and the arthritis isn't being a big pain. Little complaints have become

a part of life. It's just the major flares that cause a problem and I

hope we can steer clear of them for a very long time. Even as we

continue tapering down on the amount of steroids he needs to take!

Sorry this turned out to be such a long post!

Take care,

Georgina

~Deborah Sawey~ wrote:

>

> Hi,

>

> My name is Deborah---Daughter is , and no indication of anything

> wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and

> she doesn't have glaucoma, was diagnosed with a cataract in left eye and

> the infection in both eyes.

>

> I have gotten some emails from people telling me that I should not put

> my daughter in *special education* you must have misunderstood my

> question. Not considering special education....here in Texas they call

> it special services.

>

> She will be in regular class room with *normal* children but when and if

> she has problems can get special help-----like they have a physical

> therapist in the school district and can have that in place of PE if we

> sign her up, and on days when cannot write will be excused from doing

> so---but only if I sign her up---if I dont sign her up then is expected

> to do as all *normal* children are to do---and if misses too much school

> will be held back if not signed up for " special services " . And if not

> signed up is expected to preform in PE as well...if they told her and 3

> other little girls to go jump rope she could not do it--and that would

> count against her. She cannot even run and has hard time walking up

> steps, much less play hop scotch or jump rope or do jumping jacks.

>

> I was told by dr NO impact on joints of any kind----anyone else told

> this? She just diagnosed 19 days ago and has lots of swelling in many

> joints and hip????

>

> She will not be in a special class room or have special teacher---just

> be given additional time to do things that are *difficult* for her when

> she is having bad day~ They can and will provide a buddy for her on

> days when she cannot carry her own lunch tray, or open her locker, and

> will let her make up home work during PE if she was just too tired the

> night before to complete the nights assigned homework~

>

> Is anyone signed up for a program similar to this?

>

> Not special education---would never consider that as she is very bright

> only has physical limitations---unless the cataract gets much bigger or

> on Thurs we find that has one in other eye too...and will take that as

> it comes.

>

> Is anyone on this list in TEXAS???

>

> Thanks,

>

> Deborah

[Guest guest]

We have a similar situation with my 11 1/2 year old daughter. We have a

problematic gym teacher this year. This is almost her 4th year of diagnosis.

My daughter is very midly affectd and has an extremly highpain tolerance

which makes the gym teacher doubt her even more. Her band instructor gets it

more than the gym teacher. My daughter is able to participate in track( the

band instuctor is her coach); He is her biggest cheering section at the

meets. He gets more excited than I do.

We have the 504 plan in place and the only teacher as I said not to get it

is the gym teacher, the one person who should get it. Thanks for listening,

Toni Masura

[Guest guest]

Hi Deborah,

The beginning is usually the very hardest part. Lots of changes. Seeing

your daughter not feeling well. Trying to figure out what's going on and

what you can do to help. Coming to grips with the whirlwind of

diagnosis, all the doctor appts, tests and medicines. Things will

eventually settle down again though. And it will get easier. I know it's

scary but our children have an incredible amount of inner strength. With

our love, guidance and support and the help and expertise of caring

health professionals, they persevere and make the best of things. The

treatments available these days are often very helpful in controlling

the arthritis symptoms. It usually does take some time to figure out the

right course of action but eventually should start having some

improvement. Then she'll feel like being more active again, once the

inflammation is being managed and her joints aren't so sore.

Is taking an anti-inflammatory? Have they mentioned the

possibility of physical therapy? Do you have access to a heated pool?

These things may help. Do let us know how that next eye doctor appt

goes. I hope the eye drops help clear up the current infection. And that

the progression of the cataract can be controlled. My son has

steroid-induced cataract, but his vision hasn't yet been affected and

they've remained stable at the last two eye appts, haven't been getting

any worse. Eye doctor assures us that if and when the need ever arrises,

the surgery isn't too complicated and it usually has good results. He

seems optimistic about it so I try not to worry too much. Just take it

one day at a time.

I hope you'll find some useful information here on the . I

understand how busy you are, with three little ones. So if it ever gets

to be too much email, there's the option of switching your subscription

to the digest mode, where you'll get a condensed email that includes all

the posts of the day. And if you ever have any questions, we've got

quite a few JRA experts here with a wealth of first-hand knowledge and

experience

Take care,

Georgina

~Deborah Sawey~ wrote:

>

> Howdy Ya'll,

>

> My name is Deborah and I have a 5 year old daughter named . She

> was diagnosed with JRA on March 31st and we saw the opthalmologist 4

> days later and was diagnosed as having the uveitis in both eyes and a

> 2.5mm cataract in her left eye.

>

> She just turned 5 in Jan and right now has 4 joints involved and the dr

> has noted 3 more as " possible " . She currently has problems with her,

> right ankle, both knees, and right hip. Both thumbs show some mild

> edema, and her right elbow as well.

>

> I went from having a " normal " if there is such a thing *giggle* 5 year

> old to having one that cannot run and wants to just sit all the time in

> matter of 3 months.

>

> The symptoms first started as a swollen ankle, she told me she bumped

> it on her bed (this was on a Friday night). I am a nurse so I just

> wrapped in ace wrap, elevated it, applied cold--was not too worried as

> she would bear weight on it. Called the dr on Monday and he agreed with

> me. After a week still swollen now called dr back and saw him for

> visit(could not see him for 4 days). Knee now swollen and ankle still

> swollen too but would bear weight on them. Dr said " swelling on knee

> due to her compensating for ankle and was not broke " ...Ok so home we

> went. Another week went by and still swollen and now I am worried.

> Called dr and made another appt (3 more days wait) demanded X-rays and

> referral to Pediatriatic Ortho dr.

>

> Ok the radiologist was not sure but could not rule out a Salter I

> fracture on the growth plate? So right ankle was put in cast----3 weeks

> later took cast off and ankle was more swollen and knee was as well.

>

> So now more x-rays taken and see another dr---this ortho. dr says " I

> think she has JRA " OH MY!!!

>

> So now call Texas Children's and make appt with rehum. (wait 2 more

> weeks) so then we go and get final diagnosis!! What a blow. She is

> positive for the antigen....and so then rush to see eye dr and then BAM

> again----has the eye infection and cataract.

>

> Ok now I have told you our story---the rest you probably know.

>

> We have 2 week visit with eye dr tomorrow and see if the drops have

> helped check the infection and cataract.

>

> I had 3 babies in 35 months (YES--you read that correctly--so I will not

> be able to reply to all of your emails, but they will be read!!!

>

> I have a web site that is ***badly out of date*** sorry, just too busy!

>

> My question now.....any moms of 5 year olds out there? will

> start Kindergarten in the fall---and I want to know if I should enroll

> her in the " special services " or just enroll her as normal child? I

> have no clue as to how well she will do...as is now she is slow to rise

> and get going but once up is OK untill she gets too tired and does too

> much and then gets really cranky~

>

> What did you moms of 5 year old's do when they started school??

>

> Thanks and {{{Beanie Hugs}}}

>

> Deborah, , & Family

[Guest guest]

Hey Ya'll,

With 3 little ones (one with JRA) I have not been able to keep up with

the posts so have made it to " digest "

Anyone wanting to talk to me personaly please feel free to email me

privately at

sawey@...

Well I am so happy that we got into the 504 (that is what they call it

here in TEXAS....so wont' have that problem with PE at school.

HAPPY EASTER!!!

Deb~

rontonitoo@... wrote:

>

> We have a similar situation with my 11 1/2 year old daughter. We have a

> problematic gym teacher this year. This is almost her 4th year of diagnosis.

> My daughter is very midly affectd and has an extremly highpain tolerance

> which makes the gym teacher doubt her even more. Her band instructor gets it

> more than the gym teacher. My daughter is able to participate in track( the

> band instuctor is her coach); He is her biggest cheering section at the

> meets. He gets more excited than I do.

> We have the 504 plan in place and the only teacher as I said not to get it

> is the gym teacher, the one person who should get it. Thanks for listening,

>

>

> Toni Masura

>

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

> Get your bargains at AndysGarage.com!

> 1/2582/1/_/524922/_/956259863/

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

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

--

===============================================================

HOWDY from TEXAS-----Meet me and my family

http://www.ForeverCollectible.com

!+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

http://www.fortunecity.com/uproar/sports/301/beanies.html

-------Sign Up Here And Get $10.00 For FREE--------

https://secure.paypal.com/refer/pal=sawey%40alpha1.net

$$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy)

http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

[Guest guest]

Hey Cheri,

I think they are GREAT at TEXAS Childrens maybe we will see ya there

some time.

I could not keep up with the posts so if you want to email me privately

that is great!!

sawey@...

I hope to keep things as normal as possible but right now with all the

inflammation is very hard. Not responding too well to the Naprosyn so

hope by the time school starts something will be helping.

Must go for now and thanks to ya all for the advice,

Deborah

cheri97706@... wrote:

>

> hi deborah. my name is cheri and my son tristan was diagnosed with poly JRA

> when he was 16 months old. he turns 3 this saturday and has been going to

> texas childrens hospital. he sees dr perez and occasionally dr warren. i love

> it there, they have taken excellent care of my son and my husband and i as

> well, as far as making us feel comfortable and answering any questions. i

> would DEFINITELY sign your daughter up for the special services when you

> enroll her in school. atleast it will be there if she needs it, and if she

> doesnt, fantastic. i still have a few years before tristan starts school and

> you can bet if he is still having problems i will take all the help he can

> get, without making him feel *different*. good luck, i know how it feels to

> be at the beginning but it gets much easier! cheri

>

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

> Whatever you want, chances are you'll find it at one of the hundreds

> of sites in The PointClick Network--like Disney.com, eCost.com,

> FogDog.com and many more. You get paid as you shop and an additional

> 10% off any purchase, anytime.

> 1/2994/1/_/524922/_/956163789/

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

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

--

===============================================================

HOWDY from TEXAS-----Meet me and my family

http://www.ForeverCollectible.com

!+!+!+!+BEANIE BABIES FOR SALE+!+!+!+!

http://www.fortunecity.com/uproar/sports/301/beanies.html

-------Sign Up Here And Get $10.00 For FREE--------

https://secure.paypal.com/refer/pal=sawey%40alpha1.net

$$$$ Make Money from Your Web Site $$$$$ (Sign Up It Is Easy)

http://www.oneandonlynetwork.com/index.htm?MessageID=99 & MID=71028

[Guest guest]

Hey there,

Like I posted earlier---having hard time with all the mail so if you

want to chat privately just email me.

I did go see your web site---think it was yours??? Very nice!!! Wish I

could go to Hawaii!!

yes I want her to be normal--but right now everyone can tell isnot. Has

very altered gait and low activity tolerance. Just hope not on the

steriods too long myself.

Have lots to do going out of town for Easter. Ya'll have a good one and

ALOHA!!

PS: I sell alot of beanie babies to someone in Hawaii---cannot remember

name right now will have to look it up and see if they are close to

you!!

PEACE to you all,

Deb~

Georgina wrote:

>

> Hi,

>

> Welcome, Deborah! We're in Hawaii. That's pretty far from Texas. Well,

> it's pretty far from everywhere! My son Josh has had systemic JRA for

> almost 5 years. He has never had eye involvement from the JRA but he

> sees the eye doctor at least twice a year because he takes plaquinel and

> because we have to monitor his eyes to see if there's been any

> progression or change in the early cataracts that were first noticed

> about two years ago ~ which are probably a result of his long-term

> steroid use.

>

> My son has had JRA since the last month of kindergarden. We went a few

> years with just speaking to the teachers and school staff about his

> illness and what might be expected as far as more frequent absences and

> possible changes in behavior or special adaptations. I'd bring in any

> doctors notes, as far as any short-term limitations for things like PE.

> When the arthritis was very active in his ankles, he was having some

> mobility issues. He couldn't be expected to participate in activities

> like running and jumping during those times, as he was having difficulty

> doing things like just walking.

> Then we went ahead and did an IEP and signed him up for special ed. His

> JRA led to inclusion in the 'other health' category. He's always been in

> a regular classroom. And he excels in academic work. It's just in case,

> like others have said, he needs any adaptations in the routine or

> workload because of the illness. He tends to miss more school days than

> a child without a chronic illness, or be brought to school late if he is

> having a difficult morning and starts to feel better in a few hours. It

> just made it easier, once it was all in writing, to do things like have

> an extra set of text books at home, be sure he can go to the health room

> if he's having a hard time and needs to rest for a while, give him a

> little extra time to get from his homeroom class to his math class, on

> the other side of the large campus.

>

> Actually, the first time we ever got any 'real services' because of his

> illness was this past January, when he started getting a home tutor

> twice a week to help him with any areas that he may have been feeling

> stressed about possibly not doing his best, because he had missed

> lessons. He's a perfectionistic. I pick up his homework and classwork

> each day and as soon as he's well enough he gets to work. In some

> situations it was harder for him because he wasn't there when a new

> concept was introduced. I'd help him learn the material but now his

> tutor does that instead. His IEP says he has to complete at least 80% of

> the coursework with a C or better average. He normally completes 100% of

> the work and usually gets a B or better(made the honor roll again this

> last quarter). The only instance I can think of is that with some math

> homework they'd be assigned, say, 100 problems to write out and answer.

> If his wrists or fingers were affected badly, he'd have me write out the

> answers he got. Now, if need be, once he understands the concepts and

> how to do the work, he would only have to 80% of the problems and still

> be okay.

>

> With Josh, different joints have been affected to varying degrees, at

> different times. He's also had arthritic involvement in other parts of

> his body. Pericarditis, pleurisy, chosteochondritis, tendonitis, organ

> inflammation. His JRA was pretty severe and persistent, despite strong

> meds. He had very high fevers and rash regularly ~almost everyday~ for

> over a year and this still happens, even now, whenever he has a flare.

> We never really know where it will be bothering him next. Right now he

> seems to be doing really well (despite his last labs coming back

> not-so-good) but we never know if or when another crisis will present. A

> lot of times things will be going smoothely and then all of a sudden,

> the status changes. He sees the rheumatologist once a month. Usually

> gets blood labs done once a month (in the beginning, it was every two

> weeks).

>

> Still, he's a great kid with a very normal childhood and physically,

> he's come a long way. It seems like the arthritis is being controlled

> very well right now. I know ... I've said that before! Hopefully no

> setbacks, any time soon. In a lot of ways, this gets easier to deal with

> over time. Except that you want to believe that the worst is over when

> they're doing so good and a flare up can disappoint you and bring you

> back to the reality that this can be a long-term chronic illness that

> tends to subside and recur with a will of it's own. It has taught us a

> lot about not taking things for granted though and I truly do appreciate

> times like right now, when most things are going just fine for my son

> and the arthritis isn't being a big pain. Little complaints have become

> a part of life. It's just the major flares that cause a problem and I

> hope we can steer clear of them for a very long time. Even as we

> continue tapering down on the amount of steroids he needs to take!

>

> Sorry this turned out to be such a long post!

> Take care,

> Georgina

>

> ~Deborah Sawey~ wrote:

> >

> > Hi,

> >

> > My name is Deborah---Daughter is , and no indication of anything

> > wrong with eyesite prior to diagnosis of JRA and then trip to Opth...and

> > she doesn't have glaucoma, was diagnosed with a cataract in left eye and

> > the infection in both eyes.

> >

> > I have gotten some emails from people telling me that I should not put

> > my daughter in *special education* you must have misunderstood my

> > question. Not considering special education....here in Texas they call

> > it special services.

> >

> > She will be in regular class room with *normal* children but when and if

> > she has problems can get special help-----like they have a physical

> > therapist in the school district and can have that in place of PE if we

> > sign her up, and on days when cannot write will be excused from doing

> > so---but only if I sign her up---if I dont sign her up then is expected

> > to do as all *normal* children are to do---and if misses too much school

> > will be held back if not signed up for " special services " . And if not

> > signed up is expected to preform in PE as well...if they told her and 3

> > other little girls to go jump rope she could not do it--and that would

> > count against her. She cannot even run and has hard time walking up

> > steps, much less play hop scotch or jump rope or do jumping jacks.

> >

> > I was told by dr NO impact on joints of any kind----anyone else told

> > this? She just diagnosed 19 days ago and has lots of swelling in many

> > joints and hip????

> >

> > She will not be in a special class room or have special teacher---just

> > be given additional time to do things that are *difficult* for her when

> > she is having bad day~ They can and will provide a buddy for her on

> > days when she cannot carry her own lunch tray, or open her locker, and

> > will let her make up home work during PE if she was just too tired the

> > night before to complete the nights assigned homework~

> >

> > Is anyone signed up for a program similar to this?

> >

> > Not special education---would never consider that as she is very bright

> > only has physical limitations---unless the cataract gets much bigger or

> > on Thurs we find that has one in other eye too...and will take that as

> > it comes.

> >

> > Is anyone on this list in TEXAS???

> >

> > Thanks,

> >

> > Deborah

>

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> For links to websites with JRA info visit:

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[Guest guest]

im sure they will try ibuprofen if the naprosyn isnt helping. then they may

add prednisone and methotrexate. good luck and ill keep in touch!

[Guest guest]

cheri

whats the special services for kids with JRA this is so new to me at this

point

i know about the IEPs for learning LD but not for physical problems like JRA

my daughter is very active or was and the coach was told and given her PE

what she can and cant do but yesterday he allowed her to jump and run

this caused a problem with her asthma i was called to the school

not only was she wheezeing she was shakeing her leg was hurting

what are my choices on this besides raiseing cane with this man?

Robbin

[Guest guest]

Liz

thanks i am not sure if we have the 504 here but i will check on it for PE

modifications

i carry my daughter to Eglestons Childrens Hospital with Doctors who use

Egleston

we are in atlanta ga

Robbin

[Guest guest]

A 504 plan covers your school age disabled child under the

Rehabilitation Act of 1973. Children with JRA or other rheumatic

illnesses who have significant difficulty walking, caring for

themselves, or participating in school generally satisfy the definition

of disabled. If your child does not need services in school, but does

need accomodations, a 504 might be the way to go. For those of you at

Texas Childrens'----They do have a social worker on the staff who can

assist you with this. Generally, the social worker should be able to

explain everything to you and also help you get cooperation from your

school district. By the way--I don't work for Texas Childrens'. My

daughter was a patient there when we lived in Corpus Christi. Long trip

to see the rheumy, but worth it!!

Liz

Robbin40@... wrote:

>

> cheri

> whats the special services for kids with JRA this is so new to me at this

> point

> i know about the IEPs for learning LD but not for physical problems like JRA

> my daughter is very active or was and the coach was told and given her PE

> what she can and cant do but yesterday he allowed her to jump and run

> this caused a problem with her asthma i was called to the school

> not only was she wheezeing she was shakeing her leg was hurting

> what are my choices on this besides raiseing cane with this man?

> Robbin

>

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

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> 1/2916/1/_/524922/_/956432833/

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

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi Robbin

The 504 plan falls under federal law, not state law, so getting one for

your daughter if she needs it should not be a problem. First she has to

be acknowledged as having a disability. Generally a letter from the

rheumatologist is enough evidence. Then a committee says yes or no. Kind

of dumb that a committee has to decide when the rheumy writes a letter,

but I guess it's all part of the beauracratic nonsense.

Liz

Robbin40@... wrote:

>

> Liz

> thanks i am not sure if we have the 504 here but i will check on it for PE

> modifications

> i carry my daughter to Eglestons Childrens Hospital with Doctors who use

> Egleston

> we are in atlanta ga

> Robbin

>

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

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> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

my advice would be to take your daughter out of PE altogether. it may seem

like it would alienate her, but with both asthma and JRA! id be on the safe

side. instead, talk to the school principal and see if during PE time she

could be a teachers aide. have them give her things to do like cleaning

blackboards, helping grade papers (if shes old enough) and to just do simple

errands for the teachers. that way there would be a time when she is away

from the other children and maybe wouldnt be shy about talking to her

teachers about her JRA and it would give them more insight to what shes going

through. good luck cheri

[Guest guest]

My child also has asthma and jra and she's still in PE. They allow her to do

what she can do, but we also have a standing order from the dr saying what

she limits are. on the days that she can't doing anythinh in pe she's allowed

to sit down and rest. I don't want them to handicap her in no ways, but you

have to do what's best for your child too.on the days she's not up for pe

they let her help one of the teacher too

sweetpea200001

[Guest guest]

Robbin,

Hey How are you doing? I would also like more info on the 504 plan. I live

in Atlanta too. Just outside of Atlanta in Lawrenceville. We take our

daughter to Emory and see Dr. Volger. One time I asked him if there was a

different Rheumy in Atlanta and he said only one other. If you find out some

more info. about how that works in the state of GA. let me know. And if you

ever want our daughters to meet that would be great. McKenzie is five years

old.

Thanks Angel Beers

Re: Howdy From TEXAS! *New Member Introduction*

Liz

thanks i am not sure if we have the 504 here but i will check on it for PE

modifications

i carry my daughter to Eglestons Childrens Hospital with Doctors who use

Egleston

we are in atlanta ga

Robbin

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[Guest guest]

angel

cooool this is so perfect finaly finding someone else here close by

there is another rheumatologist here in ga and she also works with egleston

and hughes spaulding and scottish rite how i found out about her was by a

nurse

i have known for years and was my sons nurse

dr donna gibbas you can find her in the phone book i have heard good things

about her to from others i think i may switch due to melissa just dont like

men drs lolol

you know that age thing

melissa dont go see vogler again til july 18th unless we have more problems

but i carry melissa to egleston childrens hospital for her physical therapy

every tuesday so far

when did your daughter get diagnoised ?

what is she on now?

laweranceville aint to far out from me but my friend said melissa does need

to mingle with other kids who have this so she can see others have this and

get around shes 13 yrs old in 7th grade

i will check on this 504 here and let you know i myself see i am going to

have to do this through the channels to get her a modified PE teacher at her

school

for next year and this school knows me very well and knows i dont take mess

off them lolol some of these teachers taught my son lolol

i am glad you replied to me at least i know i aint the only mom out in ga who

has a child with this

have a great day

we can meet and let the girls meet also

Robbin