Re: Do you choose to inform teachers about older kids JRA?

[Guest guest]

Hi my names e. Have had JRA since I was around 1 or 2. Not certain

on that. I am 28 now.

When I was a kid in school, in elementary school, I think my mom would

tell the office and they knew and it got put in my folder. I guess. I do

remember when I was in second grade they asked if I wanted some puppets

to come and give a puppet show about my JRA. I said yes. I don't

remember if this helped any or not, but as a kid having a puppet show

was cool.

When I got into junior high, I think it was still in my folder. But at

this point my parents did not go to any teacher conferences and so I

don't think there was any real communication between them. Plus, when I

was at that age, I didn't want any more attention draw to me than I

already had. Most of the kids understood, and were helpful at times. I

do know that my teacher after lunch knew about my JRA, because I would

always asked to go to the nurse to take my pills. I hope that helps a

bit. Maybe you could ask your daughter what she wants to do.

~e

Do you choose to inform teachers about older kids JRA?

For anyone with junior high aged kids or older, I am wondering if you

inform your child's teachers that they have arthritis? My daughter's

only currently affects her knee and hip, so it doesn't impact her

physical ability to write. She is having increased pain though. We

normally only tell the phy ed teacher, but I am kind of wondering

what other people do. I am thinking the pain could affect her in the

regular classroom too. Also, she just started Planquenil today and we

were told she doesn't need bloodwork any more often than with Vioxx,

is that pretty much the standard? Thanks. Kim

[Guest guest]

Hi Kim:

Okay, I haven't gotten off puter yet because I saw this email:)

When Caitlin was in such pain and looked so very sick, her teachers saw it

and asked the nurse. At this point she was not dx'd, but we shared everything

we knew with the nurse (an awesome woman) and we told her to share with

Caitlin's teachers as she saw fit. Because Caitlin was in such pain, we also

had her

leave classes five minutes early so she wouldn't get bumped in those

overcrowded hallways. I think in middle school, at the age, some teachers

(unfortunately) may think a child could wait to go to the nurse (like they are

looking to

get out of class and visit with someone) or the bathroom etc. For that

reason, I would tell the teachers. If is feeling bad or in pain, it

needs

to be taken serious by all teachers and she needs to be excused right then and

there. If they know of no known reasons to excuse her, they may make her

wait. Just my two cents:)

With the Plaquenil, don't forget to get 's eyes checked. Caitlin go to

her eye doctor on Monday for a 6 month check even though she's been off the

Plaquenil for about three months, just to be sure it didn't cause any damage to

her eyes.

Take care.

Patty

[Guest guest]

Hi everyone,

wanted to comment on this even though my jra kid is only 9 years old.

From my work experience with jra kids and youngsters (as an OT) I feel it's

important that the school personel knows about jra. Not only that a kid has it,

but more about it. It's important from pre-school to high school (in my opinion,

that is). It's more obvious with young children, but I feel the teen-agers need

special support at school as well. I'm sure that many teen agers (especially

boys) don't want to admit their pain and often push themselves way over the

limit (at least that's what they do here in Finland, don't know if it's a

cultural thing, but I think it's more like the man-thing...). Moreover, the

teenagers are often believed to be lazy and not putting enough effort to school,

so many times jra symptoms (or med-related side effects)such as pain, stiffness,

fatigue, nausea etc. are not understood bny teachers. And missing a lot of

school can happen any day, even if the disease seems to be under control.

Another thing is the ergonomic enviroment at school. I work a lot with problems

like this. Sometimes jra teens have serious problems with their shoulders, necks

and backs, sort of secondary problems to jra caused by long hours sitting in an

unsuitable chair or desk. Often it happens that parents ask me to phone the

headmaster to get a better chair, saying that the school doesn't understand

about jra and the ergonomics required. It's quite hard to start talking if the

teachers are unaware of their pupil having this illness in the first place.

But, I do think it's up to the child/youngster to decide whether his/her

condition is a thing to be told the class. I know that some parents have gone to

class to speak about jra to all the kids. I also know some kids who always lie

to their classmates that they are on holiday when they are absent because of

jra.

My son didn't want to hear of me coming to his classroom, " no way in h.... " he

said. All his mates know he has jra and he doesn't understand why make a fuss

about it. So we didn't do this " speech " even though I'm sure most of the kids

don't really understand this disease.

Soili

[Guest guest]

Kim,

I think your question is a fantastic one for all of us as we prepare

for September and the beginning of another school year. My son

missed 6 months of school last year due to his onset of Systemic

JRA. The experience has opened my eyes in regards to the school

systems and how parents/educators really need to work together. I

have been very blessed to have come in contact with a Professor from

Mason University who has done extensive research on Schools

dealing with children who have a chronic illness. In fact, for those

of you who live in the land, Virginia, DC area this professor is

holding a summer seminar on " WORKING COLLABORATIVELY TO SUPPORT

STUDENTS WITH CHRONIC ILLNESS " on AUG 11 (this Wednesday) at

Mason University (4400 University Drive, Fairfax VA) from 7:30pm-

9:30pm in the SUB II BALLROOM. The best part is that this seminar is

totally FREE!!! The Arthritis Foundation Metropolitan Washington

Chapter is sponsoring this event, so hats off to them. In addition,

Dr. Lehman who wrote the book, " It's not just growing pains "

(incredible read!!) has donated autographed books to be used at this

event. So for those of you who can attend, please come on out.

Georgina has kindly posted the brochure for the seminar under the

files link. If you need any additional information, please contact

me at knoblefamily@....

Best of luck to you. As with anything else, honesty is the best

policy and I think the school should be aware of a child dealing with

a chronic illness.

I hope to see many of you at the Seminar on August 11.

n , " mnkim2003 " <LP757@a...> wrote:

> For anyone with junior high aged kids or older, I am wondering if

you

> inform your child's teachers that they have arthritis? My

daughter's

> only currently affects her knee and hip, so it doesn't impact her

> physical ability to write. She is having increased pain though. We

> normally only tell the phy ed teacher, but I am kind of wondering

> what other people do. I am thinking the pain could affect her in

the

> regular classroom too. Also, she just started Planquenil today and

we

> were told she doesn't need bloodwork any more often than with

Vioxx,

> is that pretty much the standard? Thanks. Kim

[Guest guest]

Hi Kim,

My son is in 6th grade and up to this point I always had meeting with all

the teachers in the beginning of the year and told them about Adam's

arthritis. I think the teachers appreciated knowing because they are always

very receptive toward the information. Now that he is starting middle

school; I was thinking about this myself. Adam's arthritis is well

controlled with Vioxx, so there are not to many issue with school except for

PE. I decided for myself that I would let his teachers know, that way if he

was having pain he would feel comfortable asking the teacher to go to the

nurse, without having to go through a lengthy explanation. It is not a big

deal to talk with the teachers and it is a way to start communication with

the school. My daughter was on plaquenil for a while and she only had blood

work every few months. She did have to have her eyes examined before she

went on it and when I went to the eye doctor for her yearly eye exam they

did a few extra tests on her. Her eyes were always normal and she did not

have any side effects from it. Hope this helps.

V

Do you choose to inform teachers about older kids JRA?

> For anyone with junior high aged kids or older, I am wondering if you

> inform your child's teachers that they have arthritis? My daughter's

> only currently affects her knee and hip, so it doesn't impact her

> physical ability to write. She is having increased pain though. We

> normally only tell the phy ed teacher, but I am kind of wondering

> what other people do. I am thinking the pain could affect her in the

> regular classroom too. Also, she just started Planquenil today and we

> were told she doesn't need bloodwork any more often than with Vioxx,

> is that pretty much the standard? Thanks. Kim

>

>

>

>

>

>

[Guest guest]

Hi.. I do not post often but try to read what I can... life can be hectic!

But I thought I would throw my 2 cents in here. My daughter Ashton was dx'd with

Poly JRA in 6th grade and is a senior in high school this year. Although the

last two years have been good years JRA wise I always inform the school and

her teachers just incase she has a bad day & so they understand those missed

days for Dr appointments. For most teachers it is an education for them as many

people are shocked to realize that kids get arthrtis! Also should things not

go well with her JRA they are already informed & any accomodations can be made

quicker & easier. I aalways let her teachers know that I still expect the best

out of her & that JRA is not an excuse for misbehavior or slacking. Ashton as

most kids/teenagers want to be the same as everyone else not singled out I

think if you open the lines of communication with the teachers & tell them that

they have a better understanding of the situation. As for Plaquenil.. Ashton

was on it blood work was still monthly due to Methotrexate,, But make sure you

get eye exams. Her Dr suggested every six months & they also do a visual field

test at that time. And to call right away if they have any visual

disturbance. Sorry this is sooooo long winded..... I will try to post more

often.... But

I do enjoy reading the posts even if I don't get a chance to respond I'm

still out here & we are still surviving JRA!!!!

Kristi mom to Ashton 17 Poly JRA

[Guest guest]

Hi ,

Welcome to the list.This is a great source of knowledge from moms and

Georgina posts all kinds of medical stuff.

is very lucky to have responded to Plaquenil and Ibuprofin and doing

so well.I hope it continues.

Hugs

Becki and 6 systemic