Re: s Appt today.. (504 information)

[Guest guest]

Hi Emilie,

So sorry to hear that is having such a hard time with this

nasty flare. I read about your concern regarding the pencils. We

added this to Aundreas 504 plan at school. Basically the school

nurse and school socialworker just asked me what I felt needed to be

included in her plan and then its carried over each year.

I pulled Aundreas 504 plan out today to mention some of the things

that we have on it.

Aundrea will participate in P.E. to the extent that she is able.

Aundrea is allowed to dictate all homework to her parents when

necesary.

Aundrea is exempt from the late homework policy.

Aundrea is allowed to use the restrooms whenever necesary.

She may keep a water bottle at her desk.

She may sit in a chair if there are occasions when children are

sitting on the floor.

handwriting will not be marked off for neatness.

Aundrea may have built up pencils and the mechanical pencils.

Aundea may keep a nurses pass at her desk which she can raise to

alert the teacher if she needs to be excused.(This eliminates

aundrea having to speak in front of the class about needing to go to

the nurse and causes less disruption for the teacher. Aundrea can

be quite shy about her illness and this has worked out wonderfully)

Aundrea can have periods of stretch times.

She can keep a second set of textbooks at home. (this has been so

helpful. During absences all I have to worry about getting is her

homework folder)

She may stay inside during recess and is allowed to select a

playmate to join her.

If necesary during sunny weather, she may wear a hat and have

sunblock applied. (Aundrea has sun-senitivity as a result of meds)

Aundrea is never counted tardi for late school starts.

We have added to her 504 plan over the course of her illness, but

overall it has been a great system and the school staff have been

very supportive.

I also always give her teacher and the school nurse a listing of the

medications she is taking along with side effects to look for. I

wanted them to understand about the steroids because Aundrea has

terrible mood swings with the steroids/taper and this is out of

character for her.

We have built up silverware for our residents at the nursing home

where I work. I will see if I can get you a catalog or some

additional information when I go to work tomorrow.

I sure hope that starts feeling better soon. I have learned

that when Aundrea flares and after she then improves we try to

return to school at a slower pace. I let her go in the mornings and

then will pick her up in the afternoon so that she can get a nap. I

do this until the dark circles under the eyes start to subside and

she just " looks " better. Seems like she is less likely to relapse

this way.

Hope things get better soon with the increase in enbrel.

(drea 9 systemic)

>

> Hi all..

>

> We went to Albany today. The doc upped her to 50mg weekly of

enbrel

> and we are back on the methotrexate at .5cc weekly. She's also

back

> on the folic acid. He also did x-rays of the knees and hands. He

> gave me a script for her to have built up pencils at school for

the

> time being. Does anyone know how I go about making sure that the

> school is going to comply with this? Also does anyone know where

I

> can get built up silverware for her at home? The rheumy is really

> concerned about the way this has flared up again. He said to keep

> her active as possible, but not to let her fall and get hurt right

> now. Would that be because of the prednisone that she's on and the

> bruising that goes along with it. She is so bruised up right now

> that we are going to be alternating doses of pred. 1 tsp on day

and

> then 1/2 the next for two weeks and then we go down to 1/2 tsp all

> the time. I feel so rotten that she is dealing with this again. I

> had hoped that we were going to stay on the upswing of this nasty

> disease. Is anyone else on the 50 mg enbrel?? right now we are

going

> to be doing it in two seperate shots, on the same day. I am hoping

> to get the preloaded enbrel syringes the next round of refills

that

> we need.

>

> hugs.

> Emilie ( 5, Poly)

[Guest guest]

..

Did drea's doc have to make out the 504 plan or did you work it out with the

school. The last time I mentioned this to the principle when she started

getting bad, she said that the teacher had to recommend one. I think i might

make some notes on what you have in drea's and take it with me as a guideline

monday..

thanks for the info..

Emilie ( ashley 5 poly)

Re: s Appt today.. (504 information)

Hi Emilie,

So sorry to hear that is having such a hard time with this

nasty flare. I read about your concern regarding the pencils. We

added this to Aundreas 504 plan at school. Basically the school

nurse and school socialworker just asked me what I felt needed to be

included in her plan and then its carried over each year.

I pulled Aundreas 504 plan out today to mention some of the things

that we have on it.

Aundrea will participate in P.E. to the extent that she is able.

Aundrea is allowed to dictate all homework to her parents when

necesary.

Aundrea is exempt from the late homework policy.

Aundrea is allowed to use the restrooms whenever necesary.

She may keep a water bottle at her desk.

She may sit in a chair if there are occasions when children are

sitting on the floor.

handwriting will not be marked off for neatness.

Aundrea may have built up pencils and the mechanical pencils.

Aundea may keep a nurses pass at her desk which she can raise to

alert the teacher if she needs to be excused.(This eliminates

aundrea having to speak in front of the class about needing to go to

the nurse and causes less disruption for the teacher. Aundrea can

be quite shy about her illness and this has worked out wonderfully)

Aundrea can have periods of stretch times.

She can keep a second set of textbooks at home. (this has been so

helpful. During absences all I have to worry about getting is her

homework folder)

She may stay inside during recess and is allowed to select a

playmate to join her.

If necesary during sunny weather, she may wear a hat and have

sunblock applied. (Aundrea has sun-senitivity as a result of meds)

Aundrea is never counted tardi for late school starts.

We have added to her 504 plan over the course of her illness, but

overall it has been a great system and the school staff have been

very supportive.

I also always give her teacher and the school nurse a listing of the

medications she is taking along with side effects to look for. I

wanted them to understand about the steroids because Aundrea has

terrible mood swings with the steroids/taper and this is out of

character for her.

We have built up silverware for our residents at the nursing home

where I work. I will see if I can get you a catalog or some

additional information when I go to work tomorrow.

I sure hope that starts feeling better soon. I have learned

that when Aundrea flares and after she then improves we try to

return to school at a slower pace. I let her go in the mornings and

then will pick her up in the afternoon so that she can get a nap. I

do this until the dark circles under the eyes start to subside and

she just " looks " better. Seems like she is less likely to relapse

this way.

Hope things get better soon with the increase in enbrel.

(drea 9 systemic)

>

> Hi all..

>

> We went to Albany today. The doc upped her to 50mg weekly of

enbrel

> and we are back on the methotrexate at .5cc weekly. She's also

back

> on the folic acid. He also did x-rays of the knees and hands. He

> gave me a script for her to have built up pencils at school for

the

> time being. Does anyone know how I go about making sure that the

> school is going to comply with this? Also does anyone know where

I

> can get built up silverware for her at home? The rheumy is really

> concerned about the way this has flared up again. He said to keep

> her active as possible, but not to let her fall and get hurt right

> now. Would that be because of the prednisone that she's on and the

> bruising that goes along with it. She is so bruised up right now

> that we are going to be alternating doses of pred. 1 tsp on day

and

> then 1/2 the next for two weeks and then we go down to 1/2 tsp all

> the time. I feel so rotten that she is dealing with this again. I

> had hoped that we were going to stay on the upswing of this nasty

> disease. Is anyone else on the 50 mg enbrel?? right now we are

going

> to be doing it in two seperate shots, on the same day. I am hoping

> to get the preloaded enbrel syringes the next round of refills

that

> we need.

>

> hugs.

> Emilie ( 5, Poly)

[Guest guest]

-Emilie,

It is NOT the schools call, it is yours and your doctors. If you

take a letter to the school from the doctor stating s DX then

by law the school has to make accomadations for her.

Stand your ground and dont let the school tell you otherwise.

Look back in the archives and see other posts about this. Theres lot

of great ideas out there.

If is having problems with her hands and writting is

difficult then ask them about an alphasmart for her. Nick is in the

same boat and his school have a computer ( Alphasmart) for him and

are in the process of teaching him to type so when the time comes

for more extensive writting in the higher grades he will be a

proficent typist. Other ideas that Nicks school is doing is felt

pens on a white board and mechnical pencils.

Good luck...

Hugs Helen and (7,systemic)

-- In , " HARRY SKIDMORE " <h.skidmore@w...>

wrote:

> ..

> Did drea's doc have to make out the 504 plan or did you work it

out with the school. The last time I mentioned this to the

principle when she started getting bad, she said that the teacher

had to recommend one. I think i might make some notes on what you

have in drea's and take it with me as a guideline monday..

> thanks for the info..

> Emilie ( ashley 5 poly)

> Re: s Appt today.. (504 information)

>

>

>

> Hi Emilie,

>

> So sorry to hear that is having such a hard time with

this

> nasty flare. I read about your concern regarding the pencils.

We

> added this to Aundreas 504 plan at school. Basically the school

> nurse and school socialworker just asked me what I felt needed

to be

> included in her plan and then its carried over each year.

>

> I pulled Aundreas 504 plan out today to mention some of the

things

> that we have on it.

> Aundrea will participate in P.E. to the extent that she is

able.

> Aundrea is allowed to dictate all homework to her parents

when

> necesary.

> Aundrea is exempt from the late homework policy.

> Aundrea is allowed to use the restrooms whenever necesary.

> She may keep a water bottle at her desk.

> She may sit in a chair if there are occasions when children are

> sitting on the floor.

> handwriting will not be marked off for neatness.

> Aundrea may have built up pencils and the mechanical pencils.

> Aundea may keep a nurses pass at her desk which she can raise to

> alert the teacher if she needs to be excused.(This eliminates

> aundrea having to speak in front of the class about needing to

go to

> the nurse and causes less disruption for the teacher. Aundrea

can

> be quite shy about her illness and this has worked out

wonderfully)

> Aundrea can have periods of stretch times.

> She can keep a second set of textbooks at home. (this has been

so

> helpful. During absences all I have to worry about getting is

her

> homework folder)

> She may stay inside during recess and is allowed to select a

> playmate to join her.

> If necesary during sunny weather, she may wear a hat and have

> sunblock applied. (Aundrea has sun-senitivity as a result of

meds)

> Aundrea is never counted tardi for late school starts.

>

> We have added to her 504 plan over the course of her illness,

but

> overall it has been a great system and the school staff have

been

> very supportive.

>

> I also always give her teacher and the school nurse a listing of

the

> medications she is taking along with side effects to look for.

I

> wanted them to understand about the steroids because Aundrea has

> terrible mood swings with the steroids/taper and this is out of

> character for her.

>

> We have built up silverware for our residents at the nursing

home

> where I work. I will see if I can get you a catalog or some

> additional information when I go to work tomorrow.

>

> I sure hope that starts feeling better soon. I have

learned

> that when Aundrea flares and after she then improves we try to

> return to school at a slower pace. I let her go in the mornings

and

> then will pick her up in the afternoon so that she can get a

nap. I

> do this until the dark circles under the eyes start to subside

and

> she just " looks " better. Seems like she is less likely to

relapse

> this way.

>

> Hope things get better soon with the increase in enbrel.

>

> (drea 9 systemic)

>

> >

> > Hi all..

> >

> > We went to Albany today. The doc upped her to 50mg weekly of

> enbrel

> > and we are back on the methotrexate at .5cc weekly. She's also

> back

> > on the folic acid. He also did x-rays of the knees and hands.

He

> > gave me a script for her to have built up pencils at school

for

> the

> > time being. Does anyone know how I go about making sure that

the

> > school is going to comply with this? Also does anyone know

where

> I

> > can get built up silverware for her at home? The rheumy is

really

> > concerned about the way this has flared up again. He said to

keep

> > her active as possible, but not to let her fall and get hurt

right

> > now. Would that be because of the prednisone that she's on and

the

> > bruising that goes along with it. She is so bruised up right

now

> > that we are going to be alternating doses of pred. 1 tsp on

day

> and

> > then 1/2 the next for two weeks and then we go down to 1/2 tsp

all

> > the time. I feel so rotten that she is dealing with this

again. I

> > had hoped that we were going to stay on the upswing of this

nasty

> > disease. Is anyone else on the 50 mg enbrel?? right now we are

> going

> > to be doing it in two seperate shots, on the same day. I am

hoping

> > to get the preloaded enbrel syringes the next round of refills

> that

> > we need.

> >

> > hugs.

> > Emilie ( 5, Poly)

>

>

>

>

>

[Guest guest]

-

Emilie,

I didn't have to have anything at all from the doctor. I think the

teacher may have spoken with the school social worker, but that

wasn't a big deal. I supplied the teacher, school nurse and school

social worker with some information relative to jra and also

provided them with information as to who Aundrea's rheumatologist is

and her list of meds.

Another thing that you might want to add for is for someone

to assist in carrying her lunch tray if she needs help. Also,

Aundrea had a quiet room where she could go and lay down on an air

mattress when she was fatigued or dealing with joint pain. We

haven't resorted to that this year, because if Aundrea is to the

point where she needs to lay down she would just prefer to come home

and go to bed.

I don't know if you have the book called " Your Child with Arthritis "

but it discusses a 504 plan. Since you are planning to meet with

your school staff on Monday, I wanted to provide you with the

definition of the 504 plan and who it was created for.

Section 504 defines a handicapped individual as any individual who:

Has a physical or mental impairment that substantially limits one or

more major life activities.

Has a record of such impairment.

Is regarded as having such an impairment.

Children with JRA or other rheumatic illnesses who have significant

difficulty walking, caring for themselves or participating in school

satisfy this defintion.

I think that if you were able to request a meeting with the school

nurse, teacher and social worker you could present them with

information on JRA and basically spell out the things that

needs to make her school day easier. I found that once the school

staff was educated on the disease they were more than willing to

work with us. Don't forget to provide them with the info on the

drugs that takes.

One other thing that I did was to take Aundreas binder that included

the health journal I keep on her as well as some pictures of her

when she was in a severe flare. Because Aundrea can " look " so

healthy and they can't see her rash beneath her clothes or see her

painful joints, I wanted to try and give them a visual picture of

her disease. I wanted them to fully understand that on some days

Aundrea would be running around with her friends and perhaps that

same afternoon she would be asking to call me because she had

swollen lymph nodes or sore joints. This is your time to educate

the educators!

I hope that things will go well for you with the school. Its so

important that are kids are able to participate in school and making

a few accommodations to help them with managing their disease can

make all the difference in the world for their school day.

Let me know how things go, or if I can provide you with any

addtional information.

(drea 9 systemic)

In , " HARRY SKIDMORE " <h.skidmore@w...>

wrote:

> ..

> Did drea's doc have to make out the 504 plan or did you work it

out with the school. The last time I mentioned this to the

principle when she started getting bad, she said that the teacher

had to recommend one. I think i might make some notes on what you

have in drea's and take it with me as a guideline monday..

> thanks for the info..

> Emilie ( ashley 5 poly)

> Re: s Appt today.. (504 information)

>

>

>

> Hi Emilie,

>

> So sorry to hear that is having such a hard time with

this

> nasty flare. I read about your concern regarding the pencils.

We

> added this to Aundreas 504 plan at school. Basically the school

> nurse and school socialworker just asked me what I felt needed

to be

> included in her plan and then its carried over each year.

>

> I pulled Aundreas 504 plan out today to mention some of the

things

> that we have on it.

> Aundrea will participate in P.E. to the extent that she is

able.

> Aundrea is allowed to dictate all homework to her parents

when

> necesary.

> Aundrea is exempt from the late homework policy.

> Aundrea is allowed to use the restrooms whenever necesary.

> She may keep a water bottle at her desk.

> She may sit in a chair if there are occasions when children are

> sitting on the floor.

> handwriting will not be marked off for neatness.

> Aundrea may have built up pencils and the mechanical pencils.

> Aundea may keep a nurses pass at her desk which she can raise to

> alert the teacher if she needs to be excused.(This eliminates

> aundrea having to speak in front of the class about needing to

go to

> the nurse and causes less disruption for the teacher. Aundrea

can

> be quite shy about her illness and this has worked out

wonderfully)

> Aundrea can have periods of stretch times.

> She can keep a second set of textbooks at home. (this has been

so

> helpful. During absences all I have to worry about getting is

her

> homework folder)

> She may stay inside during recess and is allowed to select a

> playmate to join her.

> If necesary during sunny weather, she may wear a hat and have

> sunblock applied. (Aundrea has sun-senitivity as a result of

meds)

> Aundrea is never counted tardi for late school starts.

>

> We have added to her 504 plan over the course of her illness,

but

> overall it has been a great system and the school staff have

been

> very supportive.

>

> I also always give her teacher and the school nurse a listing of

the

> medications she is taking along with side effects to look for.

I

> wanted them to understand about the steroids because Aundrea has

> terrible mood swings with the steroids/taper and this is out of

> character for her.

>

> We have built up silverware for our residents at the nursing

home

> where I work. I will see if I can get you a catalog or some

> additional information when I go to work tomorrow.

>

> I sure hope that starts feeling better soon. I have

learned

> that when Aundrea flares and after she then improves we try to

> return to school at a slower pace. I let her go in the mornings

and

> then will pick her up in the afternoon so that she can get a

nap. I

> do this until the dark circles under the eyes start to subside

and

> she just " looks " better. Seems like she is less likely to

relapse

> this way.

>

> Hope things get better soon with the increase in enbrel.

>

> (drea 9 systemic)

>

> >

> > Hi all..

> >

> > We went to Albany today. The doc upped her to 50mg weekly of

> enbrel

> > and we are back on the methotrexate at .5cc weekly. She's also

> back

> > on the folic acid. He also did x-rays of the knees and hands.

He

> > gave me a script for her to have built up pencils at school

for

> the

> > time being. Does anyone know how I go about making sure that

the

> > school is going to comply with this? Also does anyone know

where

> I

> > can get built up silverware for her at home? The rheumy is

really

> > concerned about the way this has flared up again. He said to

keep

> > her active as possible, but not to let her fall and get hurt

right

> > now. Would that be because of the prednisone that she's on and

the

> > bruising that goes along with it. She is so bruised up right

now

> > that we are going to be alternating doses of pred. 1 tsp on

day

> and

> > then 1/2 the next for two weeks and then we go down to 1/2 tsp

all

> > the time. I feel so rotten that she is dealing with this

again. I

> > had hoped that we were going to stay on the upswing of this

nasty

> > disease. Is anyone else on the 50 mg enbrel?? right now we are

> going

> > to be doing it in two seperate shots, on the same day. I am

hoping

> > to get the preloaded enbrel syringes the next round of refills

> that

> > we need.

> >

> > hugs.

> > Emilie ( 5, Poly)

>

>

>

>

>