Re: Sleeping in School

[Guest guest]

,

What time is he taking the nap? Maybe if you can find this out it would

help. The Fatigue has always played with . Her High School years. Were

in the Homebound Program due to the Fatigue was so bad on her. So if it

get's worse I would talk with the School. Some schools a ok with setting a

place

where the child can take a nap. But Please make sure there's no sick kids

around as this is risky for a JRA child. You have the choice of napping or

catching what another child has. Since the Immune system is low anyway.

We tried getting to bed earlier but still it was hard for . Soon

as she got home she at times would hit the bed before she ate supper. Which

isn't good. There was times when she couldn't sleep at all. She said Ma How am

I going to sleep when my body say's I am so tired but my body dont sleep? So

we have as of this year been pacing her energy.

Have you tried doing a Nap soon as he comes home then up to eat and do

Homework and back to sleep if possible. Rest is the best for them in a flare. I

have also experienced with the Fatigue lingered with her. Make sure

the diet is full of Iron as this with make them tired also.

Robbin

[Guest guest]

Hi ,

When n's arthritis is more active, she struggles with fatigue.

(like right now) She goes to the office and lays on the cot. As you

know, rest is so important with this disease. We try to get n

to bed earlier and have her slow down. No easy feat with a 17 year

old. Take care, (n, 17, systemic)

On Sep 12, 2006, at 2:12 PM, wrote:

>

> Hi Folks,

>

> First of all, my thoughts go out to e and others who are going

> through such sad events.

>

> I was wondering how many kids on the list struggle with fatigue in

> school?

> Is this a common problem? How are you handling it? My son sleeps

> regularly

> in school. He just can¹t stay awake for an entire school day. So he

> goes to

> the nurse¹s office and they have a cot where he can sleep. He often

> sleeps

> for an hour or more in the afternoon. He misses school, but he just

> can¹t

> stay awake. What suggestions do other parents have? Georgina, do

> you have

> any information on fatigue and jra, or school and fatigue? Thanks

> gang.

> (and Ezra, 10 year old systemic)

>

>

[Guest guest]

Hi ,

Aundrea also has fatigue. She does the same as Ezra and will go to

the nurses station to lay down on a cot. Seems like this worked

easier for her in the past than it does now. Today she was having

severe ankle pain and went to lay down but there was a child that

had a rash being isolated in the room where she goes. The other

room had sick kids with temps etc...So, it doesn't always work out.

Today she just ended up coming home due to pain.

I guess I alway figured that it was better for her to get rest and

hopefully limit the severity of a flare than to go without it.

Also, if Ezra is able to sleep and return to school its great to

have him only miss an hour or so vs. an afternoon!

The only other option might be to encourage him to have his rest

time during a class thats not so important if he is absent, such as

pe, music or art...or maybe right after eating lunch?

(Aundrea 11 systemic jra)

>

>

> Hi Folks,

>

> First of all, my thoughts go out to e and others who are

going

> through such sad events.

>

> I was wondering how many kids on the list struggle with fatigue in

school?

> Is this a common problem? How are you handling it? My son sleeps

regularly

> in school. He just can¹t stay awake for an entire school day. So

he goes to

> the nurse¹s office and they have a cot where he can sleep. He

often sleeps

> for an hour or more in the afternoon. He misses school, but he

just can¹t

> stay awake. What suggestions do other parents have? Georgina, do

you have

> any information on fatigue and jra, or school and fatigue? Thanks

gang.

> (and Ezra, 10 year old systemic)

>

>

>

>

>

[Guest guest]

-Nick has had a huge issue with fatigue. More so in the past than

now since we started remicade. At one point in the begining they

were even talking of homebound schooling him until he was doing

better, or having him on 1/2 days. Thankfully we didnt need to go

that route.

We didnt want Nick going to the nurses office and expose him to

germs and sick kids, so they allocated a resourse room that they put

a huge bean bag chair in for Nick. He would eat lunch and then go

for a quick nap before the afternoon classes started. This worked

well. Nick got to pick weather he wanted to rest or go out to play.

This made him feel more in control and trust me when he needed rest

he took it. Sometimes he didnt want to sleep, but just wanted to

rest, which is fine too.

As I said, he has not use this rest time mush since we started

remicade, but its still available if and when he needs it.

hugs Helen and (9,systemic)

-- In , " sonia1md " <sonia1md@...> wrote:

>

> Hi ,

>

> Aundrea also has fatigue. She does the same as Ezra and will go

to

> the nurses station to lay down on a cot. Seems like this worked

> easier for her in the past than it does now. Today she was having

> severe ankle pain and went to lay down but there was a child that

> had a rash being isolated in the room where she goes. The other

> room had sick kids with temps etc...So, it doesn't always work

out.

> Today she just ended up coming home due to pain.

>

> I guess I alway figured that it was better for her to get rest and

> hopefully limit the severity of a flare than to go without it.

> Also, if Ezra is able to sleep and return to school its great to

> have him only miss an hour or so vs. an afternoon!

>

> The only other option might be to encourage him to have his rest

> time during a class thats not so important if he is absent, such

as

> pe, music or art...or maybe right after eating lunch?

>

> (Aundrea 11 systemic jra)

>

>

>

>

> >

> >

> > Hi Folks,

> >

> > First of all, my thoughts go out to e and others who are

> going

> > through such sad events.

> >

> > I was wondering how many kids on the list struggle with fatigue

in

> school?

> > Is this a common problem? How are you handling it? My son sleeps

> regularly

> > in school. He just can¹t stay awake for an entire school day. So

> he goes to

> > the nurse¹s office and they have a cot where he can sleep. He

> often sleeps

> > for an hour or more in the afternoon. He misses school, but he

> just can¹t

> > stay awake. What suggestions do other parents have? Georgina, do

> you have

> > any information on fatigue and jra, or school and fatigue?

Thanks

> gang.

> > (and Ezra, 10 year old systemic)

> >

> >

> >

> >

> >

[Guest guest]

Hi :

Hannah has been struggling with this too. I have noticed a huge increase in

her fatigue since they started her on Mobic and even more so in the last 2 weeks

since her dose was increased. She has a really hard time falling asleep, and

wakes many times during the night. Unfortunately for her, there really is no

place at school for her lie down. They have a very tiny health room and its

very busy & noisy (it's also where the copier is). Not sure how we will handle

this for the rest of the school year. I will ask the rheumy when we see him on

Thursday what he thinks.

Beth (Hannah, almost 10, still unspecified)

<lisa_michael@...> wrote:

Hi Folks,

First of all, my thoughts go out to e and others who are going

through such sad events.

I was wondering how many kids on the list struggle with fatigue in school?

Is this a common problem? How are you handling it? My son sleeps regularly

in school. He just can¹t stay awake for an entire school day. So he goes to

the nurse¹s office and they have a cot where he can sleep. He often sleeps

for an hour or more in the afternoon. He misses school, but he just can¹t

stay awake. What suggestions do other parents have? Georgina, do you have

any information on fatigue and jra, or school and fatigue? Thanks gang.

(and Ezra, 10 year old systemic)

[Guest guest]

,

One thing we did was add Melatonin to her drug regimen. She takes 3 mg (I

think that is right) at bedtime. She has noticed a huge difference. Our rheumy

recommended it (funny though the bottle says don't take with autoimmunes but no

new problems and the ped and rheumy both suggested it) We give it to our 9 year

old also (his is due to anxiety etc) We started him at 1, then two weeks later

we went to 2, then to 3. It makes a definite difference. They both have better,

more restful sleep at night. Joe still comes home to nap at times after school,

but school itself is much better. Hope that helps.

e

<lisa_michael@...> wrote:

Hi Folks,

First of all, my thoughts go out to e and others who are going

through such sad events.

I was wondering how many kids on the list struggle with fatigue in school?

Is this a common problem? How are you handling it? My son sleeps regularly

in school. He just can¹t stay awake for an entire school day. So he goes to

the nurse¹s office and they have a cot where he can sleep. He often sleeps

for an hour or more in the afternoon. He misses school, but he just can¹t

stay awake. What suggestions do other parents have? Georgina, do you have

any information on fatigue and jra, or school and fatigue? Thanks gang.

(and Ezra, 10 year old systemic)

[Guest guest]

Thank you for everyone¹s responses. It¹s so helpful to be able to share

these issues with you. Take care.

On 9/12/06 11:55 PM, " bound for london " <boundforlondon@...> wrote:

>

>

>

>

> ,

>

> One thing we did was add Melatonin to her drug regimen. She takes 3 mg (I

> think that is right) at bedtime. She has noticed a huge difference. Our rheumy

> recommended it (funny though the bottle says don't take with autoimmunes but

> no new problems and the ped and rheumy both suggested it) We give it to our 9

> year old also (his is due to anxiety etc) We started him at 1, then two weeks

> later we went to 2, then to 3. It makes a definite difference. They both have

> better, more restful sleep at night. Joe still comes home to nap at times

> after school, but school itself is much better. Hope that helps.

>

> e

>

> <lisa_michael@... <mailto:lisa_michael%40verizon.net> >

> wrote:

>

> Hi Folks,

>

> First of all, my thoughts go out to e and others who are going

> through such sad events.

>

> I was wondering how many kids on the list struggle with fatigue in school?

> Is this a common problem? How are you handling it? My son sleeps regularly

> in school. He just can¹t stay awake for an entire school day. So he goes to

> the nurse¹s office and they have a cot where he can sleep. He often sleeps

> for an hour or more in the afternoon. He misses school, but he just can¹t

> stay awake. What suggestions do other parents have? Georgina, do you have

> any information on fatigue and jra, or school and fatigue? Thanks gang.

> (and Ezra, 10 year old systemic)

>

>

[Guest guest]

Misty,

Homebound schooling went well with us. Missing School and being Tardy.

Can take a toll on you. How are you liking the Home School?

Robbin

[Guest guest]

This is one of the reasons we home school . He simply is not up

to a full day at school. He did start kindergarten, but after missing 4

days out of the first 9 and being wiped out after the other 5, we

withdrew him. We hope to be able to enroll him in school in the future,

but we are not there yet. My husband is home full time or we would not

even have considered it.

The advantages are: he can sleep in if he needs to, or even skip a full

day if necesary, he isn't exposed to the myriad of diseases rampant in

elementary classrooms, we don't have to explain to the entire school

staff about his needs. Some disadvantages: lesson plans! lol gathering

materials can be a bit of a chore, and he is a bit resistant about

reading.

Misty & (8, systemic)

[Guest guest]

Misty,

Lately with all of Aundrea's absences I am starting to feel like I

am homeschooling her! lol

I guess the good part is that no lesson plans are required, just

follow whatever the teachers send home.

I had a friend that homeschooled and she just sent her kids to

attend one or two classes a semester. I remember that her child

loved art and just went to attend the art class and maybe it was

reading. worked out well for them because it allowed her to

participate in extra-curriculurs such as sports and to socialize

with her friends but it also kept her at home for her main studies.

She was adopted and had a rough start in life so individual teaching

was helpful in getting her caught up to grade level in her core

subjects.

I always thought it was all or none when it came to public school.

I wonder if this is different depending on the state or the school

system...I would be tempted just to have Aundrea attend school 1/2

days or for the core subjects. Might be something I should look

into.

Glad its working out for .

sonia (aundrea 11 systemic jra)

-

-- In , " misty_o_c " <misty_o_c@...> wrote:

>

> This is one of the reasons we home school . He simply is

not up

> to a full day at school. He did start kindergarten, but after

missing 4

> days out of the first 9 and being wiped out after the other 5, we

> withdrew him. We hope to be able to enroll him in school in the

future,

> but we are not there yet. My husband is home full time or we would

not

> even have considered it.

> The advantages are: he can sleep in if he needs to, or even skip a

full

> day if necesary, he isn't exposed to the myriad of diseases

rampant in

> elementary classrooms, we don't have to explain to the entire

school

> staff about his needs. Some disadvantages: lesson plans! lol

gathering

> materials can be a bit of a chore, and he is a bit resistant about

> reading.

>

> Misty & (8, systemic)

>

[Guest guest]

When I was young and in school my mom worked at the school I attended and

many times I was sent to her office to lie down and rest. When I went to high

school the fatigue continued and I miseed at least one day every week.

Eventually it became more and I was tutored for some time and eventually, albeit

the

biggest regret of my life, I quit school at 16 but the pressure was too much

and homeschool was not the thing it is today. I did get my GED and went to

college, where you choose your schedule. College was actually easier, more

enjoyable and something I could manage with JRA. I still fight fatigue and only

wish I had the magic pill for all those following me in the JRA journey. For

those who can homeschool I would say go for it. I now homeschool my son but

for JRA, he simply struggles with school work and all that comes with school.

He will begin a GED program soon and this is the route we have chosen for him

and he will continue in the police explorer program and will begin modeling

next month. I always find alternatives for his future so hang tight and hang

tough parents, where there is a will, there is a way!!!

Donna

[Guest guest]

I really enjoy the homeschooling for now, although I admit is

behind in reading. My husband, being home all day, does the majority of

the teaching. We do read his lessons to him and take answers orally on

a lot of things.

Misty & (8, systemic)

>

> Misty,

> Homebound schooling went well with us. Missing School and being

Tardy.

> Can take a toll on you. How are you liking the Home School?

> Robbin

>

>

>

[Guest guest]

In essance, you are partly homeschooling her, just using a prepared

lesson plan :-) There are curriculums available, complete with

lesson plans, but they are not free and we plan to use some in a few

years if we are still home schooling.

It depends on your state as to what degree of homeschooling is

allowed. It may be possible to just utilise the public school system

for the core subjects. Check http://www.hslda.org/Default.asp?bhcp=1

for your state and local laws on the subject.

Misty & (8, systemic)

>

> Misty,

>

> Lately with all of Aundrea's absences I am starting to feel like I

> am homeschooling her! lol

>

> I guess the good part is that no lesson plans are required, just

> follow whatever the teachers send home.

>---

> I always thought it was all or none when it came to public school.

> I wonder if this is different depending on the state or the school

> system...I would be tempted just to have Aundrea attend school 1/2

> days or for the core subjects. Might be something I should look

> into.

>

> Glad its working out for .

>

> sonia (aundrea 11 systemic jra)