Re: Advice? Super grouchy 11 yr old

[Guest guest]

I know exactly how you feel! It's like you're describing my day with my son who

is also homeschooled. The one thing that I've learned from talking to all of he

wonderful people in this group is that you have to control this horrible

disease, not just treat it. The ibuprofen is probably just skimming the

surface. Medications like Methotrexate help control the disease. It suppresses

the immune system so it stops fighting itself. I know that my son is on 875mg

of Naproxen each day and takes Methotrexate weekly and it still isn't enough.

He's flaring terribly right now, he's back to walking like an 80 year old man.

We will have to increase his meds and see if it helps. He is also in physical

therapy, which is a great option for you too. I just know from talking to our

rheumy and everyone here that they need to be on the medication. I was

terrified to give him all of this, knowing all of the side effects, but then

they explained to me that if I don't it will be much worse for him. Joint

damage will occur and that can really mess them up because they're still

growing. You have to control the inflammation because that's what causes the

joint damage. It's a terrible decision to have to make and I know it scares you

to put him on the medication, but it's so necessary to make him better. Good

luck with everything, and please know that there are so many of us that feel

exactly like you.

, 12, Poly JRA

From: kimberlykomp@...

Date: Tue, 30 Nov 2010 14:14:03 +0000

Subject: Advice? Super grouchy 11 yr old

I need to get some advice or some ideas from you all.

My son, Henry was seen by the rheum in June. She says most likely he has JIA or

she uses the phrase " some kind of autoimmune process " going on. I just feel a

need to clarify that since we do not have a specific diagnosis. Most of Henry's

issues are first thing in the morning stiffness, and irritability throughout the

day as ibuprofen wears off.

Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

Because Henry doesn't have any visibly swollen joints and tends to minimize the

stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

I do want to avoid medication that will cause too many side effects or become

dangerous for him, but I need to find a way to help him. Should I see about

changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

this out? Emotionally and psychologically, I just think its worth it to try.

How do you all with children in school deal with the days with such fatigue? I

am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

Sorry if this seems rambling, but I would like to help him in the best way

possible.

[Guest guest]

n's joints have never been red and hot. They will get swollen, but never

red and warm. (n, 21, systemic)

On Nov 30, 2010, at 8:07 AM, Dantes wrote:

>

> Kim, I forgot to add that my son did not have the red swollen joints

everywhere. The only joint that swelled was his left knee and it was not red or

warm. His ankles, right knee, elbows, wrist, thumb, toes, left hip, shoulder

and neck are all involved, but never swelled or got red and rarely are warm to

the touch. When we first took him to the rheumatologist he avoided giving us a

diagnosis because his joints weren't red or warm to the touch and the x-rays

didn't show much, yet his blood work came back showing overwhelming signs of

JRA. He wasn't convinced until he had the MRI's done that really showed the

active arthritis in his joints and damage in his left knee. I also forgot to

mention that our pediatrician blew it off for over 2 1/2 years because his

joints weren't red, even though he was extremely symptomatic. would

also get crabby and minimize his stiffness, he would get tired of us asking.

behaves exactly the way you describe and also walks down the stairs like

Henry does. I'm not sure if you have insurance that covers it, but maybe an MRI

on Henry's knees and ankles would show your rheumy what's really going on and

then he can be treated effectively.

>

> From: cgdantes@...

>

> Subject: RE: Advice? Super grouchy 11 yr old

> Date: Tue, 30 Nov 2010 09:31:27 -0500

>

>

>

>

> I know exactly how you feel! It's like you're describing my day with my son

who is also homeschooled. The one thing that I've learned from talking to all

of he wonderful people in this group is that you have to control this horrible

disease, not just treat it. The ibuprofen is probably just skimming the

surface. Medications like Methotrexate help control the disease. It suppresses

the immune system so it stops fighting itself. I know that my son is on 875mg

of Naproxen each day and takes Methotrexate weekly and it still isn't enough.

He's flaring terribly right now, he's back to walking like an 80 year old man.

We will have to increase his meds and see if it helps. He is also in physical

therapy, which is a great option for you too. I just know from talking to our

rheumy and everyone here that they need to be on the medication. I was

terrified to give him all of this, knowing all of the side effects, but then

they explained to me that if I don't it will be much worse for him. Joint

damage will occur and that can really mess them up because they're still

growing. You have to control the inflammation because that's what causes the

joint damage. It's a terrible decision to have to make and I know it scares you

to put him on the medication, but it's so necessary to make him better. Good

luck with everything, and please know that there are so many of us that feel

exactly like you.

>

>

> , 12, Poly JRA

>

>

>

> From: kimberlykomp@...

> Date: Tue, 30 Nov 2010 14:14:03 +0000

> Subject: Advice? Super grouchy 11 yr old

>

>

>

>

>

> I need to get some advice or some ideas from you all.

>

> My son, Henry was seen by the rheum in June. She says most likely he has JIA

or she uses the phrase " some kind of autoimmune process " going on. I just feel a

need to clarify that since we do not have a specific diagnosis. Most of Henry's

issues are first thing in the morning stiffness, and irritability throughout the

day as ibuprofen wears off.

>

> Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

>

> Because Henry doesn't have any visibly swollen joints and tends to minimize

the stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

>

> I do want to avoid medication that will cause too many side effects or become

dangerous for him, but I need to find a way to help him. Should I see about

changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

this out? Emotionally and psychologically, I just think its worth it to try.

>

> How do you all with children in school deal with the days with such fatigue? I

am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

>

> Sorry if this seems rambling, but I would like to help him in the best way

possible.

>

>

>

>

>

>

>

[Guest guest]

I have to agree with . Ibuprofen is just not enough and even though it

is an OTC drug, it is not without dangerous side effects, especially at

increased doses. My son's ped rheumy wanted him off the NSAID as quickly as

possible as he did not like the possible side effects. It sounds like your son

needs a DMARD like methotrexate.

As to his tiredness and grouchiness, his body is constantly fighting itself.

That will cause both of those feelings to escalate. My son would come home from

school and nap when he was flaring, all the way into the college years. Still

does it now after work. When in school, we had an agreement with the teachers

that he could put his head down and rest or go lay down if he felt the need. Of

course, being a teen he did that very rarely. He would soldier on until after

class and come home and sleep. Once the disease was under better control with

the meds, that need lessened. Since you are homeschooling, perhaps you could be

flexible and let him sleep or rest when he needs, and when he is feeling better

work at those times of day. Also, starting the day with a warm shower often

helps to get stiff joints moving.

I know having a definite diagnosis would help. However, by the dr saying there

is something auto immune going on tells you his immune system is out of whack

and his body is fighting itself. As the rheumy my son saw as an adult said,

" while giving it an exact name is nice, it doesn't matter what we call it. There

is something going on with the immune system and the treatments are all very

similar, so we treat the disease. " Another thing to remember is that it is not

just joints that are affected. My son has a lot of tendon involvement which is

why they diagnosed him with spondylitis, although he often mimics psoriatic

arthritis as well and when first diagnosed he was considered pauci. Which is why

the rheumy didn't worry about what we called it, he wanted to treat the illness.

Let us know how things are going,

Hugs, Michele ( 23, spondy)

Advice? Super grouchy 11 yr old

I need to get some advice or some ideas from you all.

My son, Henry was seen by the rheum in June. She says most likely he has JIA or

she uses the phrase " some kind of autoimmune process " going on. I just feel a

need to clarify that since we do not have a specific diagnosis. Most of Henry's

issues are first thing in the morning stiffness, and irritability throughout the

day as ibuprofen wears off.

Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

Because Henry doesn't have any visibly swollen joints and tends to minimize the

stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

I do want to avoid medication that will cause too many side effects or become

dangerous for him, but I need to find a way to help him. Should I see about

changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

this out? Emotionally and psychologically, I just think its worth it to try.

How do you all with children in school deal with the days with such fatigue? I

am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

Sorry if this seems rambling, but I would like to help him in the best way

possible.

[Guest guest]

Thank you all for your advice.

Of course, now I have a little more.

Would switching to the Naprosyn be helpful? I take 400 mg every morning and the

occasional night time, and it has helped me quite a bit.

Is there a reason that Plaquenil is not prescribed for kids? Is it because it

takes so long to be effective? I have been on it since 2005 and have never had

any bad side effects, although it did take a few months to work.

After 12 hours of sleep last night, Henry is taking an almost 4 hour nap at this

point. While this is longer than usual, this is part of the pattern. It is very

frustrating to see other children in sports every night, going to bed late,

getting up early for the bus, and they still function!

KIm

[Guest guest]

Jaye has only very occasionally had warm joints in her knees and they do

not get red either.

Veri & Jaye 16 poly

Advice? Super grouchy 11 yr old

>

>

>

>

>

> I need to get some advice or some ideas from you all.

>

> My son, Henry was seen by the rheum in June. She says most likely he has JIA

or she uses the phrase " some kind of autoimmune process " going on. I just feel a

need to clarify that since we do not have a specific diagnosis. Most of Henry's

issues are first thing in the morning stiffness, and irritability throughout the

day as ibuprofen wears off.

>

> Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

>

> Because Henry doesn't have any visibly swollen joints and tends to minimize

the stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

>

> I do want to avoid medication that will cause too many side effects or become

dangerous for him, but I need to find a way to help him. Should I see about

changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

this out? Emotionally and psychologically, I just think its worth it to try.

>

> How do you all with children in school deal with the days with such fatigue? I

am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

>

> Sorry if this seems rambling, but I would like to help him in the best way

possible.

>

>

>

>

>

>

>

[Guest guest]

Hello. Sorry to hear that Henry is suffering so much. When my daughter was

first diagnosed a year ago (with systemic) we used prednisone and ibuprofen.

Initially she was put on Indocin and then on Aleve, but she could not tolerate

either of those. So, we had to stick with only ibuprofen. It's not the best

choice. It's hard on the stomach, and nearly impossible to keep up the round

the clock dosing - every 6 hours. We chose not to wake her up during the night

to give a dose, so was only receiving 3 doses per day, which doesn't give

full anti-inflammatory benefit. Now she is on Mobic (along with prednisone,

methotrexate and kineret) and Mobic is just a once per day tablet, giving full

anti-inflammatory benefit for 24 hours. So, you may want to check into other

NSAIDS. Regarding the fatigue, I understand what you are saying. Before we

started methotrexate and then kineret was fatigued ALL the time; one of

the aspects of systemic inflammation. She was " grouchy " too, and life was

certainly not as good as it could be. I know the use of lots of medications is

scary, and that you don't have an official diagnosis, but I also know that when

we put on the " big guns " we got our life back. We got our girl back. And

her little sister got her sissy back. I hope you can get a diagnosis and a

treatment plan soon for Henry. Hang in there.

nn (, 9, systemic)

>

>

> I need to get some advice or some ideas from you all.

>

> My son, Henry was seen by the rheum in June. She says most likely he has JIA

or she uses the phrase " some kind of autoimmune process " going on. I just feel

a need to clarify that since we do not have a specific diagnosis. Most of

Henry's issues are first thing in the morning stiffness, and irritability

throughout the day as ibuprofen wears off.

>

> Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

>

> Because Henry doesn't have any visibly swollen joints and tends to minimize

the stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

>

> I do want to avoid medication that will cause too many side effects or become

dangerous for him, but I need to find a way to help him. Should I see about

changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

this out? Emotionally and psychologically, I just think its worth it to try.

>

> How do you all with children in school deal with the days with such fatigue? I

am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

>

> Sorry if this seems rambling, but I would like to help him in the best way

possible.

>

[Guest guest]

I forgot to mention that 's joints have never been red and warm, or at

first even very swollen. But, her bloodwork was off the chart for systemic

inflammation.

nn (, 9, systemic)

>

> >

> > Kim, I forgot to add that my son did not have the red swollen joints

everywhere. The only joint that swelled was his left knee and it was not red or

warm. His ankles, right knee, elbows, wrist, thumb, toes, left hip, shoulder

and neck are all involved, but never swelled or got red and rarely are warm to

the touch. When we first took him to the rheumatologist he avoided giving us a

diagnosis because his joints weren't red or warm to the touch and the x-rays

didn't show much, yet his blood work came back showing overwhelming signs of

JRA. He wasn't convinced until he had the MRI's done that really showed the

active arthritis in his joints and damage in his left knee. I also forgot to

mention that our pediatrician blew it off for over 2 1/2 years because his

joints weren't red, even though he was extremely symptomatic. would

also get crabby and minimize his stiffness, he would get tired of us asking.

behaves exactly the way you describe and also walks down the stairs like

Henry does. I'm not sure if you have insurance that covers it, but maybe an MRI

on Henry's knees and ankles would show your rheumy what's really going on and

then he can be treated effectively.

> >

> > From: cgdantes@...

> >

> > Subject: RE: Advice? Super grouchy 11 yr old

> > Date: Tue, 30 Nov 2010 09:31:27 -0500

> >

> >

> >

> >

> > I know exactly how you feel! It's like you're describing my day with my son

who is also homeschooled. The one thing that I've learned from talking to all

of he wonderful people in this group is that you have to control this horrible

disease, not just treat it. The ibuprofen is probably just skimming the

surface. Medications like Methotrexate help control the disease. It suppresses

the immune system so it stops fighting itself. I know that my son is on 875mg

of Naproxen each day and takes Methotrexate weekly and it still isn't enough.

He's flaring terribly right now, he's back to walking like an 80 year old man.

We will have to increase his meds and see if it helps. He is also in physical

therapy, which is a great option for you too. I just know from talking to our

rheumy and everyone here that they need to be on the medication. I was

terrified to give him all of this, knowing all of the side effects, but then

they explained to me that if I don't it will be much worse for him. Joint

damage will occur and that can really mess them up because they're still

growing. You have to control the inflammation because that's what causes the

joint damage. It's a terrible decision to have to make and I know it scares you

to put him on the medication, but it's so necessary to make him better. Good

luck with everything, and please know that there are so many of us that feel

exactly like you.

> >

> >

> > , 12, Poly JRA

> >

> >

> >

> > From: kimberlykomp@...

> > Date: Tue, 30 Nov 2010 14:14:03 +0000

> > Subject: Advice? Super grouchy 11 yr old

> >

> >

> >

> >

> >

> > I need to get some advice or some ideas from you all.

> >

> > My son, Henry was seen by the rheum in June. She says most likely he has JIA

or she uses the phrase " some kind of autoimmune process " going on. I just feel a

need to clarify that since we do not have a specific diagnosis. Most of Henry's

issues are first thing in the morning stiffness, and irritability throughout the

day as ibuprofen wears off.

> >

> > Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

> >

> > Because Henry doesn't have any visibly swollen joints and tends to minimize

the stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

> >

> > I do want to avoid medication that will cause too many side effects or

become dangerous for him, but I need to find a way to help him. Should I see

about changing him to a 12 hour anti-inflammatory? Are the risks high enough to

wait this out? Emotionally and psychologically, I just think its worth it to

try.

> >

> > How do you all with children in school deal with the days with such fatigue?

I am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

> >

> > Sorry if this seems rambling, but I would like to help him in the best way

possible.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Kim I have a few thoughts for you. My son Avery is 17 and boys are moody. lol

First I would try to give him the advil before he gets out of bed. You could

even go in like 30 minutes before he's supposed to get up and give it to him and

tell him to lay there till it's time to get up. For us we understand our son

is in pain and we know the changes how he behaves but there are limits. I know

he doesn't feel well but that doesn't give him the right to be rude. I do give

him a little more slack but he still has to listen and mind and be respectful.

I think you will just have to keep an eye on the clock and see if you think the

meds are working and he is just being a grump, hormones do that or if they have

worn off and he just needs a break. I think it is a lot of trial and error.

Avery was just dx in September and missed 30 days of school. He was pretty sick

and it took a few weeks of increasing his day from 2 hours to all day to get him

back to a full day. I think pain is something we are going to have to live

with. Now he's not in the kind of pain he was because of his meds but he does

still get stiff or sore and I am sorry but he still has things to do. Hot

showers help and so does going to bed early. We had an argument Tuesday night

because he wanted to go to youth group. I didn't want him to go it doesn't get

out till 9:15 and he leaves for school at 6:10. I relented because, well he is

17 and I thought I was being a little unfair making him go to bed at 8:00 every

night. The next morning he kept talking about how tired he was. Didn't

matter, he had to go to school and do his work. Wednesday he was in bed at 8.

lol

Good luck!

Amy - Avery systemic

________________________________

From: kim k <kimberlykomp@...>

Sent: Tue, November 30, 2010 8:14:03 AM

Subject: Advice? Super grouchy 11 yr old

I need to get some advice or some ideas from you all.

My son, Henry was seen by the rheum in June. She says most likely he has JIA or

she uses the phrase " some kind of autoimmune process " going on. I just feel a

need to clarify that since we do not have a specific diagnosis. Most of Henry's

issues are first thing in the morning stiffness, and irritability throughout the

day as ibuprofen wears off.

Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

Because Henry doesn't have any visibly swollen joints and tends to minimize the

stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

I do want to avoid medication that will cause too many side effects or become

dangerous for him, but I need to find a way to help him. Should I see about

changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

this out? Emotionally and psychologically, I just think its worth it to try.

How do you all with children in school deal with the days with such fatigue? I

am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

Sorry if this seems rambling, but I would like to help him in the best way

possible.

[Guest guest]

Amy,

You sound like a mean mom. That is what my kids used to say to me. But it makes

them learn to pace themselves and know that when they make choices they still

have to get up the next morning and keep going. I am proud to be a mean mom.

Veri & Jaye 16 poly

Advice? Super grouchy 11 yr old

I need to get some advice or some ideas from you all.

My son, Henry was seen by the rheum in June. She says most likely he has JIA or

she uses the phrase " some kind of autoimmune process " going on. I just feel a

need to clarify that since we do not have a specific diagnosis. Most of Henry's

issues are first thing in the morning stiffness, and irritability throughout the

day as ibuprofen wears off.

Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

Because Henry doesn't have any visibly swollen joints and tends to minimize the

stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

I do want to avoid medication that will cause too many side effects or become

dangerous for him, but I need to find a way to help him. Should I see about

changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

this out? Emotionally and psychologically, I just think its worth it to try.

How do you all with children in school deal with the days with such fatigue? I

am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

Sorry if this seems rambling, but I would like to help him in the best way

possible.

[Guest guest]

I am proud to be a mean mom, too. " Mom, all the other kids do so and so. Why are

you so mean? "

My answer, " Because I love you, and it is my job to help you grow up to be the

best person you can be. "

(n, 21, systemic)

Sent from my iPhone

On Dec 2, 2010, at 6:13 PM, veristroud@... wrote:

>

> Amy,

>

> You sound like a mean mom. That is what my kids used to say to me. But it

makes them learn to pace themselves and know that when they make choices they

still have to get up the next morning and keep going. I am proud to be a mean

mom.

>

> Veri & Jaye 16 poly

>

> Advice? Super grouchy 11 yr old

>

> I need to get some advice or some ideas from you all.

>

> My son, Henry was seen by the rheum in June. She says most likely he has JIA

or

> she uses the phrase " some kind of autoimmune process " going on. I just feel a

> need to clarify that since we do not have a specific diagnosis. Most of

Henry's

> issues are first thing in the morning stiffness, and irritability throughout

the

> day as ibuprofen wears off.

>

> Henry is homeschooled. We struggled last year with motivation. Looking back,

> December was the worst of it, and we struggled to catch up with schoolwork.

For

> a while I assumed he was not challenged enough and was rebelling against work

> when he would disappear and fall asleep. Our biggest hurdle right now is

> determining how much of his issue with extreme irritability is age, school

work,

> or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't

help

> within 45 minutes.

>

> Because Henry doesn't have any visibly swollen joints and tends to minimize

the

> stiffness when we talk about it, it seems he doesn't have much trouble. I do

> know that he is very stiff in the morning, to the point of walking down the

> stairs sideways, slowly, one leg at a time. His irritability is causing him to

> be in trouble far more than I think is fair to him. His responses become

> increasingly angry and frustrated and he seems unable to connect his physical

> issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

> its usually after he is in trouble already.

>

> I do want to avoid medication that will cause too many side effects or become

> dangerous for him, but I need to find a way to help him. Should I see about

> changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

> this out? Emotionally and psychologically, I just think its worth it to try.

>

> How do you all with children in school deal with the days with such fatigue? I

> am sad for my 11 yr old boy who is suffering this week from playing with his

> friend for an hour and a half in the cold Sunday. His fatigue in the past 2

> weeks has increased significantly. He is still in bed now at 8 am, after going

> to bed (willingly) at 7:40 last night. He will still probably take a nap

today.

> But tomorrow will start his frustration again, as he has PE and then dance

class

> tonight, neither of which we want to discontinue.

>

> Sorry if this seems rambling, but I would like to help him in the best way

> possible.

>

>

[Guest guest]

lol I am. I have learned that momhood isn't for wimps! lol I also love

natural consequences it's better than talking till I'm blue in the face. lol

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Thu, December 2, 2010 8:13:44 PM

Subject: Re: Advice? Super grouchy 11 yr old

Amy,

You sound like a mean mom. That is what my kids used to say to me. But it makes

them learn to pace themselves and know that when they make choices they still

have to get up the next morning and keep going. I am proud to be a mean mom.

Veri & Jaye 16 poly

Advice? Super grouchy 11 yr old

I need to get some advice or some ideas from you all.

My son, Henry was seen by the rheum in June. She says most likely he has JIA or

she uses the phrase " some kind of autoimmune process " going on. I just feel a

need to clarify that since we do not have a specific diagnosis. Most of Henry's

issues are first thing in the morning stiffness, and irritability throughout the

day as ibuprofen wears off.

Henry is homeschooled. We struggled last year with motivation. Looking back,

December was the worst of it, and we struggled to catch up with schoolwork. For

a while I assumed he was not challenged enough and was rebelling against work

when he would disappear and fall asleep. Our biggest hurdle right now is

determining how much of his issue with extreme irritability is age, school work,

or JIA. I know that if he was just rebelling, then some ibuprofen wouldn't help

within 45 minutes.

Because Henry doesn't have any visibly swollen joints and tends to minimize the

stiffness when we talk about it, it seems he doesn't have much trouble. I do

know that he is very stiff in the morning, to the point of walking down the

stairs sideways, slowly, one leg at a time. His irritability is causing him to

be in trouble far more than I think is fair to him. His responses become

increasingly angry and frustrated and he seems unable to connect his physical

issues with his " grouchiness. " Once the ibuprofen is working, he sees it, but

its usually after he is in trouble already.

I do want to avoid medication that will cause too many side effects or become

dangerous for him, but I need to find a way to help him. Should I see about

changing him to a 12 hour anti-inflammatory? Are the risks high enough to wait

this out? Emotionally and psychologically, I just think its worth it to try.

How do you all with children in school deal with the days with such fatigue? I

am sad for my 11 yr old boy who is suffering this week from playing with his

friend for an hour and a half in the cold Sunday. His fatigue in the past 2

weeks has increased significantly. He is still in bed now at 8 am, after going

to bed (willingly) at 7:40 last night. He will still probably take a nap today.

But tomorrow will start his frustration again, as he has PE and then dance class

tonight, neither of which we want to discontinue.

Sorry if this seems rambling, but I would like to help him in the best way

possible.