5 year old with JRA . . . more questions

[Guest guest]

Hello,

I have posted before and always appreciated your answers and

feedback. I mostly read once in awhile and check in, because so many

times it is difficult for me to read about the troubles everyone is

going through! I hope that you will think about the things going on

at my house and see if you have any thoughts or ideas. We are really

struggling again.

My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

in September of 2006. We started initial treatment with lots of PT

and naprosyn twice daily. At first, we did see improvement, but

eventually her right knee was more swollen again. So, we started

Enbrel in September of 2007. This was a miracle for about 5

months . . . then we started in again with swelling and pain (or what

I assume is pain, because she never tells me anything). I would

guess that technically we have never had a point where her knee

was " under control. "

We increased her Naprosyn and are still not seeing huge results. In

addition to this, we had to skip a shot about three weeks ago,

because she was sick and on antibiotics. Some days are better than

others, obviously; her knee really doesn't look " terrible, " but I

sense that it is bothering her for this reason: every time she is

hurting, she has a huge behavior change. She gets extremely upset

with her family members (mostly me) and lashes out at us . . . It

seems that this does correlate with her knee feeling worse, but I

certainly have no solid proof. I'm so frustrated because I want to

help her, but I'm not finding anything that works. I can't let her

behave this way, but, yet, if she is in pain - - how awful!

My daughter does not stop hopping, skipping . . . all day long. She

does this when we are out, or at preschool, . . . to the point that

most people think she is totally fine. Then, when we get home or on

the way home, it all comes out. I'm trying to work with her to

notice that the more she does, the more she hurts, but I'm not having

success with this. I understand that to her, she has mostly felt

this way all of her life and doesn't know any differently, but I do

want her to learn to express her pain in other ways (if that is truly

what it is).

In addition to this, we've gone through times during her treatment

(especially right after she was diagnosed and when we started Enbrel)

that she was having accidents. I do not really think it is that she

is hurting too much to get up to make it to the restroom, because she

is very mobile, as I mentioned. I'm not sure what it could be

related to. I've been assured many times that it can't be the

medicine and we've had points on the medicine where this wasn't the

case, so that does seem to be accurate. I've sometimes thought it is

related to a flare coming on or in progress, but as I've said, her

knee doesn't look " terrible. " It is swollen a bit again, but not

dramatically hot or swollen. She has had previous UTIs, also, but I

do not think that is what is going on this time (no fever and she

doesn't seem sick today).

Anyway, I'm wondering are these things typical, or should I be

concerned that something else is going on with her? How did you get

your kids to tell you when they were in pain? I want to assume that

this is all related to her JRA, but could I be wrong? Do your

children get tired easily? Could this be part of what is going on?

We try to keep her at home as much as possible (to give her lots of

down time, but also keeping her out of crowds during " sick " season,

because of the Enbrel). Should I do this more?

Again, any thoughts or ideas would be appreciated. I'm struggling

with knowing what to do with her. It is difficult to take the brunt

of her behavior nearly every day (for about two months now) and to

struggle, too, with knowing what is causing it . . . Thanks for your

thoughts.

Becky

[Guest guest]

I'm so sorry your daughter is going through this. It is so hard to

find the right medication and I agree that you haven't found that

yet. Isabelle also began with just the left knee and was on Naprosyn

(even large doses), but that did NOTHING for her! The Ibuprofen

actually did more for her but still not enough to control it. This

went on for almost 8 months and then we went for a second opinion.

This new Rheumy told us that going straight to the steroid injections

(and especially when it's only one joint) is the rule of of thumb now

in recent treatments. Sometimes the older Rheumy's don't stay

current and keep trying different meds but in reality, going straight

to the injection will save the joint considerable potential damage.

That's what happened with us anyway ---- the steroid worked wonders

and yet we still needed another 6 mos. of PT to " undo the damage "

from the months of Naprosyn and Ibuprofen not truly working.

Now eventually for Isabelle the JRA did spread (to the other knee and

both ankles) and she is now on MTX which has been a GODsend for us

since about a year ago. She no longer has any limp from a good deal

of time with the PT, and so far so good. Knock on my head....

I guess my advice to you is to get that second opinion. That is my

motto now. We thought we were in really good hands being with the

Chief of Staff of Rhuem. at town U. but in reality a doctor

fresh out of her residency from Philly Children's turned out to be

a " miracle worker " for us. So that's why I am now so big on the 'ole

second opinion " .

All the best to you and your daughter, Hadley (Isabelle, 4 yrs. Pauci

JRA in " medicated remission " w/ MTX)

>

> Hello,

>

> I have posted before and always appreciated your answers and

> feedback. I mostly read once in awhile and check in, because so

many

> times it is difficult for me to read about the troubles everyone is

> going through! I hope that you will think about the things going

on

> at my house and see if you have any thoughts or ideas. We are

really

> struggling again.

>

> My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

> in September of 2006. We started initial treatment with lots of PT

> and naprosyn twice daily. At first, we did see improvement, but

> eventually her right knee was more swollen again. So, we started

> Enbrel in September of 2007. This was a miracle for about 5

> months . . . then we started in again with swelling and pain (or

what

> I assume is pain, because she never tells me anything). I would

> guess that technically we have never had a point where her knee

> was " under control. "

>

> We increased her Naprosyn and are still not seeing huge results.

In

> addition to this, we had to skip a shot about three weeks ago,

> because she was sick and on antibiotics. Some days are better than

> others, obviously; her knee really doesn't look " terrible, " but I

> sense that it is bothering her for this reason: every time she is

> hurting, she has a huge behavior change. She gets extremely upset

> with her family members (mostly me) and lashes out at us . . . It

> seems that this does correlate with her knee feeling worse, but I

> certainly have no solid proof. I'm so frustrated because I want to

> help her, but I'm not finding anything that works. I can't let her

> behave this way, but, yet, if she is in pain - - how awful!

>

> My daughter does not stop hopping, skipping . . . all day long.

She

> does this when we are out, or at preschool, . . . to the point that

> most people think she is totally fine. Then, when we get home or

on

> the way home, it all comes out. I'm trying to work with her to

> notice that the more she does, the more she hurts, but I'm not

having

> success with this. I understand that to her, she has mostly felt

> this way all of her life and doesn't know any differently, but I do

> want her to learn to express her pain in other ways (if that is

truly

> what it is).

>

> In addition to this, we've gone through times during her treatment

> (especially right after she was diagnosed and when we started

Enbrel)

> that she was having accidents. I do not really think it is that

she

> is hurting too much to get up to make it to the restroom, because

she

> is very mobile, as I mentioned. I'm not sure what it could be

> related to. I've been assured many times that it can't be the

> medicine and we've had points on the medicine where this wasn't the

> case, so that does seem to be accurate. I've sometimes thought it

is

> related to a flare coming on or in progress, but as I've said, her

> knee doesn't look " terrible. " It is swollen a bit again, but not

> dramatically hot or swollen. She has had previous UTIs, also, but

I

> do not think that is what is going on this time (no fever and she

> doesn't seem sick today).

>

> Anyway, I'm wondering are these things typical, or should I be

> concerned that something else is going on with her? How did you

get

> your kids to tell you when they were in pain? I want to assume

that

> this is all related to her JRA, but could I be wrong? Do your

> children get tired easily? Could this be part of what is going

on?

> We try to keep her at home as much as possible (to give her lots of

> down time, but also keeping her out of crowds during " sick " season,

> because of the Enbrel). Should I do this more?

>

> Again, any thoughts or ideas would be appreciated. I'm struggling

> with knowing what to do with her. It is difficult to take the

brunt

> of her behavior nearly every day (for about two months now) and to

> struggle, too, with knowing what is causing it . . . Thanks for

your

> thoughts.

>

> Becky

>

[Guest guest]

Becky,

So sorry to hear about the trouble you are having. An idea for helping your

daughter express where and if she is in pain ... A friend of mine whose child

was sick (with a different conditions) used faces. She had a smiley face, sad

face and a neutral face and put them on circles and that's how they did their

feelings. Maybe if you traced her body and let her color it in and decorate it,

she could then each day put a " face " on the parts of her body you had questions

about. If her knee was really bothering her she maybe would be more able to

express that by just putting a frowny face on her " paper knee " than having to

explain it to you verbally. It might give you a clue if other things were

bothering her as well. Just a thought ...

(Will 9 - pacui)

5 year old with JRA . . . more questions

Hello,

I have posted before and always appreciated your answers and

feedback. I mostly read once in awhile and check in, because so many

times it is difficult for me to read about the troubles everyone is

going through! I hope that you will think about the things going on

at my house and see if you have any thoughts or ideas. We are really

struggling again.

My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

in September of 2006. We started initial treatment with lots of PT

and naprosyn twice daily. At first, we did see improvement, but

eventually her right knee was more swollen again. So, we started

Enbrel in September of 2007. This was a miracle for about 5

months . . . then we started in again with swelling and pain (or what

I assume is pain, because she never tells me anything). I would

guess that technically we have never had a point where her knee

was " under control. "

We increased her Naprosyn and are still not seeing huge results. In

addition to this, we had to skip a shot about three weeks ago,

because she was sick and on antibiotics. Some days are better than

others, obviously; her knee really doesn't look " terrible, " but I

sense that it is bothering her for this reason: every time she is

hurting, she has a huge behavior change. She gets extremely upset

with her family members (mostly me) and lashes out at us . . . It

seems that this does correlate with her knee feeling worse, but I

certainly have no solid proof. I'm so frustrated because I want to

help her, but I'm not finding anything that works. I can't let her

behave this way, but, yet, if she is in pain - - how awful!

My daughter does not stop hopping, skipping . . . all day long. She

does this when we are out, or at preschool, . . . to the point that

most people think she is totally fine. Then, when we get home or on

the way home, it all comes out. I'm trying to work with her to

notice that the more she does, the more she hurts, but I'm not having

success with this. I understand that to her, she has mostly felt

this way all of her life and doesn't know any differently, but I do

want her to learn to express her pain in other ways (if that is truly

what it is).

In addition to this, we've gone through times during her treatment

(especially right after she was diagnosed and when we started Enbrel)

that she was having accidents. I do not really think it is that she

is hurting too much to get up to make it to the restroom, because she

is very mobile, as I mentioned. I'm not sure what it could be

related to. I've been assured many times that it can't be the

medicine and we've had points on the medicine where this wasn't the

case, so that does seem to be accurate. I've sometimes thought it is

related to a flare coming on or in progress, but as I've said, her

knee doesn't look " terrible. " It is swollen a bit again, but not

dramatically hot or swollen. She has had previous UTIs, also, but I

do not think that is what is going on this time (no fever and she

doesn't seem sick today).

Anyway, I'm wondering are these things typical, or should I be

concerned that something else is going on with her? How did you get

your kids to tell you when they were in pain? I want to assume that

this is all related to her JRA, but could I be wrong? Do your

children get tired easily? Could this be part of what is going on?

We try to keep her at home as much as possible (to give her lots of

down time, but also keeping her out of crowds during " sick " season,

because of the Enbrel). Should I do this more?

Again, any thoughts or ideas would be appreciated. I'm struggling

with knowing what to do with her. It is difficult to take the brunt

of her behavior nearly every day (for about two months now) and to

struggle, too, with knowing what is causing it . . . Thanks for your

thoughts.

Becky

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Becky,

To think that the mood changes happen from the pain is a good possibility.

Another thought might be from just being tired. I know for Jaye she is so

tired some days and I am confident it is from her JRA. She will not have swollen

joints but just achyness. is 14 so she is better able to communicate her

pain and such if she would. Many days I will notice her limping and when I ask

if she is hurting she will say " no, not really " and keep going. She will try to

not limp but if I watch I will notice when she does not think I am watching that

she will be favoring her knees. She will seldom talk about her pain because she

is so used to it. The one thing that she can not get around though is the

exhaustion.?If she gets?going she can keep moving but once she stops she often

can hardly get the energy to do much of anything. Today, she got up to get ready

for school and took a shower. After her shower she sat down and promply fell

back to sleep and slept until a bit after noon. Tonight her knees are really

bothering her. She has been down nearly all day and now the pain. I have to

assume that?the exhaustion was the warning sign for the pain to?come. I have no

answers just ideas.

Veri & Jaye 14 poly?

5 year old with JRA . . . more questions

Hello,

I have posted before and always appreciated your answers and

feedback. I mostly read once in awhile and check in, because so many

times it is difficult for me to read about the troubles everyone is

going through! I hope that you will think about the things going on

at my house and see if you have any thoughts or ideas. We are really

struggling again.

My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

in September of 2006. We started initial treatment with lots of PT

and naprosyn twice daily. At first, we did see improvement, but

eventually her right knee was more swollen again. So, we started

Enbrel in September of 2007. This was a miracle for about 5

months . . . then we started in again with swelling and pain (or what

I assume is pain, because she never tells me anything). I would

guess that technically we have never had a point where her knee

was " under control. "

We increased her Naprosyn and are still not seeing huge results. In

addition to this, we had to skip a shot about three weeks ago,

because she was sick and on antibiotics. Some days are better than

others, obviously; her knee really doesn't look " terrible, " but I

sense that it is bothering her for this reason: every time she is

hurting, she has a huge behavior change. She gets extremely upset

with her family members (mostly me) and lashes out at us . . . It

seems that this does correlate with her knee feeling worse, but I

certainly have no solid proof. I'm so frustrated because I want to

help her, but I'm not finding anything that works. I can't let her

behave this way, but, yet, if she is in pain - - how awful!

My daughter does not stop hopping, skipping . . . all day long. She

does this when we are out, or at preschool, . . . to the point that

most people think she is totally fine. Then, when we get home or on

the way home, it all comes out. I'm trying to work with her to

notice that the more she does, the more she hurts, but I'm not having

success with this. I understand that to her, she has mostly felt

this way all of her life and doesn't know any differently, but I do

want her to learn to express her pain in other ways (if that is truly

what it is).

In addition to this, we've gone through times during her treatment

(especially right after she was diagnosed and when we started Enbrel)

that she was having accidents. I do not really think it is that she

is hurting too much to get up to make it to the restroom, because she

is very mobile, as I mentioned. I'm not sure what it could be

related to. I've been assured many times that it can't be the

medicine and we've had points on the medicine where this wasn't the

case, so that does seem to be accurate. I've sometimes thought it is

related to a flare coming on or in progress, but as I've said, her

knee doesn't look " terrible. " It is swollen a bit again, but not

dramatically hot or swollen. She has had previous UTIs, also, but I

do not think that is what is going on this time (no fever and she

doesn't seem sick today).

Anyway, I'm wondering are these things typical, or should I be

concerned that something else is going on with her? How did you get

your kids to tell you when they were in pain? I want to assume that

this is all related to her JRA, but could I be wrong? Do your

children get tired easily? Could this be part of what is going on?

We try to keep her at home as much as possible (to give her lots of

down time, but also keeping her out of crowds during " sick " season,

because of the Enbrel). Should I do this more?

Again, any thoughts or ideas would be appreciated. I'm struggling

with knowing what to do with her. It is difficult to take the brunt

of her behavior nearly every day (for about two months now) and to

struggle, too, with knowing what is causing it . . . Thanks for your

thoughts.

Becky

[Guest guest]

>hi,sorry about your sweet daughter,talk to your doc about mtx thats

what we give my daughter and it has been great ,also you might want to

think about joint injections my daughters doc saig its the best for

quickly handling the problem.good luck.

> Hello,

>

> I have posted before and always appreciated your answers and

> feedback. I mostly read once in awhile and check in, because so many

> times it is difficult for me to read about the troubles everyone is

> going through! I hope that you will think about the things going on

> at my house and see if you have any thoughts or ideas. We are really

> struggling again.

>

> My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

> in September of 2006. We started initial treatment with lots of PT

> and naprosyn twice daily. At first, we did see improvement, but

> eventually her right knee was more swollen again. So, we started

> Enbrel in September of 2007. This was a miracle for about 5

> months . . . then we started in again with swelling and pain (or what

> I assume is pain, because she never tells me anything). I would

> guess that technically we have never had a point where her knee

> was " under control. "

>

> We increased her Naprosyn and are still not seeing huge results. In

> addition to this, we had to skip a shot about three weeks ago,

> because she was sick and on antibiotics. Some days are better than

> others, obviously; her knee really doesn't look " terrible, " but I

> sense that it is bothering her for this reason: every time she is

> hurting, she has a huge behavior change. She gets extremely upset

> with her family members (mostly me) and lashes out at us . . . It

> seems that this does correlate with her knee feeling worse, but I

> certainly have no solid proof. I'm so frustrated because I want to

> help her, but I'm not finding anything that works. I can't let her

> behave this way, but, yet, if she is in pain - - how awful!

>

> My daughter does not stop hopping, skipping . . . all day long. She

> does this when we are out, or at preschool, . . . to the point that

> most people think she is totally fine. Then, when we get home or on

> the way home, it all comes out. I'm trying to work with her to

> notice that the more she does, the more she hurts, but I'm not having

> success with this. I understand that to her, she has mostly felt

> this way all of her life and doesn't know any differently, but I do

> want her to learn to express her pain in other ways (if that is truly

> what it is).

>

> In addition to this, we've gone through times during her treatment

> (especially right after she was diagnosed and when we started Enbrel)

> that she was having accidents. I do not really think it is that she

> is hurting too much to get up to make it to the restroom, because she

> is very mobile, as I mentioned. I'm not sure what it could be

> related to. I've been assured many times that it can't be the

> medicine and we've had points on the medicine where this wasn't the

> case, so that does seem to be accurate. I've sometimes thought it is

> related to a flare coming on or in progress, but as I've said, her

> knee doesn't look " terrible. " It is swollen a bit again, but not

> dramatically hot or swollen. She has had previous UTIs, also, but I

> do not think that is what is going on this time (no fever and she

> doesn't seem sick today).

>

> Anyway, I'm wondering are these things typical, or should I be

> concerned that something else is going on with her? How did you get

> your kids to tell you when they were in pain? I want to assume that

> this is all related to her JRA, but could I be wrong? Do your

> children get tired easily? Could this be part of what is going on?

> We try to keep her at home as much as possible (to give her lots of

> down time, but also keeping her out of crowds during " sick " season,

> because of the Enbrel). Should I do this more?

>

> Again, any thoughts or ideas would be appreciated. I'm struggling

> with knowing what to do with her. It is difficult to take the brunt

> of her behavior nearly every day (for about two months now) and to

> struggle, too, with knowing what is causing it . . . Thanks for your

> thoughts.

>

> Becky

>

[Guest guest]

Thanks to everyone for your thoughts. I hadn't really been thinking

as much about how tired she could be from the JRA itself. I mostly

was thinking about pain . . . I guess that I didn't realize that it

causes fatigue, also. I have recently been reading a bit more about

that. I just thought she was tired from meds, running around . . .;

she just seemed like a child that needed more down time than others.

But, it does all make more sense.

Thanks again to everyone.

Becky

>

> Becky,

> To think that the mood changes happen from the pain is a good

possibility. Another thought might be from just being tired. I know

for Jaye she is so tired some days and I am confident it is

from her JRA. She will not have swollen joints but just achyness.

is 14 so she is better able to communicate her pain and such

if she would. Many days I will notice her limping and when I ask if

she is hurting she will say " no, not really " and keep going. She will

try to not limp but if I watch I will notice when she does not think

I am watching that she will be favoring her knees. She will seldom

talk about her pain because she is so used to it. The one thing that

she can not get around though is the exhaustion.?If she gets?going

she can keep moving but once she stops she often can hardly get the

energy to do much of anything. Today, she got up to get ready for

school and took a shower. After her shower she sat down and promply

fell back to sleep and slept until a bit after noon. Tonight her

knees are really bothering her. She has been down nearly all day and

now the pain. I have to assume that?the exhaustion was the warning

sign for the pain to?come. I have no answers just ideas.

>

> Veri & Jaye 14 poly?

>

>

> 5 year old with JRA . . . more questions

>

>

>

>

>

>

> Hello,

>

> I have posted before and always appreciated your answers and

> feedback. I mostly read once in awhile and check in, because so

many

> times it is difficult for me to read about the troubles everyone is

> going through! I hope that you will think about the things going on

> at my house and see if you have any thoughts or ideas. We are

really

> struggling again.

>

> My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

> in September of 2006. We started initial treatment with lots of PT

> and naprosyn twice daily. At first, we did see improvement, but

> eventually her right knee was more swollen again. So, we started

> Enbrel in September of 2007. This was a miracle for about 5

> months . . . then we started in again with swelling and pain (or

what

> I assume is pain, because she never tells me anything). I would

> guess that technically we have never had a point where her knee

> was " under control. "

>

> We increased her Naprosyn and are still not seeing huge results. In

> addition to this, we had to skip a shot about three weeks ago,

> because she was sick and on antibiotics. Some days are better than

> others, obviously; her knee really doesn't look " terrible, " but I

> sense that it is bothering her for this reason: every time she is

> hurting, she has a huge behavior change. She gets extremely upset

> with her family members (mostly me) and lashes out at us . . . It

> seems that this does correlate with her knee feeling worse, but I

> certainly have no solid proof. I'm so frustrated because I want to

> help her, but I'm not finding anything that works. I can't let her

> behave this way, but, yet, if she is in pain - - how awful!

>

> My daughter does not stop hopping, skipping . . . all day long. She

> does this when we are out, or at preschool, . . . to the point that

> most people think she is totally fine. Then, when we get home or on

> the way home, it all comes out. I'm trying to work with her to

> notice that the more she does, the more she hurts, but I'm not

having

> success with this. I understand that to her, she has mostly felt

> this way all of her life and doesn't know any differently, but I do

> want her to learn to express her pain in other ways (if that is

truly

> what it is).

>

> In addition to this, we've gone through times during her treatment

> (especially right after she was diagnosed and when we started

Enbrel)

> that she was having accidents. I do not really think it is that she

> is hurting too much to get up to make it to the restroom, because

she

> is very mobile, as I mentioned. I'm not sure what it could be

> related to. I've been assured many times that it can't be the

> medicine and we've had points on the medicine where this wasn't the

> case, so that does seem to be accurate. I've sometimes thought it

is

> related to a flare coming on or in progress, but as I've said, her

> knee doesn't look " terrible. " It is swollen a bit again, but not

> dramatically hot or swollen. She has had previous UTIs, also, but I

> do not think that is what is going on this time (no fever and she

> doesn't seem sick today).

>

> Anyway, I'm wondering are these things typical, or should I be

> concerned that something else is going on with her? How did you get

> your kids to tell you when they were in pain? I want to assume that

> this is all related to her JRA, but could I be wrong? Do your

> children get tired easily? Could this be part of what is going on?

> We try to keep her at home as much as possible (to give her lots of

> down time, but also keeping her out of crowds during " sick " season,

> because of the Enbrel). Should I do this more?

>

> Again, any thoughts or ideas would be appreciated. I'm struggling

> with knowing what to do with her. It is difficult to take the brunt

> of her behavior nearly every day (for about two months now) and to

> struggle, too, with knowing what is causing it . . . Thanks for

your

> thoughts.

>

> Becky

>

>

>

>

>

>

>

[Guest guest]

HI

You could be describing my son- except he's 11! He acts fine most of the

time around other people. We are all usually the ones that get the brunt

of his grouchiness. I will say that he was the worst with emotional

highs and lows when on enbrel. I think it was because the level of

enbrel did not stay consistant in his body. I think a lot of us face the

problem of our kids looking fine to the general population- no one else

sees the tears or the frustration that they let out at home. These kids

do also get tired more easily than other kids. I think chronic pain in

and of itself is a draining thing. When I'm tired and in pain, I can be

pretty grouchy too! Could you add an extra nap in her day or even a 30

minute rest when she gets home from preschool or something?

The face idea is a good one especially for a young child. I also had a

PT friend of mine say to give our son a drawing of a body and have him

color where it hurts. A lot of people are telling you to check out mtx-

that is methotrexate and is a disease modifying drug- like a chemo drug

that checks any cells that are multiplying fast (like cancer cells or in

this case RA cells that are attacking joints) That is a great idea.

Also the idea of joint injections is also a good option if she has no

other joints involved. They tried this with my son at one time, but it

was not a huge success. Some people though have wonderful success with

joint injections. Are you seeing a pediatric rheumatologist? You said

that you posted earlier -so this may have been mentioned already, but

Lehman (pediatric rheumy) wrote a book called, " It's not just

Growing Pains. " It is an excellent resource that explains a lot of

different things. You may know all this- if it's redundant, I'm sorry.

Jinny (11 pauci)

On Mon, 24 Mar 2008 13:28:42 -0000 " jmm942000 " <jmm942000@...>

writes:

> Hello,

>

> I have posted before and always appreciated your answers and

> feedback. I mostly read once in awhile and check in, because so

> many

> times it is difficult for me to read about the troubles everyone is

>

> going through! I hope that you will think about the things going on

>

> at my house and see if you have any thoughts or ideas. We are

> really

> struggling again.

>

> My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

>

> in September of 2006. We started initial treatment with lots of PT

>

> and naprosyn twice daily. At first, we did see improvement, but

> eventually her right knee was more swollen again. So, we started

> Enbrel in September of 2007. This was a miracle for about 5

> months . . . then we started in again with swelling and pain (or

> what

> I assume is pain, because she never tells me anything). I would

> guess that technically we have never had a point where her knee

> was " under control. "

>

> We increased her Naprosyn and are still not seeing huge results.

> In

> addition to this, we had to skip a shot about three weeks ago,

> because she was sick and on antibiotics. Some days are better than

> others, obviously; her knee really doesn't look " terrible, " but I

> sense that it is bothering her for this reason: every time she is

> hurting, she has a huge behavior change. She gets extremely upset

> with her family members (mostly me) and lashes out at us . . . It

> seems that this does correlate with her knee feeling worse, but I

> certainly have no solid proof. I'm so frustrated because I want to

>

> help her, but I'm not finding anything that works. I can't let her

>

> behave this way, but, yet, if she is in pain - - how awful!

>

> My daughter does not stop hopping, skipping . . . all day long. She

>

> does this when we are out, or at preschool, . . . to the point that

> most people think she is totally fine. Then, when we get home or on

>

> the way home, it all comes out. I'm trying to work with her to

> notice that the more she does, the more she hurts, but I'm not

> having

> success with this. I understand that to her, she has mostly felt

> this way all of her life and doesn't know any differently, but I do

>

> want her to learn to express her pain in other ways (if that is

> truly

> what it is).

>

> In addition to this, we've gone through times during her treatment

> (especially right after she was diagnosed and when we started

> Enbrel)

> that she was having accidents. I do not really think it is that she

>

> is hurting too much to get up to make it to the restroom, because

> she

> is very mobile, as I mentioned. I'm not sure what it could be

> related to. I've been assured many times that it can't be the

> medicine and we've had points on the medicine where this wasn't the

>

> case, so that does seem to be accurate. I've sometimes thought it

> is

> related to a flare coming on or in progress, but as I've said, her

> knee doesn't look " terrible. " It is swollen a bit again, but not

> dramatically hot or swollen. She has had previous UTIs, also, but I

>

> do not think that is what is going on this time (no fever and she

> doesn't seem sick today).

>

> Anyway, I'm wondering are these things typical, or should I be

> concerned that something else is going on with her? How did you get

>

> your kids to tell you when they were in pain? I want to assume that

>

> this is all related to her JRA, but could I be wrong? Do your

> children get tired easily? Could this be part of what is going on?

>

> We try to keep her at home as much as possible (to give her lots of

>

> down time, but also keeping her out of crowds during " sick " season,

>

> because of the Enbrel). Should I do this more?

>

> Again, any thoughts or ideas would be appreciated. I'm struggling

> with knowing what to do with her. It is difficult to take the brunt

>

> of her behavior nearly every day (for about two months now) and to

> struggle, too, with knowing what is causing it . . . Thanks for your

>

> thoughts.

>

> Becky

>

>

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

>

>

[Guest guest]

Hi Becky,

I just wanted to let you know that you're not alone! My 5 year

old is very much like yours. She hides EVERYTHING in front of other

people and then falls to pieces at home and lashes out in angry fits -

mostly at me. And she really is the sweetest, calmest, shyest

little girl - when she's not hurting. But over the last two years, I

have learned that for Lianna, anger=pain. Most of the time when I

ask her if she is hurting, she gets very frustrated with me. And

just asking her to look at a pain face chart throws her into a fit!

So for us, we've learned to read her body language and stop asking

her. For Lianna, none of this was medication effects because it

began long before she was on any type of medication.

Now, in our family - it's not acceptable behavior to yell nasty

things, hit, kick, spit or bite - all of these things she has tried

to do when exhausted or really in pain. So what do you do with a

child who is desperately hurting/exhausted and behaving in such

horrible way? Do you punish, cuddle, bribe...that's what we struggle

with and you probably do too! Thankfully, we only have to deal with

this at home - never in front of other people - and it's certainly

not every day. But still, it's exhausting and hurtful for a parent

to be treated this way.

I'm not sure I have any answers for you but can share a few

things we've tried with some success. A really big help for us has

been to try to avoid getting to those points of exhaustion. We try

to flip flop active play with quiet play. So when Lianna comes home

from preschool, we eat lunch, then read stories on the sofa, then

mommy does her work while Lianna rests with books or quiet toys on

the sofa - by herself for one hour. Then she can tolerate playing

with a friend in the afternoon, followed by a bit more rest before

dinner. A day of continual activity - even when she seems to be

great - is ALWAYS followed by a disaster day for us.

As far as the anger, it's a feeling that we all have and I think

even a child needs to find a way to express it without hurting other

people. We're still struggling with this. We don't punish anger,

but we do punish when someone has been hurt. We've encouraged Lianna

to draw pictures of her anger, to go to her room to listen to music

and we've done physical activity (like jumping jacks) to help diffuse

the anger. I can't say we've found the magic bullet, but she

definitely understands now that it's wrong to hurt other people -

physically or emotionally - when she is hurting. And you know - when

the bad time passes, she is sooo ashamed of her behavior and that's a

good time for teaching about unconditional love and forgiveness.

So, not sure if that's any help to you - but please know you are

not alone in your struggles. Best wishes to you and your daughter :-)

Oh - as far as the accidents - Lianna always has more frequent

peeing just before and during a flare up. She's had several

accidents because she has to go so urgently she can't get to the

bathroom on time. No answers at all on this. She's had her kidneys

checked and re-checked and nothing found. Just another odd quirk ;-)

Jo Anne, mama to Lianna (5) JA or muscle/tissue disease

>

> Hello,

>

> I have posted before and always appreciated your answers and

> feedback. I mostly read once in awhile and check in, because so

many

> times it is difficult for me to read about the troubles everyone is

> going through! I hope that you will think about the things going

on

> at my house and see if you have any thoughts or ideas. We are

really

> struggling again.

>

> My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

> in September of 2006. We started initial treatment with lots of PT

> and naprosyn twice daily. At first, we did see improvement, but

> eventually her right knee was more swollen again. So, we started

> Enbrel in September of 2007. This was a miracle for about 5

> months . . . then we started in again with swelling and pain (or

what

> I assume is pain, because she never tells me anything). I would

> guess that technically we have never had a point where her knee

> was " under control. "

>

> We increased her Naprosyn and are still not seeing huge results.

In

> addition to this, we had to skip a shot about three weeks ago,

> because she was sick and on antibiotics. Some days are better than

> others, obviously; her knee really doesn't look " terrible, " but I

> sense that it is bothering her for this reason: every time she is

> hurting, she has a huge behavior change. She gets extremely upset

> with her family members (mostly me) and lashes out at us . . . It

> seems that this does correlate with her knee feeling worse, but I

> certainly have no solid proof. I'm so frustrated because I want to

> help her, but I'm not finding anything that works. I can't let her

> behave this way, but, yet, if she is in pain - - how awful!

>

> My daughter does not stop hopping, skipping . . . all day long.

She

> does this when we are out, or at preschool, . . . to the point that

> most people think she is totally fine. Then, when we get home or

on

> the way home, it all comes out. I'm trying to work with her to

> notice that the more she does, the more she hurts, but I'm not

having

> success with this. I understand that to her, she has mostly felt

> this way all of her life and doesn't know any differently, but I do

> want her to learn to express her pain in other ways (if that is

truly

> what it is).

>

> In addition to this, we've gone through times during her treatment

> (especially right after she was diagnosed and when we started

Enbrel)

> that she was having accidents. I do not really think it is that

she

> is hurting too much to get up to make it to the restroom, because

she

> is very mobile, as I mentioned. I'm not sure what it could be

> related to. I've been assured many times that it can't be the

> medicine and we've had points on the medicine where this wasn't the

> case, so that does seem to be accurate. I've sometimes thought it

is

> related to a flare coming on or in progress, but as I've said, her

> knee doesn't look " terrible. " It is swollen a bit again, but not

> dramatically hot or swollen. She has had previous UTIs, also, but

I

> do not think that is what is going on this time (no fever and she

> doesn't seem sick today).

>

> Anyway, I'm wondering are these things typical, or should I be

> concerned that something else is going on with her? How did you

get

> your kids to tell you when they were in pain? I want to assume

that

> this is all related to her JRA, but could I be wrong? Do your

> children get tired easily? Could this be part of what is going

on?

> We try to keep her at home as much as possible (to give her lots of

> down time, but also keeping her out of crowds during " sick " season,

> because of the Enbrel). Should I do this more?

>

> Again, any thoughts or ideas would be appreciated. I'm struggling

> with knowing what to do with her. It is difficult to take the

brunt

> of her behavior nearly every day (for about two months now) and to

> struggle, too, with knowing what is causing it . . . Thanks for

your

> thoughts.

>

> Becky

>

[Guest guest]

Hi Becky,

I am sorry to hear of the struggle you have been having.? It is very hard with

such a young child to be supportive without giving them an excuse for bad

behavior.? I saw similar changes?- that actually became quite extreme with my

son when he was 4.? At the time he was on a very high dose of steriods - which

accounted for the mood swings, but I knew I had to take a strong step when my

wonderfully sweet little boy became angry and aggressive to the point of

violence; hitting, kicking and screaming at me - and throwing things.? I

contacted his pediatrician and we ended up with a psychology consult for " play

therapy " .? We had weekly visits for 10 weeks.? During this time period we were

also tapering the steriod dose, so the combination worked wonders.? Prior to his

first appt with the child psychologist I had already done two things. He was at

his worst one night, and as long as he continued the behavior, I emptied his

room of all his toys, his fancy curtains, blankets, etc and his clothes that had

any cartoon characters on them, as well as the pictures on the walls.? He later

told a friend that all he had left was books and his bed and " blank " clothes and

bed covers.? He later earned everything back - but it took time.? I also talked

to him the next day when things were calmer.? At that age he was totally into

Batman, so the conversation went something like this:

Me: I think we need to talk about the way you have been acting.? You have been

watching a lot of Batman and Power Rangers on TV, haven't you?

Robbie: I like Batman and Power Rangers

Me: Yes, I know, but I think that there is too much fighting on these shows. I

think that maybe you don't understand when it is ok to fight, when it isn't and

that the TV shows aren't real.

Robbie: I don't like to fight.

Me:? Well, I didn't think so, but lately I am not so sure.? Who do Batman and

the Power Rangers fight?

Robbie: (at 4) Cwiminals

Me: Are you a criminal?

Robbie: NO

Me: Am I a criminal?

Robbie: No, (laughing)

Me: Well, then, since there are no criminals in this house there should be no

hitting no yelling, no kicking and no throwing things.

Robbie: (starting to cry) I know.

Me: Robbie, I know that you don't understand why you feel angry and upset

sometimes, and I know that you can't control how you feel.? But, you can control

what you do & how you show those feelings.? You can tell me how you feel,

without yelling at me.? You can go to your room if you feel mad or sad and you

can hit your pillow, or throw it, but you cannot hit me, you cannot hit anyone

just because you feel bad, that is wrong.? You cannot yell at me because you

feel bad - that is also wrong.

Robbie:Ok.? When do I get my toys and my Batman shirts back?

Me:? When you earn them back.? Everyday if we have more good behavior than bad,

you will get something back in your room. And for now, you can still watch your

shows, but if I see anymore bad bahavior like last night, there will be no tv.

Robbie: ok Mommy.

Me: And one more thing, (And I pointed my finger at him to get his attention) I

know how much you love Batman, but I'll tell you something about Batman

Robbie: What?

Me: Batman would never hit his Mother, and he wouldn't like anyone who did.

At that Robbie told me he was sorry, began crying and hugged me.?

The psychologist backed up what I had already done and recommended a book on

behavior modification.? 's acting out only occurred with me - though he

did have one moment of " shortness " with a fellow kindergardner the next year &

the teacher and I had alreadyspoken and I had ?warned of possible mood swings

due to the medication changes he was having at the time.? She put him in timeout

as she would any other child - and told me she felt bad because the behavior was

so unlike him, but I assured he that she had done the right thing,? Showing

compassion and understanding for the feelings they can't control is very

important, but at that young age they are learning to deal with these emotions -

even healthy kids at that age experience mood swings (though generally not as

extreme) and learned behavior is learned behavior.? They are learning now how to

deal with the struggles that life brings down the road - and we must teach them

coping techniques that work, that are acceptable and that don't harm others.?

Granted, our children seem to learn these lessons - like everything else - much

earlier and it is very tough to maintain the consistency and the discipline when

we know that they are hurting.? I wasn't always able to do so myself, but I did

manage to teach him something because I have no real discipline problems with

.?

I do realize, of course that we embarking on the middle school years, and life

can change at any moment.? : )?? But, I remember thinking, curled up trying to

protect myself from my 4 year old kicking me " If I can't gain control of this

now, what will I do when he is 14? "

I know this is beyond what you have described with your daughter, and since she

isn't cuirrently taking steriods, it doesn't sound like it will get to that

point, but I thought I would share my story to let you know that many have

experienced this at a variety of levels.? Depression can certainly be behind

these issues, as JRA has taken things from her.? Only you can tell if she may

need more help in learning to cope with these feelings.? You may want to talk to

the pediatrician.? began having " accidents " - during this time period as

well, but only during the night.? That improved with the lower steriod dose and

following the counselling as well.

Again, please don't take this the wrong way.? I don't often speak up when

parents discuss this issue on here, because once when I did, one parent became

very angry at me and seemed to feel that I was criticizing her parenting - which

certainly wasn't my intent.? So, I hope you find this helpful - it is difficult

to find that balance.? It is also hard at times to figure out what is from the

arthritis, and what is just the?child testing the limits.

Just one more thing to?add - that I thought was funny.? My son loves to

watch?Super Nanny -?I'm not sure why & I tease him sometimes that I will call

her if he doesn't do something about his messy room.? Anyway, we were watching

one episode not too long ago & ?there was a boy that was behaving quite badly,

hitting and kicking a sibling and throwing things.? said " that boy is

lucky he doesn't?live here " and when I asked him why, he?told me " because he

wouldn't?have anything left in his room. " -?I couldn't believe it -?he was 4!?

And 6 years later, he remembers.

Good luck,

Val

Rob's Mom (10, systemic)

Hello,

I have posted before and always appreciated your answers and

feedback. I mostly read once in awhile and check in, because so many

times it is difficult for me to read about the troubles everyone is

going through! I hope that you will think about the things going on

at my house and see if you have any thoughts or ideas. We are really

struggling again.

My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

in September of 2006. We started initial treatment with lots of PT

and naprosyn twice daily. At first, we did see improvement, but

eventually her right knee was more swollen again. So, we started

Enbrel in September of 2007. This was a miracle for about 5

months . . . then we started in again with swelling and pain (or what

I assume is pain, because she never tells me anything). I would

guess that technically we have never had a point where her knee

was " under control. "

We increased her Naprosyn and are still not seeing huge results. In

addition to this, we had to skip a shot about three weeks ago,

because she was sick and on antibiotics. Some days are better than

others, obviously; her knee really doesn't look " terrible, " but I

sense that it is bothering her for this reason: every time she is

hurting, she has a huge behavior change. She gets extremely upset

with her family members (mostly me) and lashes out at us . . . It

seems that this does correlate with her knee feeling worse, but I

certainly have no solid proof. I'm so frustrated because I want to

help her, but I'm not finding anything that works. I can't let her

behave this way, but, yet, if she is in pain - - how awful!

My daughter does not stop hopping, skipping . . . all day long. She

does this when we are out, or at preschool, . . . to the point that

most people think she is totally fine. Then, when we get home or on

the way home, it all comes out. I'm trying to work with her to

notice that the more she does, the more she hurts, but I'm not having

success with this. I understand that to her, she has mostly felt

this way all of her life and doesn't know any differently, but I do

want her to learn to express her pain in other ways (if that is truly

what it is).

In addition to this, we've gone through times during her treatment

(especially right after she was diagnosed and when we started Enbrel)

that she was having accidents. I do not really think it is that she

is hurting too much to get up to make it to the restroom, because she

is very mobile, as I mentioned. I'm not sure what it could be

related to. I've been assured many times that it can't be the

medicine and we've had points on the medicine where this wasn't the

case, so that does seem to be accurate. I've sometimes thought it is

related to a flare coming on or in progress, but as I've said, her

knee doesn't look " terrible. " It is swollen a bit again, but not

dramatically hot or swollen. She has had previous UTIs, also, but I

do not think that is what is going on this time (no fever and she

doesn't seem sick today).

Anyway, I'm wondering are these things typical, or should I be

concerned that something else is going on with her? How did you get

your kids to tell you when they were in pain? I want to assume that

this is all related to her JRA, but could I be wrong? Do your

children get tired easily? Could this be part of what is going on?

We try to keep her at home as much as possible (to give her lots of

down time, but also keeping her out of crowds during " sick " season,

because of the Enbrel). Should I do this more?

Again, any thoughts or ideas would be appreciated. I'm struggling

with knowing what to do with her. It is difficult to take the brunt

of her behavior nearly every day (for about two months now) and to

struggle, too, with knowing what is causing it . . . Thanks for your

thoughts.

Becky

[Guest guest]

Wow, I can't tell you how much I appreciate your honesty. It is so

difficult and I've felt such relief today knowing that there are

others out there going through the same things or at least that have

gone through the same things.

You are right - - it is very difficult to know what is going on and

how to respond. I've been trying to teach her how to calm herself

down and take " breaks, " but it seems like one long day after

another. . . even if she isn't screaming, I'm always wondering when

the next outburst will come.

I appreciate your ideas on working through things . . . we might not

be there, yet, but I certainly know there are some other options. It

is so interesting that in the fall (once the Enbrel started working)

all the way until the end of January, we had NO problems at all. She

was never angry or yelling . . . I've tried to doubt this and tried

to say that I'm making excuses for her behavior (though we are still

sending her to her room to calm down and still taking her straight

home if she is " fighting " us) . . . I do think there is a definite

connection to the arthritis. Obviously, that doesn't make the

behavior OK.

I think what I mostly needed to know was that this is normal for some

other kids going through this and that I'm not the only one spending

my days fretting about arthritis and its' troubles and attempting to

parent a child that is obviously upset by it. It is easy to feel

isolated from other parents that do not have this sort of thing going

on . . . they genuinely look at her and think she is totally fine. I

can't believe the number of people that say to me, " she looks good. "

I know they mean well, but I then feel compelled to tell them her

recent troubles . . .

It is very nice to be able to talk with you. I've appreciated being

able to vent without someone thinking I'm making excuses for my

child.

Thanks for your honesty and support.

Becky (Abby, pauci-5)

>

> Hi Becky,

> I am sorry to hear of the struggle you have been having.? It is

very hard with such a young child to be supportive without giving

them an excuse for bad behavior.? I saw similar changes?- that

actually became quite extreme with my son when he was 4.? At the time

he was on a very high dose of steriods - which accounted for the mood

swings, but I knew I had to take a strong step when my wonderfully

sweet little boy became angry and aggressive to the point of

violence; hitting, kicking and screaming at me - and throwing

things.? I contacted his pediatrician and we ended up with a

psychology consult for " play therapy " .? We had weekly visits for 10

weeks.? During this time period we were also tapering the steriod

dose, so the combination worked wonders.? Prior to his first appt

with the child psychologist I had already done two things. He was at

his worst one night, and as long as he continued the behavior, I

emptied his room of all his toys, his fancy curtains, blankets, etc

and his clothes that had any cartoon characters on them, as well as

the pictures on the walls.? He later told a friend that all he had

left was books and his bed and " blank " clothes and bed covers.? He

later earned everything back - but it took time.? I also talked to

him the next day when things were calmer.? At that age he was totally

into Batman, so the conversation went something like this:

> Me: I think we need to talk about the way you have been acting.?

You have been watching a lot of Batman and Power Rangers on TV,

haven't you?

> Robbie: I like Batman and Power Rangers

> Me: Yes, I know, but I think that there is too much fighting on

these shows. I think that maybe you don't understand when it is ok to

fight, when it isn't and that the TV shows aren't real.

> Robbie: I don't like to fight.

> Me:? Well, I didn't think so, but lately I am not so sure.? Who do

Batman and the Power Rangers fight?

> Robbie: (at 4) Cwiminals

> Me: Are you a criminal?

> Robbie: NO

> Me: Am I a criminal?

> Robbie: No, (laughing)

> Me: Well, then, since there are no criminals in this house there

should be no hitting no yelling, no kicking and no throwing things.

> Robbie: (starting to cry) I know.

> Me: Robbie, I know that you don't understand why you feel angry and

upset sometimes, and I know that you can't control how you feel.?

But, you can control what you do & how you show those feelings.? You

can tell me how you feel, without yelling at me.? You can go to your

room if you feel mad or sad and you can hit your pillow, or throw it,

but you cannot hit me, you cannot hit anyone just because you feel

bad, that is wrong.? You cannot yell at me because you feel bad -

that is also wrong.

> Robbie:Ok.? When do I get my toys and my Batman shirts back?

> Me:? When you earn them back.? Everyday if we have more good

behavior than bad, you will get something back in your room. And for

now, you can still watch your shows, but if I see anymore bad

bahavior like last night, there will be no tv.

> Robbie: ok Mommy.

> Me: And one more thing, (And I pointed my finger at him to get his

attention) I know how much you love Batman, but I'll tell you

something about Batman

> Robbie: What?

> Me: Batman would never hit his Mother, and he wouldn't like anyone

who did.

> At that Robbie told me he was sorry, began crying and hugged me.?

>

> The psychologist backed up what I had already done and recommended

a book on behavior modification.? 's acting out only occurred

with me - though he did have one moment of " shortness " with a fellow

kindergardner the next year & the teacher and I had alreadyspoken and

I had ?warned of possible mood swings due to the medication changes

he was having at the time.? She put him in timeout as she would any

other child - and told me she felt bad because the behavior was so

unlike him, but I assured he that she had done the right thing,?

Showing compassion and understanding for the feelings they can't

control is very important, but at that young age they are learning to

deal with these emotions - even healthy kids at that age experience

mood swings (though generally not as extreme) and learned behavior is

learned behavior.? They are learning now how to deal with the

struggles that life brings down the road - and we must teach them

coping techniques that work, that are acceptable and that don't harm

others.? Granted, our children seem to learn these lessons - like

everything else - much earlier and it is very tough to maintain the

consistency and the discipline when we know that they are hurting.? I

wasn't always able to do so myself, but I did manage to teach him

something because I have no real discipline problems with .?

>

> I do realize, of course that we embarking on the middle school

years, and life can change at any moment.? : )?? But, I remember

thinking, curled up trying to protect myself from my 4 year old

kicking me " If I can't gain control of this now, what will I do when

he is 14? "

>

> I know this is beyond what you have described with your daughter,

and since she isn't cuirrently taking steriods, it doesn't sound like

it will get to that point, but I thought I would share my story to

let you know that many have experienced this at a variety of levels.?

Depression can certainly be behind these issues, as JRA has taken

things from her.? Only you can tell if she may need more help in

learning to cope with these feelings.? You may want to talk to the

pediatrician.? began having " accidents " - during this time

period as well, but only during the night.? That improved with the

lower steriod dose and following the counselling as well.

>

> Again, please don't take this the wrong way.? I don't often speak

up when parents discuss this issue on here, because once when I did,

one parent became very angry at me and seemed to feel that I was

criticizing her parenting - which certainly wasn't my intent.? So, I

hope you find this helpful - it is difficult to find that balance.?

It is also hard at times to figure out what is from the arthritis,

and what is just the?child testing the limits.

>

> Just one more thing to?add - that I thought was funny.? My son

loves to watch?Super Nanny -?I'm not sure why & I tease him sometimes

that I will call her if he doesn't do something about his messy

room.? Anyway, we were watching one episode not too long ago & ?there

was a boy that was behaving quite badly, hitting and kicking a

sibling and throwing things.? said " that boy is lucky he

doesn't?live here " and when I asked him why, he?told me " because he

wouldn't?have anything left in his room. " -?I couldn't believe it -?

he was 4!? And 6 years later, he remembers.

>

> Good luck,

> Val

> Rob's Mom (10, systemic)

>

>

>

>

>

>

>

>

>

>

>

> Hello,

>

> I have posted before and always appreciated your answers and

> feedback. I mostly read once in awhile and check in, because so

many

> times it is difficult for me to read about the troubles everyone is

> going through! I hope that you will think about the things going on

> at my house and see if you have any thoughts or ideas. We are

really

> struggling again.

>

> My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

> in September of 2006. We started initial treatment with lots of PT

> and naprosyn twice daily. At first, we did see improvement, but

> eventually her right knee was more swollen again. So, we started

> Enbrel in September of 2007. This was a miracle for about 5

> months . . . then we started in again with swelling and pain (or

what

> I assume is pain, because she never tells me anything). I would

> guess that technically we have never had a point where her knee

> was " under control. "

>

> We increased her Naprosyn and are still not seeing huge results. In

> addition to this, we had to skip a shot about three weeks ago,

> because she was sick and on antibiotics. Some days are better than

> others, obviously; her knee really doesn't look " terrible, " but I

> sense that it is bothering her for this reason: every time she is

> hurting, she has a huge behavior change. She gets extremely upset

> with her family members (mostly me) and lashes out at us . . . It

> seems that this does correlate with her knee feeling worse, but I

> certainly have no solid proof. I'm so frustrated because I want to

> help her, but I'm not finding anything that works. I can't let her

> behave this way, but, yet, if she is in pain - - how awful!

>

> My daughter does not stop hopping, skipping . . . all day long. She

> does this when we are out, or at preschool, . . . to the point that

> most people think she is totally fine. Then, when we get home or on

> the way home, it all comes out. I'm trying to work with her to

> notice that the more she does, the more she hurts, but I'm not

having

> success with this. I understand that to her, she has mostly felt

> this way all of her life and doesn't know any differently, but I do

> want her to learn to express her pain in other ways (if that is

truly

> what it is).

>

> In addition to this, we've gone through times during her treatment

> (especially right after she was diagnosed and when we started

Enbrel)

> that she was having accidents. I do not really think it is that she

> is hurting too much to get up to make it to the restroom, because

she

> is very mobile, as I mentioned. I'm not sure what it could be

> related to. I've been assured many times that it can't be the

> medicine and we've had points on the medicine where this wasn't the

> case, so that does seem to be accurate. I've sometimes thought it

is

> related to a flare coming on or in progress, but as I've said, her

> knee doesn't look " terrible. " It is swollen a bit again, but not

> dramatically hot or swollen. She has had previous UTIs, also, but I

> do not think that is what is going on this time (no fever and she

> doesn't seem sick today).

>

> Anyway, I'm wondering are these things typical, or should I be

> concerned that something else is going on with her? How did you get

> your kids to tell you when they were in pain? I want to assume that

> this is all related to her JRA, but could I be wrong? Do your

> children get tired easily? Could this be part of what is going on?

> We try to keep her at home as much as possible (to give her lots of

> down time, but also keeping her out of crowds during " sick " season,

> because of the Enbrel). Should I do this more?

>

> Again, any thoughts or ideas would be appreciated. I'm struggling

> with knowing what to do with her. It is difficult to take the brunt

> of her behavior nearly every day (for about two months now) and to

> struggle, too, with knowing what is causing it . . . Thanks for

your

> thoughts.

>

> Becky

>

>

>

>

>

>

>

[Guest guest]

Thank-you very much for your message. I can't believe how similar

our daughters sound (except that I can't say mine is shy!).

We, too, are trying to stick to a pretty easy routine, though I'm

worried about Kindergarten next year. We have worked diligently this

year to cut back activities and to hang out at home more; it is

actually good for all of us! We send Abby to calm down, as well. I

just found a terrific book that is called, " When I'm Bombaloo " which

talks about a little girl who gets angry and turns into " Bombaloo. "

After she calms down, she hugs her mom and knows that her mom loved

her all along . . . very good for us. Maybe you'd like it, too?

I've been so thankful today knowing that there are other people that

are going through the same things that we are at our house. We want

very much to teach her appropriate behavior and have worked very hard

to do this! It seems crazy to me to see her act this way, but I'm

truly believing there is a connection to her pain/flares/arthritis?

and her behavior. As I've mentioned in another post, she had NO

behavior problems when the Enbrel started working until late

January. So, I have to assume something with her has changed.

Again, not that this is an excuse to misbehave, but I do believe that

it signals something.

I'm so relieved to hear about your daughter's accidents, too. That

is exactly what Abby says when it happens to her, too. I've never

known what to think. She has had plenty of tests, also; they find

nothing wrong. I'm sorry that you have to go through all of this,

too, of course.

I can't tell you how much I appreciate knowing there is another

family like ours out there. Thanks for responding today . . . it

means a lot to me . . .

Becky (Abby pauci - - 5)

> >

> > Hello,

> >

> > I have posted before and always appreciated your answers and

> > feedback. I mostly read once in awhile and check in, because so

> many

> > times it is difficult for me to read about the troubles everyone

is

> > going through! I hope that you will think about the things going

> on

> > at my house and see if you have any thoughts or ideas. We are

> really

> > struggling again.

> >

> > My daughter is 5; diagnosed pauci-JRA (only seen in her right

knee)

> > in September of 2006. We started initial treatment with lots of

PT

> > and naprosyn twice daily. At first, we did see improvement, but

> > eventually her right knee was more swollen again. So, we started

> > Enbrel in September of 2007. This was a miracle for about 5

> > months . . . then we started in again with swelling and pain (or

> what

> > I assume is pain, because she never tells me anything). I would

> > guess that technically we have never had a point where her knee

> > was " under control. "

> >

> > We increased her Naprosyn and are still not seeing huge

results.

> In

> > addition to this, we had to skip a shot about three weeks ago,

> > because she was sick and on antibiotics. Some days are better

than

> > others, obviously; her knee really doesn't look " terrible, " but I

> > sense that it is bothering her for this reason: every time she

is

> > hurting, she has a huge behavior change. She gets extremely

upset

> > with her family members (mostly me) and lashes out at us . . . It

> > seems that this does correlate with her knee feeling worse, but I

> > certainly have no solid proof. I'm so frustrated because I want

to

> > help her, but I'm not finding anything that works. I can't let

her

> > behave this way, but, yet, if she is in pain - - how awful!

> >

> > My daughter does not stop hopping, skipping . . . all day long.

> She

> > does this when we are out, or at preschool, . . . to the point

that

> > most people think she is totally fine. Then, when we get home or

> on

> > the way home, it all comes out. I'm trying to work with her to

> > notice that the more she does, the more she hurts, but I'm not

> having

> > success with this. I understand that to her, she has mostly felt

> > this way all of her life and doesn't know any differently, but I

do

> > want her to learn to express her pain in other ways (if that is

> truly

> > what it is).

> >

> > In addition to this, we've gone through times during her

treatment

> > (especially right after she was diagnosed and when we started

> Enbrel)

> > that she was having accidents. I do not really think it is that

> she

> > is hurting too much to get up to make it to the restroom, because

> she

> > is very mobile, as I mentioned. I'm not sure what it could be

> > related to. I've been assured many times that it can't be the

> > medicine and we've had points on the medicine where this wasn't

the

> > case, so that does seem to be accurate. I've sometimes thought

it

> is

> > related to a flare coming on or in progress, but as I've said,

her

> > knee doesn't look " terrible. " It is swollen a bit again, but not

> > dramatically hot or swollen. She has had previous UTIs, also,

but

> I

> > do not think that is what is going on this time (no fever and she

> > doesn't seem sick today).

> >

> > Anyway, I'm wondering are these things typical, or should I be

> > concerned that something else is going on with her? How did you

> get

> > your kids to tell you when they were in pain? I want to assume

> that

> > this is all related to her JRA, but could I be wrong? Do your

> > children get tired easily? Could this be part of what is going

> on?

> > We try to keep her at home as much as possible (to give her lots

of

> > down time, but also keeping her out of crowds during " sick "

season,

> > because of the Enbrel). Should I do this more?

> >

> > Again, any thoughts or ideas would be appreciated. I'm

struggling

> > with knowing what to do with her. It is difficult to take the

> brunt

> > of her behavior nearly every day (for about two months now) and

to

> > struggle, too, with knowing what is causing it . . . Thanks for

> your

> > thoughts.

> >

> > Becky

> >

>

[Guest guest]

Hi,

Thanks for your response. I appreciate knowing there are others out

there going through the same things as we are . . . it all makes

sense that anyone would be upset if they were in pain!

My understanding with MTX was that Enbrel was a step up from

it . . .our pedi rheumy felt that it was better suited to fighting

the arthritis. She has also said that a steroid shot might work for

awhile, but most likely our daughter would need further treatment

beyond the naprosyn anyway, so we went with Enbrel.

I have read Dr. Lehman's book (I very much appreciate your

recommendation). I'm currently re-reading it and wondering how my

daughter could have pauci-articular if it didn't respond to

naprosyn . . . he makes it seem that it should have and otherwise,

might be something else?? Any thoughts on this would be helpful,

too! Your son is pauci, too . . . but has had to take further meds.

What is your opinion?

Thanks again,

Becky

>

> HI

> You could be describing my son- except he's 11! He acts fine most

of the

> time around other people. We are all usually the ones that get the

brunt

> of his grouchiness. I will say that he was the worst with emotional

> highs and lows when on enbrel. I think it was because the level of

> enbrel did not stay consistant in his body. I think a lot of us

face the

> problem of our kids looking fine to the general population- no one

else

> sees the tears or the frustration that they let out at home. These

kids

> do also get tired more easily than other kids. I think chronic

pain in

> and of itself is a draining thing. When I'm tired and in pain, I

can be

> pretty grouchy too! Could you add an extra nap in her day or even

a 30

> minute rest when she gets home from preschool or something?

> The face idea is a good one especially for a young child. I also

had a

> PT friend of mine say to give our son a drawing of a body and have

him

> color where it hurts. A lot of people are telling you to check out

mtx-

> that is methotrexate and is a disease modifying drug- like a chemo

drug

> that checks any cells that are multiplying fast (like cancer cells

or in

> this case RA cells that are attacking joints) That is a great

idea.

> Also the idea of joint injections is also a good option if she has

no

> other joints involved. They tried this with my son at one time,

but it

> was not a huge success. Some people though have wonderful success

with

> joint injections. Are you seeing a pediatric rheumatologist? You

said

> that you posted earlier -so this may have been mentioned already,

but

> Lehman (pediatric rheumy) wrote a book called, " It's not just

> Growing Pains. " It is an excellent resource that explains a lot of

> different things. You may know all this- if it's redundant, I'm

sorry.

> Jinny (11 pauci)

>

>

> On Mon, 24 Mar 2008 13:28:42 -0000 " jmm942000 " <jmm942000@...>

> writes:

> > Hello,

> >

> > I have posted before and always appreciated your answers and

> > feedback. I mostly read once in awhile and check in, because so

> > many

> > times it is difficult for me to read about the troubles everyone

is

> >

> > going through! I hope that you will think about the things going

on

> >

> > at my house and see if you have any thoughts or ideas. We are

> > really

> > struggling again.

> >

> > My daughter is 5; diagnosed pauci-JRA (only seen in her right

knee)

> >

> > in September of 2006. We started initial treatment with lots of

PT

> >

> > and naprosyn twice daily. At first, we did see improvement, but

> > eventually her right knee was more swollen again. So, we started

> > Enbrel in September of 2007. This was a miracle for about 5

> > months . . . then we started in again with swelling and pain (or

> > what

> > I assume is pain, because she never tells me anything). I would

> > guess that technically we have never had a point where her knee

> > was " under control. "

> >

> > We increased her Naprosyn and are still not seeing huge

results.

> > In

> > addition to this, we had to skip a shot about three weeks ago,

> > because she was sick and on antibiotics. Some days are better

than

> > others, obviously; her knee really doesn't look " terrible, " but I

> > sense that it is bothering her for this reason: every time she

is

> > hurting, she has a huge behavior change. She gets extremely

upset

> > with her family members (mostly me) and lashes out at us . . . It

> > seems that this does correlate with her knee feeling worse, but I

> > certainly have no solid proof. I'm so frustrated because I want

to

> >

> > help her, but I'm not finding anything that works. I can't let

her

> >

> > behave this way, but, yet, if she is in pain - - how awful!

> >

> > My daughter does not stop hopping, skipping . . . all day long.

She

> >

> > does this when we are out, or at preschool, . . . to the point

that

> > most people think she is totally fine. Then, when we get home or

on

> >

> > the way home, it all comes out. I'm trying to work with her to

> > notice that the more she does, the more she hurts, but I'm not

> > having

> > success with this. I understand that to her, she has mostly felt

> > this way all of her life and doesn't know any differently, but I

do

> >

> > want her to learn to express her pain in other ways (if that is

> > truly

> > what it is).

> >

> > In addition to this, we've gone through times during her

treatment

> > (especially right after she was diagnosed and when we started

> > Enbrel)

> > that she was having accidents. I do not really think it is that

she

> >

> > is hurting too much to get up to make it to the restroom, because

> > she

> > is very mobile, as I mentioned. I'm not sure what it could be

> > related to. I've been assured many times that it can't be the

> > medicine and we've had points on the medicine where this wasn't

the

> >

> > case, so that does seem to be accurate. I've sometimes thought

it

> > is

> > related to a flare coming on or in progress, but as I've said,

her

> > knee doesn't look " terrible. " It is swollen a bit again, but not

> > dramatically hot or swollen. She has had previous UTIs, also,

but I

> >

> > do not think that is what is going on this time (no fever and she

> > doesn't seem sick today).

> >

> > Anyway, I'm wondering are these things typical, or should I be

> > concerned that something else is going on with her? How did you

get

> >

> > your kids to tell you when they were in pain? I want to assume

that

> >

> > this is all related to her JRA, but could I be wrong? Do your

> > children get tired easily? Could this be part of what is going

on?

> >

> > We try to keep her at home as much as possible (to give her lots

of

> >

> > down time, but also keeping her out of crowds during " sick "

season,

> >

> > because of the Enbrel). Should I do this more?

> >

> > Again, any thoughts or ideas would be appreciated. I'm

struggling

> > with knowing what to do with her. It is difficult to take the

brunt

> >

> > of her behavior nearly every day (for about two months now) and

to

> > struggle, too, with knowing what is causing it . . . Thanks for

your

> >

> > thoughts.

> >

> > Becky

> >

> >

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

> >

> >

[Guest guest]

I don't know if he's good to compare to for typical pauci- we're in the

middle of trying to figure out if we've had the correct diagnosis all

along or not.

Our nurse practitioner explained the drugs to me in a tier.

The NSAIDS (naproxen, ketoprofen, ibuprofen, aspirin, etc) are daily anti

inflammatory meds - in and out of your system pretty quickly-

The disease modifiers (like methotrexate, arava etc.) keep the disease

itself in check- keep the quickly multiplying cells down-

The TNF- alpha blockers (or biologic drugs) (such as enbrel, remicade,

humira, kineret etc.) stop a cascade effect of inflammation so that the

disease modifiers are able to work.-

I think- but am not positive- that most studies done on TNF- alpha

blockers were done with the patient also on methotrexate or another

disease modifier- but mostly methotrexate.

There are many other drugs and classes of drugs used for JRA- these are

just the three classes that we were using at the time and it all made

sense to me.

I don't know if I'm correct on all this- this is just how I understood it

when she explained it to me. It does help me to look at the drugs by

their classification to not be overwhelmed with yet another med.

Don't know if this helps any.

This group has been a huge help and encouragement to me

It helps so much just to know that some things are just " normal " for

these kids and that I'm not alone!!

Jinny ( 11, pauci)

On Tue, 25 Mar 2008 23:24:59 -0000 " jmm942000 " <jmm942000@...>

writes:

> Hi,

>

> Thanks for your response. I appreciate knowing there are others out

>

> there going through the same things as we are . . . it all makes

> sense that anyone would be upset if they were in pain!

>

> My understanding with MTX was that Enbrel was a step up from

> it . . .our pedi rheumy felt that it was better suited to fighting

> the arthritis. She has also said that a steroid shot might work for

>

> awhile, but most likely our daughter would need further treatment

> beyond the naprosyn anyway, so we went with Enbrel.

>

> I have read Dr. Lehman's book (I very much appreciate your

> recommendation). I'm currently re-reading it and wondering how my

> daughter could have pauci-articular if it didn't respond to

> naprosyn . . . he makes it seem that it should have and otherwise,

> might be something else?? Any thoughts on this would be helpful,

> too! Your son is pauci, too . . . but has had to take further meds.

>

> What is your opinion?

>

> Thanks again,

>

> Becky

>

>

>

> >

> > HI

> > You could be describing my son- except he's 11! He acts fine most

>

> of the

> > time around other people. We are all usually the ones that get

> the

> brunt

> > of his grouchiness. I will say that he was the worst with

> emotional

> > highs and lows when on enbrel. I think it was because the level

> of

> > enbrel did not stay consistant in his body. I think a lot of us

> face the

> > problem of our kids looking fine to the general population- no one

>

> else

> > sees the tears or the frustration that they let out at home.

> These

> kids

> > do also get tired more easily than other kids. I think chronic

> pain in

> > and of itself is a draining thing. When I'm tired and in pain, I

>

> can be

> > pretty grouchy too! Could you add an extra nap in her day or even

>

> a 30

> > minute rest when she gets home from preschool or something?

> > The face idea is a good one especially for a young child. I also

>

> had a

> > PT friend of mine say to give our son a drawing of a body and have

>

> him

> > color where it hurts. A lot of people are telling you to check

> out

> mtx-

> > that is methotrexate and is a disease modifying drug- like a chemo

>

> drug

> > that checks any cells that are multiplying fast (like cancer cells

>

> or in

> > this case RA cells that are attacking joints) That is a great

> idea.

> > Also the idea of joint injections is also a good option if she has

>

> no

> > other joints involved. They tried this with my son at one time,

> but it

> > was not a huge success. Some people though have wonderful success

>

> with

> > joint injections. Are you seeing a pediatric rheumatologist? You

>

> said

> > that you posted earlier -so this may have been mentioned already,

>

> but

> > Lehman (pediatric rheumy) wrote a book called, " It's not

> just

> > Growing Pains. " It is an excellent resource that explains a lot

> of

> > different things. You may know all this- if it's redundant, I'm

> sorry.

> > Jinny (11 pauci)

> >

> >

> > On Mon, 24 Mar 2008 13:28:42 -0000 " jmm942000 " <jmm942000@...>

> > writes:

> > > Hello,

> > >

> > > I have posted before and always appreciated your answers and

> > > feedback. I mostly read once in awhile and check in, because so

>

> > > many

> > > times it is difficult for me to read about the troubles everyone

>

> is

> > >

> > > going through! I hope that you will think about the things

> going

> on

> > >

> > > at my house and see if you have any thoughts or ideas. We are

> > > really

> > > struggling again.

> > >

> > > My daughter is 5; diagnosed pauci-JRA (only seen in her right

> knee)

> > >

> > > in September of 2006. We started initial treatment with lots of

>

> PT

> > >

> > > and naprosyn twice daily. At first, we did see improvement, but

>

> > > eventually her right knee was more swollen again. So, we

> started

> > > Enbrel in September of 2007. This was a miracle for about 5

> > > months . . . then we started in again with swelling and pain (or

>

> > > what

> > > I assume is pain, because she never tells me anything). I would

>

> > > guess that technically we have never had a point where her knee

>

> > > was " under control. "

> > >

> > > We increased her Naprosyn and are still not seeing huge

> results.

> > > In

> > > addition to this, we had to skip a shot about three weeks ago,

> > > because she was sick and on antibiotics. Some days are better

> than

> > > others, obviously; her knee really doesn't look " terrible, " but

> I

> > > sense that it is bothering her for this reason: every time she

>

> is

> > > hurting, she has a huge behavior change. She gets extremely

> upset

> > > with her family members (mostly me) and lashes out at us . . .

> It

> > > seems that this does correlate with her knee feeling worse, but

> I

> > > certainly have no solid proof. I'm so frustrated because I want

>

> to

> > >

> > > help her, but I'm not finding anything that works. I can't let

>

> her

> > >

> > > behave this way, but, yet, if she is in pain - - how awful!

> > >

> > > My daughter does not stop hopping, skipping . . . all day long.

>

> She

> > >

> > > does this when we are out, or at preschool, . . . to the point

> that

> > > most people think she is totally fine. Then, when we get home

> or

> on

> > >

> > > the way home, it all comes out. I'm trying to work with her to

>

> > > notice that the more she does, the more she hurts, but I'm not

> > > having

> > > success with this. I understand that to her, she has mostly

> felt

> > > this way all of her life and doesn't know any differently, but I

>

> do

> > >

> > > want her to learn to express her pain in other ways (if that is

>

> > > truly

> > > what it is).

> > >

> > > In addition to this, we've gone through times during her

> treatment

> > > (especially right after she was diagnosed and when we started

> > > Enbrel)

> > > that she was having accidents. I do not really think it is that

>

> she

> > >

> > > is hurting too much to get up to make it to the restroom,

> because

> > > she

> > > is very mobile, as I mentioned. I'm not sure what it could be

> > > related to. I've been assured many times that it can't be the

> > > medicine and we've had points on the medicine where this wasn't

>

> the

> > >

> > > case, so that does seem to be accurate. I've sometimes thought

>

> it

> > > is

> > > related to a flare coming on or in progress, but as I've said,

> her

> > > knee doesn't look " terrible. " It is swollen a bit again, but

> not

> > > dramatically hot or swollen. She has had previous UTIs, also,

> but I

> > >

> > > do not think that is what is going on this time (no fever and

> she

> > > doesn't seem sick today).

> > >

> > > Anyway, I'm wondering are these things typical, or should I be

> > > concerned that something else is going on with her? How did you

>

> get

> > >

> > > your kids to tell you when they were in pain? I want to assume

>

> that

> > >

> > > this is all related to her JRA, but could I be wrong? Do your

> > > children get tired easily? Could this be part of what is going

>

> on?

> > >

> > > We try to keep her at home as much as possible (to give her lots

>

> of

> > >

> > > down time, but also keeping her out of crowds during " sick "

> ason,

> > >

> > > because of the Enbrel). Should I do this more?

> > >

> > > Again, any thoughts or ideas would be appreciated. I'm

> struggling

> > > with knowing what to do with her. It is difficult to take the

> brunt

> > >

> > > of her behavior nearly every day (for about two months now) and

>

> to

> > > struggle, too, with knowing what is causing it . . . Thanks for

>

> your

> > >

> > > thoughts.

> > >

> > > Becky

> > >

> > >

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

> > >

> > >

[Guest guest]

Hi Everyone,

Just felt I had to respond to this post from Val ... because, as usual, she is

so eloquent, well-spoken, thoughtful, and truly helpful. Not just Val, of course

: ) It really warms my heart that so many of the people who gather here are such

truly outstanding individuals! So I wanted to say thank you, to everyone, for

their contributions. When we take the time to share a little about issues that

we've had personal experience with, some words of wisdom, it sometimes can

really help make a positive difference for others facing a similar situation.

So thank you, all, for caring enough to share : )

On another note, my kids and I watch Super Nanny together too. We're just amazed

sometimes at the level of dysfunction that seems to be prevailing in some of

these outwardly-appearing 'typical' families! It makes us feel good about our

family dynamics. Granted, I've got only two children and some of those families

have way more but I've been a single parent for years and we've got the chronic

health issue tossed in and still ... we've made it work relatively well : )

Setting clear limits and providing stability and consistency are so important

for our children ... and for the mental health and well-being of parents too!

Much Aloha,

Georgina

Re: 5 year old with JRA . . . more questions

Hi Becky,

I am sorry to hear of the struggle you have been having.? It is very hard with

such a young child to be supportive without giving them an excuse for bad

behavior.? I saw similar changes?- that actually became quite extreme with my

son when he was 4.? At the time he was on a very high dose of steriods - which

accounted for the mood swings, but I knew I had to take a strong step when my

wonderfully sweet little boy became angry and aggressive to the point of

violence; hitting, kicking and screaming at me - and throwing things.? I

contacted his pediatrician and we ended up with a psychology consult for " play

therapy " .? We had weekly visits for 10 weeks.? During this time period we were

also tapering the steriod dose, so the combination worked wonders.? Prior to his

first appt with the child psychologist I had already done two things. He was at

his worst one night, and as long as he continued the behavior, I emptied his

room of all his toys, his fancy curtains, blankets, etc an d his clothes that

had any cartoon characters on them, as well as the pictures on the walls.? He

later told a friend that all he had left was books and his bed and " blank "

clothes and bed covers.? He later earned everything back - but it took time.? I

also talked to him the next day when things were calmer.? At that age he was

totally into Batman, so the conversation went something like this:

Me: I think we need to talk about the way you have been acting.? You have been

watching a lot of Batman and Power Rangers on TV, haven't you?

Robbie: I like Batman and Power Rangers

Me: Yes, I know, but I think that there is too much fighting on these shows. I

think that maybe you don't understand when it is ok to fight, when it isn't and

that the TV shows aren't real.

Robbie: I don't like to fight.

Me:? Well, I didn't think so, but lately I am not so sure.? Who do Batman and

the Power Rangers fight?

Robbie: (at 4) Cwiminals

Me: Are you a criminal?

Robbie: NO

Me: Am I a criminal?

Robbie: No, (laughing)

Me: Well, then, since there are no criminals in this house there should be no

hitting no yelling, no kicking and no throwing things.

Robbie: (starting to cry) I know.

Me: Robbie, I know that you don't understand why you feel angry and upset

sometimes, and I know that you can't control how you feel.? But, you can control

what you do & how you show those feelings.? You can tell me how you feel,

without yelling at me.? You can go to your room if you feel mad or sad and you

can hit your pillow, or throw it, but you cannot hit me, you cannot hit anyone

just because you feel bad, that is wrong.? You cannot yell at me because you

feel bad - that is also wrong.

Robbie:Ok.? When do I get my toys and my Batman shirts back?

Me:? When you earn them back.? Everyday if we have more good behavior than

bad, you will get something back in your room. And for now, you can still watch

your shows, but if I see anymore bad bahavior like last night, there will be no

tv.

Robbie: ok Mommy.

Me: And one more thing, (And I pointed my finger at him to get his attention)

I know how much you love Batman, but I'll tell you something about Batman

Robbie: What?

Me: Batman would never hit his Mother, and he wouldn't like anyone who did.

At that Robbie told me he was sorry, began crying and hugged me.?

The psychologist backed up what I had already done and recommended a book on

behavior modification.? 's acting out only occurred with me - though he

did have one moment of " shortness " with a fellow kindergardner the next year &

the teacher and I had alreadyspoken and I had ?warned of possible mood swings

due to the medication changes he was having at the time.? She put him in timeout

as she would any other child - and told me she felt bad because the behavior was

so unlike him, but I assured he that she had done the right thing,? Showing

compassion and understanding for the feelings they can't control is very

important, but at that young age they are learning to deal with these emotions -

even healthy kids at that age experience mood swings (though generally not as

extreme) and learned behavior is learned behavior.? They are learning now how to

deal with the struggles that life brings down the road - and we must teach them

coping techniques that work, that ar e acceptable and that don't harm others.?

Granted, our children seem to learn these lessons - like everything else - much

earlier and it is very tough to maintain the consistency and the discipline when

we know that they are hurting.? I wasn't always able to do so myself, but I did

manage to teach him something because I have no real discipline problems with

.?

I do realize, of course that we embarking on the middle school years, and life

can change at any moment.? : )?? But, I remember thinking, curled up trying to

protect myself from my 4 year old kicking me " If I can't gain control of this

now, what will I do when he is 14? "

I know this is beyond what you have described with your daughter, and since

she isn't cuirrently taking steriods, it doesn't sound like it will get to that

point, but I thought I would share my story to let you know that many have

experienced this at a variety of levels.? Depression can certainly be behind

these issues, as JRA has taken things from her.? Only you can tell if she may

need more help in learning to cope with these feelings.? You may want to talk to

the pediatrician.? began having " accidents " - during this time period as

well, but only during the night.? That improved with the lower steriod dose and

following the counselling as well.

Again, please don't take this the wrong way.? I don't often speak up when

parents discuss this issue on here, because once when I did, one parent became

very angry at me and seemed to feel that I was criticizing her parenting - which

certainly wasn't my intent.? So, I hope you find this helpful - it is difficult

to find that balance.? It is also hard at times to figure out what is from the

arthritis, and what is just the?child testing the limits.

Just one more thing to?add - that I thought was funny.? My son loves to

watch?Super Nanny -?I'm not sure why & I tease him sometimes that I will call

her if he doesn't do something about his messy room.? Anyway, we were watching

one episode not too long ago & ?there was a boy that was behaving quite badly,

hitting and kicking a sibling and throwing things.? said " that boy is

lucky he doesn't?live here " and when I asked him why, he?told me " because he

wouldn't?have anything left in his room. " -?I couldn't believe it -?he was 4!?

And 6 years later, he remembers.

Good luck,

Val

Rob's Mom (10, systemic)

Hello,

I have posted before and always appreciated your answers and

feedback. I mostly read once in awhile and check in, because so many

times it is difficult for me to read about the troubles everyone is

going through! I hope that you will think about the things going on

at my house and see if you have any thoughts or ideas. We are really

struggling again.

My daughter is 5; diagnosed pauci-JRA (only seen in her right knee)

in September of 2006. We started initial treatment with lots of PT

and naprosyn twice daily. At first, we did see improvement, but

eventually her right knee was more swollen again. So, we started

Enbrel in September of 2007. This was a miracle for about 5

months . . . then we started in again with swelling and pain (or what

I assume is pain, because she never tells me anything). I would

guess that technically we have never had a point where her knee

was " under control. "

We increased her Naprosyn and are still not seeing huge results. In

addition to this, we had to skip a shot about three weeks ago,

because she was sick and on antibiotics. Some days are better than

others, obviously; her knee really doesn't look " terrible, " but I

sense that it is bothering her for this reason: every time she is

hurting, she has a huge behavior change. She gets extremely upset

with her family members (mostly me) and lashes out at us . . . It

seems that this does correlate with her knee feeling worse, but I

certainly have no solid proof. I'm so frustrated because I want to

help her, but I'm not finding anything that works. I can't let her

behave this way, but, yet, if she is in pain - - how awful!

My daughter does not stop hopping, skipping . . . all day long. She

does this when we are out, or at preschool, . . . to the point that

most people think she is totally fine. Then, when we get home or on

the way home, it all comes out. I'm trying to work with her to

notice that the more she does, the more she hurts, but I'm not having

success with this. I understand that to her, she has mostly felt

this way all of her life and doesn't know any differently, but I do

want her to learn to express her pain in other ways (if that is truly

what it is).

In addition to this, we've gone through times during her treatment

(especially right after she was diagnosed and when we started Enbrel)

that she was having accidents. I do not really think it is that she

is hurting too much to get up to make it to the restroom, because she

is very mobile, as I mentioned. I'm not sure what it could be

related to. I've been assured many times that it can't be the

medicine and we've had points on the medicine where this wasn't the

case, so that does seem to be accurate. I've sometimes thought it is

related to a flare coming on or in progress, but as I've said, her

knee doesn't look " terrible. " It is swollen a bit again, but not

dramatically hot or swollen. She has had previous UTIs, also, but I

do not think that is what is going on this time (no fever and she

doesn't seem sick today).

Anyway, I'm wondering are these things typical, or should I be

concerned that something else is going on with her? How did you get

your kids to tell you when they were in pain? I want to assume that

this is all related to her JRA, but could I be wrong? Do your

children get tired easily? Could this be part of what is going on?

We try to keep her at home as much as possible (to give her lots of

down time, but also keeping her out of crowds during " sick " season,

because of the Enbrel). Should I do this more?

Again, any thoughts or ideas would be appreciated. I'm struggling

with knowing what to do with her. It is difficult to take the brunt

of her behavior nearly every day (for about two months now) and to

struggle, too, with knowing what is causing it . . . Thanks for your

thoughts.

Becky