Re: A little update on Liberty

[Guest guest]

Lorie Jo,

My daughter also gets " wicked " while on Prednisone. We sometimes call her

" The Excorcist Child " . I know that sounds horrible, but we sometimes just

wait for her head to spin around.

Anyway, our Ped. Rheumatologist prescribed Hydroxyzine, which is actually a

prescription antihistamine, but it is also a mild sedative. When given in

combination with the Prednisone, it really does help to calm her and make

her more bearable. And mood swings are definitely a side effect of this

nasty beast (Prednisone).

Good luck and here's hoping she gets better and better and doesn't have to

go back on it.

Angie,

Nacogdoches, TX

[Guest guest]

Lori,

The folic acid is to aid the liver in dealing with the mtx. It is an important addition to your childs meds. I have been told that without it there is a much higher chance that the liver counts will increase too high to continue on the mtx.

Christy

[Guest guest]

hello lorie..tabitha is on the folic acid..it is suppose to help fight the

side effects of medicines that is what i was told..but not sure..i do know

Tabitha has been on this since 89'.it has been along time and they still

have her on it. so i know it is important. you said that she is on mtx.

remicade..and you want the enbrel..isn't the remicade helping? tabitha was

on enbrel but it didn't seem to help that much with her arthritis(poly). but

remicade is great so far. when tabitha was 6..they started to put her on

predisone but took her off right away..thank god!she also had mood swings on

it..which my doctor told me that would happen.

good luck

karen (tabitha 16..poly)

From: LorieJo <loriejo@...>

Reply-

Subject: A little update on Liberty

Date: Sun, 30 Sep 2001 03:25:33 -0500

First of all, hello group. )

I wanted to tell you all that Lil-bee, has been off of the prednisone for a

week now and all seems to be going fairly well. She is starting to complain

about a bit of pain/achy ness and I am a bit worried that we will have to

get her back on it.

I *SO* don't want to do that cause it really affects her behavior. Anyone

else have these kind of problems? It was not just moody behavior but more

like.. hmm, how do I say it?.. wickedness?. I know that is awful to say

about my daughter but she was down right MEAN while on prednisone. Sad thing

is that the doctor told me it wouldn't do that. Well, she is getting better

everyday since she has been off of it so I know what that tells me.

She is still on Metrx and remecade (sp?) and folic acid. I am also hoping

that we will get the Enbrel soon.

BTW, what does the folic acid do? I keep forgetting to give it to her as

often as prescribed so I keep wondering what she is missing out on when I do

that. Does anyone know?

It was just about 2 mos ago that the jra was so bad that she had lots of

problems moving and even breathing so I am very happy with the way things

are going and even though I got a lump in my throat every time I refilled

the prednisone, I am grateful for it.

I hope you are all well and hanging in there .

We pray for you all often.

blessings

Lorie B. libertysmom

Re: 's diagnosis still up in the air

Hi Sally,

Your son sounds a lot like my son Josh. We also had a very

difficult time trying to decrease his corticosteroids to any dose lower

than 10mgs. Well, we finally were able to. So there's hope that

and others like him will be able to as well

Aloha,

Georgina

sjames5165@... wrote:

>

> Hi

>

> My son is systemic JRA and has been for five years. The rash and

> fevers that started with this disease lasted for four months before

> diagnosis. Only when he was put on prednisolone did it settle down.

Even

> so, whenever we reduce his dose below 10mg per day he flares and the

whole

> kit and kaboodle starts all over again. He has the rashes, fever, loss

of

> appetite, dark circles under eyes etc. Also a flare can start if he

overdoes

> things, if he gets particularly upset about something or even over

excited

> about something. His joints did not start to swell and get painful until

six

> months into the illness. Does you son have any joint swelling? It

> definitely sounds like Stills to me and the sooner you get him on

treatment,

> the quicker its likely to go into remission. Some kids even grow out of

it

> altogether. Dont let it drag on.

> Sally

For links to websites about arthritis and JRA, visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Christy,

Thanks for that information. I didn't know that. Now I wonder what else mtrx may be doing. That is my biggest worry with the disease and how it is treated. I don't want to impair my childs body any further then it is already. It is so hard for me to think that I may be sacrificing a liver or kidney for moveable joints. I am thinking that others must have felt/feel the same way too.

Lorie B. libertysmom

-----Original Message-----From: gazelle34@... [mailto:gazelle34@...]Sent: Sunday, September 30, 2001 12:33 PM Subject: Re: A little update on Liberty

Lori, The folic acid is to aid the liver in dealing with the mtx. It is an important addition to your childs meds. I have been told that without it there is a much higher chance that the liver counts will increase too high to continue on the mtx. Christy For links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Lori,

I think your concerns about what the mtx may be doing are certainly justified. But try to remember that it really boils down to a quality of life issue for so many of our kids. When we tried to wean my daughter off of it 3 yrs ago, hoping to find that she was truly in remission, we saw within a month what the mtx meant to her life. She went from being a normal 1st grader to being like a little old lady. Just moving her little body was so painful. Other than that brief few weeks off the meds, my daughter has been on mtx since April 1995. As a mom I just do the best I can with what is available. And I pray that no matter what lies ahead, my daughter will always understand and appreciate that our goal was to give her the best life possible. I think that's all any of us can do.

Liz

From: LorieJo

Sent: Sunday, September 30, 2001 1:49 PM

Subject: RE: A little update on Liberty

Christy,

Thanks for that information. I didn't know that. Now I wonder what else mtrx may be doing. That is my biggest worry with the disease and how it is treated. I don't want to impair my childs body any further then it is already. It is so hard for me to think that I may be sacrificing a liver or kidney for moveable joints. I am thinking that others must have felt/feel the same way too.

Lorie B. libertysmom

-----Original Message-----From: gazelle34@... [mailto:gazelle34@...]Sent: Sunday, September 30, 2001 12:33 PM Subject: Re: A little update on Liberty

Lori, The folic acid is to aid the liver in dealing with the mtx. It is an important addition to your childs meds. I have been told that without it there is a much higher chance that the liver counts will increase too high to continue on the mtx. Christy For links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

hello again..lorie!

Tabitha has been on mtx. since 1990 and so far she is doing fine with it.

The doctors monitor her so they can catch anything that is going on. The

only thing that she didn't do well on regarding mtx..was injections..we

switched back to the pills and she is fine.

karen

From: LorieJo <loriejo@...>

Reply-

Subject: RE: A little update on Liberty

Date: Sun, 30 Sep 2001 12:49:58 -0500

Christy,

Thanks for that information. I didn't know that. Now I wonder what else

mtrx may be doing. That is my biggest worry with the disease and how it is

treated. I don't want to impair my childs body any further then it is

already. It is so hard for me to think that I may be sacrificing a liver or

kidney for moveable joints. I am thinking that others must have felt/feel

the same way too.

Lorie B. libertysmom

Re: A little update on Liberty

Lori,

The folic acid is to aid the liver in dealing with the mtx. It is an

important addition to your childs meds. I have been told that without it

there is a much higher chance that the liver counts will increase too high

to continue on the mtx.

Christy

[Guest guest]

hi group Tree here ! I just had to respond to the prednisone induced mood change issues. I took large doses of predisone from age 10 to around 18. So as you can imagine hormones were flying too! I actually could tell when my moods would swing because I had this uncontrollable feeling of being lost, and scared, like my skin wasn't my own or something inside just wasn't right. Then I would feel so irritable and mean as I have heard some of the mothers describe it. This took the form of screaming, crying, slamming doors, pinching siblings, you name it, The part that bothered me most though was a feeling of apathy, like I didn't care about anything or anyone, yet I could and would cry at the drop of a hat. I only use predisone these days as a last resort type of treatment ..a joint injection here or a medrol dose pack there but it only takes one dose to get in touch with those feelings again and I sure don't like it but can control it lots better as an adult. Luckily, all those changes seem to resolve themselves with discontinued use of prednisone ..not sure how long ...probably differs with everyone. So don't give your little ones too much grieve for their meanness but by all means do help them think about how they are feeling and try to help them understand what they don't realize is ok to feel ..just don't act on it !!!! KEEP SMILIN' :):)Tree:):):):) A little update on Liberty First of all, hello group. )I wanted to tell you all that Lil-bee, has been off of the prednisone for aweek now and all seems to be going fairly well. She is starting to complainabout a bit of pain/achy ness and I am a bit worried that we will have toget her back on it.I *SO* don't want to do that cause it really affects her behavior. Anyoneelse have these kind of problems? It was not just moody behavior but morelike.. hmm, how do I say it?.. wickedness?. I know that is awful to sayabout my daughter but she was down right MEAN while on prednisone. Sad thingis that the doctor told me it wouldn't do that. Well, she is getting bettereveryday since she has been off of it so I know what that tells me.She is still on Metrx and remecade (sp?) and folic acid. I am also hopingthat we will get the Enbrel soon.BTW, what does the folic acid do? I keep forgetting to give it to her asoften as prescribed so I keep wondering what she is missing out on when I dothat. Does anyone know?It was just about 2 mos ago that the jra was so bad that she had lots ofproblems moving and even breathing so I am very happy with the way thingsare going and even though I got a lump in my throat every time I refilledthe prednisone, I am grateful for it.I hope you are all well and hanging in there .We pray for you all often.blessingsLorie B. libertysmom-----Original Message-----From: Georgina [mailto:gmckin@...]Sent: Saturday, September 29, 2001 7:15 PM Subject: Re: 's diagnosis still up in the airHi Sally,Your son sounds a lot like my son Josh. We also had a verydifficult time trying to decrease his corticosteroids to any dose lowerthan 10mgs. Well, we finally were able to. So there's hope that and others like him will be able to as well :)Aloha,Georginasjames5165@... wrote:>> Hi>> My son is systemic JRA and has been for five years. The rash and> fevers that started with this disease lasted for four months before> diagnosis. Only when he was put on prednisolone did it settle down. Even> so, whenever we reduce his dose below 10mg per day he flares and the whole> kit and kaboodle starts all over again. He has the rashes, fever, loss of> appetite, dark circles under eyes etc. Also a flare can start if heoverdoes> things, if he gets particularly upset about something or even overexcited> about something. His joints did not start to swell and get painful untilsix> months into the illness. Does you son have any joint swelling? It> definitely sounds like Stills to me and the sooner you get him ontreatment,> the quicker its likely to go into remission. Some kids even grow out ofit> altogether. Dont let it drag on.> SallyFor links to websites about arthritis and JRA, visit:http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi!

My son Rob (4, systemic) is on 27mg Prednisolone daily - and I wouldn't say he's

wicked exactly - but I do say he has had some major behavioural changes. Some

may be just with frustration when he is unable to do things he normally can -

but he does have major mood swings, and everything is overblown - everything is

a tragedy. His feeling seem to be hurt so easy - if he thinks I am the

slightest bit irritated with him he cries and cries. He cries when he spills

something and gets nearly hysterical - even though I tell him we can clean it

up. He also angers easily, yells and throws things - which is atypical for him.

He is more aggressive - more rough play than before (a lot of that can be the

" boy " thing - and he is around more boys at school than he had been in his

previous daycare situation) - but it seems to exceed the way he played before.

His teacher told me that he " over-reacts " when one of the children touches him

(His arms, shoulders, etc.) He is a child that needs his " space " but I reminded

he

r that he is very sensitive to touch when he hurting - and that he may not be

over-reacting - it may actually hurt.

Well, I rambled more than I intended. Good luck staying off the steriods!

Val

Rob's Mom

In a message dated Sun, 30 Sep 2001 4:27:23 AM Eastern Daylight Time, LorieJo

<loriejo@...> writes:

> First of all, hello group. )

>

> I wanted to tell you all that Lil-bee, has been off of the prednisone for a

> week now and all seems to be going fairly well. She is starting to complain

> about a bit of pain/achy ness and I am a bit worried that we will have to

> get her back on it.

>

> I *SO* don't want to do that cause it really affects her behavior. Anyone

> else have these kind of problems? It was not just moody behavior but more

> like.. hmm, how do I say it?.. wickedness?. I know that is awful to say

> about my daughter but she was down right MEAN while on prednisone. Sad thing

> is that the doctor told me it wouldn't do that. Well, she is getting better

> everyday since she has been off of it so I know what that tells me.

>

> She is still on Metrx and remecade (sp?) and folic acid. I am also hoping

> that we will get the Enbrel soon.

>

> BTW, what does the folic acid do? I keep forgetting to give it to her as

> often as prescribed so I keep wondering what she is missing out on when I do

> that. Does anyone know?

>

> It was just about 2 mos ago that the jra was so bad that she had lots of

> problems moving and even breathing so I am very happy with the way things

> are going and even though I got a lump in my throat every time I refilled

> the prednisone, I am grateful for it.

>

> I hope you are all well and hanging in there .

> We pray for you all often.

>

> blessings

>

> Lorie B. libertysmom

>

>

>

> Re: 's diagnosis still up in the air

>

>

> Hi Sally,

>

> Your son sounds a lot like my son Josh. We also had a very

> difficult time trying to decrease his corticosteroids to any dose lower

> than 10mgs. Well, we finally were able to. So there's hope that

> and others like him will be able to as well

>

> Aloha,

> Georgina

>

> sjames5165@... wrote:

> >

> > Hi

> >

> > My son is systemic JRA and has been for five years. The rash and

> > fevers that started with this disease lasted for four months before

> > diagnosis. Only when he was put on prednisolone did it settle down. Even

> > so, whenever we reduce his dose below 10mg per day he flares and the whole

> > kit and kaboodle starts all over again. He has the rashes, fever, loss of

> > appetite, dark circles under eyes etc. Also a flare can start if he

> overdoes

> > things, if he gets particularly upset about something or even over

> excited

> > about something. His joints did not start to swell and get painful until

> six

> > months into the illness. Does you son have any joint swelling? It

> > definitely sounds like Stills to me and the sooner you get him on

> treatment,

> > the quicker its likely to go into remission. Some kids even grow out of

> it

> > altogether. Dont let it drag on.

> > Sally

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Very well said, Liz. I think the issue about the benefits versus the

possible risks of the meds, or the damage possible from the illness

itself when it stays active but is not treated aggressively enough, is

probably the most difficult issue for us parents to sort out. Sometimes

it feels like we're damned if we do, damned if we don't. Even if the

route we choose allows our child to have the best possible quality of

life when young, I still have some fears about what may happen down the

road. Will Josh second guess me, ask why I let them give him the meds he

took, why I made him take some of them, when he would have preferred not

to ... which may permanently affect his bone density, his growth

potential, his vision, maybe even his ability to have kids, etc etc.

This is one of my trials. Our trials. I hope we can work it out alright

and that when he's an adult we'll both be able to live with the

decisions that we made when he was a child.

Aloha,

Georgina

Liz wrote:

I think your concerns about what the mtx may be doing are certainly

justified. But try to remember that it really boils down to a quality of

life issue for so many of our kids. When we tried to wean my daughter

off of it 3 yrs ago, hoping to find that she was truly in remission, we

saw within a month what the mtx meant to her life. She went from being a

normal 1st grader to being like a little old lady. Just moving her

little body was so painful. Other than that brief few weeks off the

meds, my daughter has been on mtx since April 1995. As a mom I just do

the best I can with what is available. And I pray that no matter what

lies ahead, my daughter will always understand and appreciate that our

goal was to give her the best life possible. I think that's all any of

us can do.

Liz

[Guest guest]

never responded as well as we would have liked to the MTX, until

we switched to injections. Now, to compromise, we alternate between the

two and it still seems to work real well.

Aloha,

Georgina

karens tribe wrote:

>

> hello again..lorie!

> Tabitha has been on mtx. since 1990 and so far she is doing fine with it.

> The doctors monitor her so they can catch anything that is going on. The

> only thing that she didn't do well on regarding mtx..was injections..we

> switched back to the pills and she is fine.

> karen