Is this normal??

[Guest guest]

My 3 year old daughter was diagnosed with JRA in May of this year. She

has complained about her ankle. She has been on Naproxen since then.

In the past two months or so, she has complained about her shoulder,

fingers and knees all at different times and all slightly swollen. She

has also gotten " puffy " . She looks swollen in her legs, face, neck and

belly even when she is not in pain. She has suddenly been having

frequent " accidents " which is not normal for her. I have read

information online which I am not sure is always the best thing to do

but there was information on kidney problems with the naproxen. Would

this be considered the JRA is spreading and is it normal for it to

spread so quickly? And do all kids with JRA look like they are swollen

all over or could it be a side effect of the medicine. I thought it

was just me then someone else saw her for the first time in a month or

so and commented the she looks " chunky " . I am going to call the dr but

it usually takes at least three days to hear back.

Thanks for listening again -

Kerri

e 3 (JRA?)

[Guest guest]

hi Kerri, I am not sure there is a "normal" as jra varies for each child, but it is not unusual for jra to involve multiple joints. Fatigue is also a significant issue with jra, and if e is having swelling and pain in more joints than before, I wonder if her 'accidents' are a symptom of fatigue? When you mention the puffiness of the face and neck, I wonder if e might be having some reaction to the Naproxen? My daughter's friend is allergic to naproxen and swells up in her face and around her eyes...Personally, I have found a good deal of helpful information on the internet...you have to be a bit selective, but the Arthritis Foundation website, for example, has a wealth of information...I would definitely follow-up with e's dr regarding the puffiness, and all of your questions. I hope you will feel comfortable to share here anytime - this is such an amazing group of caring, supportive individuals.Please let

us know what the dr says and let us know how e is doing.nancy (, 17, poly, migraines, cvid)kcim2230 <kecrozier@...> wrote: My 3 year old daughter was diagnosed with JRA in May of this year. She has complained about her ankle. She has been on Naproxen since then. In the past two months or so, she has complained about her shoulder, fingers and knees all at different times and all slightly swollen. She has also gotten "puffy". She looks swollen in her legs, face, neck and belly even when she is not in pain. She has

suddenly been having frequent "accidents" which is not normal for her. I have read information online which I am not sure is always the best thing to do but there was information on kidney problems with the naproxen. Would this be considered the JRA is spreading and is it normal for it to spread so quickly? And do all kids with JRA look like they are swollen all over or could it be a side effect of the medicine. I thought it was just me then someone else saw her for the first time in a month or so and commented the she looks "chunky". I am going to call the dr but it usually takes at least three days to hear back. Thanks for listening again - Kerri e 3 (JRA?)

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.

[Guest guest]

Hello,

I would check the ingredients in the meds sometimes

soduim is in them and that can cause swelling after a

while

--- kcim2230 <kecrozier@...> wrote:

> As far as it being an allergic reaction, I wasn't

> sure if it would

> take this long for it to surface. She has been on

> the medication for

> 5 months now. But in the last month or so

> everything seems to be

> changing s far as what hurts her, how often she

> complains and how

> much she complains. She has also been more

> irratable then normal.

> Especially in the morning but I blame most of it on

> the fact that she

> is in pain (the rest is my genes!) I am still in

> the " dr must be

> wrong phase " . I have noticed that a lot of kids

> have other problems

> other then just the artritis such as asthma,

> migraines, and such.

> She has allergies pretty bad that will induce

> asthama. I am

> definitely going to call her dr tomorrow. I think

> that I amy call

> her ped because I can ge thtrough to her right away

> and I know she

> will tell me what she is thinking it is where as the

> rheumy will take

> three days to call back and I am not always sure

> what he is

> thinking. Our next appt is Sept 27 though.

>

> Thanks for letting me ramble, again!

>

> Kerri

> (e, 3, JRA)

>

>

>

> My 3

> year old daughter was diagnosed with JRA in May of

> this year. She

> > has complained about her ankle. She has been on

> Naproxen since

> then.

> > In the past two months or so, she has complained

> about her

> shoulder,

> > fingers and knees all at different times and all

> slightly

> swollen. She

> > has also gotten " puffy " . She looks swollen in

> her legs, face,

> neck and

> > belly even when she is not in pain. She has

> suddenly been having

> > frequent " accidents " which is not normal for

> her. I have read

> > information online which I am not sure is always

> the best thing to

> do

> > but there was information on kidney problems with

> the naproxen.

> Would

> > this be considered the JRA is spreading and is it

> normal for it to

> > spread so quickly? And do all kids with JRA look

> like they are

> swollen

> > all over or could it be a side effect of the

> medicine. I thought

> it

> > was just me then someone else saw her for the

> first time in a

> month or

> > so and commented the she looks " chunky " . I am

> going to call the

> dr but

> > it usually takes at least three days to hear

> back.

> >

> > Thanks for listening again -

> >

> > Kerri

> > e 3 (JRA?)

> >

> >

> >

> >

> >

> >

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

> > Moody friends. Drama queens. Your life? Nope! -

> their life, your

> story.

> > Play Sims Stories at Games.

> >

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

When I was diagnosed when I was about 5 I remember not being able to

even walk in the morning and my dad driving me to daycare. I also

remember what helped the most was fish oil (not pills) as 15 pills =

the same as a few liquid drops … and also other natural anti-

inflammatory, less sugar, and certain diets. The accidents are

defiantly because of the meds, they tend to make children with JRA

constipated, and from all the meds I took till 17 along time to

recover to somewhat normal, as I'm almost 23 now. I would recommend

giving your child some sort of laxative or apple juice etc, and it

will help her cut down on the accidents. Stay strong, the disease is

very destructive but if you stay with the meds and make sure, they

have minimal side affects, and stay on a good diet it is possible to

help minimize the damage … I'm currently in remission now after about

age 17 and have been able to keep most functionality in my joints

with the most damage in my feet, hands and neck. I work and go to

school and the best attitude is to stay positive and to battle

through it, keeping a positive outlook is the best way to fight the

disease.

>

> My 3 year old daughter was diagnosed with JRA in May of this year.

She

> has complained about her ankle. She has been on Naproxen since

then.

> In the past two months or so, she has complained about her

shoulder,

> fingers and knees all at different times and all slightly swollen.

She

> has also gotten " puffy " . She looks swollen in her legs, face, neck

and

> belly even when she is not in pain. She has suddenly been having

> frequent " accidents " which is not normal for her. I have read

> information online which I am not sure is always the best thing to

do

> but there was information on kidney problems with the naproxen.

Would

> this be considered the JRA is spreading and is it normal for it to

> spread so quickly? And do all kids with JRA look like they are

swollen

> all over or could it be a side effect of the medicine. I thought

it

> was just me then someone else saw her for the first time in a month

or

> so and commented the she looks " chunky " . I am going to call the dr

but

> it usually takes at least three days to hear back.

>

> Thanks for listening again -

>

> Kerri

> e 3 (JRA?)

>

[Guest guest]

Hannah - well, yes it's normal to be exhausted and have headaches if you need

cortisol and aren't taking it and your body isn't making it. You really should

get your cortisol levels tested soon, because if your adrenal gland isn't

working then it's dangerous not to be taking adrenal hormones.

(Of course if your adrenal gland has been suppressed by taking Isocort, then it

might take awhile for it to recover. I'm not sure about the timing of that.)

Are you on any other medications like thyroid? (T3, T4 etc.) I'm sure you know

that thyroid hormones can't work properly if your cortisol levels are low.

Barb L.

>

> I've just come off 15 Isocort after being on it for 1 1/2 years and I came off

it over the period of about 2 months.

>

> I want to get re tested with a saliva test to see where I stand and whether my

adrenals have improved or not.

>

> I've been off the Isocort totally about a week now and I'm excessively

exhausted. I was very tired ON the Iscort and often slept until lunchtime but

OFF the Isocort and the tiredness/weariness is huge.

>

>

> Hannah

>