Can't help but be frustrated.

[Guest guest]

Yes, when is she having the urination accidents. Is in the Morning? How old

is she?

Are these accidents during the day. She may need a Calcium ratio on her

urine. JRA kids ahave an increase of Calcium in their urine, not all but some

do. Is the urine cloudy or painful? What is the color?? My daughter was in

too much pain to walk to the bathroom in the morning so she would urinate in

the bed. I am sorry to aask so many questions but they may be helpful. Also

is your daughter having an increase in thrist?? I am soory you are going

through this. I hope it gets better SHU.

[Guest guest]

Well....

As y'all know I was questioning Hannah's jaw pain about a week ago.

She saw her PCP on Wednesday who is very concerned and recommended we

get in to see her ped rheumy ASAP. Hannah (i usually call her Bubba,

so if I slip, that's who I'm referring to) also is having some

inflammation in her left wrist, where it's been before but with no

pain. This time she's complaining of pain.

What a tricky disease this is. You think things have finally calmed

to a comfortable point when it all comes crashing back at you.

Remission fools me everytime, then I get SOOO disappointed when she

flares. She's such a vibrant vivacious child, it KILLS me to see her

in pain. She also starting having peeing accidents recently, about

the time she started flaring. Anyone ever see a correlation between

the two?

Anyway...she's got an appt with her ped rheumy on the 25th...and I'm

dreading it. I've managed to keep her steady on Naprosyn alone so

far...thinking now this disease may finally have gotten then best of

us.

[Guest guest]

i know its hard on both of yall but dont let this get the best of yall

yall are strong and can get through this as a team

your right though when you think a remission is there something happens

i thought the same with melissa

the peeing on the bed i have not experienced YET and hope i dont cause she

sleeps with me

but the pain i do

the first week of school was great she went everyday

second week she missed i think 2 days the next week she missed i believe 4

days

it was morning stiffness , headaches, dizzy spells, and just fatigued

ahe ended up doing 2 or 3 days a week til this week

i talked with the school and they said to bring her late at least try and

get her to school by 10:30 even missing 1 block she will make up after

school if needed

shes made up all her make up work now and this seems to be working better

BUT as you said something could happen and mess these plans up also

i am just crossing my fingers on it

since your concerned about the peeing call the ped rhuemy and ask questions

he or she may tell you something you can try before yall see that one

this helps me i did call melissas ped rhuemy and she was very concerned

we had blood work done to rule out anything then i called her 2 days later

and informed her melissa wasnt better so she told me something to do and call

her back if that didnt help she would request some more tests this dr is

very prompt so far and always calls me back even though she does travel

around ga to check other kids with JRA shes right there for her patients

let me know how your daughter is doing

Robbin

[Guest guest]

hi lisa, please dont think jra has beaten you or your " bubba " . get mad!

get determined! thats the best way to put up the best fight. you sound like

you are losing hope, and i really hope not. a friend once told me it was

stupid for me to hope that i'd ever get any better. i was crushed. i knew

that i might not get better, but i still had hope, thats what kept me going.

i even made out a wish list, a list of all the things i hoped i could do

one day. i put down anything, no matter how outrageous, cuz theres nothing

wrong with hoping. it helps keep spirits up and faith going. i like to

think that if you can keep thinking like that even when things are really,

really bad that something wonderful will follow to make it all worthwhile as

a reward for believing. now i can do a whole lot of the things i had on

that list, i even raced my mom to the car a few weeks a go! i won too! her

mouth fell open cuz it has been years since i was able to take off running,

i might have won cuz she was standing there in shock, lol. anyway, keep

your chin up, brandy

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[Guest guest]

you are soo right HOPE FAITH Determination

Never give up of allow something to out do you

you have to stand up to the fight a HARD fight

but you will be stronger than you will ever know

as said about her mom being amazed or shocked

at the sight of her running

is a high spirited person whos liveing

day by day with this JRA

listen to her she is where OUR kids will be in a few years

shes walking the road ahead of our kids

so she can give us advice on whats ahead

has determnation with that HOPE and FAITH she can fight

i can understand your point cause i am a mom of a child with JRA

this makes our fight even more tougher because we are the childs voice

and support and comfort

God never said we would live without stumbling blocks obstacles or brick

walls

he never said he would allow us to live in a bed of roses

But he did say something about the sweat of your brow

God is OUR HOPE and FAITH

even when you ask him for help to stop pain or help

he does in his own way Just like the FOOTPRINTS

when you THOUGHT you were ALL alone or needed him the most

Thats when he carried YOU

Never let your FAITH go

Robbin

[Guest guest]

Robbin

I agree with you has really been a jewel and great asset to me.

[Guest guest]

,

My daughter with JRA is 17. She has a couple of questions to ask. 1 Do you

seem to flare up during your period? Also do they seem shorter that they used

to. Sorry for the rather personal questions

Marcie ( 's mom )

[Guest guest]

marcie and jenni, no problem, lol. bad periods run in my family, horrible

cramps and all that comes with them. i actually havent had a period in

about 2 years. i finally got fed up with them and went on birth control.

its a shot called Depo-Provera that you get every three months. its way more

effective than the pill, cuz u r less likely to forget the shot than take

the pill at the same time every day. i was in the 80% that it stopped

menstrual flow in. when i did get periods, i dont remember flaring during

them and i always ran long on days. sometimes 9 days! they had to go.

anyway, jenni can always email me privately if shed like to ask me other

questions, privacy doesnt matter to me cuz i know there are parents out

there with jra girls, its up to you all. thanks,brandy

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[Guest guest]

Hi ,

As most others here, I can definitely relate to what you're saying.

We've been there too. Things can seem steady and manageable for a while

and then, gradually, new and different areas of the body are sometimes

affected. We'd be very concerned about, for example, 's ankles.

For a few months. And then that area would clear up. We'd be really

excited about the improvement. And then ... his wrists and fingers would

get stiff and swollen and start hurting him. And it would seem like we'd

be beginning all over again

One of the Mom's I met online, with a now college-aged daughter who had

JRA as a youngster, has been through the problems of JRA affecting a

child's jaw. Just last summer Ros had to have a complicated surgery done

on her jaw. Afterwards, it was wired for 6 to 8 weeks. When they finally

undid it, it turned out that the surgery ~while bringing about major

improvements~ didn't turn out quite the way they had expected. And the

doctors said they'd need to operate again. Well, Ros said no way! She

wouldn't do it. Said it was too much of an ordeal. And by this time, she

was old enough to make those kinds of decisions for herself. Her Mom

says that when her daughter was younger, all she took was lots and lots

of baby aspirins every day.

That was the best the doctors could offer her child. And the disease

seems to have raged on in the background, slowly causing irrepairable

joint damage. Nowadays we have many different meds that have been

approved for use in treating children's JRA. I know. There's always the

risk of side effects. Some more serious than others. And it's scary to

think that our kids may need to use some of these meds for indefinite

periods. On the other side of the coin, the effects of this illness are

really scary too, especially if it's not being treated aggressively

enough.

If you have concerns about the amount of pain and inflammation that

Hannah's been experiencing, I'd make a point of talking with the doctor

about this at your upcoming visit. Every case is different but for a lot

of children, Naprosyn doesn't provide enough control of the symptoms.

Many times they'll take a step-up approach and try a combination

therapy, by adding another med, to try to stabilize things better. If

the disease process continues there's a good chance the joints may still

be being damaged. If there's still pain and inflammation, it sounds like

it may be doing just that.

Let us know how your appointment goes, okay? Good Luck.

Take care,

Georgina

Wildes wrote:

>

> Well....

> As y'all know I was questioning Hannah's jaw pain about a week ago.

> She saw her PCP on Wednesday who is very concerned and recommended we

> get in to see her ped rheumy ASAP. Hannah (i usually call her Bubba,

> so if I slip, that's who I'm referring to) also is having some

> inflammation in her left wrist, where it's been before but with no

> pain. This time she's complaining of pain.

>

> What a tricky disease this is. You think things have finally calmed

> to a comfortable point when it all comes crashing back at you.

> Remission fools me everytime, then I get SOOO disappointed when she

> flares. She's such a vibrant vivacious child, it KILLS me to see her

> in pain. She also starting having peeing accidents recently, about

> the time she started flaring. Anyone ever see a correlation between

> the two?

>

> Anyway...she's got an appt with her ped rheumy on the 25th...and I'm

> dreading it. I've managed to keep her steady on Naprosyn alone so

> far...thinking now this disease may finally have gotten then best of

> us.

>

>