Re: Daughter newly diagnosed with Still's disease (systemic JRA).

[Guest guest]

Hi ,

Gosh... to carry or not to carry, that is the question!! How old is

your child? Some of that depends on their size and your physical

capability, as obvious as that seems. Many of these children are

quite resourceful and will resort to crawling, hopping, limping,

etc. Give us more info and we can better help your situation.

We have all probably been where you are at some point, regardless of

the type of JRA. It's a fine line of helping the child, helping the

child to help themself, or just breaking down and doing everything

for them. I don't recommend the latter, but in the beginning, it is

tempting.

As you have probably been told, exercise is good to keep the joints

as mobile as possible and to minimize any loss of range of motion.

That doesn't mean that they have to run if they are in pain or climb

lots of stairs or do lots of walking in pain, if they don't want

to. Just encourage them to do their best and take one day at a time.

Is your child in lots of pain because meds. haven't yet " kicked in "

yet? I might suspect that since you've had such a recent

diagnosis. Tell us more about your child, age, activities, drugs

and treatments plan you have so far, then you'll have lots more

informed input from everyone.

It can and does get better. The beginning is frequently the worst.

Managing the disease is a process that is individual with every

child, even on the same meds. Finding the right med, combination of

meds, doses, activity levels, etc. can take some time.

OK, now for the real answer as to what we did most recently when my

son was in great pain..... If need be, we would carry him (he's 60

lbs and kills my back) or let him crawl or lean on someone to get

him to a couch or bed, then use heating pads on the affected joints

until they felt better. Even if he was shrieking in pain at first,

within an hour or two, he'd be able to get by on his own for a

little. We'd let him read a book or read to him or sometimes watch

TV or a video (a real treat around here) to get his mind off things.

Welcome to this super informed group of parents, guardians and young

adults that have all experienced much of what you are or will be

going through.

Stacia and Hunter 8 systemic, iritis

>

>

> Hi Everybody,

>

> My name is , and my daughter was recently diagnosed with

Still's

> (2-1/2 months ago). Things have been going pretty uneventfully;

but

> some days we have days where she can hardly move. Her joint(s) is

> (are) a little hot and swollen, but not so much so as I would

expect

> for the level of pain she is describing. I don't doubt her, but

am

> just wondering if anyone else has experienced this with their

child.

> If so - do you carry them because they have a swollen ankle and it

> hurts to walk, or do you encourage them to walk even though it is

> excruciatingly painful?

>

> Thanks so much for your time!

>

>

[Guest guest]

Hi ,

Your daughter may also be experiancing Myalgas which is all over body

pain,very common in systemic.

The walking issue would have to be a judgement call based on the severity.If

your daughter can walk with a limp then let her do what she can.If it is

excrusiating then her ankle could give out and make things worse.Kids can be

very

resourceful.They will scoot on their bottoms,walk on their knees,slither on

their tummies,etc.There were times with my son the pain was so severe we

couldn't

even touch him and he could not move.He had to be put in diapers,spoon

fed,proped up with pillows with a sippy cup,sponge bathed.Most of this was

before

treatment or duiring a bad flare up.

Just go with your gut and if you feel you need to carry then do so just make

sure when things are going ok she walks and does gentle stretching exercises

with the effected joints.

Becki and 6 systemic

[Guest guest]

Welcome . I am sorry for your daughter's pain. Children are extremely

stoic. We can never know especially on a little one the degree of pain they are

in as they mask it so well. Garrett just turned 3 and was diagnosed a little

over a year ago. There are times that we do carry him and even have to feed him

when he is having a bad day. His little hands hurt to much to hold silverware

or eat with his fingers. He will tell you he is full after a couple of bites,

but you can look at his hands and see that they are so swollen. If you offer

him a bite he eats. While it is important for them to keep moving, it is also

realistic that there are days that they can't walk like they normally would. If

she needs carrying, pick her up and just love her.

Kris

[Guest guest]

Hi and welcome to the group. My son just turned 7, he was diagnosed with

systemic JRA when he was 3. Alot would depend, I think on your daughter's age.

Also, your instinct as a Mom. There are lots of times when my son is in too

much pain to walk - generally during a flare - and then I carry him. During

these episodes, he is dealing with more than pain in one joint as a rule. If

it's an ankle or knee that hurts, he walks with a limp - when he was younger he

would crawl to get around if it was too painful to walk - and then I would carry

him if we were outdoors, or to the car, etc - and used a stroller when

appropriate. Robbie walks when he can, even when in a severe flare, if he can

get to the bathroom, for example on his own - he will (with me watching the

painful JRA shuffle - but letting him do what he can, when he can)- he lets me

know if he needs help. Depending on your daughters age - she should be able to

let you know when she needs help. Often the docs will use the term

" self-limiting " meaning the child will learn to limit their own activity based

on their ability at the moment - many here - particularly some of the young

adults who have dealt with this disease since their own childhood, tell stories

about how the walked differently because of the pain, almost without realizing

they were compensating on their own to be able to keep going. Most of our kids

want to do what they can when they can - they don't take normal things like

being able to walk to the bathroom on their own for granted -because they know

what it's like to have problems with typical daily tasks - they want to do for

themselves. When Robbie is flaring really badly - he hurts all over so badly

that my picking him up and helping him move is sometimes more painful than when

he struggles to do it on his own. Robbie rarely wants to be helped or carried -

an on ocassion if he asks to be carried - and it is more because he wants an

extra hug than due to pain, that's ok too. He's getting to the age where the

hugs dropping off and picking up at school are no longer acceptable, so we make

up for it somewhere! You and your daughter will find what works for you - as

you both come to terms with what it means for you. I hope that your daughter

responds quickly to whatever treatment has been started and that she feels less

in need of any extra help quickly.

Val

Rob's Mom (7,systemic)

[Guest guest]

Hi, and welcome. You have received lots of great advice already, I

would just add that swelling does not always equal the pain. My son's

ankles were puffy but not horribly swollen and yet he walked with a limp

and could not run. The pain in his joints was just too much. Also he

never had the heat that is sometimes associated with the arthritic

joints. So, yes she should exercise and do as much as she can for

herself, but she may need some help sometimes. My son was dx'ed at 13 so

carrying wasn't an option, but he did become rather sedentary for awhile

until the pt and the meds began to help. Good luck to you, Michele

(17,pauci & spondy)

Daughter newly diagnosed with Still's disease (systemic

JRA).

Hi Everybody,

My name is , and my daughter was recently diagnosed with Still's

(2-1/2 months ago). Things have been going pretty uneventfully; but

some days we have days where she can hardly move. Her joint(s) is

(are) a little hot and swollen, but not so much so as I would expect

for the level of pain she is describing. I don't doubt her, but am

just wondering if anyone else has experienced this with their child.

If so - do you carry them because they have a swollen ankle and it

hurts to walk, or do you encourage them to walk even though it is

excruciatingly painful?

Thanks so much for your time!