RE: Ever regret giving in???

[Guest guest]

It is hard to see that they struggle after playing. But I personally

think it is best to let them just be normal as much as possible. They

will stop when they need to - at least when they are little. Our older

ones begin to act like us adults and push themselves too much sometimes.

We have all been where you are, regretting that we let them play because

we see the aftereffects. I remember when was still playing

baseball and he was stiff and sore. I had tears in my eyes watching him

struggle some days, but he always wanted to get out there. And so we let

him. The dr assured us that he was not damaging his joints and so far

that is true. Many of our kids here on the list play sports and do dance

and many other things and afterwards they pay the price physically, but

doing all that gives them so much pleasure that you hate to take it away

from them. I think it is ok that you took him to the park and I hope

that soon you have a proper diagnosis so that he can get on the right

meds that will help him have less days of pain and swelling. Michele

( 18, spondy)

Ever regret giving in???

My brother called yesterday and asked if we wanted to go to the park. I

wasn't sure about that since it was going to warm and humid, but Ben

begged, so I gave in and we went.

My brother wanted to park at the mall downtown and walk over to the

park. " It's only a block or so " he says.....so I say ok.

2 1/2 blocks...Halfway there Ben tells me his legs are tired already.

So my mom piggy backs him the rest of the way, since I can't carry him

right now. We get into the park and off he runs with the rest of the

kids, limping all the way. I was ready to run around and take him home.

I spend the rest of the time trying to get him to slow down and not

run and jump so much. But how do you stop a kid from being a kid?

After a small snack, we walked over to a fountain and took some

pictures. And luckily found an easier way back to the mall. We walked

along the river, in the shade and had a Root-beer float at the Mall.

Ben's limp got worse and worse.

By the time we got home, his left knee was swollen and I put heat

packs on them both, dosed him with Motrin and nagged him to sit down the

rest of the day.

I hate to see him push himself so far. He doesn't seem to know any

limits yet. What do I do?? Any ideas? He's 5, I can't make him sit down

and not play...it's just not right!

Carey and Ben (5, still being diagnosed)

---------------------------------

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[Guest guest]

Carey,

I know that making these kinds of decisions can be difficult you

want to let them play and have fun but then you see the side effects

of increased pain later.

We had this same type of problem yesterday with Aundrea. She was

invited to go swimming with a friend. Mid-day in Arizona sun. Her

doctor believes that the sun is exasperating Aundrea's condition and

wants her to remain out of the sun between 10-5. Which means no

outdoor recess and the whole playdate thing with friends. I will

admit we have been pretty lax about this but now she is in a flare

and it worsens after she has been outside...So, we told her she had

to wait til at least 4:00. She was unhappy about this. She could

go to her friends and play indoors and at 4:00 they could swim...So

I lathered her in sunblock and off she went. She did come home with

a rash on face and neck and this morning she had her usual

stiffness, but I am sure it was better than if we let her go all

afternoon.

Soemtimes its not about just saying " no " but trying to find a middle

ground. Perhaps a wagon ride to the park so that he doesn't have to

walk quite so far?

In the end, its like said...We do our best to let them be

kids and my guess is that if we would withold those pleasures of

being a kid it would hurt their heart more than it hurts their

joints....Its all about finding a balance.

Blessings,

(Aundrea 10 systemic jra)

>

> My brother called yesterday and asked if we wanted to go to the

park. I wasn't sure about that since it was going to warm and humid,

but Ben begged, so I gave in and we went.

>

> My brother wanted to park at the mall downtown and walk over to

the park. " It's only a block or so " he says.....so I say ok.

>

> 2 1/2 blocks...Halfway there Ben tells me his legs are tired

already. So my mom piggy backs him the rest of the way, since I

can't carry him right now. We get into the park and off he runs with

the rest of the kids, limping all the way. I was ready to run around

and take him home.

>

> I spend the rest of the time trying to get him to slow down and

not run and jump so much. But how do you stop a kid from being a

kid?

>

> After a small snack, we walked over to a fountain and took some

pictures. And luckily found an easier way back to the mall. We

walked along the river, in the shade and had a Root-beer float at

the Mall. Ben's limp got worse and worse.

>

> By the time we got home, his left knee was swollen and I put

heat packs on them both, dosed him with Motrin and nagged him to sit

down the rest of the day.

>

> I hate to see him push himself so far. He doesn't seem to know

any limits yet. What do I do?? Any ideas? He's 5, I can't make him

sit down and not play...it's just not right!

>

> Carey and Ben (5, still being diagnosed)

>

>

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

> New Messenger with Voice. Call regular phones from your PC

and save big.

>

>

[Guest guest]

It is hard, at a young age, to realise that if it hurts, its time to

stop. They seem to only realise this if its something they want not

to be doing. This is something they can only learn from experience.

Momma might know better, but if we impose, then they're not learning.

Obviously, this doesn't mean just let them do whatever, but within

reason, let them find their own limitations.

The walk there and back on top of playing at the park possibly was a

bit much. The wagon ride another poster suggested is a good idea.

Other kids can participate too, so its not singling him out.

At 5, was too big for a regular stroller, so we bought a

jogging stroller. It doesn't have the stigma of a wheelchair, but

will carry up to a 75 lb child. We use it when we go to a mall or an

outing where there will be a lot of boring walking. That kind seems

to hurt the worst. :-) My regret there is that we bought one with a

fixed front wheel because it was cheaper, nowI wish we'd gone for

better manueverability.

Misty & (7, systemic)

>

> My brother called yesterday and asked if we wanted to go to the

park. I wasn't sure about that since it was going to warm and humid,

but Ben begged, so I gave in and we went.

>

> My brother wanted to park at the mall downtown and walk over to

the park. " It's only a block or so " he says.....so I say ok.

>

> 2 1/2 blocks...Halfway there Ben tells me his legs are tired

already. So my mom piggy backs him the rest of the way, since I can't

carry him right now. We get into the park and off he runs with the

rest of the kids, limping all the way. I was ready to run around and

take him home.

>

> I spend the rest of the time trying to get him to slow down and

not run and jump so much. But how do you stop a kid from being a kid?

>

> After a small snack, we walked over to a fountain and took some

pictures. And luckily found an easier way back to the mall. We walked

along the river, in the shade and had a Root-beer float at the Mall.

Ben's limp got worse and worse.

>

> By the time we got home, his left knee was swollen and I put heat

packs on them both, dosed him with Motrin and nagged him to sit down

the rest of the day.

>

> I hate to see him push himself so far. He doesn't seem to know

any limits yet. What do I do?? Any ideas? He's 5, I can't make him

sit down and not play...it's just not right!

>

> Carey and Ben (5, still being diagnosed)

>

>

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

> New Messenger with Voice. Call regular phones from your PC

and save big.

>

>

[Guest guest]

I second all the comments. He will find his balance and the exercise is good for

the joints actually. But next time they are red and hot, use ice packs instead

of warm packs. Warm packs actually increase the swelling and bring more redness

and pain to the joints. We learned this one the hard way!

e

Carey <careynsa@...> wrote:

My brother called yesterday and asked if we wanted to go to the park. I wasn't

sure about that since it was going to warm and humid, but Ben begged, so I gave

in and we went.

My brother wanted to park at the mall downtown and walk over to the park.

" It's only a block or so " he says.....so I say ok.

2 1/2 blocks...Halfway there Ben tells me his legs are tired already. So my

mom piggy backs him the rest of the way, since I can't carry him right now. We

get into the park and off he runs with the rest of the kids, limping all the

way. I was ready to run around and take him home.

I spend the rest of the time trying to get him to slow down and not run and

jump so much. But how do you stop a kid from being a kid?

After a small snack, we walked over to a fountain and took some pictures. And

luckily found an easier way back to the mall. We walked along the river, in the

shade and had a Root-beer float at the Mall. Ben's limp got worse and worse.

By the time we got home, his left knee was swollen and I put heat packs on

them both, dosed him with Motrin and nagged him to sit down the rest of the day.

I hate to see him push himself so far. He doesn't seem to know any limits yet.

What do I do?? Any ideas? He's 5, I can't make him sit down and not play...it's

just not right!

Carey and Ben (5, still being diagnosed)

---------------------------------

New Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

This e-mail comes at an interesting time. Hannah (age 9, still being diagnoned)

had a 2 hour softball game tonight. She's only been home for about 1/2 hour and

her knee is swollen and sore. She also played really hard this weekend. Our

weather was beautiful (you never know about May in Wiscsonin) and I just could

not make her stay inside. She needed help out of bed this a.m. because she was

so sore. Her doctor said to encourage activity.

On a separate note, I'm wondering if any your kids have had a bone scan.

Hannah is scheduled for next week for a total bone scan (neck down). I'm

wondering how traumatic this is on the kids and is it hard for them to lie

still for long?

Beth & Hannah, 9...Happy thoughts, be well.

" Tepper, Michele " <MTepper@...> wrote:

It is hard to see that they struggle after playing. But I personally

think it is best to let them just be normal as much as possible. They

will stop when they need to - at least when they are little. Our older

ones begin to act like us adults and push themselves too much sometimes.

We have all been where you are, regretting that we let them play because

we see the aftereffects. I remember when was still playing

baseball and he was stiff and sore. I had tears in my eyes watching him

struggle some days, but he always wanted to get out there. And so we let

him. The dr assured us that he was not damaging his joints and so far

that is true. Many of our kids here on the list play sports and do dance

and many other things and afterwards they pay the price physically, but

doing all that gives them so much pleasure that you hate to take it away

from them. I think it is ok that you took him to the park and I hope

that soon you have a proper diagnosis so that he can get on the right

meds that will help him have less days of pain and swelling. Michele

( 18, spondy)

Ever regret giving in???

My brother called yesterday and asked if we wanted to go to the park. I

wasn't sure about that since it was going to warm and humid, but Ben

begged, so I gave in and we went.

My brother wanted to park at the mall downtown and walk over to the

park. " It's only a block or so " he says.....so I say ok.

2 1/2 blocks...Halfway there Ben tells me his legs are tired already.

So my mom piggy backs him the rest of the way, since I can't carry him

right now. We get into the park and off he runs with the rest of the

kids, limping all the way. I was ready to run around and take him home.

I spend the rest of the time trying to get him to slow down and not

run and jump so much. But how do you stop a kid from being a kid?

After a small snack, we walked over to a fountain and took some

pictures. And luckily found an easier way back to the mall. We walked

along the river, in the shade and had a Root-beer float at the Mall.

Ben's limp got worse and worse.

By the time we got home, his left knee was swollen and I put heat

packs on them both, dosed him with Motrin and nagged him to sit down the

rest of the day.

I hate to see him push himself so far. He doesn't seem to know any

limits yet. What do I do?? Any ideas? He's 5, I can't make him sit down

and not play...it's just not right!

Carey and Ben (5, still being diagnosed)

---------------------------------

New Messenger with Voice. Call regular phones from your PC and

save big.

[Guest guest]

My Mom actually thought of the wagon after we were already there. I also have a

larger stroller still, that he would be able to fit in. Since were still new at

all this, I'm finding it hard to balance things out. While I know he needs to

play and be a kid, I'm not sure he really knows when to quit. Of course, he

knows his limits better than I do.

Thanks for the reply. *S*

misty_o_c <misty_o_c@...> wrote:

It is hard, at a young age, to realise that if it hurts, its time to

stop. They seem to only realise this if its something they want not

to be doing. This is something they can only learn from experience.

Momma might know better, but if we impose, then they're not learning.

Obviously, this doesn't mean just let them do whatever, but within

reason, let them find their own limitations.

The walk there and back on top of playing at the park possibly was a

bit much. The wagon ride another poster suggested is a good idea.

Other kids can participate too, so its not singling him out.

At 5, was too big for a regular stroller, so we bought a

jogging stroller. It doesn't have the stigma of a wheelchair, but

will carry up to a 75 lb child. We use it when we go to a mall or an

outing where there will be a lot of boring walking. That kind seems

to hurt the worst. :-) My regret there is that we bought one with a

fixed front wheel because it was cheaper, nowI wish we'd gone for

better manueverability.

Misty & (7, systemic)

>

> My brother called yesterday and asked if we wanted to go to the

park. I wasn't sure about that since it was going to warm and humid,

but Ben begged, so I gave in and we went.

>

> My brother wanted to park at the mall downtown and walk over to

the park. " It's only a block or so " he says.....so I say ok.

>

> 2 1/2 blocks...Halfway there Ben tells me his legs are tired

already. So my mom piggy backs him the rest of the way, since I can't

carry him right now. We get into the park and off he runs with the

rest of the kids, limping all the way. I was ready to run around and

take him home.

>

> I spend the rest of the time trying to get him to slow down and

not run and jump so much. But how do you stop a kid from being a kid?

>

> After a small snack, we walked over to a fountain and took some

pictures. And luckily found an easier way back to the mall. We walked

along the river, in the shade and had a Root-beer float at the Mall.

Ben's limp got worse and worse.

>

> By the time we got home, his left knee was swollen and I put heat

packs on them both, dosed him with Motrin and nagged him to sit down

the rest of the day.

>

> I hate to see him push himself so far. He doesn't seem to know

any limits yet. What do I do?? Any ideas? He's 5, I can't make him

sit down and not play...it's just not right!

>

> Carey and Ben (5, still being diagnosed)

>

>

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

> New Messenger with Voice. Call regular phones from your PC

and save big.

>

>

[Guest guest]

I'm sure once we get into a routine with all this, it will get better. It's just

hard right now. He's at the age where he's not really my baby anymore and now

this on top of everything. *S*

Thanks.

" Tepper, Michele " <MTepper@...> wrote:

It is hard to see that they struggle after playing. But I personally

think it is best to let them just be normal as much as possible. They

will stop when they need to - at least when they are little. Our older

ones begin to act like us adults and push themselves too much sometimes.

We have all been where you are, regretting that we let them play because

we see the aftereffects. I remember when was still playing

baseball and he was stiff and sore. I had tears in my eyes watching him

struggle some days, but he always wanted to get out there. And so we let

him. The dr assured us that he was not damaging his joints and so far

that is true. Many of our kids here on the list play sports and do dance

and many other things and afterwards they pay the price physically, but

doing all that gives them so much pleasure that you hate to take it away

from them. I think it is ok that you took him to the park and I hope

that soon you have a proper diagnosis so that he can get on the right

meds that will help him have less days of pain and swelling. Michele

( 18, spondy)

Ever regret giving in???

My brother called yesterday and asked if we wanted to go to the park. I

wasn't sure about that since it was going to warm and humid, but Ben

begged, so I gave in and we went.

My brother wanted to park at the mall downtown and walk over to the

park. " It's only a block or so " he says.....so I say ok.

2 1/2 blocks...Halfway there Ben tells me his legs are tired already.

So my mom piggy backs him the rest of the way, since I can't carry him

right now. We get into the park and off he runs with the rest of the

kids, limping all the way. I was ready to run around and take him home.

I spend the rest of the time trying to get him to slow down and not

run and jump so much. But how do you stop a kid from being a kid?

After a small snack, we walked over to a fountain and took some

pictures. And luckily found an easier way back to the mall. We walked

along the river, in the shade and had a Root-beer float at the Mall.

Ben's limp got worse and worse.

By the time we got home, his left knee was swollen and I put heat

packs on them both, dosed him with Motrin and nagged him to sit down the

rest of the day.

I hate to see him push himself so far. He doesn't seem to know any

limits yet. What do I do?? Any ideas? He's 5, I can't make him sit down

and not play...it's just not right!

Carey and Ben (5, still being diagnosed)

---------------------------------

New Messenger with Voice. Call regular phones from your PC and

save big.

[Guest guest]

Thanks . you've all been so helpful.

We'll definitely be taking the wagon next time and planning on going earlier

in the day too. Texas is so hot and humid. *S*

sonia1md <sonia1md@...> wrote:

Carey,

I know that making these kinds of decisions can be difficult you

want to let them play and have fun but then you see the side effects

of increased pain later.

We had this same type of problem yesterday with Aundrea. She was

invited to go swimming with a friend. Mid-day in Arizona sun. Her

doctor believes that the sun is exasperating Aundrea's condition and

wants her to remain out of the sun between 10-5. Which means no

outdoor recess and the whole playdate thing with friends. I will

admit we have been pretty lax about this but now she is in a flare

and it worsens after she has been outside...So, we told her she had

to wait til at least 4:00. She was unhappy about this. She could

go to her friends and play indoors and at 4:00 they could swim...So

I lathered her in sunblock and off she went. She did come home with

a rash on face and neck and this morning she had her usual

stiffness, but I am sure it was better than if we let her go all

afternoon.

Soemtimes its not about just saying " no " but trying to find a middle

ground. Perhaps a wagon ride to the park so that he doesn't have to

walk quite so far?

In the end, its like said...We do our best to let them be

kids and my guess is that if we would withold those pleasures of

being a kid it would hurt their heart more than it hurts their

joints....Its all about finding a balance.

Blessings,

(Aundrea 10 systemic jra)

>

> My brother called yesterday and asked if we wanted to go to the

park. I wasn't sure about that since it was going to warm and humid,

but Ben begged, so I gave in and we went.

>

> My brother wanted to park at the mall downtown and walk over to

the park. " It's only a block or so " he says.....so I say ok.

>

> 2 1/2 blocks...Halfway there Ben tells me his legs are tired

already. So my mom piggy backs him the rest of the way, since I

can't carry him right now. We get into the park and off he runs with

the rest of the kids, limping all the way. I was ready to run around

and take him home.

>

> I spend the rest of the time trying to get him to slow down and

not run and jump so much. But how do you stop a kid from being a

kid?

>

> After a small snack, we walked over to a fountain and took some

pictures. And luckily found an easier way back to the mall. We

walked along the river, in the shade and had a Root-beer float at

the Mall. Ben's limp got worse and worse.

>

> By the time we got home, his left knee was swollen and I put

heat packs on them both, dosed him with Motrin and nagged him to sit

down the rest of the day.

>

> I hate to see him push himself so far. He doesn't seem to know

any limits yet. What do I do?? Any ideas? He's 5, I can't make him

sit down and not play...it's just not right!

>

> Carey and Ben (5, still being diagnosed)

>

>

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

> New Messenger with Voice. Call regular phones from your PC

and save big.

>

>