Re: Knee splints at night?

November 6, 2006

Becky,

My daughter used a wrist splint, and has had finger splints as well. I

do believe it helped to keep the muscles flexed in the right position

during the non-movement times at night. I guess I would suggest

adjusting her medicine as well. If you have found little help from her

medication, and things have stagnated, use the medicine's that are on

the market. We were at the same point with my daughter wrist, accepting

that should could only move it so far, and then we added humira to her

cocktail, and she does cartwheels without pain.

and Allie (10 poly)

________________________________

From: [mailto: ] On

Behalf Of jmm942000

Sent: Monday, November 06, 2006 1:39 PM

Subject: Knee splints at night?

Hello,

Just wondering if anyone has had their child use knee splints at

night?

My daughter is three. She was diagnosed with Pauci in early

September. We have been giving her Naproxen twice a day, PT twice a

week (along with exercise at home every day and swimming three to four

times a week). Her swelling went down initially a bit, but we haven't

had much improvement since the beginning. Her range of motion for

bending has improved, but not for straightening. At this point, we

only see the arthritis in her right knee.

Our PT recommended that we get a knee splint for nighttime use to help

with this. We see the rheumy on Friday . . . has anyone else tried

this? I'm new to all of this and just appreciate hearing what other

people have tried. I feel thankful to have the PT and rheumy that we

have and feel confident in their choices for her treatment, and mostly

just wondered if anyone in the same situation felt that this helped.

Thanks,

Becky

daughter, Abby, Pauci, 3 years old

November 6, 2006

Hi Becky, Has your rheumy mentioned a joint injection in that

knee? I have seen miracles with joint injections with our daughter.

When you have swelling you may have joint destruction going on, so it

is important to try to reduce the swelling. If the naprosyn isn't

doing it, you might want to consider a joint injection. Good luck.

(n, 17, systemic)

On Nov 6, 2006, at 11:39 AM, jmm942000 wrote:

> Hello,

>

> Just wondering if anyone has had their child use knee splints at

> night?

>

> My daughter is three. She was diagnosed with Pauci in early

> September. We have been giving her Naproxen twice a day, PT twice a

> week (along with exercise at home every day and swimming three to four

> times a week). Her swelling went down initially a bit, but we haven't

> had much improvement since the beginning. Her range of motion for

> bending has improved, but not for straightening. At this point, we

> only see the arthritis in her right knee.

>

> Our PT recommended that we get a knee splint for nighttime use to help

> with this. We see the rheumy on Friday . . . has anyone else tried

> this? I'm new to all of this and just appreciate hearing what other

> people have tried. I feel thankful to have the PT and rheumy that we

> have and feel confident in their choices for her treatment, and mostly

> just wondered if anyone in the same situation felt that this helped.

>

> Thanks,

>

> Becky

> daughter, Abby, Pauci, 3 years old

>

November 6, 2006

Hi ,

Thanks for your response. We have actually just seen our rheumy

once, when we first got the diagnosis, so at that time we started the

Naproxen (which has now been about 8 weeks). So, an injection could

be our next step. I've been reading a bit about that and am

certainly nervous, but have received the impression that many people

feel good about these shots, after seeing the shot help their

children.

Is this done in the office? Should we be prepared to possibly have

this done on Friday? Or is it different with each doctor?

Our PT feels that the swelling in her knee may never go back to the

size of the other one. She also says that she isn't sure how much

more change there will be in the straightening, either. I'm not sure

if this is fairly typical, or if this is something that we can help?

We are trying to keep her knee active and doing the exercises, but it

doesn't seem to want to straighten. I know joint damaage is

certainly a concern with her knee right now. I keep wishing we would

have known sooner and could have done more (I bet I'm not the first

one to say that on this list!).

Thanks again for your information. It is great to hear from people

that have been through all of this. Good luck to you and your

daughter, too.

Becky

>

> > Hello,

> >

> > Just wondering if anyone has had their child use knee splints at

> > night?

> >

> > My daughter is three. She was diagnosed with Pauci in early

> > September. We have been giving her Naproxen twice a day, PT twice

a

> > week (along with exercise at home every day and swimming three to

four

> > times a week). Her swelling went down initially a bit, but we

haven't

> > had much improvement since the beginning. Her range of motion for

> > bending has improved, but not for straightening. At this point, we

> > only see the arthritis in her right knee.

> >

> > Our PT recommended that we get a knee splint for nighttime use to

help

> > with this. We see the rheumy on Friday . . . has anyone else tried

> > this? I'm new to all of this and just appreciate hearing what

other

> > people have tried. I feel thankful to have the PT and rheumy that

we

> > have and feel confident in their choices for her treatment, and

mostly

> > just wondered if anyone in the same situation felt that this

helped.

> >

> > Thanks,

> >

> > Becky

> > daughter, Abby, Pauci, 3 years old

> >

>

November 6, 2006

Wow!

Thanks for your response. I'm hearing from a couple people now that

maybe it is time for a change in meds. We do see the doctor on

Friday, so I think I'm going to have time to prepare a few questions

about the next step. I'm sure the splint couldn't hurt, but maybe it

is time try some new medication, as well. I think I was really

hoping that we could do it all with the Naproxen and that we wouldn't

have to go any further.

I'm still in the somewhat denial phase, I think, where I'm thinking

it might still all just go away!

Was your daughter diagnosed with poly right away? Did she just have

one joint affected in the beginning, or many right away? I'm still

concerned, too, about what might happen next and how long before we

might expect anything else to happen. So far, we still have just one

swollen knee.

Thanks for your response and help; I appreciate being able to hear

what other people have found useful. I've been feeling a bit sad

today wondering what to do now.

Good luck to you and your daughter, too.

Becky

>

> Becky,

>

> My daughter used a wrist splint, and has had finger splints as

well. I

> do believe it helped to keep the muscles flexed in the right

position

> during the non-movement times at night. I guess I would suggest

> adjusting her medicine as well. If you have found little help from

her

> medication, and things have stagnated, use the medicine's that are

on

> the market. We were at the same point with my daughter wrist,

accepting

> that should could only move it so far, and then we added humira to

her

> cocktail, and she does cartwheels without pain.

>

> and Allie (10 poly)

>

> ________________________________

>

> From: [mailto: ] On

> Behalf Of jmm942000

> Sent: Monday, November 06, 2006 1:39 PM

>

> Subject: Knee splints at night?

>

> Hello,

>

> Just wondering if anyone has had their child use knee splints at

> night?

>

> My daughter is three. She was diagnosed with Pauci in early

> September. We have been giving her Naproxen twice a day, PT twice a

> week (along with exercise at home every day and swimming three to

four

> times a week). Her swelling went down initially a bit, but we

haven't

> had much improvement since the beginning. Her range of motion for

> bending has improved, but not for straightening. At this point, we

> only see the arthritis in her right knee.

>

> Our PT recommended that we get a knee splint for nighttime use to

help

> with this. We see the rheumy on Friday . . . has anyone else tried

> this? I'm new to all of this and just appreciate hearing what other

> people have tried. I feel thankful to have the PT and rheumy that

we

> have and feel confident in their choices for her treatment, and

mostly

> just wondered if anyone in the same situation felt that this

helped.

>

> Thanks,

>

> Becky

> daughter, Abby, Pauci, 3 years old

>

November 6, 2006

Becky, Your PT is not right. That knee may be normal again. I

can't say if an injection would be 100% effective or not. I can only

tell you our experience and the experience of lots of people I know.

I run a support group in our state, and our doctor gives my name out

to newly diagnosed patients. I get TONS of calls about injections.

I have seen many wonderful results. When you get an injection it may

last a day, a week, a month, a year, or forever. n's last wrist

injection was over 18 months ago, and they are fine now. The

benefits of an injection is that it may calm that knee down, and you

may be able to avoid stronger medication.

Our doctor would put the child under to do the injection. It is done

on an outpatient basis, and an injection into the knee might take

10-15 minutes. Then you would be allowed back into the room and help

your child wake up. Sometimes the little ones wake up a little

confused and they might cry for awhile. I recommend that you hold

them and rock them. Other children wake up just fine. Once they are

totally awake, about 30 minutes, you are allowed to go home. It is

recommended that you don't put weight on that joint for 24-48 hours.

It has taken n up to three days to see relief, but then the

swelling goes down and she can move her wrist pain free.

If the joint has a contracture, you may need further PT after the

injection. Our rheumy always tests the range of motion, while the

child is under, to see if there is a true contracture.

I hope this helps. (n, 17, systemic)

On Nov 6, 2006, at 1:38 PM, jmm942000 wrote:

> Hi ,

>

> Thanks for your response. We have actually just seen our rheumy

> once, when we first got the diagnosis, so at that time we started the

> Naproxen (which has now been about 8 weeks). So, an injection could

> be our next step. I've been reading a bit about that and am

> certainly nervous, but have received the impression that many people

> feel good about these shots, after seeing the shot help their

> children.

>

> Is this done in the office? Should we be prepared to possibly have

> this done on Friday? Or is it different with each doctor?

>

> Our PT feels that the swelling in her knee may never go back to the

> size of the other one. She also says that she isn't sure how much

> more change there will be in the straightening, either. I'm not sure

> if this is fairly typical, or if this is something that we can help?

> We are trying to keep her knee active and doing the exercises, but it

> doesn't seem to want to straighten. I know joint damaage is

> certainly a concern with her knee right now. I keep wishing we would

> have known sooner and could have done more (I bet I'm not the first

> one to say that on this list!).

>

> Thanks again for your information. It is great to hear from people

> that have been through all of this. Good luck to you and your

> daughter, too.

>

> Becky

>

> >

> > > Hello,

> > >

> > > Just wondering if anyone has had their child use knee splints at

> > > night?

> > >

> > > My daughter is three. She was diagnosed with Pauci in early

> > > September. We have been giving her Naproxen twice a day, PT twice

> a

> > > week (along with exercise at home every day and swimming three to

> four

> > > times a week). Her swelling went down initially a bit, but we

> haven't

> > > had much improvement since the beginning. Her range of motion for

> > > bending has improved, but not for straightening. At this point, we

> > > only see the arthritis in her right knee.

> > >

> > > Our PT recommended that we get a knee splint for nighttime use to

> help

> > > with this. We see the rheumy on Friday . . . has anyone else tried

> > > this? I'm new to all of this and just appreciate hearing what

> other

> > > people have tried. I feel thankful to have the PT and rheumy that

> we

> > > have and feel confident in their choices for her treatment, and

> mostly

> > > just wondered if anyone in the same situation felt that this

> helped.

> > >

> > > Thanks,

> > >

> > > Becky

> > > daughter, Abby, Pauci, 3 years old

> > >

> >

November 6, 2006

Becky,

Yes, it can be done in the office. It depends on the doctor, some do it right

away in office, others do with conscious sedation. Will your daugthers knee go

back to the 'normal' size. Yes, it can. Can the leg go back to its normal

flexibility. Yes. These are exciting times in the field of rheumatology with

more medications and treatments coming all of the time. Don't get discouraged.

You have a lot of options in front of you. I would not go with the splints. That

is an older treatment and I would not do that right away. There are many other

medications out there to try before splinting. No one wants to wear splints. My

daughter used to have knees that were disgustingly large but with her current

meds they aren't. Sometimes they are 'normal' looking, although she says they

hurt more then. The fluid from the swelling makes them hurt less.

Let us know what the doc says.

e, mom to joe 19 poly + lupus

jmm942000 <jmm942000@...> wrote:

Hi ,

Thanks for your response. We have actually just seen our rheumy

once, when we first got the diagnosis, so at that time we started the

Naproxen (which has now been about 8 weeks). So, an injection could

be our next step. I've been reading a bit about that and am

certainly nervous, but have received the impression that many people

feel good about these shots, after seeing the shot help their

children.

Is this done in the office? Should we be prepared to possibly have

this done on Friday? Or is it different with each doctor?

Our PT feels that the swelling in her knee may never go back to the

size of the other one. She also says that she isn't sure how much

more change there will be in the straightening, either. I'm not sure

if this is fairly typical, or if this is something that we can help?

We are trying to keep her knee active and doing the exercises, but it

doesn't seem to want to straighten. I know joint damaage is

certainly a concern with her knee right now. I keep wishing we would

have known sooner and could have done more (I bet I'm not the first

one to say that on this list!).

Thanks again for your information. It is great to hear from people

that have been through all of this. Good luck to you and your

daughter, too.

Becky

>

> > Hello,

> >

> > Just wondering if anyone has had their child use knee splints at

> > night?

> >

> > My daughter is three. She was diagnosed with Pauci in early

> > September. We have been giving her Naproxen twice a day, PT twice

a

> > week (along with exercise at home every day and swimming three to

four

> > times a week). Her swelling went down initially a bit, but we

haven't

> > had much improvement since the beginning. Her range of motion for

> > bending has improved, but not for straightening. At this point, we

> > only see the arthritis in her right knee.

> >

> > Our PT recommended that we get a knee splint for nighttime use to

help

> > with this. We see the rheumy on Friday . . . has anyone else tried

> > this? I'm new to all of this and just appreciate hearing what

other

> > people have tried. I feel thankful to have the PT and rheumy that

we

> > have and feel confident in their choices for her treatment, and

mostly

> > just wondered if anyone in the same situation felt that this

helped.

> >

> > Thanks,

> >

> > Becky

> > daughter, Abby, Pauci, 3 years old

> >

>

November 8, 2006

Without going under, a child can walk out of the office. It only takes 20

seconds, too. We did it that way and were all very happy about it. Our girl is

2. She had the injection in her knee.