New to Group

[Guest guest]

Hello Tim and welcome to the group.

Aquatic pt is physical therapy that is done in a swimming pool.

It's supposed to be a good form of therapy.

One that is gentle on the joints and provides a good form of exercise to the whole body.

I have done aquatic therapy in the past.

It was a very intense form of exercise.{ for me anyway}

Well,I hope that I've been able to help you.

TAKE AS BEST CARE AS YOU CAN AND BE SAFE

LARRY IN COWTOWN TEXAS

{THAT'S FT. WORTH DON'T YA KNOW}

thahalibut <thahalibut@...> wrote:

Thanks rob. What exactly is aquatic pt?TimREMEMBER ALL OF OUR MEN AND

WOMEN IN THE ARMED SERVICE OF OUR NATION

PRAY THAT THEY MAY BE SAFE

AND SOUND IN BODY AND MIND

[Guest guest]

Hello Tim and welcome to the group.

Aquatic pt is physical therapy that is done in a swimming pool.

It's supposed to be a good form of therapy.

One that is gentle on the joints and provides a good form of exercise to the whole body.

I have done aquatic therapy in the past.

It was a very intense form of exercise.{ for me anyway}

Well,I hope that I've been able to help you.

TAKE AS BEST CARE AS YOU CAN AND BE SAFE

LARRY IN COWTOWN TEXAS

{THAT'S FT. WORTH DON'T YA KNOW}

thahalibut <thahalibut@...> wrote:

Thanks rob. What exactly is aquatic pt?TimREMEMBER ALL OF OUR MEN AND

WOMEN IN THE ARMED SERVICE OF OUR NATION

PRAY THAT THEY MAY BE SAFE

AND SOUND IN BODY AND MIND

[Guest guest]

Hello Larry,

Yes I have heard of that. Since we don't have a pool it might be

difficult. Maybe our new therapy building might have one.? Thanks for

the welcome & watch out for Rita!

Tim

> Hello Tim and welcome to the group.

> Aquatic pt is physical therapy that is done in a swimming pool.

> It's supposed to be a good form of therapy.

> One that is gentle on the joints and provides a good form of

exercise to the whole body.

> I have done aquatic therapy in the past.

> It was a very intense form of exercise.{ for me anyway}

> Well,I hope that I've been able to help you.

> TAKE AS BEST CARE AS YOU CAN AND BE SAFE

> LARRY IN COWTOWN TEXAS

> {THAT'S FT. WORTH DON'T YA KNOW}

>

>

[Guest guest]

Hello Larry,

Yes I have heard of that. Since we don't have a pool it might be

difficult. Maybe our new therapy building might have one.? Thanks for

the welcome & watch out for Rita!

Tim

> Hello Tim and welcome to the group.

> Aquatic pt is physical therapy that is done in a swimming pool.

> It's supposed to be a good form of therapy.

> One that is gentle on the joints and provides a good form of

exercise to the whole body.

> I have done aquatic therapy in the past.

> It was a very intense form of exercise.{ for me anyway}

> Well,I hope that I've been able to help you.

> TAKE AS BEST CARE AS YOU CAN AND BE SAFE

> LARRY IN COWTOWN TEXAS

> {THAT'S FT. WORTH DON'T YA KNOW}

>

>

[Guest guest]

-Hi Tim welcome to the group sorry for the delay in welcoming you

but I have not been doing well. What kind of symtoms and problems

are they having with it? I have it in my neck and lower back also.

Not sure I can offer much but first I need to know what their

problems are to tell you anything. Sharon Group Owner

p.s pt never helped me I ended up in surgery for my neck problems

But that was not all I had wrong either.

-- In neck pain , " thahalibut "

<thahalibut@y...> wrote:

> Thanks rob. What exactly is aquatic pt?

>

> Tim

>

>

>

>

> > Tim,

> > welcome to the group. My name is rob, and i have had a couple

of

> back

> > surgeries. I dont know about spinal stenosis, but if it's an

> available

> > treatment for them then i recommend aquatic pt.

> > take care

> > rob in va

> >

> >

> >

[Guest guest]

-Hi Tim welcome to the group sorry for the delay in welcoming you

but I have not been doing well. What kind of symtoms and problems

are they having with it? I have it in my neck and lower back also.

Not sure I can offer much but first I need to know what their

problems are to tell you anything. Sharon Group Owner

p.s pt never helped me I ended up in surgery for my neck problems

But that was not all I had wrong either.

-- In neck pain , " thahalibut "

<thahalibut@y...> wrote:

> Thanks rob. What exactly is aquatic pt?

>

> Tim

>

>

>

>

> > Tim,

> > welcome to the group. My name is rob, and i have had a couple

of

> back

> > surgeries. I dont know about spinal stenosis, but if it's an

> available

> > treatment for them then i recommend aquatic pt.

> > take care

> > rob in va

> >

> >

> >

[Guest guest]

they throw you in a pool to do physical therapy. i found it to be less

stressful on my back. the next day - sore, but it was a good muscle sore.

It just seemed easier to work on strengthening the muscles i needed to

excercise. the excercises that they had me doing when i wasnt in the pool,

were excercises that i could do at home instead of missing work. i dont

know, just my opinion.

take care

rob in va

>From: " thahalibut " <thahalibut@...>

>Reply-neck pain

>neck pain

>Subject: Re: New to group

>Date: Wed, 21 Sep 2005 15:40:45 -0000

>

>Thanks rob. What exactly is aquatic pt?

>

>Tim

>

>

>

>

> > Tim,

> > welcome to the group. My name is rob, and i have had a couple of

>back

> > surgeries. I dont know about spinal stenosis, but if it's an

>available

> > treatment for them then i recommend aquatic pt.

> > take care

> > rob in va

> >

> >

> >

>

>

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

they throw you in a pool to do physical therapy. i found it to be less

stressful on my back. the next day - sore, but it was a good muscle sore.

It just seemed easier to work on strengthening the muscles i needed to

excercise. the excercises that they had me doing when i wasnt in the pool,

were excercises that i could do at home instead of missing work. i dont

know, just my opinion.

take care

rob in va

>From: " thahalibut " <thahalibut@...>

>Reply-neck pain

>neck pain

>Subject: Re: New to group

>Date: Wed, 21 Sep 2005 15:40:45 -0000

>

>Thanks rob. What exactly is aquatic pt?

>

>Tim

>

>

>

>

> > Tim,

> > welcome to the group. My name is rob, and i have had a couple of

>back

> > surgeries. I dont know about spinal stenosis, but if it's an

>available

> > treatment for them then i recommend aquatic pt.

> > take care

> > rob in va

> >

> >

> >

>

>

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Hi Sharon,

I am sorry you are not doing well & hope you feel better soon. My

father is in his lower back & has a hard time walking & has way too

many symptoms to list. In bed 99% of the time he still gets up a few

times a day to take a walk down the hall or ride the bike for a min or

2. He's in his 70's & his lower back Spinal Stenosis is just one of

his problems he has had for a few years.

My mothers Spinal Stenosis is in her neck, I think C3, 4, 5, 6, 7, &

8, from minor to moderate to severe. Main symptom is a very stiff neck

for long periods of time. The Doctor was very surprised she didn't

have more severe symptoms & said they will probably show soon &

suggested physical therapy. She tripped & fell on her face about 2

weeks ago but doesn't seem to have made the neck worse. Broken

glasses, 2 stitches, big black eye but the neck seems fine.

Thanks for the welcome!

Tim

> -Hi Tim welcome to the group sorry for the delay in welcoming you

> but I have not been doing well. What kind of symtoms and problems

> are they having with it? I have it in my neck and lower back also.

> Not sure I can offer much but first I need to know what their

> problems are to tell you anything. Sharon Group Owner

>

>

> p.s pt never helped me I ended up in surgery for my neck problems

> But that was not all I had wrong either.

>

>

>

[Guest guest]

Hi Sharon,

I am sorry you are not doing well & hope you feel better soon. My

father is in his lower back & has a hard time walking & has way too

many symptoms to list. In bed 99% of the time he still gets up a few

times a day to take a walk down the hall or ride the bike for a min or

2. He's in his 70's & his lower back Spinal Stenosis is just one of

his problems he has had for a few years.

My mothers Spinal Stenosis is in her neck, I think C3, 4, 5, 6, 7, &

8, from minor to moderate to severe. Main symptom is a very stiff neck

for long periods of time. The Doctor was very surprised she didn't

have more severe symptoms & said they will probably show soon &

suggested physical therapy. She tripped & fell on her face about 2

weeks ago but doesn't seem to have made the neck worse. Broken

glasses, 2 stitches, big black eye but the neck seems fine.

Thanks for the welcome!

Tim

> -Hi Tim welcome to the group sorry for the delay in welcoming you

> but I have not been doing well. What kind of symtoms and problems

> are they having with it? I have it in my neck and lower back also.

> Not sure I can offer much but first I need to know what their

> problems are to tell you anything. Sharon Group Owner

>

>

> p.s pt never helped me I ended up in surgery for my neck problems

> But that was not all I had wrong either.

>

>

>

[Guest guest]

Hi Rob,

What excercise did they have you doing at home? Can you explain

them or do you have a diagram? I think the sooner we start the

better, but we dont know where to start yet.

Thanks Rob.

Tim

> they throw you in a pool to do physical therapy. i found it to be

less

> stressful on my back. the next day - sore, but it was a good

muscle sore.

> It just seemed easier to work on strengthening the muscles i needed

to

> excercise. the excercises that they had me doing when i wasnt in

the pool,

> were excercises that i could do at home instead of missing work. i

dont

> know, just my opinion.

> take care

>

> rob in va

>

>

[Guest guest]

Hi Rob,

What excercise did they have you doing at home? Can you explain

them or do you have a diagram? I think the sooner we start the

better, but we dont know where to start yet.

Thanks Rob.

Tim

> they throw you in a pool to do physical therapy. i found it to be

less

> stressful on my back. the next day - sore, but it was a good

muscle sore.

> It just seemed easier to work on strengthening the muscles i needed

to

> excercise. the excercises that they had me doing when i wasnt in

the pool,

> were excercises that i could do at home instead of missing work. i

dont

> know, just my opinion.

> take care

>

> rob in va

>

>

[Guest guest]

ill try to explain a couple.

stand up against a wall (facing it) and push up against it with your pelvis

- hold for a few seconds and repeat.

lay down like your doing situps, with your knees bent and push down with

your stomach/pelvis.

its almost like starting a crunch (the muscles you use), but you dont come

up off the ground.

i dont know if im explaining them well. they are simple to do but... i

guess you should try them out first. you can feel it in your lower back im

just not sure if i explained it well.

sorry,

i will try and find my print out that they gave me (it was a while ago) for

some other excersises.

rob

>From: " thahalibut " <thahalibut@...>

>Reply-neck pain

>neck pain

>Subject: Re: New to group

>Date: Thu, 22 Sep 2005 12:52:55 -0000

>

>Hi Rob,

>

> What excercise did they have you doing at home? Can you explain

>them or do you have a diagram? I think the sooner we start the

>better, but we dont know where to start yet.

>

>Thanks Rob.

>

>Tim

>

>

>--- >

>

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfee®

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

ill try to explain a couple.

stand up against a wall (facing it) and push up against it with your pelvis

- hold for a few seconds and repeat.

lay down like your doing situps, with your knees bent and push down with

your stomach/pelvis.

its almost like starting a crunch (the muscles you use), but you dont come

up off the ground.

i dont know if im explaining them well. they are simple to do but... i

guess you should try them out first. you can feel it in your lower back im

just not sure if i explained it well.

sorry,

i will try and find my print out that they gave me (it was a while ago) for

some other excersises.

rob

>From: " thahalibut " <thahalibut@...>

>Reply-neck pain

>neck pain

>Subject: Re: New to group

>Date: Thu, 22 Sep 2005 12:52:55 -0000

>

>Hi Rob,

>

> What excercise did they have you doing at home? Can you explain

>them or do you have a diagram? I think the sooner we start the

>better, but we dont know where to start yet.

>

>Thanks Rob.

>

>Tim

>

>

>--- >

>

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfee®

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

Aqua

IS THE BEST!!!!!!!!! It saved my life it was the only

place I could go and have the pain decrease to

minimal. If they are able to have aqua physical

therapy ask their doc see what he says

sincerely Janine In Cali

--- Gehle <robgehle@...> wrote:

> they throw you in a pool to do physical therapy. i

> found it to be less

> stressful on my back. the next day - sore, but it

> was a good muscle sore.

> It just seemed easier to work on strengthening the

> muscles i needed to

> excercise. the excercises that they had me doing

> when i wasnt in the pool,

> were excercises that i could do at home instead of

> missing work. i dont

> know, just my opinion.

> take care

>

> rob in va

>

>

> >From: " thahalibut " <thahalibut@...>

> >Reply-neck pain

> >neck pain

> >Subject: Re: New to group

> >Date: Wed, 21 Sep 2005 15:40:45 -0000

> >

> >Thanks rob. What exactly is aquatic pt?

> >

> >Tim

> >

> >

> >

> >

> > > Tim,

> > > welcome to the group. My name is rob, and i

> have had a couple of

> >back

> > > surgeries. I dont know about spinal stenosis,

> but if it's an

> >available

> > > treatment for them then i recommend aquatic pt.

> > > take care

> > > rob in va

> > >

> > >

> > >

> >

> >

> >

>

>

_________________________________________________________________

> Express yourself instantly with MSN Messenger!

> Download today - it's FREE!

>

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Hi Tim, since I had alot of pain in my neck before my fusion I

learned that stretching and relaxation exercises were the best to

help relieve pain. Also the same for your dad and his back. I found

out that my stenisis is back in my back so I know how he feels

walking. I added some links that have some good stretching exercies

in them so you might check those out. But I can't say what is really

the best and what is not since they really need a dr to tell them

this. One thing I will STRESS is if it HURTS don't do it, the point

is to relieve the tension which in turn causes the pain but if you

overdo or do the wrong things you will just increase the pain. SO

tell them to start out slow and easy and just do a few things at a

time then work their way up. Thats what the PT had me do. I have

some pamplets that show exercises for both the neck and back if I

can scan them I will post them in the links or send them too you.

Will try and do that today. Hope they are feeling better but I

honestly think surgery will probably be what they need since

stenosis does not get any better it just gets worse as I know too

well. Best wishes Sharon Group Owner

> Hi Sharon,

>

> I am sorry you are not doing well & hope you feel better

soon. My

> father is in his lower back & has a hard time walking & has way

too

> many symptoms to list. In bed 99% of the time he still gets up a

few

> times a day to take a walk down the hall or ride the bike for a

min or

> 2. He's in his 70's & his lower back Spinal Stenosis is just one

of

> his problems he has had for a few years.

>

>

> My mothers Spinal Stenosis is in her neck, I think C3, 4, 5, 6, 7,

&

> 8, from minor to moderate to severe. Main symptom is a very stiff

neck

> for long periods of time. The Doctor was very surprised she didn't

> have more severe symptoms & said they will probably show soon &

> suggested physical therapy. She tripped & fell on her face about 2

> weeks ago but doesn't seem to have made the neck worse. Broken

> glasses, 2 stitches, big black eye but the neck seems fine.

>

> Thanks for the welcome!

>

> Tim

>

>

[Guest guest]

Hi Sharon,

Are you talking about the links in your previous post? Those where

great, & I printed out the exercises & stretches for them to look

over. We had some for the back already but not for the neck. The only

ones on the links looked like back & not neck stretches. I would

appreciate the scans for the back & especially the neck stretches.

How is your pain now since your fusion?

May your day be pain free

Tim

> Hi Tim, since I had alot of pain in my neck before my fusion I

> learned that stretching and relaxation exercises were the best to

> help relieve pain. Also the same for your dad and his back. I found

> out that my stenisis is back in my back so I know how he feels

> walking. I added some links that have some good stretching exercies

> in them so you might check those out. But I can't say what is

really

> the best and what is not since they really need a dr to tell them

> this. One thing I will STRESS is if it HURTS don't do it, the point

> is to relieve the tension which in turn causes the pain but if you

> overdo or do the wrong things you will just increase the pain. SO

> tell them to start out slow and easy and just do a few things at a

> time then work their way up. Thats what the PT had me do. I have

> some pamplets that show exercises for both the neck and back if I

> can scan them I will post them in the links or send them too you.

> Will try and do that today. Hope they are feeling better but I

> honestly think surgery will probably be what they need since

> stenosis does not get any better it just gets worse as I know too

> well. Best wishes Sharon Group Owner

>

[Guest guest]

In a message dated 11/13/2005 5:05:57 AM Eastern Standard Time,

mathewsmans_girl87@... writes:

hi my name is Elaina im 18 i have been having seizures since i was in

the 5th grade. i have no idea why i have them and for some reason

dilantin, depakote, and carbatrol havent worked. Dilantin worked for

years and then all of a sudden i have been having breakthroughs if

anyone has any advice for me i would appreciate it.

Elaina

..

..>>> Hiya Elains

I am going to send you offlist a file with some resources that have helped

my late son,Charlie.

Thanks for joining this group and keep posting your questions and your

progress.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Other than the AEDs, are you taking anything for nutritional support? I

tried for more than 20 years to get a handle on my seizures with various

AEDs before I gave up and started to look for something that might help.

Even if nothing worked, I wasn't going to be any worse off than I already

was and at least I wouldn't have to deal with the drug side effects. B

complex, taurine, magnesium, flaxseed oil and CoQ10 have been miraculous for

me. I haven't had a partial since I started to do this in May 2000 and I've

only had 3 grand mals in all of this time, with the last one being in

February 2004. It's been great! Are you at least taking a multivitamin

every day?

>From: " Elaina " <mathewsmans_girl87@...>

>Reply-

>

>Subject: [ ] new to group

>Date: Sun, 13 Nov 2005 02:39:56 -0000

>

>hi my name is Elaina im 18 i have been having seizures since i was in

>the 5th grade. i have no idea why i have them and for some reason

>dilantin, depakote, and carbatrol havent worked. Dilantin worked for

>years and then all of a sudden i have been having breakthroughs if

>anyone has any advice for me i would appreciate it.

>

>Elaina

>

>

>

>

>

>

>

>

[Guest guest]

>

> Other than the AEDs, are you taking anything for nutritional

support? I

> tried for more than 20 years to get a handle on my seizures with

various

> AEDs before I gave up and started to look for something that might

help.

> Even if nothing worked, I wasn't going to be any worse off than I

already

> was and at least I wouldn't have to deal with the drug side

effects. B

> complex, taurine, magnesium, flaxseed oil and CoQ10 have been

miraculous for

> me. I haven't had a partial since I started to do this in May

2000 and I've

> only had 3 grand mals in all of this time, with the last one being

in

> February 2004. It's been great! Are you at least taking a

multivitamin

> every day?

>

>

> >From: " Elaina " <mathewsmans_girl87@y...>

> >Reply-

> >

> >Subject: [ ] new to group

> >Date: Sun, 13 Nov 2005 02:39:56 -0000

> >

> >hi my name is Elaina im 18 i have been having seizures since i

was in

> >the 5th grade. i have no idea why i have them and for some reason

> >dilantin, depakote, and carbatrol havent worked. Dilantin worked

for

> >years and then all of a sudden i have been having breakthroughs if

> >anyone has any advice for me i would appreciate it.

> >

> >Elaina

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

In a message dated 11/13/2005 11:57:05 PM Eastern Standard Time,

mathewsmans_girl87@... writes:

I just now started thinking about actually taking something other

than my seizure meds. my boyfriend actually told me today that

magnesium is suposed to help with headaches so i thought about that.

and actually i dont take a daily vitamin i should probably start

doing that.

..

..>>> Magnesium is critically important to seizure control Low Magnesium

alone can cause seizures. Vitamin B6 helpsMagnesium do its thing. But your

brain also needs other nutrients like omega-3 fatty acids found in fish oil.

Hope this helps

Charlie's Mom

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

In a message dated 11/27/05 4:48:23 PM Central Standard Time,

bdwmom@... writes:

> HI All,

> I am new to the group and new to the world of JRA. My 2 year old has

> recently been " diagnosed " with systemic JRA. I have a couple of

> questions.

> We live in San , Texas and there is only one pedi Rheum. that

> does not take our insurance.......so we are being forced to another

> city. We are going to see Ruy Carrasco in Austin, Tx. Has anyone used

> him or heard of him?

>

> Second, how long have your kids taken predinsone and what dosage?

> Blake started on 20mg a day and we are currently tapering the dosage

> before we visit the rheum. in Austin. 20 sounds a little excessive to

> me- is that a normal dose to start off with?

>

> Are there any support groups of any kind in San or Austin?

>

> Thanks.

> (Blake 2, systemic)

>

Hi,

My 10 year old daughter has polyarticular jra. She was diagnosed about 3

years ago. We go see Dr. Cole in San .

Three years ago the nurse at Dr. Cole's got us to go to Jambalaya Jubilee in

Shreveport, Louisiana in the summer. We got tons of information and got to

talk to many parents and experts.

Last year a group was started in San . Since I live in South Texas I

could not join.

My daughter went through the Prednisone. The initial amount was alot but it

was to stimulate the body and to lessen the inflamation. My daughter could

not walk and could not hold a glass or fork. The Prednisone works fast to

lessen the inflamation but it is not that good for the child to have for a long

time. It was hard tapering. We had to reduce an ml. per week and once we

thought we had it beat she would start hurting and had to give her the

prednisone.

Currently my daughter in on the Folic Acid, Methotrexate and Enbrel.

Hope this helps.

o Salas

[Guest guest]

--Hi ,

Welcome to the group, while im sorry yo have had to join it, we are

glad to have you here.

My son was dx systemic over 2 1/2 years ago now. He was 5

at the time and is now 8. he has been on prednisone for nearly 2

years. Nick didnt need to go on prednisone until 6 months onto this.

the bad news is that hes still on it today. A lot of kids have a

hard time tapering off. Each time we have tapered Nicks down hes

flared and we have had to increase other meds and slowly try to

taper again. I think the doseage at starting all depends on the

rheumy and whats needed to control the symptoms. Nick was started at

10mg a day and we are currently down to 1.5mg although along the way

we have added, methatrexate, folic acid, indomethacin, prilosec and

just recently remicade infusions.

is Blake on other meds along with the prednisone??? hows he doing

now?? what was his onset like.

keep in touch, there are many systemic moms on this list who have

tons of experience.

Again, welcome,

Hugs Helen and (8,systemic)

- In , " bdwmom " <bdwmom@y...> wrote:

>

> HI All,

> I am new to the group and new to the world of JRA.. My 2 year old

has

> recently been " diagnosed " with systemic JRA. I have a couple of

> questions..

> We live in San , Texas and there is only one pedi Rheum.

that

> does not take our insurance.......so we are being forced to

another

> city. We are going to see Ruy Carrasco in Austin, Tx. Has anyone

used

> him or heard of him?

>

> Second, how long have your kids taken predinsone and what dosage?

> Blake started on 20mg a day and we are currently tapering the

dosage

> before we visit the rheum. in Austin. 20 sounds a little

excessive to

> me- is that a normal dose to start off with?

>

> Are there any support groups of any kind in San or Austin?

>

> Thanks.

> (Blake 2, systemic)

>

[Guest guest]

Thanks for responding Helen.

Right now Blake is only taking the predisnone. We are having some

Dr. issues right now that we are trying to get corrected. His

hematologist wants to start him on Methatrexate. I am just patiently

waiting to see a Rheum. Insurance issues with that. It seems like

an uphill battle since we started all this, but were taking it all in

stride. Luckily, Blake has a wonderful attitude about everything.

What do you know about Enbrel?

Thanks,

& Blake 2 Systemic

> >

> > HI All,

> > I am new to the group and new to the world of JRA.. My 2 year

old

> has

> > recently been " diagnosed " with systemic JRA. I have a couple of

> > questions..

> > We live in San , Texas and there is only one pedi Rheum.

> that

> > does not take our insurance.......so we are being forced to

> another

> > city. We are going to see Ruy Carrasco in Austin, Tx. Has

anyone

> used

> > him or heard of him?

> >

> > Second, how long have your kids taken predinsone and what

dosage?

> > Blake started on 20mg a day and we are currently tapering the

> dosage

> > before we visit the rheum. in Austin. 20 sounds a little

> excessive to

> > me- is that a normal dose to start off with?

> >

> > Are there any support groups of any kind in San or Austin?

> >

> > Thanks.

> > (Blake 2, systemic)

> >

>

[Guest guest]

- Hi and welcome to the group. I am sorry that your son has been

diagnosed with Systemic JRA. Our daughter, Hunter (7 years old), also has

systemic. The 20 mgs of Pred does sound high - but just how sick was he?

Hunter

started off with 15 mgs per day for 7 days, then we reduced it by to 7.5 for

7days

and then to 4 mgs for 7 days then to 2 and then Hunter flared and we stayed

on it for over a year flucuating between between 1 and 4. Finally we started

the MTX shots and she was off the pred. in no time. We have to travel two

hours to see our Ped Rhuemy. But is is sooooooooooooo worth it. He is in

Atlanta. What other meds is your son on? JRA stinks - systemic JRA stinks

stinks.

But be strong - and if we can help let us know? Sandi, Ken, Hunter (7

Systemic)