Hello, I'm New Here

[Guest guest]

THANKS FOR THE REPLY TO MY POST. I CONSIDER MYSELF MOST FORTUNATE THAT I HAVE NOT HAD ANY TYPE OF SPINAL SURGERY YET.I AM FACING A FUSION IN MY NECK AS I SAID IN MY LAST POST. I AM NOT TOO THRILLED AT THAT AT ALL.

IT IS SO GOOD TO HEAR FROM SOMEONE WHO IS ABLE MANAGE THEIR PAIN WITH MOTRIN AND EXCEDRIN .{EVEN IF IT IS ONLY 50 PERCENT OF THE TIME} I HAVE HAD TO TAKE THE HEAVY PAIN KILLERS FOR SO LONG THAT I HAVE FORGOTTEN WHAT IT'S LIKE NOT TO HAVE TO DO SO.

OH,BY THE WAY,WELCOME TO THE GROUP.

TAKE CARE,AND GOOD LUCK WITH YOUR REHAB FROM THE SURGERY.

LARRY

Diane & Dallas <ftrotter@...> wrote:

Larry,

I know you were not making light of my post. And, yes the 50% of the time the Motrin and Excedrin help, but I still consider myself fortunate. No back surgery is pleasant, and there are big hurdles for mostly everyone who have it.

Hope your pain improves, only someone who has been there can understand where you are.

Diane

Re: Hello, I'm new here

HELLO

WELL,I DON'T MEAN TO MAKE LIGHT OF YOUR POST ,BUT IF I COULD GET BY WITH JUST HAVING TO TAKE 800MG OF MOTRIN AND SOMETIMES EXCEDRIN FOR PAIN I THINK THAT I WOULD BE IN HOG HEAVEN.{BUT THAT'S JUST ME} FROM WHAT YOU SAID IT SOUNDS TO ME LIKE YOU ARE IN GOOD SHAPE ,PAIN MANAGEMENT WISE.

SORRY I CAN'T HELP YOU MORE THAN THAT, MAYBE SOMEONE ELSE CAN.

LARRYDiane & Dallas <ftrotter@...> wrote:

Hi,

I am new to the group, and have been looking for a group or chat where I could find out more about back surgery and how to strengthen my back afterward.

I had a fusion last March, the whole lumbar, and the one just above the lumbar. Six in all. I was in a cast for 4 months and had just begun physical therepy, when I had a ruptured colon, and had to have emergency for that. Things have never gotten back to where I was before the second surgery. The back surgeon told me not to do any more exercise, the surgeon that operated on my colon told me that I could exercise. Of course I was really confused by the two of them. So I listened to the back surgeon and quit my exercising. Well, from there (since September) I stopped doing mostly everything, especially if my back hurt in any way. I believe that I was being overly cautious. Consequently, I ended up in a deep depression, which developed into panic attacks, I was a real mess. I am a very active person and the frustration was unblievable. Whenever I had a problem I would call one of the surgeons, and which ever

one I called, he would tell me that it was probably something that I should talk to the other one about. Talk about being confused.

I finally went to my general practioner, and he said that I was on overload, to say the least. He put me on medication and things are getting better emotionally.

Now I have decided that excersice is the best thing I could be doing, so I have started walking again, also doing some floor exercises.

I'm wondering what others do to get the back strong again to get rid of some of the pain. The weakest part seems to be right in the small of my back. I hope to get at least somewhat pain free someday, but I'm also wondering just how long it takes. The only med's I am on right now for my back is Motrin (800mg), and occasionally Excedrin.

Any discussion or help someone could give me would be most welcome.

Diane

D and D AcresHome of " Star Struck"Son of "Cast Iron Camelot"

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT

[Guest guest]

EXCUSE ME, BUT I WAS NOT WRITING TO YOU . I RESPONDED TO SOMEONE WHO IS ABLE TO MANAGE THEIR PAIN WITH THE MEDICATION THAT SHE WROTE ABOUT.

YOU DO NOT KNOW ANYTHING ABOUT ME AND THEREFORE ARE NOT ENTITLED TO WRITE TO ME AS YOU DID.

I'M SORRY THAT YOU ARE IN SUCH A BAD POSITION AS YOU ARE AND ARE UNABLE TO TAKE ANY TYPE OF PAIN MEDICATION TO RELIEVE YOU PAIN. CHRONIC PAIN IS A VERY BAD THING TO HAVE TO LIVE WITH.

I DO NOT KNOW WHAT I WOULD DO IF I WERE UNABLE TO TAKE ANY PAIN MEDICATION OTHER THAN OVER THE COUNTER STUFF.

I NOTICED THAT YOU ARE NEW TO THIS GROUP.

AS I SAID YOU DO NOT KNOW ANYTHING ABOUT ME,SO I SUGGEST THAT YOU GO BACK IN THE MESSAGE BOARD AND READ SOME OF THE THINGS THAT I HAVE WRITTEN BEFORE YOU PASS JUDGMENT ON ME.

EVERYONE IN THIS GROUP IS ,OR SHOULD BE DEALING WITH CHRONIC PAIN ISSUES IN THEIR BACK AND NECK.

I AM GOING TO STOP NOW.

I HOPE THAT YOU WILL HAVE A BETTER DAY TOMORROW THAN YOU HAD TODAY.

LARRY {GULLEYWASHER}

dianarenee3 <diana33@...> wrote:

> HELLO > WELL,I DON'T MEAN TO MAKE LIGHT OF YOUR POST ,BUT IF I COULD GET BY WITH JUST HAVING TO TAKE 800MG OF MOTRIN AND SOMETIMES EXCEDRIN FOR PAIN I THINK THAT I WOULD BE IN HOG HEAVEN.{BUT THAT'S JUST ME} FROM WHAT YOU SAID IT SOUNDS TO ME LIKE YOU ARE IN GOOD SHAPE ,PAIN MANAGEMENT WISE.> SORRY I CAN'T HELP YOU MORE THAN THAT, MAYBE SOMEONE ELSE CAN.Well, in my opinion, it does make light of it. Just because someone can't take oxy, or any narcotics, because of stomach complications doesn't make their pain go away. The very last painkiller I was able to take just started causing side effects so now I'm stuck with strong words because I

can't take Motrin or even aspirin, either.How would your fusion have felt if all you could take post op is Tylenol? The pain is still there, it's not going anywhere, the bones are still cut, the nerves are still damaged and all you have is Tylenol? Period. Or what would happen to you right now, if your body rejected all forms of painkillers? Would you be "lucky" to be "down to nothing?"Sorry about the angry aspect of this email and I'll go away now, but what you said is exactly what my insurance company is saying, "she's not taking any painkillers, she's at MMI, she has no disability ...."And it still hurts like Hell ... but I'm "down" to 6 Tylenol a day. (remember folks Tylenol, Motrin, aspirin causes kidney failure just ask Alonzo Mourning.)Again, sorry about the anger in this email.

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT

[Guest guest]

EXCUSE ME, BUT I WAS NOT WRITING TO YOU . I RESPONDED TO SOMEONE WHO IS ABLE TO MANAGE THEIR PAIN WITH THE MEDICATION THAT SHE WROTE ABOUT.

YOU DO NOT KNOW ANYTHING ABOUT ME AND THEREFORE ARE NOT ENTITLED TO WRITE TO ME AS YOU DID.

I'M SORRY THAT YOU ARE IN SUCH A BAD POSITION AS YOU ARE AND ARE UNABLE TO TAKE ANY TYPE OF PAIN MEDICATION TO RELIEVE YOU PAIN. CHRONIC PAIN IS A VERY BAD THING TO HAVE TO LIVE WITH.

I DO NOT KNOW WHAT I WOULD DO IF I WERE UNABLE TO TAKE ANY PAIN MEDICATION OTHER THAN OVER THE COUNTER STUFF.

I NOTICED THAT YOU ARE NEW TO THIS GROUP.

AS I SAID YOU DO NOT KNOW ANYTHING ABOUT ME,SO I SUGGEST THAT YOU GO BACK IN THE MESSAGE BOARD AND READ SOME OF THE THINGS THAT I HAVE WRITTEN BEFORE YOU PASS JUDGMENT ON ME.

EVERYONE IN THIS GROUP IS ,OR SHOULD BE DEALING WITH CHRONIC PAIN ISSUES IN THEIR BACK AND NECK.

I AM GOING TO STOP NOW.

I HOPE THAT YOU WILL HAVE A BETTER DAY TOMORROW THAN YOU HAD TODAY.

LARRY {GULLEYWASHER}

dianarenee3 <diana33@...> wrote:

> HELLO > WELL,I DON'T MEAN TO MAKE LIGHT OF YOUR POST ,BUT IF I COULD GET BY WITH JUST HAVING TO TAKE 800MG OF MOTRIN AND SOMETIMES EXCEDRIN FOR PAIN I THINK THAT I WOULD BE IN HOG HEAVEN.{BUT THAT'S JUST ME} FROM WHAT YOU SAID IT SOUNDS TO ME LIKE YOU ARE IN GOOD SHAPE ,PAIN MANAGEMENT WISE.> SORRY I CAN'T HELP YOU MORE THAN THAT, MAYBE SOMEONE ELSE CAN.Well, in my opinion, it does make light of it. Just because someone can't take oxy, or any narcotics, because of stomach complications doesn't make their pain go away. The very last painkiller I was able to take just started causing side effects so now I'm stuck with strong words because I

can't take Motrin or even aspirin, either.How would your fusion have felt if all you could take post op is Tylenol? The pain is still there, it's not going anywhere, the bones are still cut, the nerves are still damaged and all you have is Tylenol? Period. Or what would happen to you right now, if your body rejected all forms of painkillers? Would you be "lucky" to be "down to nothing?"Sorry about the angry aspect of this email and I'll go away now, but what you said is exactly what my insurance company is saying, "she's not taking any painkillers, she's at MMI, she has no disability ...."And it still hurts like Hell ... but I'm "down" to 6 Tylenol a day. (remember folks Tylenol, Motrin, aspirin causes kidney failure just ask Alonzo Mourning.)Again, sorry about the anger in this email.

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT

[Guest guest]

EXCUSE ME, BUT I WAS NOT WRITING TO YOU . I RESPONDED TO SOMEONE WHO IS ABLE TO MANAGE THEIR PAIN WITH THE MEDICATION THAT SHE WROTE ABOUT.

YOU DO NOT KNOW ANYTHING ABOUT ME AND THEREFORE ARE NOT ENTITLED TO WRITE TO ME AS YOU DID.

I'M SORRY THAT YOU ARE IN SUCH A BAD POSITION AS YOU ARE AND ARE UNABLE TO TAKE ANY TYPE OF PAIN MEDICATION TO RELIEVE YOU PAIN. CHRONIC PAIN IS A VERY BAD THING TO HAVE TO LIVE WITH.

I DO NOT KNOW WHAT I WOULD DO IF I WERE UNABLE TO TAKE ANY PAIN MEDICATION OTHER THAN OVER THE COUNTER STUFF.

I NOTICED THAT YOU ARE NEW TO THIS GROUP.

AS I SAID YOU DO NOT KNOW ANYTHING ABOUT ME,SO I SUGGEST THAT YOU GO BACK IN THE MESSAGE BOARD AND READ SOME OF THE THINGS THAT I HAVE WRITTEN BEFORE YOU PASS JUDGMENT ON ME.

EVERYONE IN THIS GROUP IS ,OR SHOULD BE DEALING WITH CHRONIC PAIN ISSUES IN THEIR BACK AND NECK.

I AM GOING TO STOP NOW.

I HOPE THAT YOU WILL HAVE A BETTER DAY TOMORROW THAN YOU HAD TODAY.

LARRY {GULLEYWASHER}

dianarenee3 <diana33@...> wrote:

> HELLO > WELL,I DON'T MEAN TO MAKE LIGHT OF YOUR POST ,BUT IF I COULD GET BY WITH JUST HAVING TO TAKE 800MG OF MOTRIN AND SOMETIMES EXCEDRIN FOR PAIN I THINK THAT I WOULD BE IN HOG HEAVEN.{BUT THAT'S JUST ME} FROM WHAT YOU SAID IT SOUNDS TO ME LIKE YOU ARE IN GOOD SHAPE ,PAIN MANAGEMENT WISE.> SORRY I CAN'T HELP YOU MORE THAN THAT, MAYBE SOMEONE ELSE CAN.Well, in my opinion, it does make light of it. Just because someone can't take oxy, or any narcotics, because of stomach complications doesn't make their pain go away. The very last painkiller I was able to take just started causing side effects so now I'm stuck with strong words because I

can't take Motrin or even aspirin, either.How would your fusion have felt if all you could take post op is Tylenol? The pain is still there, it's not going anywhere, the bones are still cut, the nerves are still damaged and all you have is Tylenol? Period. Or what would happen to you right now, if your body rejected all forms of painkillers? Would you be "lucky" to be "down to nothing?"Sorry about the angry aspect of this email and I'll go away now, but what you said is exactly what my insurance company is saying, "she's not taking any painkillers, she's at MMI, she has no disability ...."And it still hurts like Hell ... but I'm "down" to 6 Tylenol a day. (remember folks Tylenol, Motrin, aspirin causes kidney failure just ask Alonzo Mourning.)Again, sorry about the anger in this email.

DON'T WORRY ABOUT THE SMALL STUFF.

LIFE IS TOO SHORT FOR THAT

[Guest guest]

First off I have been on this group for nearly a year. (I answer most of the emails off list. Offering advice ONLY when I have something positive to say or know what I'm talking about.) <Edited >

You might have been talking to someone else but I still took it as an attack and i get that enough from the system. Next time, if you going to express yourself negatively think about it twice. I try to 8 hour rule.

Now no one else on this list needs to be subjected to either your attitude nor my admitted anger ... So I will go away now. Even if I stay on this list I will not read nor answer anything else you post, as your request.

Be Well,

There are none so enslaved as those who falsely believe they are free. -- Goethe

" 'This is the worst government the US has ever had in its more than 200 years of history' Nobel Laureate (economics) A. Akerlof" Gordog

[Guest guest]

First off I have been on this group for nearly a year. (I answer most of the emails off list. Offering advice ONLY when I have something positive to say or know what I'm talking about.) <Edited >

You might have been talking to someone else but I still took it as an attack and i get that enough from the system. Next time, if you going to express yourself negatively think about it twice. I try to 8 hour rule.

Now no one else on this list needs to be subjected to either your attitude nor my admitted anger ... So I will go away now. Even if I stay on this list I will not read nor answer anything else you post, as your request.

Be Well,

There are none so enslaved as those who falsely believe they are free. -- Goethe

" 'This is the worst government the US has ever had in its more than 200 years of history' Nobel Laureate (economics) A. Akerlof" Gordog

[Guest guest]

First off I have been on this group for nearly a year. (I answer most of the emails off list. Offering advice ONLY when I have something positive to say or know what I'm talking about.) <Edited >

You might have been talking to someone else but I still took it as an attack and i get that enough from the system. Next time, if you going to express yourself negatively think about it twice. I try to 8 hour rule.

Now no one else on this list needs to be subjected to either your attitude nor my admitted anger ... So I will go away now. Even if I stay on this list I will not read nor answer anything else you post, as your request.

Be Well,

There are none so enslaved as those who falsely believe they are free. -- Goethe

" 'This is the worst government the US has ever had in its more than 200 years of history' Nobel Laureate (economics) A. Akerlof" Gordog

[Guest guest]

Dear Annie, Welcome to the group. There are many people on the list with

younger children with pauci and poly, and I am sure they will chime in to

help you. They probably will have some very good suggestions about school

as well. I have been with this group for five years and have learned so, so

much here. Also, you are not a bad mom, but a great mom for trying to get

as educated as you can, and by looking for support. How would any of us

know that this would attack our child? All children complain of pains

occasionally, and that doesn't mean that they have jra. Again, welcome.

(n, 15, systemic)

Hello, I'm new here

>

>

>

> I'm Annie and my daughter nne was diagnosed with pauciarticular

> JRA a couple of weeks ago. She's 6.5 years old. For now it's only

> showing up strongly in her ankle, but her rhumatologist suspects it's

> also in one of her knees and wrists. She's on 250mg of naproxen twice

> a day, but I'm not sure it's doing any good. I'll take her to the eye

> doctor to get checked for the eye condition tomorrow.

>

> I'm sorry I don't have all the lingo down yet. I'm trying to not let

> on to her or my husband, but I'm really worried about this. I also

> feel guilty that I didn't take her seriously when she complained of

> her ankle hurting repeatedly months ago. She's had a terrible time

> with " growing pains " for a long time too, who knows if that was

> related or not, but I'd give her a tylenol and a pat on the back and

> that was that. I know I'm a good mom, so why didn't I pay attention

> more sooner?

>

> Anyway, there is a question in all of this: I met with her first

> grade teacher yesterday and nne has been having a problem

> sitting on the mat. She can't cross her legs because it hurts her

> ankle, but she can't keep her legs straight because the mat is small

> and there are kids in front of her. Also her foot sometimes gets

> bumped by other kids and that hurts so much it makes her cry. So the

> teacher is asking me how to resolve this and I didn't come up with

> anything brilliant. Teacher said she'd let her get up first so she

> can get back to her table before any of the other kids have a chance

> to bump her. I mentioned she might need to sit on a chair, but I

> could tell nne didn't want to do anything different than the

> other kids, so I dropped that. How do you deal with that? She's

> likely to get bumped and shuved and kicked quite a bit at school, I

> know I was. She's a tough cookie and won't cry if she can help it,

> and she doesn't want to appear different, but how do we deal with

> normal school things?

>

> Thanks for reading and thanks for your posts, I've been going through

> them and it's your fault I'm still in my pyjamas at almost lunch time!

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Annie,

My heart goes out to you, as a mom of a 2 year old I get chills reading about

things to come. How is nne when sitting with her legs bent in front of her

with her arms around her shins for support? I know I sit like that because my

back hurts otherwise. Is this a position she can sit comfortably in for a few

minutes? Otherwise, I know my daughter likes to sit with her legs bent to the

side like she is posing for a picture, maybe that is not a painful position. I

will try and watch sitting to see if I can come up with any suggestions.

Maybe the teacher can make a game of it, letting the students pick a new

position to sit in every day, then some of the kids will find it awkward to sit

and some won't, but it will be like a " game " so it will be okay to sit

differently.

Hope theses help! Tara and 2 (poly)

Hello, I'm new here

I'm Annie and my daughter nne was diagnosed with pauciarticular

JRA a couple of weeks ago. She's 6.5 years old. For now it's only

showing up strongly in her ankle, but her rhumatologist suspects it's

also in one of her knees and wrists. She's on 250mg of naproxen twice

a day, but I'm not sure it's doing any good. I'll take her to the eye

doctor to get checked for the eye condition tomorrow.

I'm sorry I don't have all the lingo down yet. I'm trying to not let

on to her or my husband, but I'm really worried about this. I also

feel guilty that I didn't take her seriously when she complained of

her ankle hurting repeatedly months ago. She's had a terrible time

with " growing pains " for a long time too, who knows if that was

related or not, but I'd give her a tylenol and a pat on the back and

that was that. I know I'm a good mom, so why didn't I pay attention

more sooner?

Anyway, there is a question in all of this: I met with her first

grade teacher yesterday and nne has been having a problem

sitting on the mat. She can't cross her legs because it hurts her

ankle, but she can't keep her legs straight because the mat is small

and there are kids in front of her. Also her foot sometimes gets

bumped by other kids and that hurts so much it makes her cry. So the

teacher is asking me how to resolve this and I didn't come up with

anything brilliant. Teacher said she'd let her get up first so she

can get back to her table before any of the other kids have a chance

to bump her. I mentioned she might need to sit on a chair, but I

could tell nne didn't want to do anything different than the

other kids, so I dropped that. How do you deal with that? She's

likely to get bumped and shuved and kicked quite a bit at school, I

know I was. She's a tough cookie and won't cry if she can help it,

and she doesn't want to appear different, but how do we deal with

normal school things?

Thanks for reading and thanks for your posts, I've been going through

them and it's your fault I'm still in my pyjamas at almost lunch time!

[Guest guest]

Hi Annie,

Sorry to hear about your daughter nne. My son also has a hard time

sitting on the classroom floor, and he didn't want to sit in a chair and

be different from the other kids. The teacher allows him to lean against

the wall in the classroom, or even lie down as long as he is paying

attention to her. I have found it's important to keep the lines of

communication open with the teachers. Good luck. (and Ezra, 8 year

old systemic)

----- Original Message Follows -----

> I'm Annie and my daughter nne was diagnosed with pauciarticular

> JRA a couple of weeks ago. She's 6.5 years old. For now it's only

> showing up strongly in her ankle, but her rhumatologist suspects it's

> also in one of her knees and wrists. She's on 250mg of naproxen twice

> a day, but I'm not sure it's doing any good. I'll take her to the eye

> doctor to get checked for the eye condition tomorrow.

>

> I'm sorry I don't have all the lingo down yet. I'm trying to not let

> on to her or my husband, but I'm really worried about this. I also

> feel guilty that I didn't take her seriously when she complained of

> her ankle hurting repeatedly months ago. She's had a terrible time

> with " growing pains " for a long time too, who knows if that was

> related or not, but I'd give her a tylenol and a pat on the back and

> that was that. I know I'm a good mom, so why didn't I pay attention

> more sooner?

>

> Anyway, there is a question in all of this: I met with her first

> grade teacher yesterday and nne has been having a problem

> sitting on the mat. She can't cross her legs because it hurts her

> ankle, but she can't keep her legs straight because the mat is small

> and there are kids in front of her. Also her foot sometimes gets

> bumped by other kids and that hurts so much it makes her cry. So the

> teacher is asking me how to resolve this and I didn't come up with

> anything brilliant. Teacher said she'd let her get up first so she

> can get back to her table before any of the other kids have a chance

> to bump her. I mentioned she might need to sit on a chair, but I

> could tell nne didn't want to do anything different than the

> other kids, so I dropped that. How do you deal with that? She's

> likely to get bumped and shuved and kicked quite a bit at school, I

> know I was. She's a tough cookie and won't cry if she can help it,

> and she doesn't want to appear different, but how do we deal with

> normal school things?

>

> Thanks for reading and thanks for your posts, I've been going through

> them and it's your fault I'm still in my pyjamas at almost lunch time!

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Annie - welcome to the website. Regarding the naproxen - is your daughter

taking Zantac or any other drug that will prevent the naproxen from upsetting

your daughter's stomach. Check with your doctor alot of our kids can't take

naproxen because of stomach problems. Our Hunter (6 years old, Systemic)

takes it just fine but that was only after they started the Zantac. The

naproxen

has helped with the pain but it has not slowed down the disease. Hunter now

takes methotrexate and a small dose of predisone (hope we come off this soon).

It will take time for these drugs to work - try warm baths in the AM and do

range of motion exercises. Now as far as the schools goes - get a 504 plan

going. Talk with your teacher about it. We are here in Georgia and it has

helped alot. We have a plan to address almost any needs that could arise on any

given day for Hunter. The teacher, her Rheumy, the school nurse, her dad and I

and Hunter and the Principal developed this plan. It helps Hunter to get

through the day as painless and normal as possible. Hope this has helped. Sandi

Ken Hunter (Systemic 6)

[Guest guest]

Annie-

Don't feel guilty. My daughter was diagnosed at 17 months. I'd commented

off and on for a couple of months about her walking funny once in a while or

does it look like one leg's longer than the other. It wasn't until she limped

into my room one morning and literally fell over because her knee was so bent

and

swollen that I realized there was really something wrong.

I have no brilliant ideas about the sitting issue. I'd think the chair would

be best, but I understand how she wouldn't want to feel different.

Hopefully, you'll be able to get her arthritis under control so it's no longer

an issue

:-) Naprosyn never did a lot for . If it looks like other joints are

starting to be affected, you might want to think about a DMARD. When 's

arthritis started to move around, methotrexate stopped it right in its tracks.

It's scary to make that choice, but the difference can be truly amazing.

Diane (, 5, pauci, iritis -- all in remission)

[Guest guest]

Hi, Annie and welcome to the list. You will find lots of support and

information here. Don't worry about not reacting fast enough. I let my

son walk for nearly a month with a chipped knee cap before I took him to

the orthopaedic surgeon. This is the injury which the rheumy believes

triggered his JRA. When things like this happen, I call them " my mother

of the year " moments. LOL! We all do it. Who would think that there was

anything as seriously wrong as JRA at first? went for 7 months

before a dr finally said JRA. And we had seen various specialists who

swore it was always something else. So if they don't know, how are we

supposed to? My favorite " mother of the year " moment came for me when my

oldest dd ran in the house and said she had hit in the head with a

baseball bat. They were 8 and 5 at the time and I knew we only had

plastic bats. So I laughed and said " Is there any blood? " Not worried at

all. Needless to say, a neighbor kid had brought over an aluminum bat

and my dd swung that. Of course, ended up with 9 stitches in his

forehead and I had a massive dose of guilt because of what had happened.

So you see, we all have our moments! LOL

As the meds begin to work, or different types are tried, your dd should

better able to move. For now, the chair is an idea that would help, or

perhaps letting her sit more to the side of the group would work. My

son's jra also began in his ankle. The knee injury flipped the switch so

to speak. He had a hard time walking and running was impossible. Now, he

can do all of that. It can get better with treatment. I know our kids

put up with a lot so that they don't get perceived as different from

everyone else. It is good you are getting her eyes checked. That is very

important. Good luck to you and your family. Ask any questions you might

have, and feel free to vent away when you are frustrated. That is what

we are here for. Everyone here on this list understands exactly how you

feel in ways others, even family and friends, may not. Michele (

17, pauci & spondy)

Hello, I'm new here

I'm Annie and my daughter nne was diagnosed with pauciarticular

JRA a couple of weeks ago. She's 6.5 years old. For now it's only

showing up strongly in her ankle, but her rhumatologist suspects it's

also in one of her knees and wrists. She's on 250mg of naproxen twice

a day, but I'm not sure it's doing any good. I'll take her to the eye

doctor to get checked for the eye condition tomorrow.

I'm sorry I don't have all the lingo down yet. I'm trying to not let

on to her or my husband, but I'm really worried about this. I also

feel guilty that I didn't take her seriously when she complained of

her ankle hurting repeatedly months ago. She's had a terrible time

with " growing pains " for a long time too, who knows if that was

related or not, but I'd give her a tylenol and a pat on the back and

that was that. I know I'm a good mom, so why didn't I pay attention

more sooner?

Anyway, there is a question in all of this: I met with her first

grade teacher yesterday and nne has been having a problem

sitting on the mat. She can't cross her legs because it hurts her

ankle, but she can't keep her legs straight because the mat is small

and there are kids in front of her. Also her foot sometimes gets

bumped by other kids and that hurts so much it makes her cry. So the

teacher is asking me how to resolve this and I didn't come up with

anything brilliant. Teacher said she'd let her get up first so she

can get back to her table before any of the other kids have a chance

to bump her. I mentioned she might need to sit on a chair, but I

could tell nne didn't want to do anything different than the

other kids, so I dropped that. How do you deal with that? She's

likely to get bumped and shuved and kicked quite a bit at school, I

know I was. She's a tough cookie and won't cry if she can help it,

and she doesn't want to appear different, but how do we deal with

normal school things?

Thanks for reading and thanks for your posts, I've been going through

them and it's your fault I'm still in my pyjamas at almost lunch time!

[Guest guest]

Hi Annie,

Please don't beat yourself up over any guilty feelings you may have.We all

have guilt stories to share.My first one was when my son got so sick I thought

he wasn't hungry when in fact he was starving and he couldn't hold a fork,spoon

or cup.We had to feed him like a baby.The second was when he went to pee in

the master bedroom and couldn't get the door open and was traped inside.I don't

know how long he screamed but when I finaly found him he was hysterical.

Sorry I don't have any brilliant ideas about sitting arangements.These kids

are strong and indipendent and want to be like everyone else.Sounds like the

teacher wants to help,which is great.Sitting on the outside sounds good and

early rising to avoid the rush will help.

Set up an IEP meeting with the school becuase it gives your child rights and

accomodates your childs needs in written law.

Hugs

Beki and 6 systemic

[Guest guest]

Annie.. I too am new to this list, even though my daughter has had

JRA for about 3 years now. When she was just learning how to walk,

she always threw one leg around to the side. I took her to the

orthopedic doc and he said that she would outgrow it. Looking back,

I have wondered for a long time if that was the start of her

problems. Then about two months before her diagnosis she would wake

up with a stiff and painful ankle. Her primary care doc took x-rays

and said that she just sprained it. Well the " sprain " never went

away so I took her back and told them that I wanted a Rh factor and

sed rate drawn on her. ( I had JRA as a kid and my mom said that she

was presenting the same way I did). Her sed rate came back elevated.

The doc sent me a note in the mail stating that it was elevated and

probably like that because she was sick ( which she wasn't) I then

told the doc that I wanted a referral to a pediatric

rheumatologist. She now sees that same doc that I had seen as a

child.

As far as the school thing goes, I can understand the not

wanting to sit on a chair. is the same way. Right now we have

her athritis under control and she has been flare free for almost a

year now. She is currently on enbrel and we have been able to

stretch the shots out to every other week. We just graduated to

going to the doc every 3 months instead of every 8 weeks. She has

had in the past cortisone injections in both knees and has been put

on prednison therapy once. You have no reason to feel guilty. In

the beginning I did the same thing. You need to share your concerns

with your husband. Do not take all of this on yourself. Having a

child with JRA can be hard on everyone in the family, and the best

way I have found to deal with it is to talk about it. I hope all

went well at the eye doctors appt. take care.. Emilie

>

>

> I'm Annie and my daughter nne was diagnosed with

pauciarticular

> JRA a couple of weeks ago. She's 6.5 years old. For now it's only

> showing up strongly in her ankle, but her rhumatologist suspects

it's

> also in one of her knees and wrists. She's on 250mg of naproxen

twice

> a day, but I'm not sure it's doing any good. I'll take her to the

eye

> doctor to get checked for the eye condition tomorrow.

>

> I'm sorry I don't have all the lingo down yet. I'm trying to not

let

> on to her or my husband, but I'm really worried about this. I also

> feel guilty that I didn't take her seriously when she complained

of

> her ankle hurting repeatedly months ago. She's had a terrible time

> with " growing pains " for a long time too, who knows if that was

> related or not, but I'd give her a tylenol and a pat on the back

and

> that was that. I know I'm a good mom, so why didn't I pay

attention

> more sooner?

>

> Anyway, there is a question in all of this: I met with her first

> grade teacher yesterday and nne has been having a problem

> sitting on the mat. She can't cross her legs because it hurts her

> ankle, but she can't keep her legs straight because the mat is

small

> and there are kids in front of her. Also her foot sometimes gets

> bumped by other kids and that hurts so much it makes her cry. So

the

> teacher is asking me how to resolve this and I didn't come up with

> anything brilliant. Teacher said she'd let her get up first so she

> can get back to her table before any of the other kids have a

chance

> to bump her. I mentioned she might need to sit on a chair, but I

> could tell nne didn't want to do anything different than the

> other kids, so I dropped that. How do you deal with that? She's

> likely to get bumped and shuved and kicked quite a bit at school,

I

> know I was. She's a tough cookie and won't cry if she can help it,

> and she doesn't want to appear different, but how do we deal with

> normal school things?

>

> Thanks for reading and thanks for your posts, I've been going

through

> them and it's your fault I'm still in my pyjamas at almost lunch

time!

[Guest guest]

Thank you so much for the reassuring words everyone. You guys are

wonderful! We saw the eye doctor today and he says nne's eyes

are perfect. So far so good. We'll see him again in 3 months and hope

for the best. I'm so grateful for the suggestions about school, I

didn't know there were programs to cope with children with

dissabilities, shows you how clueless I've been about this. I was

talking to a church friend and it turns out her step daughter has

pauciarticular JRA also. She's quite a bit older (13 I think) but it

was really good for nne to hear that someone we know has this

too. I've been reading up on Naproxen, sounds like a harmless enough

drug. It hasn't been a miracle drug, but I do think she's limping

less and the swelling is down some.

I've got another question for you. Does climate and weather affect

JRA? Is humidity more important than temperature, or does it matter?

Thanks, I'll keep reading!

[Guest guest]

--HI Annie,

I know this is another late welcome, but Welcome anyway!! )))

its important to meet with the school and start the process for a

IEP for your daughter. it will help her now and in the future and

make things so much easier at school for her.

Unfotunatly, you might have to start " educating " the school too,

unless they have 1st hand experience with JRA. My sons school has

been amazing at meeting his needs.

Hugs Helen and (7,systemic)

- In , " jolimont_2000 " <jolimont@h...> wrote:

>

>

> I'm Annie and my daughter nne was diagnosed with

pauciarticular

> JRA a couple of weeks ago. She's 6.5 years old. For now it's only

> showing up strongly in her ankle, but her rhumatologist suspects

it's

> also in one of her knees and wrists. She's on 250mg of naproxen

twice

> a day, but I'm not sure it's doing any good. I'll take her to the

eye

> doctor to get checked for the eye condition tomorrow.

>

> I'm sorry I don't have all the lingo down yet. I'm trying to not

let

> on to her or my husband, but I'm really worried about this. I also

> feel guilty that I didn't take her seriously when she complained

of

> her ankle hurting repeatedly months ago. She's had a terrible time

> with " growing pains " for a long time too, who knows if that was

> related or not, but I'd give her a tylenol and a pat on the back

and

> that was that. I know I'm a good mom, so why didn't I pay

attention

> more sooner?

>

> Anyway, there is a question in all of this: I met with her first

> grade teacher yesterday and nne has been having a problem

> sitting on the mat. She can't cross her legs because it hurts her

> ankle, but she can't keep her legs straight because the mat is

small

> and there are kids in front of her. Also her foot sometimes gets

> bumped by other kids and that hurts so much it makes her cry. So

the

> teacher is asking me how to resolve this and I didn't come up with

> anything brilliant. Teacher said she'd let her get up first so she

> can get back to her table before any of the other kids have a

chance

> to bump her. I mentioned she might need to sit on a chair, but I

> could tell nne didn't want to do anything different than the

> other kids, so I dropped that. How do you deal with that? She's

> likely to get bumped and shuved and kicked quite a bit at school,

I

> know I was. She's a tough cookie and won't cry if she can help it,

> and she doesn't want to appear different, but how do we deal with

> normal school things?

>

> Thanks for reading and thanks for your posts, I've been going

through

> them and it's your fault I'm still in my pyjamas at almost lunch

time!

[Guest guest]

,

Welcome. I too had my Harrington rods in 1969 and taken out 2 yrs later.

My lower curve has gotten back to 65 deg.

I also live in Atlanta & have thought about going to the Emory Spine Center (I

work at Emory Eastside).

You can e-mail me directly at

chasjoyt@...

& maybe we can meet up or at least talk.

Best wishes,

Joyce- RN Atlanta

[Guest guest]

Hi Joyce.

I don't know what my curves have degenerated to. No one has told me

and I didn't know to ask. I do know that I have lost ALL the height I

gained from my surgeries years ago. In fact, I am now 1/2 " shorter

than before I had my first surgery at age 17!!.

I will definitely email you directly. Thanks for responding.

J

Atlanta

[Guest guest]

Welcome Audra,

I am homeschooling as well. I have one daughter who we are still

trying to get sorted out. She has several autoimmune things going on,

including some type of arthritis, possibly psoriatic. I am glad your

daughter is doing better!

Ruth in TN

[Guest guest]

Ruth,

How old is your daughter? How much school do you get done in a flare-

up? What chores does your daughter do, and what do you expect daily?

Thanks,

Audra

>

> Welcome Audra,

>

> I am homeschooling as well. I have one daughter who we are still

>

[Guest guest]

Hi Audra,

Jemma is 13. At the moment, her arthritis is just in her fingers. So

pretty much, we just do more oral work rather than written. We use the

Ambleside Online curriculum which focuses more on reading and is very

adaptable.. She does like to write stories, however. She uses the

computer for that and to do essays for school. That is how I

originally noticed her problems. I was trying to help her learn to

type correctly, and she did not have the flexibility in her fingers to

do it. So for now I just let her type however. When she writes with a

pencil, it looks atrocious.

Chores I am not so good at managing. I tend to let things go a bit and

then corral help to fix it. <grin> Jemma helps in the kitchen and with

vacuuming. We've been lucky so far that she does not have much pain,

just stiffness and what she describes as " burning " . We are still early

on in dealing with this. She has her next appointment on Tuesday.

Hopefully, we will find out more than or get a referral to a rheumy.

Ruth in TN

> >

> > Welcome Audra,

> >

> > I am homeschooling as well. I have one daughter who we are still

> >

>

[Guest guest]

Hi Lynda,

I am so sorry that you are suffering so much. I am also have scoliosis, my " C "

curve was corrected 30 years ago when I was 17. I currently am dealing with

lower back pain and pain in my right hip and leg. I have also had to have a

synovial cyst in my spine ruptured early last year as it was pressing on my

spinal column and causing me tremendous pain.

That said, I am not dealing with the issues that you have, but I know of two

other groups that included many members who can relate to what you are going

through. The groups are called: and

.

Many people have been operated on for scoliosis and some of those people found

that they were worse off after surgery, or that they were better but eventually

developed other problems. I found these groups a year ago when I was trying to

figure out what was going on with my back. There are many people in both groups

that are extremely supportive, who understand what you are going through, and

can direct you to information about scoliosis and to surgeons who may be able to

help you.

I wish you all the best and hope you are able to find treatment that will help

you lead a pain free life.

Jeanne

Hello, I'm New Here

Hi, My name is Lynda.

I am 50 years old and have severe scoliosis (110 degree/85 degree). I was born

with it and it was left untreated with a " wait and see " attitude. I was told at

a scoliosis clinin when I was 20 that I wouldn't curve anymore because I was

finished growing. At the time my curves were " only " 85 degree/63 degree. Imagine

my horror at age 39 when I began to have chronic pain and I found out how much

it had progressed. In 2001 I had surgery. No correction was possible. It was to

keep it from getting any worse. I have 4 rods. Surgery did not relieve my pain.

I've been on SS since 1998.

I have begun to have a painful arm that is numb and tingly at times. It's very

painful. My dr thinks it's a nerve in my neck. Sometimes my other arm hurts too,

but not as bad and no numbness or tingling. I also have begun to have pain in my

legs and they are becoming unreliable at times. I just can't wrap my brain

around it that a nerve in my neck can cause this. This would be just above my

fusion. I believe it would require yet another metal plate.

Has anyone on here had this happen to them? He wants me to see a

neurologist/surgeon. I don't want another surgery. I'm feeling a little nervous

wondering how far this could progress. Should I wait and see about this or is it

something I should take care of right away?

I would really appreciate any feedback I could get here.

~Lynda~

[Guest guest]

Thank you Jean. I will check those groups out. I thought they just addressed

flatback syndrome.

Thanks again!

~Lynda~

________________________________

From: Slinker <slinkers5@...>

Scoliosis Treatment

Sent: Fri, February 26, 2010 12:27:04 PM

Subject: Re: Hello, I'm New Here

 

Hi Lynda,

I am so sorry that you are suffering so much. I am also have scoliosis, my " C "

curve was corrected 30 years ago when I was 17. I currently am dealing with

lower back pain and pain in my right hip and leg. I have also had to have a

synovial cyst in my spine ruptured early last year as it was pressing on my

spinal column and causing me tremendous pain.

That said, I am not dealing with the issues that you have, but I know of two

other groups that included many members who can relate to what you are going

through. The groups are called: FeistyScolioFlatbac kers@groups .com and

.

Many people have been operated on for scoliosis and some of those people found

that they were worse off after surgery, or that they were better but eventually

developed other problems. I found these groups a year ago when I was trying to

figure out what was going on with my back. There are many people in both groups

that are extremely supportive, who understand what you are going through, and

can direct you to information about scoliosis and to surgeons who may be able to

help you.

I wish you all the best and hope you are able to find treatment that will help

you lead a pain free life.

Jeanne

Hello, I'm New Here

Hi, My name is Lynda.

I am 50 years old and have severe scoliosis (110 degree/85 degree). I was born

with it and it was left untreated with a " wait and see " attitude. I was told at

a scoliosis clinin when I was 20 that I wouldn't curve anymore because I was

finished growing. At the time my curves were " only " 85 degree/63 degree. Imagine

my horror at age 39 when I began to have chronic pain and I found out how much

it had progressed. In 2001 I had surgery. No correction was possible. It was to

keep it from getting any worse. I have 4 rods. Surgery did not relieve my pain.

I've been on SS since 1998.

I have begun to have a painful arm that is numb and tingly at times. It's very

painful. My dr thinks it's a nerve in my neck. Sometimes my other arm hurts too,

but not as bad and no numbness or tingling. I also have begun to have pain in my

legs and they are becoming unreliable at times. I just can't wrap my brain

around it that a nerve in my neck can cause this. This would be just above my

fusion. I believe it would require yet another metal plate.

Has anyone on here had this happen to them? He wants me to see a neurologist/

surgeon. I don't want another surgery. I'm feeling a little nervous wondering

how far this could progress. Should I wait and see about this or is it something

I should take care of right away?

I would really appreciate any feedback I could get here.

~Lynda~

[Guest guest]

Dear ,

No one " wants " more surgery. That said I guess only you can answer your

own question. Do you want to have an expert (neurologist/surgeon) diagnose

your problem? Or do you want to live with pain that will probably

increase? Where will your pain level be in 10 years-is a good question to ask

yourself objectively. Do you really think it will go away?

I'm wondering if the doctor that recenty accessed you is a scoliosis

expert. If not, I'd advise you to research on the SRS..org website for one

near

you. It sounds like there may be nonfused areas that could be your source

of pain, perhaps. You don't mention the levels your fusion so it may also

be too short, or nerves may be impringed....any scenario is

possible-without an expert scoliosis surgeon diagnosis you will never know.

How much

more pain can you put up with?

Jolene 63, 95/55 surgery 1960,2006, & October 2010

Jolene Morell

Shop online at _www.InheritedButtons.com_

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