New member

[Guest guest]

Deadra,

My daughter is 4 with pauciarticular arthritis, and she has also had uveitis. We've been lucky in that we've been able to get it all under control with mtx (oral). Good luck to you!

Diane (, 4, pauci)

[Guest guest]

HI,

I cant give any info on the Uvitis but the shots of Methotrexate work better then oral.Oral absorbtion is very eratic and can be very low,while injectable is around 99%absorbable.There are many moms that can help you with advice.

Becki and 4systemic

[Guest guest]

Hi ,

There are several men on the graves_support board at www.mediboard.com and a

few on graves_support at groups. See the links on my web site too and

check out mike's GD website.

Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/

Take care, Elaine

[Guest guest]

Hi Carey,

My name is Becki and I live in Murfreesboro Tn.I have a 5yr old with Stills Disease and we see Dr.Lawton and Dr.Hummel at Vanderbilt.I assume thats where you go also.Right now the best thing you can do is keep a journal of where it hurts,when it hurts,when she has the fevers and such.Write everything down.Don't expect the Ibuprofin to do much,they are probably checking to see if it brings the fevers down.If it is Stills it wont.It sounds like your daughters fevers are starting to take on the classic Stills pattern.They are cyclic occuring atleast twice a day.In the afternoon and evening and she can wake up with them.While the fever is present is when they feel there worst, when they come down they feel better but not perfect.I know what you mean by wanting your baby back. wasn't quite 3 and within 3 weeks he was unofficialy diagnosed and put on high doses of steroids.He had a very rapid oncet and was very severe.Most likely if the Ibuprofin doesn't work the next step is steroids and Methotrexate.You are at a very scarey time right now.Your baby is sick and you are facing the reality of some very strong drugs that sound like poison.Luckily you have found this group and we are hear to help you down this new,unwanted journey.Any questions or concerns you have can be answered here.I have learned that the Rheumies do not like to give out to much info at once.You basically have to ask them direct questions.I have learned so much more from this group then the doctors.We may not have the medical degrees but I consider ourselves the experts.Vanderbilt is pretty agressive and have alot of luck getting there Stills patiants under control without the use of steroids.Your daughter is in good hands.I also found that lots of hot baths help but wouldn't recommend it duiring the high fevers.Another thing that is common with Stills patiants are Myalgas(all over body pain)Just touching your daughter can cause excrusiating pain in her muscles.Another thing that helps is an electric matress pad but you would have to be careful about wetting it at night.Right now lots of love and attention is all you can do.I don't know how your daughters appetite is but s was awful.We were instructed to let him eat anything he wanted even if it was icecream for breakfast,lunch and dinner.Another thing is let your daughter do what she wants.If all she wants to do is lay down due to the pain thats fine,but if she feals like getting up and walking around,let her.She needs to keep her muscles strong to help support her joints.

Please let us know if you have any questions or concerns.Alot of stuff you read sounds really scarey,especially the meds they use,but rarely do children have complications from them,It's basically a trial and error thing trying to find the right drugs and doses to get the disease under control.

Hugs

Becki and 5systemic

[Guest guest]

-Hi Carey,

Welcome to the group... its an amazing place for support and

information. Im a fairly new member also and although i read daily I

dont reply as often as I should.. gonna try and remedy that!!

My son was dx with systemic JRA back in June of this year.

I guess we were lucky that he was " only " sick for about 4 months

before they found out what was wrong. he had all the tell tale

signs, the clockwork fevers, rashes, very high sed rates, limping,

complaining of joint pain. Once everything else was ruled out we

were sent to a ped rhuemmy. I think Nick is one of the lucky ones

that his joints are doing good. It was caught early enough that

treatment was started before any damage was done.

Nick is responding well to twice daily doses of naprosyn and now

wakes up happy and raring to go, a 180 deg turn around from the kid

that woke up crying that his knees and hips hurt and who couldnt

walk down the stairs. He still tends to be sore the day after a lot

of phyisical activity but has only had one flare back in July when

his temps came back and he ended up on increased naprosyn and

steriods for a week.

Im really hoping when he sees the rhuemmy in december that we can

start tapering off the naprosyn )) I feel very lucky that Nick is

one of the more mild cases. He was so sick back in march though May

( spend a few days in the hospital) that i didnt think he would ever

be well again.

Hang in there.. its soo overwelming to begin with, but it did make

me feel better once he was dx and then i was able to start dealing

with it better. I was quite the basketcase in the begining.

I hope you get some answers soon and more importantly some relief

for Hannah.

Again, welcome and ask any questions you need answers to, the

experts ( not me!) on the list are a wealth of great information.

Hugs

Helen and (6 systemic)

-- In , " Carey " <app_37190@y...> wrote:

> Hello Everyone,

>

> I wanted to introduce myself to everyone! I joined this group

> because of my 23 month old daughter Hannah Rose. We have not

gotten

> a confirmed diagnosis as of yet, but the rheumatologist is almost

> certain she has still's disease. She had been diagnosed with

> originally but now her joints are really becoming involved. She

has

> a lot of pain and swelling in her wrists mostly. On the days she

> feels well she will run and play but the following day she is

> complaining of pain or is just laying about all day. In the

> beginning of all this the only time she felt bad was during her

fever

> episodes, which came every 21 days, however for the last month she

> feels bad most of the time and complains often that things hurt.

Her

> fevers have also changed they are coming more often not in the

usual

> pattern. Often times her fevers spike to 105 or 106. Her tests

for

> rheumatoid have come back negative but we were told this is often

the

> case in children with still's disease. She currently is on

ibuprofen

> 3 times a day for the next 3 weeks to see how that manages her

pain

> and inflammation. If anyone has any tips on what we should or

> shouldn't being doing with her I would really appreciate it. This

is

> a very confusing and frustrating time for us as I know all of you

> have experienced. I just want my baby back!

>

> Carey mom to Hannah Rose

> ville, Tn

[Guest guest]

-Hi

Welcome to the group. Sounds like you have your hands full. You must

feel like a nurse dishing out meds all the time. Im glad you got the

mold sorted out. It wouldnt suprise me about the connection. I

thinks molds are responsable for a lot more than we know about...

Again, welcome

Hugs Helen and (6, systemic)

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

> Please excuse me for jumping in as I did in regard to triggers

> without introducing myself. My name is and I have 3 sons

> diagnosed JRA by some MDs, JRA-related by others. When my eldest

son

> was dx. @ 6 yrs. old we were told it was most unlikely to occur in

> another son. Well, when the next one was diagnosed at age 4 yrs.

we

> were told they had said " unlikely but not impossible " , and when

the

> NEXT one was dx. @ 5 yrs., we were told that now we were unusual.

I

> was wondering if anyone on this list was also involved in the sibs-

> pair study being done by Cincinnati Children's Hospital. My main

> thought at this time is in regard to my middle son, , who is

12

> yrs. now. Just last week x-rays done by his spinal surgeon

> showed " profound " hip dysplasia. The thought is the damage has

been

> done by the JRA, and they want to discuss pelvic surgery to try

and

> maintain the hips. I wonder if anyone else has encountered this?

> There is no chance he was born with this as he has been

scrutinized

> closely since birth due to other factors. I would be most

> appreciative of any input . Thank you, G

[Guest guest]

Hi ,

Warm wishes for you and your daughter. My daughter was also diagnosed at 4 1/2. She is now 6. At the first appointment you can expect them to check all of her joints for mobility and swelling. They will also take a peek at her eyes. They will probably give you some idea of what kind of arthritis she has. If it is limited to less then 4 joints it is more then likely pauciarticular and she will require to have her eyes tested regularly because there is a higher chance of eye involvement with that type. She will also probably be prescribed some medication for pain and possibly a disease modifying anti rheumatic drug or something else to actually fight the progression of the disease.

Things do get easier. I was a wreck when Riley first got sick. It started to get better after finding this group simply because I didn't feel so alone. We are very lucky, at one point she could hardly walk, had to wear a very high tech splint called a unisplint to straighten her leg that had a contracture due to her lost range of motion. And she had a sed rate of 81. Normal for a child is between 1 and 10. Sed rate determines the amount of swelling in the system. Well, thanks to my hero...her rheumy. Aggressive medical treatment, physical therapy and a whole lot of prayers from my family and my family here at the jra list. She is in medicated remission, has a sed rate of 3 and is functioning perfectly normally. We have taken her off of her pain medication and are in the process of tapering her methotrexate. She started at 15 mg and is now at 5 mg. I just wanted to let you know that there is hope and with this group there is definitely a lot of support.

Hang in there and whenever you need to vent, cry, laugh or whatever, you are welcome here.

xoxo, Ellie and Riley 6 poly

If God brings you to it, He will bring you through it.

[Guest guest]

-

It does get easier to deal with. It's very scary at first . . . you always worry about worst case scenarios. But you've found a great resource, both for information and support. This list was a Godsend for me. I found it right after my daughter was diagnosed about three years ago. My daughter's arthritis, like yours, started out with swelling in one knee. Her experience sounds similar to your daughter's. She started out on NSAIDs, first Naprosyn, then Relafen. It helped somewhat, but the swelling was stubborn. A joint injection put in remission for nearly a year:-) It came back in four joints, and I'm happy to say we've got her in remission again (though still somewhat medicated). This time, it was through methotrexate. 's had some rough spots, but more good than bad. Learn all you can. Be actively involved in her treatment. And stay positive. 's 4 1/2 now and at the moment, you wouldn't know she has arthritis. Hope this helps.

Diane (, 4, pauci)

[Guest guest]

Tammy-

What you said about when knowing you like your child's specialist is like being in love is so funny and so true. I feel that way about 's.

Diane (, 4, pauci)

[Guest guest]

Hi ,

My daughter, Nia who will be 4 on next week, was diagnosed with JRA at the age of 16 months. Like your daughter her left knee was swollen and she would limp after waking up from a night's sleep or a nap. At that age Nia would always walk. She would be slow about getting around but she never stopped walking. After she moved around a bit her knee would feel much better.

The first doctor's appoinment was not a big shock. I had done a lot of research on JRA. As a matter of fact I was the one to make the first diagnosis. At her first appointmnet the doctor asked a lot of questions. She also examined Nia and stretched her joints. She prescribed Naproxyen. Since then Nia has been on Naproxyen and Predinsolone (steroid). She was on the steroid only for a short time. Now Nia is doing extremely well. The most important thing I've learned about dealing with arthritis is that you much exercise the joints. Initially it will hurt. But the more you stretech the joints the better the joints get. Dealing with arthritis can be quite difficult. My daughter doesn't really know that she has arthritis. My husband and I don't treat her any differently than my 6 year old son. Right now she attends preschool and takes dance once a week. She is a very active child. The only medication that she takes right now is Naproxyen 9ml twice a day. We have to get her blood checked maybe 3 times a year to make sure the Naproxyen is not doing any damage to her liver. They are also checking other things but I am not quite sure what they are right now.

Yes, this disease is very frightening to deal with at first. Just remember to do your research and be an advocate for your daughter. If you don't feel 100% sure about the medicines prescribed for your daughter ask questions. The JRA support group is also a wonderful group to get support and information.

Please keep in touch. It seems as if our daughters'arthritis is similar. This disease is much better to deal with if you have someone to talk to.

yolanda kimbro (Nia 4, pauci)

>From: L22@... >Reply- > >Subject: new member >Date: Tue, 4 Nov 2003 00:37:57 EST > >HELLO! my name is and my 4 1/2 year old girl just got diagnosed with >rhematoid arthritis, she has her first appointment with the rhematoid doctor >the 19th of this month, and was wonderign if you guys could tell me what to >expect from her first visit. i am very nervous about going.. i currently live in >alaska and we are flying to seattle to go see the specialists. the only thing >affected right now is her left knee. her knee has been swollen and is the size >of a gratefruit since about august. she started with a limp, and now she is >up to the point were she doesnt walk at all. she hops around on her good knee >or crawls, it kills me to see her this way.. i would love any input, does it >get easier to deal with?? > >thank you >mayra Concerned that messages may bounce because your Hotmail account is over limit? Get Hotmail Extra Storage!

[Guest guest]

, hello I don't have any children so I don't know your feelings in this regards! But I have been living with J R A since the age of 13, now I am 48. To your question, "does it get any easier to deal with?"

The easy part of dealing with J R A comes with the acceptance that, all we can to is deal with it day to day as it comes!

You can't take it away from your child, as so many parents would do so, if it were within their power! But its not!

Good health management, regular doctor visits, and TONS os support and encouragement for your child, so that they know! they can achieve their life dreams! To never give up and as it has been said, "Shoot for the Stars"

My name is , But I am better known as

Rusty Limbs! here in the group!

[Guest guest]

Hello Myra,

My daughter is 16 and she has poly articular arthritis (5 or more

joints). She sees doctors at Seattle Children's and we have been

extremely happy with the care she has received there. I know Dr.

Emery goes up to Alaska to treat patients as well. When you go to

your first appointment they will give you some great handouts from

the Arthritis Foundation that will explain more about the disease,

the medications etc. First visit your daughter will be examined from

head to toe. They may find more affected joints than you have noticed

(not huge like grapefruit but still with arthritis present). They

will talk to you about her sleep pattern, pain, etc. You'll have to

go for a blood draw plus a urine sample. The field of rheumatology

has turned into a very exciting thing recently. There are many more

medications available than ever before and with that there is so much

more hope for a " normal " life (whatever that may be). When you are

done with your appointment there will be plenty of questions about

what you heard, what medications they have prescribed etc. Ask away.

It can be very scary and intimidating at the beginning. It will get

better and you will have your own informal unwanted medical

understanding of this disease, its treatment, its general course.

As for getting easier to deal with, yes and no. It gets easier

because it is not all new and you understand more. The medicines

begin to take affect and you seem positive response in your child.

For some, it is quick and basically overnight, for others it is

longer to happen. For some, they quickly go into remission and never

hear of the disease again. So, in some ways it is easier. But it can

be hard too because of the nature of the disease. Sometimes you think

it is gone because things are quiet and you get into a complacent

mode and then it raises its ugly head again because it makes it self

known again. But overall, I agree with who knows this disease

well. It does get easier because you know what you can do, what

works, what doesn't and you live your life to the fullest

irregardless of the disease. Hope this doesn't confuse you or raise

your anxiety level. Ask away. There are wonderful people here with

absolutely wonderful advice, great listening ears, and understanding

of what you and your child are going through.

Best wishes for a return to health for your precious one.

e, mom to joe 16 poly

> HELLO! my name is and my 4 1/2 year old girl just got

diagnosed with

> rhematoid arthritis, she has her first appointment with the

rhematoid doctor

> the 19th of this month, and was wonderign if you guys could tell me

what to

> expect from her first visit. i am very nervous about going.. i

currently live in

> alaska and we are flying to seattle to go see the specialists. the

only thing

> affected right now is her left knee. her knee has been swollen and

is the size

> of a gratefruit since about august. she started with a limp, and

now she is

> up to the point were she doesnt walk at all. she hops around on

her good knee

> or crawls, it kills me to see her this way.. i would love any

input, does it

> get easier to deal with??

>

> thank you

> mayra

[Guest guest]

,

My daughter Meaghan was diagnosed with JRA at 2 1/2 years old. She just turned 3 and is having probs again. Like your daughter hers started in her right knee. It is extremely hard to deal with. I never had heard of JRA until my daughter was diagnosed with it. The first appointment can be one full of stress. I have learned to keep a notebook handy at all times and when Meaghan has a problem I write it down. If a question arises I write it down. This really helps because when the time comes your mind blanks out. My daughter has pauci( 4 or fewer joints). She gets checked by an eye doctor every 6 months. So far so good. Her JRA is strictly in her right knee so far. However if you noticed even the smallest amount of swelling let the doctor know. My rheumy let me know that there is no stupid questions when it comes to the welfare of a child. Ask whatever you want. This group is a big help. Please know that I am praying for you and will keep your daughter in my prayers as well.

Bridget (mom to Meaghan, 3, pauci)

new member

HELLO! my name is and my 4 1/2 year old girl just got diagnosed with rhematoid arthritis, she has her first appointment with the rhematoid doctor the 19th of this month, and was wonderign if you guys could tell me what to expect from her first visit. i am very nervous about going.. i currently live in alaska and we are flying to seattle to go see the specialists. the only thing affected right now is her left knee. her knee has been swollen and is the size of a gratefruit since about august. she started with a limp, and now she is up to the point were she doesnt walk at all. she hops around on her good knee or crawls, it kills me to see her this way.. i would love any input, does it get easier to deal with??

thank you

mayraTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi and na and welcome to the JRA list. You will find support, information and in general a bunch of great folks to help you along the way. My name is Donna and I speak not as a parent to a child with arthritis but as an adult who for 34 of my 38 years has lived with JRA in my shadows. I was 4 when I took ill and it all started in my right knee as well. I am also experienced as mom to 2 boys so I know the heartfelt pain and helplessness that accompanies a childs illness (my youngest is asthmatic but fortunately neither have had JRA present). I am writing in reference to your question does it get easier? This is a question that is book worthy, in other words a loaded but excellent question! For moms I am not sure it ever gets easier. On good days you will relish in the good and on bad days you will ache for your child. As moms our children mean the world and to see them hurt and limp due to pain is incredibly tough and never easy. My mom to this day "aches" for me and I know it. I have said many times I believe it is harder on moms than the kiddos. In Kentucky I run a volunteer organization for families whose child has arthritis and for adults who have grown up with JRA and I have come to realize the kids I know with JRA are incredible and I am positive all moms here will agree. They are tough. They are strong. They are determined.They are accepting (except those teen years can be a wee bit tough). I truly think acceptance in knowing kids get arthritis is one thing and acceptance to the fact it is your lil angel who has it is another and it can be tough but is an acceptance that is very do-able. Educating yourself and surrounding yourself with the likes of the folks in this group are great starts! As a grown up child of JRA my recommendations are as all moms do...love and accept your child with JRA, accept the difficulties that may come along and they will. Build that bridge strong out of love, strength, patience and courage. Know that "this too shall pass, for as we all know flares do come and go. Sometimes it seems an eternity before your child improves but remain strong and determined and many days you may find that it is your child who will deliver to you that strength. You may ask how does she do it, how does she get through but she just will and she will learn from her arthritis many things and not all bad. Arthritis is a great teacher of courage, faith, endurance, creativity, patience, and strength among other traits. Stay close to the group and as an elementary teacher once told me "the only dumb queston is the one you are afraid to ask" so please feel free to ask all day and I promise this group will deliver you answers all day long..to you and your daughter warm hugs and happy thoughts!

Donna Fox, President

Facing Arthritis with Compassion, Encouragement and Support

(for children and young adults)

Louisville, Ky

www.calky.org/faces

faces1999@...

[Guest guest]

Jen,

Welcome to the group! Hi my name is Grace and my daughter, is

13yo and has epilepsy. She is also develompentally delayed and is

speech/language impaired. It might be a type of seizure Izaiah is

having, but the one sure way to find out is to have an EEG done.

talks, but because she is delayed, she cannot describe what she

is feeling when she has auras or after she's had a grand mal seizure.

It's very frustrating when our children cannot tell us how they are

feeling. I hope and pray that you find the answers you are looking for.

Good Luck and stay strong. God Bless!

Grace

On Wed, 11 Feb 2004 18:04:29 -0000 " " <Izaiahmom@...> writes:

> Hi-I just joined this group and I hope I am in the right place. I

> have a 2 1/2 yr old son named Izaiah. Izaiah has holoprosencephaly

>

> and CP...along w/ some other " quirks " in his brain structure. You

> can read his story @ http://izaiahnc.tripod.com/ Anyway-so far we

> have rpetty much avoided seizures. He had a small string of

> myclonics when he was 8 mths old and they lasted a mth and a half

> and went away on their own. Now I think he is having a different

> type of seizure and I am just looking for some input and advice. He

>

> has an appt. w/ his neuro on March 9-I just want to make sure I have

>

> all the info for that. Izaiah started having these " episodes " about

>

> 6 mths ago I guess....but he has only had maybe 5 of them in the 6

> mths. He had one this past Sun which was the first time in 3 mths

> and he had another one this morning. I will explain the thing he

> does: It always occurs during a nap-he usually falls asleep and

> then wakes up shortly afterwards. When he wakes up he is real spacy

>

> looking and limp. He is also not swallowing well and is drooling.

>

> His lips loose color and don't really turn blue but they are kinda

> gray looking. His eyes are open and he doesn't jerk or anything-but

>

> he isn't really w/ us during this time. After maybe a minute it is

>

> over and he ALWAYS falls into a deep sleep for 30 min-hr. Does this

>

> sound familiar or like a seizure?? The myclonics he had were also

> during sleep or upon waking so my theory is some thing is weak in

> the " sleeping " part of his brain. Izaiah is severely

> developmentally delayed so we can't really ask him how he feels or

> anything. He doesn't walk/talk. After these " episodes " and after

> he wakes up from the nap he is always fine w/ no effects from it-he

>

> is back to his happy, smiling self. This is all very new to me and

> pretty scary. The first time he did it-we ran to the car and was

> heading to the ER and then he stopped and was fine. Now-it doesn't

>

> really freak me that much-but I don't like it. Anyway-thats my

> story. I am interested in any input on type of seizure,

> medications, etc. Thanks in advance for reading this and any

> advice!

> Jen-mommy to Izaiah (2.5 w/ mihf HPE, spastic CP, CVI) and Jerika (4

>

> mths) in NC

>

>

>

>

[Guest guest]

Welcome Sara and please chime in anytime. My name is Donna and I too am a JRA vet, dx'd at age 5, now 38. I also know Al and am glad he referred you this way. There are many great folks here...welcome and keep in touch!!! Donna

[Guest guest]

Sara, Welcome to the group. My brother takes humira and has responded very well. He had tried mtx and enbrel with not so good results. (n, 15, systemic)

new member

Hi everyone,I've been lurking for a little while, and I thought it might be a good idea to introduce myself. Al Masters told me about this listserv a while ago when I found his site for adults with JRA. I've had poly JRA since I was 5, and I am very lucky because it is not nearly as active as it used to be (I'm 26 now). Right now I'm looking at taking one of the new drugs like Humira, but I haven't decided yet. I want to say that I think all of you and your children are amazingly strong people! And I think it's wonderful that this email space exists for everyone to help each other.I support what all of you do as parents of children with JRA and people who have JRA yourselves. I hate the pain and frustration that JRA causes, and I'm sorry for all many of you go through on a daily basis. I hope to become more of an activist for children with JRA when I finish my PhD this next year.I didn't want to intrude on your conversations, but I also didn't want to just keep reading all the great info that comes across and not let you guys know I was here.Hugs!Sara Pace (poly since age 5)

[Guest guest]

Sara-

You're not intruding. Pipe in whenever you want. I'm sure there's a lot we can learn from a jra vet like you.

Diane (, 4, pauci, iritis)

[Guest guest]

Hi,Sara and welcome. I think it is great you are going to be an activist

for kids with JRA. We need all we can get! Post up anytime! Michele

(16,pauci & spondy)

new member

Hi everyone,

I've been lurking for a little while, and I thought it might be a good

idea

to introduce myself. Al Masters told me about this listserv a while ago

when I found his site for adults with JRA. I've had poly JRA since I

was 5,

and I am very lucky because it is not nearly as active as it used to be

(I'm

26 now). Right now I'm looking at taking one of the new drugs like

Humira,

but I haven't decided yet. I want to say that I think all of you and

your

children are amazingly strong people! And I think it's wonderful that

this

email space exists for everyone to help each other.

I support what all of you do as parents of children with JRA and people

who

have JRA yourselves. I hate the pain and frustration that JRA causes,

and

I'm sorry for all many of you go through on a daily basis. I hope to

become

more of an activist for children with JRA when I finish my PhD this next

year.

I didn't want to intrude on your conversations, but I also didn't want

to

just keep reading all the great info that comes across and not let you

guys

know I was here.

Hugs!

Sara Pace (poly since age 5)

[Guest guest]

Sara,

Welcome. You will definitely offer another needed perspective to

this group. I'd love to hear your 20+ year story of meds,

procedures, ups/downs, etc. Are you doing well now?? Do you still

have pain?

Stacia and Hunter, 7, systemic for 4 years

> Hi everyone,

>

> I've been lurking for a little while, and I thought it might be a

good idea

> to introduce myself. Al Masters told me about this listserv a

while ago

> when I found his site for adults with JRA. I've had poly JRA

since I was 5,

> and I am very lucky because it is not nearly as active as it used

to be (I'm

> 26 now). Right now I'm looking at taking one of the new drugs

like Humira,

> but I haven't decided yet. I want to say that I think all of you

and your

> children are amazingly strong people! And I think it's wonderful

that this

> email space exists for everyone to help each other.

>

> I support what all of you do as parents of children with JRA and

people who

> have JRA yourselves. I hate the pain and frustration that JRA

causes, and

> I'm sorry for all many of you go through on a daily basis. I hope

to become

> more of an activist for children with JRA when I finish my PhD

this next

> year.

>

> I didn't want to intrude on your conversations, but I also didn't

want to

> just keep reading all the great info that comes across and not let

you guys

> know I was here.

>

> Hugs!

>

> Sara Pace (poly since age 5)

[Guest guest]

Hi e,

My degree is in Rhetoric (which basically refers to the study of written and

spoken communication in different cultures), and I teach all kinds of

undergraduate courses in writing and literature at Texas Woman's University.

It's been a real dream for me to do this because I love writing and

language so much. I hope Joe gets to focus on something in college she's

really passionate about as well :-).

Thank you all for welcoming me! I'll feel free to post when there's

something I can help with.

Sara

>Welcome Sara,

>

>you definetly aren't intruding in conversations ever. I have learned so

>much from the JRA vets here about how to help my daughter cope with the

>disease. I have read a lot, talked to a lot of people, etc but it compares

>nothing to your actual experience with the disease.

>

>Tell us please, what are you studying in school? Medical, social work or ?

>Just curious.

>

>e, mom to joe 17 poly

[Guest guest]

Hi Sara,

How nice to meet you! I love when we have visits from long-time JRAers

like yourself. I find so much encouragement and inspiration, from

hearing stories about what it was like growing up with this disease and

how people overcome the various obstacles they face. I wish you much

success, in reaching all of the goals that you've set for yourself.

I hope we'll hear from you more often, as your schedule allows

Take Care,

Georgina

Sara Pace wrote:

> Hi everyone,

>

> I've been lurking for a little while, and I thought it might be a

good idea

> to introduce myself. Al Masters told me about this listserv a while ago

> when I found his site for adults with JRA. I've had poly JRA since I

was 5,

> and I am very lucky because it is not nearly as active as it used to

be (I'm

> 26 now). Right now I'm looking at taking one of the new drugs like

Humira,

> but I haven't decided yet. I want to say that I think all of you and

your

> children are amazingly strong people! And I think it's wonderful

that this

> email space exists for everyone to help each other.

>

> I support what all of you do as parents of children with JRA and

people who

> have JRA yourselves. I hate the pain and frustration that JRA

causes, and

> I'm sorry for all many of you go through on a daily basis. I hope to

become

> more of an activist for children with JRA when I finish my PhD this next

> year.

>

> I didn't want to intrude on your conversations, but I also didn't

want to

> just keep reading all the great info that comes across and not let

you guys

> know I was here.

>

> Hugs!

>

> Sara Pace (poly since age 5)

[Guest guest]

Sara,

Welcome to the group. its great to have another vet join our ranks.

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: "Sara Pace" >Reply- > >Subject: new member >Date: Mon, 23 Feb 2004 02:38:06 +0000 > >Hi everyone, > >I've been lurking for a little while, and I thought it might be a good idea >to introduce myself. Al Masters told me about this listserv a while ago >when I found his site for adults with JRA. I've had poly JRA since I was 5, >and I am very lucky because it is not nearly as active as it used to be (I'm >26 now). Right now I'm looking at taking one of the new drugs like Humira, >but I haven't decided yet. I want to say that I think all of you and your >children are amazingly strong people! And I think it's wonderful that this >email space exists for everyone to help each other. > >I support what all of you do as parents of children with JRA and people who >have JRA yourselves. I hate the pain and frustration that JRA causes, and >I'm sorry for all many of you go through on a daily basis. I hope to become >more of an activist for children with JRA when I finish my PhD this next >year. > >I didn't want to intrude on your conversations, but I also didn't want to >just keep reading all the great info that comes across and not let you guys >know I was here. > >Hugs! > >Sara Pace (poly since age 5) > > Dream of owning a home? Find out how in the First-time Home Buying Guide.

[Guest guest]

That's great--college is a very differet atmosphere--I liked it a lot

because suddenly I was with people of all ages from all different kinds of

backgrounds. I'm glad to hear she's enjoying it, and it sounds like she's

picked out some fun majors.

sara

>From: bound for london <boundforlondon@...>

>Reply-

>

>Subject: Re: new member

>Date: Fri, 27 Feb 2004 23:36:20 -0800 (PST)

>

>Sounds very interesting. Right now my daughter is thinking of elementary ed

>with a double major in music. If all goes well she will graduate next June

>with her AA and then the next week with her high school diploma. She is

>enjoying college life more than high school. Not the whole clique thing and

>no one comments when she goes up on steroids and her face and body balloon

>up.

>

>e

[Guest guest]

In a message dated 3/15/04 8:47:44 AM Central Standard Time, mazurs05@... writes:

Just out of curiosity, does anyone know how long they typically have to stay on the meds before they consider them to be in remission?

Hi Patti,

My son was diagnosed right before his third birthday.He has been in remission for 15 months now.

To be classafied as being in remission labs have to be good,no active arthritis,no morning stiffness lasting more then 15minuites and probably a few others for 6 months.

It took 5 differant arthritis drugs for to get there but now he just takes 2 and 1 will be gone in July.

There is no time line for true clinical remission.Once symptoms have been gone they start tapering the meds very slowely.If symptoms come back it's still medicated but if you can come completely off the meds with no symptoms it's clinical.There is absolutely no test to distinguish between the two.

Good luck and I hope Arthur stays away for good.

Hugs

Becki and 5 systemic