systemic JRA

November 20, 2000

Hi...I just joined the group. My name is Donna and my son Jonnathon

has has systemic onset jra since he was 9 months old. He is almost 3

now. I wish that I found this group sooner...from the posts that I

have been reading it certainly seems like you guys are great. I stay

home with Jonnathon and his sister, Victorija, 15 months, so that

cuts down on our exposure to germs (like in a day care). I have had

such a rough time with Jonnathon, that I am extremely paranoid.

Because of the disease and meds, when Jonnathon gets sick it is

horrid. As a result, the kids and I are very sheltered. Does anyone

have any ideas for play groups for immune suppressed kids? We need

some interaction with other kids and adults, but I haven't found

anything suitabe in our neighborhood. It is hard to explain to other

parents that my kid can't interact with their kid because their kid

has a runny nost or something. So, the kids and I just do our own

thing. Does anyone happen to live in Mich??? That would be too

easy, right? Well, hopefully you guys can give me some

ideas...thanks!

Donna

November 20, 2000

Donna:

Good luck with Jonnathan. This list is great for sharing experiences and

ideas. Our son Elliot age 6 has systemic JRA. It is hard to let him be

around sick kids, but when he's school age it's not practical or necessarily

wise to keep him home.

By the way, there are a number of members who live near Michigan. The only

JRA parent I know who lives in Michigan (Wixom) is at

phergenreder@.... I'm not sure if she is still on this list.

Charlie

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November 26, 2000

Donna,

Holly and 's story are very similar, right down to treating with

gammaglobulin, but the difference there is that actually treated her

arthritis, for that flare atleast. We got her well and completely off meds,

and then 2 months later, she was a very sick girl again. Labor Day is a

trigger for Holly, 3 out of the what 6 labor days of her life, she has

started major flare. Holly was hospitalized tons of times too. Keep us posted

how he is doing, ttyl, AJ

November 26, 2000

Georgina...

Luckily, I did not catch the flu from the kids, but my husband did, and

thats worse....men are such babies when they are sick!! Do you have a web

page? I think I have read about your Josh's story somewhere. I remember

feeling really bad when I read about him and his meds and such. I was

looking for stories of complete remission, and was so very upset not to find

a single one. Well, Jonnathon is now close to 3, and has had systemic JRA

since he was 9 months old. He was hospitalized several times for

" observation " , since they couldn't figure out what was wrong, and then they

claimed he had " Kawasaki's Disease " , and he was hospitalized yet again to be

treated with gamma-globulin. Neeedless to say after nearly 3 months with no

change and a dozen hospital stays, they decided that he probably has JRA.

Once he began the steroids, his rash and fever disappeared. I was so angry,

because it seemed like such a simple solution and I wondered why they

haden't tried it earlier. To make matters worse, a resident during one of

our hospital stays suggested a rheumy, but his pediatrician said he didn't

think that was necessary, so we had a bone marrow test for leukemia

instead!! Makes perfect sense, doesn't it?? Ahhhhh But, finally,

Jonnathon seems to be doing well, aside from the horrific mouth sores from

the mtx. His knees are the worst joints for him, and sometimes when he gets

up off the floor with difficulty he says " Mamma, you old " . It makes me cry

because he uses " you " to mean " I " , so he is really saying that he is old.

Well, didn't mean to talk your ear off....hope all is going well with your

guy!!

Hope you had a wonderful thanksgiving

Donna

Re: systemic JRA

> Hi Donna,

>

> I hope the kids are starting to feel better. And I hope YOU didn't catch

> that nasty stomache flu!

>

> Take care,

> Georgina

>

> ddwebb1 wrote:

> >

> > ..... Right now I am going nuts because both kids have been up for

several nights

> > with some sort of stomach flu...YUCK!

> > Have a good thanksgiving!

> > Donna

>

> For links to websites with JRA info please visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

> To manage your subscription settings, visit:

> subscribe/

>

March 24, 2001

Oliver,

I attend Great Ormond Street aswell but I'm in The Middlesex Hospital as

thats where the teenage ward for gos is. i have my injections at the local

hospital and I know hes not a specialist in my disease but I just find the

peadiatrician there doesnt care about my disease also I think I'm his only

teen patient and so that causes problems aswell.

Write soon its nice to here from a brit!

Vicky

March 24, 2001

Vicky,

I think you may have met my son Damien or my wife Connie at GOSH? I also

think we're pretty lucky to have the likes of Professor Woo and the rest of

team keeping an eye on us. The thing is, you can't really expect a normal

paediatritian to understand JIA as much as the experts and I understand

that they do not have to study JIA at all in order to qualify. How long

have you had the disease and do you have the systemic variant?

Best wishes,

Oliver

Re: systemic jra

Oliver,

I attend Great Ormond Street aswell but I'm in The Middlesex Hospital as

thats where the teenage ward for gos is. i have my injections at the local

hospital and I know hes not a specialist in my disease but I just find the

peadiatrician there doesnt care about my disease also I think I'm his only

teen patient and so that causes problems aswell.

Write soon its nice to here from a brit!

Vicky

To manage your subscription settings, please visit:

For links to websites about JRA:

http://www.geocities.com/Heartland/Village/8414/Links.html

March 25, 2001

Vicky,

Thick Dr.s seem to be a way of life for most JRA cases. We went through many

and deliberately changed Dr.s. Remember - they work for YOU. We got in their

faces and reminded them of this.

The toughest thing to do was get all the different Dr's to cross communicate.

We started seeing them repeat tests that another Dr. had allready done. Had to

keep a diary and note all the tests ourselves and when a new proceedure, med or

test was prescribed - look to see if it was allready available. Finally we

forced all the Dr's to call each other and get on the same page. Now they are

working like a church choir!

The worst aspect of this disease is it just has so many variables and is still

far to unknown to the general med community. I can give you many accounts where

I have been interviewed by Dr's of all levels and specialty wanting to learn

more about it. Never thought I would be teaching them how to treat my sons med

condition. I wonder if I CAN CHARGE THEM FOR MEDICAL EDUCATION?

Ah well,

[ & Skyler]

Re: systemic jra

Hi ,

Thanks for replying its good to know someone else has thick Dr's. Its alright

for me now as I'm going to see our specialist next Wednesday which means more

SHOPPING as the Hospitals in London!

Bye

Write again soon

Vicky

March 27, 2001

Oliver

I dont think I've met either members of your family.My Grandad actually

trained Proffessor Woo so we have something in common. I 've had it since

last April and yes it is systemic

Bye

Vicky

March 27, 2001

(and skyler)

Thanks for writing tomorrow I'm seeing the specialist and hopefully she'll be

able to sort out the situation as I think shes annoyed with him aswell.If

nothing is changed I'll write again

Vicky

April 18, 2001

It is ok Pamela. I totally understand where you must be emotionally. Skyler

has weighed between 28 and 31 lbs for about 15 mos now. The major Pred pulse

began to wear off in about a week but lasted for about two+ weeks to some

extent. They also increased prednisolone back to 25 mg we saw a little

regression for a few weeks after that when we thought we were going to fail

again. Then slowly he stabilized over the next few weeks and has been about the

same since then with a few minor slips when he had the flu. So, though it is a

little foggy through all the med changes I would estimate that Cyclosporin took

about two weeks to three weeks to get underway. The steroids carried him until

then.

Best of luck

~

Re: newly not yet diagnosed needs help [Long reply]

> > >Date: Thu, 5 Apr 2001 10:36:28 -0700

> > >

> > >Hello,

> > >

> > >This topic is so close to my heart.

> > >For the parents just discovering the challenge if JRA - please know

> >that

> > >you are not alone. According to statistics there are over 250,000

> >children

> > >affected with this disease nationally. If your child has Systemic

> > >(otherwise known as Stills Disease) then you are in a minority of

>25%

> >of

> > >JRA cases.

> > >I will share our story with you but please keep in mind that we are

>one

> >of

> > >the most severe cases. Most do not go through what we have been

> >through.

> > >My son Skyler, now 3 yrs old, first began showing unusual illnesses

> >around

> > >the age of 6 months. For 4 months we fought with the Doctors as

>they

> >told

> > >us we were imagining things. We went from one specialist to

>another

> >and

> > >were given many many medications for each symptom. As the list of

> >problems

> > >grew we knew there was something deeper - something unseen. The

>Dr's

> >began

> > >to tell us we were just paranoid.

> > >Skyler stopped growing as he could not keep food down and vomited

>every

> > >meal. He went from the 98% in size and weight for his age to about

>24%

> >as

> > >he totally stopped growing. They listed him as " Failure to

>Thrive " .

> >He

> > >had more rashes than I can remember as his immune system became

>more

> > >erratic and he seemed to have a constant flu.

> > >In October of 1998 at 10 months of age I finally became irate and

> >forced my

> > >opinion on the pediatrician. As it happened, the regular Dr. was

>not

> > >available and we saw another staff Dr. She looked at Skyler and

> >noticed he

> > >tended to rest in a fetal position. She asked a few questions,

>looked

> >at

> > >his chart and said " I believe you - I think we should hospitalize

> >Skyler

> > >and run some tests " . This was both a relief and very frightening.

> >Even

> > >now it brings this 6'3 " 215 lb man to tears.

> > >We went to Phoenix Childrens Hospital here in Arizona. As if on

>cue

> >Skyler

> > >began to have very high fevers - then several different rashes.

>One

> >rash

> > >in particular fascinated the Hospital staff. They took pictures

>for

> >record

> > >and many other Dr's came by to see it as the story spread. They

>brought

> >in

> > >so many specialists - there was an infectious disease Dr., a

>Pulmonary

> >Dr.,

> > >Immunologist, Endocrinologist, hemotologist, etc. etc. etc.

> > >Slowly they eliminated what the disease was NOT. What was left was

>the

> > >only answer - Stills Disease - a rare form of RA (or JRA in kids).

>But

> >NO

> > >ONE could tell us what to expect. There was no doctor there that

>had

> > >experience with this first hand! They lead us to a Rheumatologist

>-

> > >someone who specializes in the diseaze - but even he could not tell

>us

> >how

> > >this diseaze would progress! We have learned that this is because

>it

> >is

> > >never exactly the same for anyone. Each person has their own

>unique

> > >symptoms, though there are many typical problems. And each

>sufferer

> > >responds to a different group of medications. Some people go into

> > >remnission and some do not. Our hope was in the claim that most do

>go

> >into

> > >remission.

> > >We began to read up on the net and get educated. Soon we seemed to

> >know

> > >more than most doctors! More times than I can remember I have

> >suggested

> > >the course of treatment that has been effective.

> > >To continue Skylers story, first they prescribed Motrin to control

>the

> > >inflamation. This worked and the fevers were held in check and he

> >returned

> > >to acting like a normal baby. We stopped the Motrin and he was in

> > >remission!

> > >Then, in late summer of 1999 his fevers returned with a vengance.

>Each

> > >time that unusual rash appeared just minutes before the fever.

>Fevers

> >over

> > >106 that would last all night. We would ice pack him and feed him

> >frozed

> > >veggies to get nurishment and cool him down. Motrin no longer

>worked.

> >Then

> > >new and more serious sicknesses came on us that put Skyler in the

> >hospital

> > >- Pneumonia, Meninghitis and the fevers resulted in 6

>hospitalizations

> >in

> > >as many months. Now it has been nearly two years and he has not

>gone

> >into

> > >remission - though the disease seems to be in control. Yet he is

>on so

> > >many medications with so many hazardous side affects that we have

> >constant

> > >concerns about how it is affecting him. He has not grown in over a

> >year,

> > >has developed a catarac in his right eye, has irregular kidney test

> > >results, anemia and now is experiencing progressive joint damage in

> >both

> > >knees, both feet, both hands, elbows and shoulders.

> > >We have to give him 3 injections weekly and five oral medications

> >daily.

> > >Blood work monthly, visits to 3 different specialists and a trip to

> >UCLA in

> > >California every two months. Now, he is playing like a little boy

> >should.

> > >He does not run as fast and can not jump well, but his laughter is

>a

> >joy to

> > >hear and his smile is our sunshine. Somehow I believe that good

>comes

> >out

> > >of such things, though it has been very hard to see the light. My

>son

> >has

> > >touched many peoples lives and there has been much support. I know

>of

> > >others with this disease that when they hear Skylers story they

>feel

> >that

> > >if he can deal with it so can they.

> > >I have come to appreciate every healthy moment I can steal with my

>son

> >and

> > >have grown closer to all my children.

> > >I pray that no child should ever have to go through this, but if

>anyone

> > >does I encourage the parents to find a source of support like this

>list

> >or

> > >the Arthritis Foundation in their area. It is so easy to feel

>lost,

> >alone

> > >and hopeless. Here I have found so many answers and prayers,

>without

> >which

> > >I do not know if I could have made it.

> > >Tonight we will add one more unknown face to our prayers. God

>Bless

> >and

> > >know you are not alone.

> > >

> > > [ & Skyler]

> > >

April 26, 2001

,

Thank again for all the information. We got the cyclosporin today and will

start tomorrow. I called down to UCSf and gave them all the info I had.

They called UCLA and researched and sure enough it was worth trying. To

their knowledge this is only being tried on a few children. They know of

Skyler and one other child and now Ky. We still need to figure out how

exactly to give it. Do you use a glass syringe? r will be on .25cc

twice a day. What type of pred pulse does Skyler use? r's pulse which

had just switched to dexamthasone is now on a national shortage and we do

not know when we are going to get another IV. So far this week has not been

so bad a couple fevers and stiffness but we have relied on the pulse for

weeks now. Our insurance is denying our PT and OT. I knew this was coming

but things tend to happen at once. This means Ky will probably go with out

for about a month until I get CCS worked out or the school to help. We have

already set up an IEP and r attends a pre-pre school twice a week. He

is our only child and we began to worry about him socially with other

children. He is so guarded and afraid of getting hurt. r currently

wears wrists splints to bed and our PT recommend the orthodics for his

shoes. r had been a very active guy and I am also sadden by the idea

that he is just not going to be like other young children. Ky does love

golf. He got one of those plastic golf bags and we go play put-put and he

loves it. Half way threw he is just kicking the ball around but he has a

ball. We went last weekend and he wasn't feeling well but I thought if we

could just get his mind off of the arthritis. He became sore but would not

let me get his stroller. We just carried him hole to hole and he watched.

Thanks, this site is so informational but sometimes it helps to have some

one out there going threw the same stuff.

Hang in there,

Pamela

>From: " V. " <chivalry@...>

>Reply-

>< >

>Subject: Re: Re: systemic JRA

>Date: Wed, 18 Apr 2001 17:36:46 -0700

>

>It is ok Pamela. I totally understand where you must be emotionally.

>Skyler has weighed between 28 and 31 lbs for about 15 mos now. The major

>Pred pulse began to wear off in about a week but lasted for about two+

>weeks to some extent. They also increased prednisolone back to 25 mg we

>saw a little regression for a few weeks after that when we thought we were

>going to fail again. Then slowly he stabilized over the next few weeks and

>has been about the same since then with a few minor slips when he had the

>flu. So, though it is a little foggy through all the med changes I would

>estimate that Cyclosporin took about two weeks to three weeks to get

>underway. The steroids carried him until then.

>

>Best of luck

>~

> Re: newly not yet diagnosed needs help [Long

>reply]

> > > >Date: Thu, 5 Apr 2001 10:36:28 -0700

> > > >

> > > >Hello,

> > > >

> > > >This topic is so close to my heart.

> > > >For the parents just discovering the challenge if JRA - please

>know

> > >that

> > > >you are not alone. According to statistics there are over

>250,000

> > >children

> > > >affected with this disease nationally. If your child has

>Systemic

> > > >(otherwise known as Stills Disease) then you are in a minority

>of

> >25%

> > >of

> > > >JRA cases.

> > > >I will share our story with you but please keep in mind that we

>are

> >one

> > >of

> > > >the most severe cases. Most do not go through what we have

>been

> > >through.

> > > >My son Skyler, now 3 yrs old, first began showing unusual

>illnesses

> > >around

> > > >the age of 6 months. For 4 months we fought with the Doctors

>as

> >they

> > >told

> > > >us we were imagining things. We went from one specialist to

> >another

> > >and

> > > >were given many many medications for each symptom. As the list

>of

> > >problems

> > > >grew we knew there was something deeper - something unseen.

>The

> >Dr's

> > >began

> > > >to tell us we were just paranoid.

> > > >Skyler stopped growing as he could not keep food down and

>vomited

> >every

> > > >meal. He went from the 98% in size and weight for his age to

>about

> >24%

> > >as

> > > >he totally stopped growing. They listed him as " Failure to

> >Thrive " .

> > >He

> > > >had more rashes than I can remember as his immune system became

> >more

> > > >erratic and he seemed to have a constant flu.

> > > >In October of 1998 at 10 months of age I finally became irate

>and

> > >forced my

> > > >opinion on the pediatrician. As it happened, the regular Dr.

>was

> >not

> > > >available and we saw another staff Dr. She looked at Skyler

>and

> > >noticed he

> > > >tended to rest in a fetal position. She asked a few questions,

> >looked

> > >at

> > > >his chart and said " I believe you - I think we should

>hospitalize

> > >Skyler

> > > >and run some tests " . This was both a relief and very

>frightening.

> > >Even

> > > >now it brings this 6'3 " 215 lb man to tears.

> > > >We went to Phoenix Childrens Hospital here in Arizona. As if

>on

> >cue

> > >Skyler

> > > >began to have very high fevers - then several different rashes.

> >One

> > >rash

> > > >in particular fascinated the Hospital staff. They took

>pictures

> >for

> > >record

> > > >and many other Dr's came by to see it as the story spread. They

> >brought

> > >in

> > > >so many specialists - there was an infectious disease Dr., a

> >Pulmonary

> > >Dr.,

> > > >Immunologist, Endocrinologist, hemotologist, etc. etc. etc.

> > > >Slowly they eliminated what the disease was NOT. What was left

>was

> >the

> > > >only answer - Stills Disease - a rare form of RA (or JRA in

>kids).

> >But

> > >NO

> > > >ONE could tell us what to expect. There was no doctor there

>that

> >had

> > > >experience with this first hand! They lead us to a

>Rheumatologist

> >-

> > > >someone who specializes in the diseaze - but even he could not

>tell

> >us

> > >how

> > > >this diseaze would progress! We have learned that this is

>because

> >it

> > >is

> > > >never exactly the same for anyone. Each person has their own

> >unique

> > > >symptoms, though there are many typical problems. And each

> >sufferer

> > > >responds to a different group of medications. Some people go

>into

> > > >remnission and some do not. Our hope was in the claim that

>most do

> >go

> > >into

> > > >remission.

> > > >We began to read up on the net and get educated. Soon we

>seemed to

> > >know

> > > >more than most doctors! More times than I can remember I have

> > >suggested

> > > >the course of treatment that has been effective.

> > > >To continue Skylers story, first they prescribed Motrin to

>control

> >the

> > > >inflamation. This worked and the fevers were held in check and

>he

> > >returned

> > > >to acting like a normal baby. We stopped the Motrin and he was

>in

> > > >remission!

> > > >Then, in late summer of 1999 his fevers returned with a

>vengance.

> >Each

> > > >time that unusual rash appeared just minutes before the fever.

> >Fevers

> > >over

> > > >106 that would last all night. We would ice pack him and feed

>him

> > >frozed

> > > >veggies to get nurishment and cool him down. Motrin no longer

> >worked.

> > >Then

> > > >new and more serious sicknesses came on us that put Skyler in

>the

> > >hospital

> > > >- Pneumonia, Meninghitis and the fevers resulted in 6

> >hospitalizations

> > >in

> > > >as many months. Now it has been nearly two years and he has

>not

> >gone

> > >into

> > > >remission - though the disease seems to be in control. Yet he

>is

> >on so

> > > >many medications with so many hazardous side affects that we

>have

> > >constant

> > > >concerns about how it is affecting him. He has not grown in

>over a

> > >year,

> > > >has developed a catarac in his right eye, has irregular kidney

>test

> > > >results, anemia and now is experiencing progressive joint

>damage in

> > >both

> > > >knees, both feet, both hands, elbows and shoulders.

> > > >We have to give him 3 injections weekly and five oral

>medications

> > >daily.

> > > >Blood work monthly, visits to 3 different specialists and a

>trip to

> > >UCLA in

> > > >California every two months. Now, he is playing like a little

>boy

> > >should.

> > > >He does not run as fast and can not jump well, but his laughter

>is

> >a

> > >joy to

> > > >hear and his smile is our sunshine. Somehow I believe that

>good

> >comes

> > >out

> > > >of such things, though it has been very hard to see the light.

>My

> >son

> > >has

> > > >touched many peoples lives and there has been much support. I

>know

> >of

> > > >others with this disease that when they hear Skylers story they

> >feel

> > >that

> > > >if he can deal with it so can they.

> > > >I have come to appreciate every healthy moment I can steal with

>my

> >son

> > >and

> > > >have grown closer to all my children.

> > > >I pray that no child should ever have to go through this, but

>if

> >anyone

> > > >does I encourage the parents to find a source of support like

>this

> >list

> > >or

> > > >the Arthritis Foundation in their area. It is so easy to feel

> >lost,

> > >alone

> > > >and hopeless. Here I have found so many answers and prayers,

> >without

> > >which

> > > >I do not know if I could have made it.

> > > >Tonight we will add one more unknown face to our prayers. God

> >Bless

> > >and

> > > >know you are not alone.

> > > >

> > > > [ & Skyler]

> > > >

April 27, 2001

Hi Pamela,

Just wanted to say that I hope Ky's new treatment will bring the results

you're hoping for. I know it isn't easy in the beginning when the flares

are raging and nothing seems to control the physical symptoms for any

period of time. Especially when, on top of your child not being well,

you're facing things like drug shortages and insurance denying medically

warranted physical therapy. It does become much more manageable and

easier to deal with after you've found the right combination of meds to

help control the disease process. Maybe you'll start to see some

positive results soon.

My son was older than Ky when he first got sick. Josh had just turned 6

and was already in kindergarten. Still, I remember how hard it was to

see him so worried and upset and tearful whenever it was time for a

blood test. So I understand what you're going through.

We had a routine where Josh would sit on my lap each time and be

rewarded with colorful stickers. He filled up an entire sticker book,

twice. Now the blood tests have become routine for him. He's so used to

them, doesn't hardly flinch. Needs them less often, too. Just once a

month. But the MTX injections ... he still doesn't like getting them.

His big brown eyes still fill up with tears every so often but he wipes

them away now before any fall. He knows it's for his own good, he

understands the need for the meds. He accepts that it has to be done but

would rather not. That's one of his challenges.

Aside from that, the need to have blood tests and injections more often

than most other kids, and the fact that he's had stunted growth from the

JRA or the meds to treat it, and that he has some joint pain and

sometimes more fatigue than others his age ... he still keeps up with

just about everything else that kids his age do. He's very well

adjusted, has a great social life, performs well at school, has

intersting hobbies to enjoy ... Try not to worry that Ky will be

isolated or ostracized because of having JRA. Our kids are amazingly

resourceful and can adapt pretty well to whatever challenges they face.

He'll probably thrive in pre-pre-school He may sometimes have more

frequent absences than children without a chronic illness, but some of

my son 's teachers have commended him for performing better than

children who don't miss any days of school.

Before I start rambling on, I better so goodbye. I'm just glad you found

our group, Pam. And hope you'll keep us updated on how things work out

for r.

Take care,

Georgina

PS ... some of our older children here have made their school's sports

teams. Basketball, baseball, swimming, cheerleading ... even golf. You

may be carrying Ky to a couple of the holes these days but one day, he

may very well be a challenge to Tiger woods

Pamela Reagan wrote:

>

> ,

> Thank again for all the information. We got the cyclosporin today and will

> start tomorrow. I called down to UCSf and gave them all the info I had.

> They called UCLA and researched and sure enough it was worth trying. To

> their knowledge this is only being tried on a few children. They know of

> Skyler and one other child and now Ky. We still need to figure out how

> exactly to give it. Do you use a glass syringe? r will be on .25cc

> twice a day. What type of pred pulse does Skyler use? r's pulse which

> had just switched to dexamthasone is now on a national shortage and we do

> not know when we are going to get another IV. So far this week has not been

> so bad a couple fevers and stiffness but we have relied on the pulse for

> weeks now. Our insurance is denying our PT and OT. I knew this was coming

> but things tend to happen at once. This means Ky will probably go with out

> for about a month until I get CCS worked out or the school to help. We have

> already set up an IEP and r attends a pre-pre school twice a week. He

> is our only child and we began to worry about him socially with other

> children. He is so guarded and afraid of getting hurt. r currently

> wears wrists splints to bed and our PT recommend the orthodics for his

> shoes. r had been a very active guy and I am also sadden by the idea

> that he is just not going to be like other young children. Ky does love

> golf. He got one of those plastic golf bags and we go play put-put and he

> loves it. Half way threw he is just kicking the ball around but he has a

> ball. We went last weekend and he wasn't feeling well but I thought if we

> could just get his mind off of the arthritis. He became sore but would not

> let me get his stroller. We just carried him hole to hole and he watched.

> Thanks, this site is so informational but sometimes it helps to have some

> one out there going threw the same stuff.

> Hang in there,

> Pamela

April 27, 2001

Hi Pamela,

My name is suzie and I have a daughter 12

that has systemic JRA. We also go to UCSF for her

care and see Dr. Emery. I think they are wonderful

doctors. CCS (california childrens services) pays for

s pt and ot. They also are setting up

bussing for her. They will pick her up and take her

and then bring her back to school. They are a

wonderful organization and have been very helpful to

us. Also on your IEP if you have any problems, which

I had major ones with the school district we are in,

and I work for them, There is a binder put out by the

Arthritis foundation, It is called Educational Rights

for Children with Arthritis, It is wonderful and

explains everything you need to know in detail. I got

my copy through ucsf. If ever there is something I

can help you with I would be very happy to share any

information I might have.

Have a wonderful day,

sorry for butting into the conversation,

Suzie

--- Pamela Reagan <pcflyn@...> wrote:

> ,

> Thank again for all the information. We got the

> cyclosporin today and will

> start tomorrow. I called down to UCSf and gave them

> all the info I had.

> They called UCLA and researched and sure enough it

> was worth trying. To

> their knowledge this is only being tried on a few

> children. They know of

> Skyler and one other child and now Ky. We still need

> to figure out how

> exactly to give it. Do you use a glass syringe?

> r will be on .25cc

> twice a day. What type of pred pulse does Skyler

> use? r's pulse which

> had just switched to dexamthasone is now on a

> national shortage and we do

> not know when we are going to get another IV. So

> far this week has not been

> so bad a couple fevers and stiffness but we have

> relied on the pulse for

> weeks now. Our insurance is denying our PT and OT.

> I knew this was coming

> but things tend to happen at once. This means Ky

> will probably go with out

> for about a month until I get CCS worked out or the

> school to help. We have

> already set up an IEP and r attends a pre-pre

> school twice a week. He

> is our only child and we began to worry about him

> socially with other

> children. He is so guarded and afraid of getting

> hurt. r currently

> wears wrists splints to bed and our PT recommend the

> orthodics for his

> shoes. r had been a very active guy and I am

> also sadden by the idea

> that he is just not going to be like other young

> children. Ky does love

> golf. He got one of those plastic golf bags and we

> go play put-put and he

> loves it. Half way threw he is just kicking the

> ball around but he has a

> ball. We went last weekend and he wasn't feeling

> well but I thought if we

> could just get his mind off of the arthritis. He

> became sore but would not

> let me get his stroller. We just carried him hole

> to hole and he watched.

> Thanks, this site is so informational but sometimes

> it helps to have some

> one out there going threw the same stuff.

> Hang in there,

> Pamela

>

> >From: " V. " <chivalry@...>

> >Reply-

> >< >

> >Subject: Re: Re: systemic JRA

> >Date: Wed, 18 Apr 2001 17:36:46 -0700

> >

> >It is ok Pamela. I totally understand where you

> must be emotionally.

> >Skyler has weighed between 28 and 31 lbs for about

> 15 mos now. The major

> >Pred pulse began to wear off in about a week but

> lasted for about two+

> >weeks to some extent. They also increased

> prednisolone back to 25 mg we

> >saw a little regression for a few weeks after that

> when we thought we were

> >going to fail again. Then slowly he stabilized

> over the next few weeks and

> >has been about the same since then with a few minor

> slips when he had the

> >flu. So, though it is a little foggy through all

> the med changes I would

> >estimate that Cyclosporin took about two weeks to

> three weeks to get

> >underway. The steroids carried him until then.

> >

> >Best of luck

> >~

> > Re: Re: systemic JRA

> > >

> > > ,

> > > Thank you so much for responding. We go to

> UCSF

=== message truncated ===

__________________________________________________

April 27, 2001

a,

So glad to hear ya made progress with this! It really has helped Skyler. The

pred pulse was just done in the hospital and they upped his prednisolone to

about 20 or 30 mg, then we went on reduction until he started to flare a little.

Other than that we have not had any routine pulses. Though we do have the MTX

and Enbrel plus Tylenol for fever if he lapses and Claritin if he has other

allergies.

Everyone has what we affectionately call their " Drug Cocktail " . Each is fairly

unique but your situation sounded so like ours I just had to push it on you.

Skyler is getting the sleeping wrist braces soon too and allready has the

orthotics in his shoes. Our PT/OT was refused by the insurance co. Ya know,

with all the similarities ESPECIALLY the name similarity, people will be

confusing us!

Social developement is an issue, but there are ways aroud this like church

sunday school, trips to the park and to those pizza places with toys, neighbor

kids & such. Skyler is a pretty sensitive little boy, but when he feels better

he is acting like he is trying to make up for lost time and goes crazy.

Yes, he does get little hurts that other kids don't but he takes them in stride

with an extra hug and " kiss the owie " .

Well, tomorrow is the big day, we go in for the Shriners eval. If it goes well

we will likely be coming out your way in a month or so.

Remember that this is a rollercoaster from here on. There will be more bad

times, but they will help you to better appreciate the good ones and I believe

it makes us all more sensitive and appreciative to the world around us.

Blessings,

[ & Skyler]

Re: Re: systemic JRA