Re: New Mom dealing with JRA

[Guest guest]

In a message dated 1/26/04 9:35:58 AM Eastern Standard Time,

knoblefamily@... writes:

<<

My son is still not able to attend school (he's in the sixth grade).

He tried going back but we could see that the symptoms were quickly

increasing and decided to slow down. For now, he attends a few hours

a week and works with a Homebound teacher. He has regained the

weight he lost and more! We are scheduled to see the pediatric

rheumatologist tomorrow but the winter weather may delay that appt.

I hope not but we'll see.

>>

Hi :

Your email has a lot of similarities with my daughter Caitlin. Although we

do know that Caitlin had a strep infection that went to her blood. They have

not definitively dx'd her with systemic onset JRA or strep induced arthritis.

She, like your son, is 11 years old, in the 6th grade, presented with fevers,

rash and arthritis, spent time in the hospital and is still being home bound

taught. We, too, have an appointment with her rheumy tomorrow, but depending

on the weather, may have to reschedule. I hope we can still go as we are

getting closer to a dx (I think and hope), want her to be seen and she just had

new

labs done and I am anxious to see the numbers and what they will tell us.

Caitlin will attempt to go back to school next week. She is thrilled with that

thought, me, well, it worries me greatly for many reasons, mostly germs that

she can pick up and get sick from. We have put into place some extra help for

her when she does attend and will, also, start off half days. How many hours

is your son attending school? I hadn't even thought about still having the

home bound teacher come in while Caitlin is attending half days, food for

thought. What state are you in?

How is the MTX going with your son? Have you seen a difference in the six

weeks he has been on it? Caitlin has been on it for just 3 weeks now. She

still gets spots and or a rash in the evening, but gone by the morning. How

much

Prednisone is he on? Caitlin was on 9 mg in the morning, but her hemoglobin

levels were still dropping on that dose so he upped it to 18 mg per day. Three

weeks ago we began to taper her off of it. She is now on 6 mg in the morning

only. Tomorrow, if we go to the rheumy, we will see if she will go down any

further or stop.

I hope you get to your appointment tomorrow.

Take care.

Patty

[Guest guest]

Hi ,

I am now doubly happy that I found your post on The adult RA support group and sent you this way.That is great that you already know Liz, a little more comfort while you get used to the ins and outs of systemic JRA.You are on your way to becomming a JRA pro.

Ask any question and as many as you want .Vent,whine and cry all you need.That is what we are all here for.Nobody understands like another parent who has gone through it or is going through it.

I hope Christian has a great rheumy appointment and you figure out the plan as to either raise the MTX or switch to injections.

HUGS

Becki and 5 systemic

[Guest guest]

In a message dated 1/26/04 2:18:55 PM Central Standard Time, knoblefamily@... writes:

Christian has been at 20mg for 10 weeks now. Do you know what most Docs base the timing on tapering on? Do they expect to see the kids symptom free before starting to taper?

Hi ,

The last couple times we talked I hadn't realized Christian has just been sitting on 20mg for 10 weeks.Each doctor does things a little differant. started on 30mg and tapered 3mg every week.By no means did he just taper off easily.We always got stuck at 9mg and had big flare and back to high doses,sometimes never making it to the 9.Our rheumies are more interested in controling the systemic symptoms so they have pushed on with very active arthritis,until they finaly learned they couldn't do that.The systemic symptoms were always right behingd the arthritis when it got bad.A couple times ,most vivid memory being Dec 01. once again flared and was put on 24mg pred and told to stay there until all sighns of active arthritis were gone then to wait 3 weeks.

Hugs

Becki and 5 systemic

[Guest guest]

Hi ,

Going to try and send our 65 degree weather your way.Don't know if it will work though.We are supposed to get snow tonite and tomorrow.Stupid weathermen,it's not going below freezing and the ground is to warm to stick.

Hopefuly they will get all the snow and ice gone in time.

Hugs

Becki and 5 systemic

[Guest guest]

Dear , Welcome to the group. I hope you find this group as helpful as I have. It has allowed me to keep my sanity these last four years. I am sorry about your son, but it sounds like he is on the right course. My daughter is 15 and has had systemic jra for over four years. Her diagnosis sounds similiar to your son's. Thank God you found your "Liz" . As you have learned, you need to be your child's advocate. Any fear or intimidation you once had for doctors, will soon end with this disease. Most of the mothers here know more than the doctors on this disease for we deal with it everyday, and it affects each child a bit differently. One thing I might suggest that I have found to be very helpful over the years is a diary. There are times I don't use it for months or even over a year, but I can go back and read it and see similiar problems might daughter might be encountering. I seem to forget how bad it can be, until it rears its ugly head again. I keep her symptoms, medicines we have tried, and I even list the activities she had done on that day, and I am starting to enter the weather.

As a bit of comfort, we have found the beginning symptoms to be the worst. It is like a fire that you are trying to put out. You may never get it all of the way out, but you can get it under control, and then control the direction of the flames. Good luck. (n, 15, systemic)

New Mom dealing with JRA

Hi All,I'm new here and I already see my "lifesaver" is a poster...Liz ! Now, I know this must be a great place for support and information.My story (short version)...My 11 year old son got a rash on Oct. 16, next day joint pain in ankles which spread to all joints within a few days, extreme fatigue and low blood pressure put him in the hospital a few days later. They thought it was HSP. He was discharged with the diagnosis of HSP. He continued to decline, weight loss, rash, joint pain, chills and fever. He was hospitalized again for 8 days, all test were run. He was discharged while still having fevers and feeling very sick. There was no pediatric rheumatologist on staff so we were to see one the next day by outpatient. He started him on Prednisone but still thought it might be "a strange virus".(we were at the 5 week marker) My son improved on the prednisone but not enough to be anywhere near symptom free or controlled. This is where my "lifesaver" Liz comes in to the story...the pediatric rheumatologist wanted to treat my son in a very hands off manner (my opinion). He wanted to have the pediatrician be the lead and he would consult via email or phone. We never knew when our next appt was to be or what/when we would need labwork. I then called the Arthritis Foundation and they put me in contact with LIZ.She was a wealth of information and provided me with the ability to focus and advocate for my son. She was an angel and still remains my little safety blanket. I can't begin to tell you the hours she patiently talked to me on the phone, never once making me feel like I was a burden...she saved me in so many ways. We finally saw a pediatric rheumatologist who was going to take charge and run the show (again, thanks to LIZ). He looked at my son's labs from the two hospital stays and outpatient labwork, pictures of the rash and notes from the pediatrician, examined my son fully (the other doc didn't do that) and looked me in the eye and told me that our son has Systemic Onset JRA. He started him on 15 mg. methotrexate and kept him on the prednisone. That was six weeks ago. My son is still not able to attend school (he's in the sixth grade). He tried going back but we could see that the symptoms were quickly increasing and decided to slow down. For now, he attends a few hours a week and works with a Homebound teacher. He has regained the weight he lost and more! We are scheduled to see the pediatric rheumatologist tomorrow but the winter weather may delay that appt. I hope not but we'll see.That's my story...sorry it's so long, I tried to keep it short but it's tough to do so.Glad to be here and I appreciate all these experienced Mom's input and advice.My thoughts are with all of you.

[Guest guest]

In a message dated 1/26/04 1:49:10 PM Eastern Standard Time,

knoblefamily@... writes:

<<

It's interesting that you mentioned strep. Ten days prior to the outbreak

of Christian's rash, he had a " bug " and stayed home from school with a sore

throat. When he broke out in the rash he complained of a very bad sore throat.

When we went to the Doctors that afternoon, they looked at the throat but

didn't do a strep test. The next day we went back to the Doc and they did a

strep

test which came up positive for strep.

>>

Hi :

Sounds exactly like Caitlin. Only difference is her strep was negative by

throat, positive by blood.

<<

We live in VA (northern va.) and Fairfax County >>

LOL you know when you mentioned the weather I thought to myself 'sounds like

our weather' - small world - now I know why, you are a neighbor. I am in No.

VA too, Loudoun County!

<<many other school districts do not like to approve homebound services on a

part time basis. You sort of have to work the system. I have a good

relationship with our Principal and she has been a great advocate for doing what

bests

suits my son. Having the Homebound Teacher along with having my son attend

school part time has been great....it allows him to still feel part of the

class while preventing him from a total decline in health. The Homebound

teacher

is great and Christian is totally up to date in all his classes, even ahead in

a few!>>

Fortunately, we have never had a problem in Loudoun County. I have one child

in special education and I have learned a lot about the ins and outs of my

county. We have never (knock on wood - knock knock knock) had a problem with

services, etc. Fortunately this followed with Caitlin receiving home bound

services. With other requests being put into play for her return, we have only

had " yes " responses WHOHOOO. How many hours a day is Christian at school? How

did they break up the day to ensure that he gets all subjects in? Do they

have him go early one day and late the other day to get all subjects? That's

great that he is not only caught up, but ahead in a few classes. Do the home

bound teachers in Fairfax County come during school hours or after school hours?

How long has Christian been on home bound instruction? How soon did he

attempt to go to school full time?

Hope Christian continues to improve quickly.

Take care.

Patty

[Guest guest]

:

I forgot to ask you in my previous email who your son sees for a pediatric

rheumatologist? Which hospital did he stay at?

Take care.

Patty

[Guest guest]

In a message dated 1/26/04 2:09:18 PM Eastern Standard Time,

bc.price@... writes:

<<

, The sore throat is part of the disease. n will get it, and

she now knows the difference between her arthritis sore throat and a regular

one.

>>

Hi :

If Caitlin is dx'd systemic onset JRA, I would like to know how n

differentiates between an arthritis sore throat and a regular one (or strep

one).

Actually, I'd like to know whether Caitlin is dx'd JRA or not. Could you ask

n to explain as best she can how she tells the difference in sore throats

if she'd be willing? I know each child is different, but if I can give

Caitlin any information to key into it would be great.

Thank you. Take care.

Patty

[Guest guest]

In a message dated 1/26/04 3:56:55 PM Eastern Standard Time,

knoblefamily@... writes:

<<

Christian has been at 20mg for 10 weeks now. Do you know what most

Docs base the timing on tapering on? Do they expect to see the kids

symptom free before starting to taper? Wow, how encouraging to think

that he might have a chance at playing football again. Now, I know

it is the worst sport for someone with this disease but he just loves

it!!!! It seems that everyone is consistant on saying that

this " onset " period is the worst part, that's also good to hear.

>>

Hi :

Caitlin's dose of steroid was upped due to low hemoglobin levels (she was

getting closer to the level they transfuse on). Once the hemoglobin levels went

up (thank God) he immediately started the taper. It's been 3 weeks now and

tomorrow may be her last dose, but we will see the rheumy tomorrow so we'll see

what he thinks/plans to do regarding her steroid dose. Maybe he will bring it

down a bit more, keep her where she is for a bit or stop altogether.

You and I are in the same boat for tomorrow. I hope and pray it doesn't ice!

Good luck getting to your appointment.

Take care.

Patty

[Guest guest]

In a message dated 1/26/04 4:45:41 PM Eastern Standard Time,

helenchollingsworth@... writes:

<< Plus, we had been at

Children's in DC, where they just announced that they are shutting down

the dept. So during this flare I was s >>

Hi Helen:

They are shutting down the entire rheumy department at Children's

Hospital?????

<>

What part of No. VA are you in Helen? Hmmmm, maybe I asked you this before.

If so, sorry I am still learning everyone here:)

Take care.

Patty

[Guest guest]

,

Thanks for the warm welcome and the great tip about the diary. I will start to use one, great idea. Just last night my husband asked me if I have heard of anyone developing systemic JRA at our son's age (11) and I hadn't but now it sounds like that is the age that it happened with your daughter. How long did it take her to be able to attend school and participate in activities? Christian has been out of school since Oct. and still can't attend because he gets too tired and the symptoms start to increase. What type of medicine is your daughter taking now? Christian is now dealing with insomnia..yuck. We give him benadryl at night which works...but I hate to give him yet another drug. How long was your daughter on prednisone? Sorry I'm asking all these questions but I'm so thrilled to find someone who can tell me about a systemic child and who is the same age when the symptoms started.

Thanks so much

(Christian, 12, systemic)

New Mom dealing with JRA

Hi All,I'm new here and I already see my "lifesaver" is a poster...Liz ! Now, I know this must be a great place for support and information.My story (short version)...My 11 year old son got a rash on Oct. 16, next day joint pain in ankles which spread to all joints within a few days, extreme fatigue and low blood pressure put him in the hospital a few days later. They thought it was HSP. He was discharged with the diagnosis of HSP. He continued to decline, weight loss, rash, joint pain, chills and fever. He was hospitalized again for 8 days, all test were run. He was discharged while still having fevers and feeling very sick. There was no pediatric rheumatologist on staff so we were to see one the next day by outpatient. He started him on Prednisone but still thought it might be "a strange virus".(we were at the 5 week marker) My son improved on the prednisone but not enough to be anywhere near symptom free or controlled. This is where my "lifesaver" Liz comes in to the story...the pediatric rheumatologist wanted to treat my son in a very hands off manner (my opinion). He wanted to have the pediatrician be the lead and he would consult via email or phone. We never knew when our next appt was to be or what/when we would need labwork. I then called the Arthritis Foundation and they put me in contact with LIZ.She was a wealth of information and provided me with the ability to focus and advocate for my son. She was an angel and still remains my little safety blanket. I can't begin to tell you the hours she patiently talked to me on the phone, never once making me feel like I was a burden...she saved me in so many ways. We finally saw a pediatric rheumatologist who was going to take charge and run the show (again, thanks to LIZ). He looked at my son's labs from the two hospital stays and outpatient labwork, pictures of the rash and notes from the pediatrician, examined my son fully (the other doc didn't do that) and looked me in the eye and told me that our son has Systemic Onset JRA. He started him on 15 mg. methotrexate and kept him on the prednisone. That was six weeks ago. My son is still not able to attend school (he's in the sixth grade). He tried going back but we could see that the symptoms were quickly increasing and decided to slow down. For now, he attends a few hours a week and works with a Homebound teacher. He has regained the weight he lost and more! We are scheduled to see the pediatric rheumatologist tomorrow but the winter weather may delay that appt. I hope not but we'll see.That's my story...sorry it's so long, I tried to keep it short but it's tough to do so.Glad to be here and I appreciate all these experienced Mom's input and advice.My thoughts are with all of you.

[Guest guest]

It's interesting that you mentioned strep. Ten days prior to the outbreak of Christian's rash, he had a "bug" and stayed home from school with a sore throat. When he broke out in the rash he complained of a very bad sore throat. When we went to the Doctors that afternoon, they looked at the throat but didn't do a strep test. The next day we went back to the Doc and they did a strep test which came up positive for strep.

We live in VA (northern va.) and Fairfax County like many other school districts do not like to approve homebound services on a part time basis. You sort of have to work the system. I have a good relationship with our Principal and she has been a great advocate for doing what bests suits my son. Having the Homebound Teacher along with having my son attend school part time has been great....it allows him to still feel part of the class while preventing him from a total decline in health. The Homebound teacher is great and Christian is totally up to date in all his classes, even ahead in a few!

I haven't noticed an improvement since he started the MTX, but he's only been on it for 6 weeks. He doesn't get the rash or fever anymore, the prednisone seems to help with that. But, he is still greatly fatigued and gets pain in the joints and legs if he walks around too much or does much of anything. The rash and fever stopped with my son once he was on the prednisone for about 4 weeks, we slowly saw a decline in the fever and rash and then it stopped appearing all together.

Where do you live? I hope you get answers soon, I know how you feel.

Re: New Mom dealing with JRA

In a message dated 1/26/04 9:35:58 AM Eastern Standard Time, knoblefamily@... writes:<< My son is still not able to attend school (he's in the sixth grade). He tried going back but we could see that the symptoms were quickly increasing and decided to slow down. For now, he attends a few hours a week and works with a Homebound teacher. He has regained the weight he lost and more! We are scheduled to see the pediatric rheumatologist tomorrow but the winter weather may delay that appt. I hope not but we'll see. >>Hi :Your email has a lot of similarities with my daughter Caitlin. Although we do know that Caitlin had a strep infection that went to her blood. They have not definitively dx'd her with systemic onset JRA or strep induced arthritis. She, like your son, is 11 years old, in the 6th grade, presented with fevers, rash and arthritis, spent time in the hospital and is still being home bound taught. We, too, have an appointment with her rheumy tomorrow, but depending on the weather, may have to reschedule. I hope we can still go as we are getting closer to a dx (I think and hope), want her to be seen and she just had new labs done and I am anxious to see the numbers and what they will tell us. Caitlin will attempt to go back to school next week. She is thrilled with that thought, me, well, it worries me greatly for many reasons, mostly germs that she can pick up and get sick from. We have put into place some extra help for her when she does attend and will, also, start off half days. How many hours is your son attending school? I hadn't even thought about still having the home bound teacher come in while Caitlin is attending half days, food for thought. What state are you in? How is the MTX going with your son? Have you seen a difference in the six weeks he has been on it? Caitlin has been on it for just 3 weeks now. She still gets spots and or a rash in the evening, but gone by the morning. How much Prednisone is he on? Caitlin was on 9 mg in the morning, but her hemoglobin levels were still dropping on that dose so he upped it to 18 mg per day. Three weeks ago we began to taper her off of it. She is now on 6 mg in the morning only. Tomorrow, if we go to the rheumy, we will see if she will go down any further or stop. I hope you get to your appointment tomorrow.Take care.Patty

[Guest guest]

, n was 10 when she got the disease, and about the same time of year as your son--in October, and then hospitalized in mid- November. n is on plaquenil and naprosyn. She has been on steroids twice. The first time was 13 months, and then nine months. She was put on 20mg for 5 days, then 17.5 for five days, then 15, etc. When we got to 10 we went down by 1mg. So she wasn't on high dose for too long. At 5mg she went down by 1/2 mg every 5-7 days. Then at 2 mg we brought her down by 1/4 a month. Something like that anyway, maybe not exact. When you taper the first three days are the worst, and you will learn not to panic. The kids might have some pain, but try to get through it and it gets better on about day 4 of the taper. If your son is still on steroids and gets an afternoon or evening dose, that will cause insomnia. We tried to get the dose to once a day and give it early, by about 7am. This is when the body naturally makes it, and it will help with the imsomnia.

I kind of homeschooled n when she got sick. Somedays she would go to school late or just go for a couple of hours. The school was very good and worked with me. If your son goes to public school he might be qualified to get a tutor for every week of school he misses. n was in fifth grade, so it wasn't too hard for me to teach her. It took only about 2 hours a day. Sometimes she would dictate her work to me and I would write it, because her wrists were so bad. This went on for about three months.

We have always found rest to be very important to n. She will still go thru bouts of where she fatigues easy. It is part to the disease, and sometimes it can be one of the worst parts. I hope this helps. (n, 15, systemic)

New Mom dealing with JRA

Hi All,I'm new here and I already see my "lifesaver" is a poster...Liz ! Now, I know this must be a great place for support and information.My story (short version)...My 11 year old son got a rash on Oct. 16, next day joint pain in ankles which spread to all joints within a few days, extreme fatigue and low blood pressure put him in the hospital a few days later. They thought it was HSP. He was discharged with the diagnosis of HSP. He continued to decline, weight loss, rash, joint pain, chills and fever. He was hospitalized again for 8 days, all test were run. He was discharged while still having fevers and feeling very sick. There was no pediatric rheumatologist on staff so we were to see one the next day by outpatient. He started him on Prednisone but still thought it might be "a strange virus".(we were at the 5 week marker) My son improved on the prednisone but not enough to be anywhere near symptom free or controlled. This is where my "lifesaver" Liz comes in to the story...the pediatric rheumatologist wanted to treat my son in a very hands off manner (my opinion). He wanted to have the pediatrician be the lead and he would consult via email or phone. We never knew when our next appt was to be or what/when we would need labwork. I then called the Arthritis Foundation and they put me in contact with LIZ.She was a wealth of information and provided me with the ability to focus and advocate for my son. She was an angel and still remains my little safety blanket. I can't begin to tell you the hours she patiently talked to me on the phone, never once making me feel like I was a burden...she saved me in so many ways. We finally saw a pediatric rheumatologist who was going to take charge and run the show (again, thanks to LIZ). He looked at my son's labs from the two hospital stays and outpatient labwork, pictures of the rash and notes from the pediatrician, examined my son fully (the other doc didn't do that) and looked me in the eye and told me that our son has Systemic Onset JRA. He started him on 15 mg. methotrexate and kept him on the prednisone. That was six weeks ago. My son is still not able to attend school (he's in the sixth grade). He tried going back but we could see that the symptoms were quickly increasing and decided to slow down. For now, he attends a few hours a week and works with a Homebound teacher. He has regained the weight he lost and more! We are scheduled to see the pediatric rheumatologist tomorrow but the winter weather may delay that appt. I hope not but we'll see.That's my story...sorry it's so long, I tried to keep it short but it's tough to do so.Glad to be here and I appreciate all these experienced Mom's input and advice.My thoughts are with all of you.

[Guest guest]

, The sore throat is part of the disease. n will get it, and she now knows the difference between her arthritis sore throat and a regular one.

Re: New Mom dealing with JRA

In a message dated 1/26/04 9:35:58 AM Eastern Standard Time, knoblefamily@... writes:<< My son is still not able to attend school (he's in the sixth grade). He tried going back but we could see that the symptoms were quickly increasing and decided to slow down. For now, he attends a few hours a week and works with a Homebound teacher. He has regained the weight he lost and more! We are scheduled to see the pediatric rheumatologist tomorrow but the winter weather may delay that appt. I hope not but we'll see. >>Hi :Your email has a lot of similarities with my daughter Caitlin. Although we do know that Caitlin had a strep infection that went to her blood. They have not definitively dx'd her with systemic onset JRA or strep induced arthritis. She, like your son, is 11 years old, in the 6th grade, presented with fevers, rash and arthritis, spent time in the hospital and is still being home bound taught. We, too, have an appointment with her rheumy tomorrow, but depending on the weather, may have to reschedule. I hope we can still go as we are getting closer to a dx (I think and hope), want her to be seen and she just had new labs done and I am anxious to see the numbers and what they will tell us. Caitlin will attempt to go back to school next week. She is thrilled with that thought, me, well, it worries me greatly for many reasons, mostly germs that she can pick up and get sick from. We have put into place some extra help for her when she does attend and will, also, start off half days. How many hours is your son attending school? I hadn't even thought about still having the home bound teacher come in while Caitlin is attending half days, food for thought. What state are you in? How is the MTX going with your son? Have you seen a difference in the six weeks he has been on it? Caitlin has been on it for just 3 weeks now. She still gets spots and or a rash in the evening, but gone by the morning. How much Prednisone is he on? Caitlin was on 9 mg in the morning, but her hemoglobin levels were still dropping on that dose so he upped it to 18 mg per day. Three weeks ago we began to taper her off of it. She is now on 6 mg in the morning only. Tomorrow, if we go to the rheumy, we will see if she will go down any further or stop. I hope you get to your appointment tomorrow.Take care.Patty

[Guest guest]

,

When Christian first started on the prednisone, I didn't mind because it was helping him to feel better and regain the weight he lost but now the insomnia and the constantly being hungry is an issue. He takes 20 mg of prednisone in the morning but still can't get to sleep at night. I will try to give it to him even earlier than I do now and see if it helps with the insomnia. 13 months of prednisone, wow. Did she gain a lot of weight or experience other side effects? Right now, my son is asking if he will be able to play football next season....chances are slim, right??

New Mom dealing with JRA

Hi All,I'm new here and I already see my "lifesaver" is a poster...Liz ! Now, I know this must be a great place for support and information.My story (short version)...My 11 year old son got a rash on Oct. 16, next day joint pain in ankles which spread to all joints within a few days, extreme fatigue and low blood pressure put him in the hospital a few days later. They thought it was HSP. He was discharged with the diagnosis of HSP. He continued to decline, weight loss, rash, joint pain, chills and fever. He was hospitalized again for 8 days, all test were run. He was discharged while still having fevers and feeling very sick. There was no pediatric rheumatologist on staff so we were to see one the next day by outpatient. He started him on Prednisone but still thought it might be "a strange virus".(we were at the 5 week marker) My son improved on the prednisone but not enough to be anywhere near symptom free or controlled. This is where my "lifesaver" Liz comes in to the story...the pediatric rheumatologist wanted to treat my son in a very hands off manner (my opinion). He wanted to have the pediatrician be the lead and he would consult via email or phone. We never knew when our next appt was to be or what/when we would need labwork. I then called the Arthritis Foundation and they put me in contact with LIZ.She was a wealth of information and provided me with the ability to focus and advocate for my son. She was an angel and still remains my little safety blanket. I can't begin to tell you the hours she patiently talked to me on the phone, never once making me feel like I was a burden...she saved me in so many ways. We finally saw a pediatric rheumatologist who was going to take charge and run the show (again, thanks to LIZ). He looked at my son's labs from the two hospital stays and outpatient labwork, pictures of the rash and notes from the pediatrician, examined my son fully (the other doc didn't do that) and looked me in the eye and told me that our son has Systemic Onset JRA. He started him on 15 mg. methotrexate and kept him on the prednisone. That was six weeks ago. My son is still not able to attend school (he's in the sixth grade). He tried going back but we could see that the symptoms were quickly increasing and decided to slow down. For now, he attends a few hours a week and works with a Homebound teacher. He has regained the weight he lost and more! We are scheduled to see the pediatric rheumatologist tomorrow but the winter weather may delay that appt. I hope not but we'll see.That's my story...sorry it's so long, I tried to keep it short but it's tough to do so.Glad to be here and I appreciate all these experienced Mom's input and advice.My thoughts are with all of you.

[Guest guest]

Thanks for your support. How is your son doing now?

> Hi . I have a 6th grade boy as well, who got

polyarticular jra

> last year. If you ever need an extra person to talk to, feel free

to

> contact me (I am not new, but still consider myself a rookie).

Though we

> all share a great many experiences, we also all have our different

> perspectives on this disease, depending on subtype and age of

onset.

> You have a treasure trove of experience to tap into here, and I have

> found it to be a very helpful thing. Other people just don't seem

to

> " get " it. I have also had Liz as my mentor this past year, and I

know

> how kind and helpful she is. Good luck, I hope the snow didn't get

in the

> way of your appointment. hh

[Guest guest]

.

You are too sweet!

Liz

New Mom dealing

with JRA

Hi All,

I'm new here and I already see my

" lifesaver " is a poster...Liz

! Now, I know this must be a great

place for support and

information.

My story (short version)...My 11 year old son got

a rash on Oct. 16,

next day joint pain in ankles which spread to all

joints within a few

days, extreme fatigue and low blood pressure put

him in the hospital

a few days later. They thought it was

HSP. He was discharged with

the diagnosis of HSP. He continued to

decline, weight loss, rash,

joint pain, chills and fever. He was

hospitalized again for 8 days,

all test were run. He was discharged while

still having fevers and

feeling very sick. There was no pediatric

rheumatologist on staff so

we were to see one the next day by

outpatient. He started him on

Prednisone but still thought it might be " a

strange virus " .(we were

at the 5 week marker) My son improved on the

prednisone but not

enough to be anywhere near symptom free or

controlled.

This is where my " lifesaver " Liz comes

in to the story...the

pediatric rheumatologist wanted to treat my son in

a very hands off

manner (my opinion). He wanted to have the

pediatrician be the lead

and he would consult via email or phone. We

never knew when our next

appt was to be or what/when we would need

labwork. I then called the

Arthritis Foundation and they put me in contact

with LIZ.

She was a wealth of information and provided me

with the ability to

focus and advocate for my son. She was an

angel and still remains my

little safety blanket. I can't begin to tell

you the hours she

patiently talked to me on the phone, never once

making me feel like I

was a burden...she saved me in so many ways.

We finally saw a pediatric rheumatologist who was

going to take

charge and run the show (again, thanks to

LIZ). He looked at my

son's labs from the two hospital stays and

outpatient labwork,

pictures of the rash and notes from the

pediatrician, examined my son

fully (the other doc didn't do that) and looked me

in the eye and

told me that our son has Systemic Onset JRA.

He started him on 15

mg. methotrexate and kept him on the

prednisone. That was six weeks

ago.

My son is still not able to attend school (he's in

the sixth grade).

He tried going back but we could see that the

symptoms were quickly

increasing and decided to slow down. For

now, he attends a few hours

a week and works with a Homebound teacher.

He has regained the

weight he lost and more! We are scheduled to

see the pediatric

rheumatologist tomorrow but the winter weather may

delay that appt.

I hope not but we'll see.

That's my story...sorry it's so long, I tried to

keep it short but

it's tough to do so.

Glad to be here and I appreciate all these

experienced Mom's input

and advice.

My thoughts are with all of you.

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[Guest guest]

n really didn't gain any weight at that taper level. There is a very strong chance that your son could be pretty good to play football. n dances , skis, and does high jump. There are times that she misses, but in summer it seems like she is near 100%. n always has a tough Dec. Jan, and Feb. Don't know why, if we did, we could cure the dumb disease. (n, 15, systemic)

p.s. How long has your son been at 20mg, and has he tapered at all? I have found with n(and all kids are different) the longer we stayed at a dose, the harder it was to lower. So we kept a moving on with the tapering.

New Mom dealing with JRA

Hi All,I'm new here and I already see my "lifesaver" is a poster...Liz ! Now, I know this must be a great place for support and information.My story (short version)...My 11 year old son got a rash on Oct. 16, next day joint pain in ankles which spread to all joints within a few days, extreme fatigue and low blood pressure put him in the hospital a few days later. They thought it was HSP. He was discharged with the diagnosis of HSP. He continued to decline, weight loss, rash, joint pain, chills and fever. He was hospitalized again for 8 days, all test were run. He was discharged while still having fevers and feeling very sick. There was no pediatric rheumatologist on staff so we were to see one the next day by outpatient. He started him on Prednisone but still thought it might be "a strange virus".(we were at the 5 week marker) My son improved on the prednisone but not enough to be anywhere near symptom free or controlled. This is where my "lifesaver" Liz comes in to the story...the pediatric rheumatologist wanted to treat my son in a very hands off manner (my opinion). He wanted to have the pediatrician be the lead and he would consult via email or phone. We never knew when our next appt was to be or what/when we would need labwork. I then called the Arthritis Foundation and they put me in contact with LIZ.She was a wealth of information and provided me with the ability to focus and advocate for my son. She was an angel and still remains my little safety blanket. I can't begin to tell you the hours she patiently talked to me on the phone, never once making me feel like I was a burden...she saved me in so many ways. We finally saw a pediatric rheumatologist who was going to take charge and run the show (again, thanks to LIZ). He looked at my son's labs from the two hospital stays and outpatient labwork, pictures of the rash and notes from the pediatrician, examined my son fully (the other doc didn't do that) and looked me in the eye and told me that our son has Systemic Onset JRA. He started him on 15 mg. methotrexate and kept him on the prednisone. That was six weeks ago. My son is still not able to attend school (he's in the sixth grade). He tried going back but we could see that the symptoms were quickly increasing and decided to slow down. For now, he attends a few hours a week and works with a Homebound teacher. He has regained the weight he lost and more! We are scheduled to see the pediatric rheumatologist tomorrow but the winter weather may delay that appt. I hope not but we'll see.That's my story...sorry it's so long, I tried to keep it short but it's tough to do so.Glad to be here and I appreciate all these experienced Mom's input and advice.My thoughts are with all of you.

[Guest guest]

Christian has been at 20mg for 10 weeks now. Do you know what most

Docs base the timing on tapering on? Do they expect to see the kids

symptom free before starting to taper? Wow, how encouraging to think

that he might have a chance at playing football again. Now, I know

it is the worst sport for someone with this disease but he just loves

it!!!! It seems that everyone is consistant on saying that

this " onset " period is the worst part, that's also good to hear.

> n really didn't gain any weight at that taper level. There is

a very strong chance that your son could be pretty good to play

football. n dances , skis, and does high jump. There are times

that she misses, but in summer it seems like she is near 100%.

n always has a tough Dec. Jan, and Feb. Don't know why, if we

did, we could cure the dumb disease. (n, 15, systemic)

> p.s. How long has your son been at 20mg, and has he tapered at

all? I have found with n(and all kids are different) the

longer we stayed at a dose, the harder it was to lower. So we kept a

moving on with the tapering.

> New Mom dealing with JRA

>

>

> Hi All,

> I'm new here and I already see my " lifesaver " is a

poster...Liz

> ! Now, I know this must be a great place for

support and

> information.

>

> My story (short version)...My 11 year old son got a rash

on Oct. 16,

> next day joint pain in ankles which spread to all joints

within a few

> days, extreme fatigue and low blood pressure put him in

the hospital

> a few days later. They thought it was HSP. He was

discharged with

> the diagnosis of HSP. He continued to decline, weight

loss, rash,

> joint pain, chills and fever. He was hospitalized again

for 8 days,

> all test were run. He was discharged while still having

fevers and

> feeling very sick. There was no pediatric rheumatologist

on staff so

> we were to see one the next day by outpatient. He

started him on

> Prednisone but still thought it might be " a strange

virus " .(we were

> at the 5 week marker) My son improved on the prednisone

but not

> enough to be anywhere near symptom free or controlled.

>

> This is where my " lifesaver " Liz comes in to the

story...the

> pediatric rheumatologist wanted to treat my son in a very

hands off

> manner (my opinion). He wanted to have the pediatrician

be the lead

> and he would consult via email or phone. We never knew

when our next

> appt was to be or what/when we would need labwork. I

then called the

> Arthritis Foundation and they put me in contact with LIZ.

>

> She was a wealth of information and provided me with the

ability to

> focus and advocate for my son. She was an angel and

still remains my

> little safety blanket. I can't begin to tell you the

hours she

> patiently talked to me on the phone, never once making me

feel like I

> was a burden...she saved me in so many ways.

>

> We finally saw a pediatric rheumatologist who was going

to take

> charge and run the show (again, thanks to LIZ). He

looked at my

> son's labs from the two hospital stays and outpatient

labwork,

> pictures of the rash and notes from the pediatrician,

examined my son

> fully (the other doc didn't do that) and looked me in the

eye and

> told me that our son has Systemic Onset JRA. He started

him on 15

> mg. methotrexate and kept him on the prednisone. That

was six weeks

> ago.

>

> My son is still not able to attend school (he's in the

sixth grade).

> He tried going back but we could see that the symptoms

were quickly

> increasing and decided to slow down. For now, he attends

a few hours

> a week and works with a Homebound teacher. He has

regained the

> weight he lost and more! We are scheduled to see the

pediatric

> rheumatologist tomorrow but the winter weather may delay

that appt.

> I hope not but we'll see.

>

> That's my story...sorry it's so long, I tried to keep it

short but

> it's tough to do so.

>

> Glad to be here and I appreciate all these experienced

Mom's input

> and advice.

>

> My thoughts are with all of you.

>

>

>

>

>

>

> --------------------------------------------------------------------

--

>

[Guest guest]

That is a long time to be on a dose before tapering. Maybe some of the other parents will chime in who have experience on being on a higher dose that long. Georgina has alot of steroid experience. She posts every week or so. She is the founder of this group. Someday we all need to go to house for a dinner party, wouldn't that be great? She lives in Mauii. Did I spell that right?

New Mom dealing with JRA> > > Hi All,> I'm new here and I already see my "lifesaver" is a poster...Liz > ! Now, I know this must be a great place for support and > information.> > My story (short version)...My 11 year old son got a rash on Oct. 16, > next day joint pain in ankles which spread to all joints within a few > days, extreme fatigue and low blood pressure put him in the hospital > a few days later. They thought it was HSP. He was discharged with > the diagnosis of HSP. He continued to decline, weight loss, rash, > joint pain, chills and fever. He was hospitalized again for 8 days, > all test were run. He was discharged while still having fevers and > feeling very sick. There was no pediatric rheumatologist on staff so > we were to see one the next day by outpatient. He started him on > Prednisone but still thought it might be "a strange virus".(we were > at the 5 week marker) My son improved on the prednisone but not > enough to be anywhere near symptom free or controlled. > > This is where my "lifesaver" Liz comes in to the story...the > pediatric rheumatologist wanted to treat my son in a very hands off > manner (my opinion). He wanted to have the pediatrician be the lead > and he would consult via email or phone. We never knew when our next > appt was to be or what/when we would need labwork. I then called the > Arthritis Foundation and they put me in contact with LIZ.> > She was a wealth of information and provided me with the ability to > focus and advocate for my son. She was an angel and still remains my > little safety blanket. I can't begin to tell you the hours she > patiently talked to me on the phone, never once making me feel like I > was a burden...she saved me in so many ways. > > We finally saw a pediatric rheumatologist who was going to take > charge and run the show (again, thanks to LIZ). He looked at my > son's labs from the two hospital stays and outpatient labwork, > pictures of the rash and notes from the pediatrician, examined my son > fully (the other doc didn't do that) and looked me in the eye and > told me that our son has Systemic Onset JRA. He started him on 15 > mg. methotrexate and kept him on the prednisone. That was six weeks > ago. > > My son is still not able to attend school (he's in the sixth grade). > He tried going back but we could see that the symptoms were quickly > increasing and decided to slow down. For now, he attends a few hours > a week and works with a Homebound teacher. He has regained the > weight he lost and more! We are scheduled to see the pediatric > rheumatologist tomorrow but the winter weather may delay that appt. > I hope not but we'll see.> > That's my story...sorry it's so long, I tried to keep it short but > it's tough to do so.> > Glad to be here and I appreciate all these experienced Mom's input > and advice.> > My thoughts are with all of you.> > > > > > > ---------------------------------------------------------------------->

[Guest guest]

Becki,

Well, I need to thank you for sending me this way. I already feel

like I'm more knowledgable than I was 24 hours ago! Thanks for

guiding me to this board, you're doing great work here and should be

proud. You are so right...nobody understands like another parent. I

hope I will be able to make the rheumy appointment, the weather may

be get in the way. I hope not. Thanks again Becki for guiding me to

this board.

> Hi ,

> I am now doubly happy that I found your post on The adult RA

support group

> and sent you this way.That is great that you already know Liz, a

little more

> comfort while you get used to the ins and outs of systemic JRA.You

are on your

> way to becomming a JRA pro.

> Ask any question and as many as you want .Vent,whine and cry all

you

> need.That is what we are all here for.Nobody understands like

another parent who has

> gone through it or is going through it.

> I hope Christian has a great rheumy appointment and you figure out

the plan

> as to either raise the MTX or switch to injections.

> HUGS

> Becki and 5 systemic

[Guest guest]

, Two more things. Bring your son to a ped. opthomalogist every six months. Systemic usually doesn't go for the eyes, but in rare instances it can. Also, it is just my opinion, but at that dose of steroids for that length I would give your son additional calcium. We just gave n over the counter Viactin. Also, give your son additional folic acid with the mtx. It helps with any side effects. There are plenty of people here that can give you the doses if you need them. (n, 15, systemic)

Re: New Mom dealing with JRA

Becki,Well, I need to thank you for sending me this way. I already feel like I'm more knowledgable than I was 24 hours ago! Thanks for guiding me to this board, you're doing great work here and should be proud. You are so right...nobody understands like another parent. I hope I will be able to make the rheumy appointment, the weather may be get in the way. I hope not. Thanks again Becki for guiding me to this board. > Hi ,> I am now doubly happy that I found your post on The adult RA support group > and sent you this way.That is great that you already know Liz, a little more > comfort while you get used to the ins and outs of systemic JRA.You are on your > way to becomming a JRA pro.> Ask any question and as many as you want .Vent,whine and cry all you > need.That is what we are all here for.Nobody understands like another parent who has > gone through it or is going through it.> I hope Christian has a great rheumy appointment and you figure out the plan > as to either raise the MTX or switch to injections.> HUGS> Becki and 5 systemic

[Guest guest]

To some I suppose the importance of playing football would seem

strange considering the disease. But, you sound like you have a

child who has the football bug, so you know how important this sport

can be to a child. Christian plays for SYA here in Centreville. He

just loves it. It's something we haven't even mentioned to the

rheumy yet, so many other things to consider and control first. He

needs to also get his second phase of braces but the Ortho is

concerned about proceeding with that for fear of jaw issues with the

JRA. We are seeing Dr. Gewanter in Richmond who I just love. The

second time Christian got out of the hospital we saw another rheumy

who wasn't a good fit for us. I hope Teddy (love that name)continues

to improve, my thoughts are with you.

>

> Teddy is doing pretty well compared to others, I suppose. Thanks

for

> asking. He's just gone through a rough spell in the last couple of

> weeks, so I am a little burnt out on it. Plus, we had been at

> Children's in DC, where they just announced that they are shutting

down

> the dept. So during this flare I was scrambling with no one to

really

> guide me medically. I was getting lots of different opinions etc.

Kind

> of frustrating.

>

> I noticed that you are in NoVA. We are, too. Teddy used to play

> football, but has missed the last 2 seasons because of the jra.

This,

> actually, has been one of the most upsetting parts of the whole

thing to

> him. He won't be allowed to play until he is " in remission " but I

don't

> know what that means, yet. Since we are having to change doctors,

maybe

> we'll get a different perspective on the football issue. His old

doctor

> was anti-football, probably even for " regular " kids. This is a

hope he

> holds very dear. It is his absolute, favorite thing to do in the

world.

> It doesn't help that his younger brother plays and that his dad

coaches,

> either. Maybe your doc will be less conservative, maybe it depends

on

> what joints are involved, I'm not sure. Even though he can't play

> football yet, he does play baseball and is on a swim team. I'm

really

> proud of his resilience and ability to switch gears. It sounds

like the

> 2 of them have a lot in common. hh

[Guest guest]

When you say " until all signs of arthritis were gone " , do you mean

even the extreme tiredness in the legs and arms? Christian's sharp

pains have lessoned to extreme tiredness in legs and arms, and

overall. He can walk around fine now as opposed to when it was

really bad and needed assist to walk, go to the bathroom or do

anything. What has been your experience with the systemic fever and

rash coming back during the tapering process?

> In a message dated 1/26/04 2:18:55 PM Central Standard Time,

> knoblefamily@c... writes:

>

>

> >

> > Christian has been at 20mg for 10 weeks now. Do you know what

most

> > Docs base the timing on tapering on? Do they expect to see the

kids

> > symptom free before starting to taper?

>

> Hi ,

> The last couple times we talked I hadn't realized Christian has

just been

> sitting on 20mg for 10 weeks.Each doctor does things a little

differant.

> started on 30mg and tapered 3mg every week.By no means did he just

taper off

> easily.We always got stuck at 9mg and had big flare and back to

high

> doses,sometimes never making it to the 9.Our rheumies are more

interested in controling the

> systemic symptoms so they have pushed on with very active

arthritis,until

> they finaly learned they couldn't do that.The systemic symptoms

were always right

> behingd the arthritis when it got bad.A couple times ,most vivid

memory being

> Dec 01. once again flared and was put on 24mg pred and told to

stay

> there until all sighns of active arthritis were gone then to wait 3

weeks.

> Hugs

> Becki and 5 systemic

[Guest guest]

In a message dated 1/26/04 3:55:15 PM Central Standard Time, knoblefamily@... writes:

When you say "until all signs of arthritis were gone", do you mean even the extreme tiredness in the legs and arms? Christian's sharp pains have lessoned to extreme tiredness in legs and arms, and overall. He can walk around fine now as opposed to when it was really bad and needed assist to walk, go to the bathroom or do anything. What has been your experience with the systemic fever and rash coming back during the tapering process?

Hi ,

For a very long time all the rheumies wanted was to taper the pred.I was in such a state of denial I might have played a role in the rapid taper,only to fail each time.On a good note,they knew was not responding to the MTX. and I learned from this list all the WISHING in the world would not make my son miraculous better.We switched to injectable MTX after talking to several moms and it realy helped,but no where enough.It was obvious was stubborn.

used to suffer from terrible,God awful Myalgas.All over muscle pain.You couldn' touch him anywhere without screaming.Joints contracted and stuck.

The high doses of 25mg MTX,200mg Plaquenil,800mg Ibuprofin,and an abudance of steroids kept things well,except lft ankle.We had that stubborn thing drained and injected with steroids twice.I have a copy of the orthos letter saying has Pauci JRA with a refractory lft ankle.

To answer your question about steroids and cut and dry with no arthritis.At the very end YES.Nothing,nota,just gone and been that way for almost 15 months.One more week.Plenty of drug tapers to go.I have learned that it wiill take over twice as long to taper then to get control.

Hugs

Becki and 5 systemic