Re: New Mom dealing with JRA

[Guest guest]

Patty,

Hi neighbor! To answer some of your questions. Christian was in

Fairfax Hospital both times, he now sees Dr. Gewanter in Richmond. I

really love him and so does Christian. Prior to seeing Dr. G, we

were seeing another rheumy who just wasn't a good fit for us.

Regarding school, after the holiday break Christian tried to attend 5

days a week for just the mornings but was unable to do so without the

symptoms increasing. He attends school on no set scheudule, usually

he goes in around 10:00 and will leave around 1:15, two days a

week...sometimes three days a week. He just tires too much and is

unable to do anymore than that right now. The homebound teacher

happens to be a neighbor and is wonderful! She comes two days a week

in the afternoon for about 2-3 hours each time. She concentrates on

the core subjects, and it has worked well so far. He started

homebound instruction in early December. Until that point he was too

sick to even try school work. I plan to ask the Doctor tomorrow

(hopefully) when he thinks he will be able to attend school full time

again. Christian's biggest fear is to end up in the hospital again,

so if we need to take it slow we will do so. Who do you take Caitlin

to see? Not many in this area.

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

> knoblefamily@c... 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]

Originally we were seeing a Doc from town Hospital and then we

switched to Dr. Gewanter in Richmond, our first visit with him was on

Dec. 18, 2004. I too was concerned about the drive, we live in

Clifton Va (Little Rocky Run). But, after meeting with Dr. G, oh my

gosh...I would have driven 4 hours for him. I can't even begin to

tell you how skilled he is and how wonderful he was with my son. He

took the time to find out Christian's interests (football) and

discussed the medical plan in terms of a football play...totally cool

in Christian's eyes. The drive takes us just under two hours. It is

something to consider when selecting a Doc but for us, it seems to be

working. Isn't Dr. White going to see patients at G.W. soon?

Good Luck.

> To and Patty, I am interested in who you are seeing,

since we

> are Children's Hosp. orphans. Teddy sees Dr Jafaar for

opthalmology at

> the Fairfax satellite on Rte 50. We live in Oakton, but Richmond

seems

> so far! I know Liz says it's not that bad, but I would still like

to see

> what else is out there. hh

[Guest guest]

Hi,

I wanted to say hello and welcome all of our newest members. Even though

I'm replying to the message sent, I figured I'd provide some

background info about our situation so that all of our newest list

members will have an idea of what the JRA journey has been like for us.

While our children all share some of the same features (namely, joint

pain and inflammation) each case is also somewhat unique.

My son was younger than Christian when the first symptoms of systemic

JRA appeared. He had just had his 6th birthday in April (of 1995) and

got sick in the month of May. He missed the last month or so of school

but then had those few months of summer break to try to recuperate.

Unfortunately, 's arthritis was unrelenting for the first few

years. Mornings were always especially hard for him. He had a lot of

joint stiffness and pain often lasting for at least a couple of hours.

You'll read that many children with systemic JRA who have fevers

usually have the high temps only in the evening. My son was different.

He used to wake up each day with very high fevers which would subside by

around noon on most days and then return in the evenings around 6pm or

so. His cycle was twice daily.

As you know from your own experience, painful mornings can make

something as normal as attending school very difficult. We were very

fortunate in that staff at my son's elementary school was very

cooperative with planning how best to accommodate for his needs.

often went in late. Instead of arriving at 7:50 he could arrive at

10:00, right as morning recess was ending. That helped allow for a long

early morning bath with time for him to do some range of motion

exercises to help loosen up. Some days though, he just wasn't well

enough to make it in. He tended to miss many more school days than a

child who doesn't have a chronic illness. Still does, I guess, but not

nearly as many now. He's gotten a lot of academic awards but has never

yet been able to get a Perfect Attendance certificate. Still, I always

felt that school was such an important part of a child's growth and

socialization process so we strove to keep him enrolled full-time and

work around his health issues.

Most of the time I worked with and tutored him at home myself. He never

wanted to fall behind in his studies and was usually a little bit ahead

of the class. When he reached 4th grade the school wanted to provide a

part-time tutor to have in place for whenever he needed it. The normal

policy here, I think, is that a child needs to miss a week or more,

consecutively, for tutoring services. They changed it for him. During

flare ups, they had a tutor come to our home to work with him for an

hour and a half during after school hours, the time of day when he was

usually feeling his best. I'm not sure that was very helpful but it was

better than having it at school because he'd be taken out of his regular

class for the services and we didn't want that. When he was well enough

to be in school he was. We were, however, on a first name basis with the

health room aide.

Fatigue has played such a big role in his disease course. We used to

joke that he was like a modern day Rip van Winkle. He could go to sleep

at 8pm and sleep till 7am. He'd bathe or shower, eat breakfast, and

still be so tired that he'd want to nap again. He had anemia much of the

time, anemia related to chronic illness which didn't improve much with

additional iron supplementation. He always seemed to need more sleep

than, say, his younger sister or his same-age friends. This aspect has

changed some, since he began taking human growth hormone. It has really

boosted his energy level during waking hours. He still does best when he

has about 10 hours of sleep each night, though. You'll probably find,

though, that as the child's arthritis is better controlled they tend to

have more energy.

asked about n's prednisone history. I felt I should

point out an opposite extreme, since my son falls at the other end of

the spectrum. He is among the minority of children with systemic JRA

that have been on long-term steroid therapy. He's been taking prednisone

daily for almost 9 years. He's had some of the typical side effects,

like weight gain, increased appetite, extra hair growth, moodiness, but

only at high doses. Later on, even when he was taking as much as 10 or

12.5mgs a day, these most noticeable changes disappeared. He's also had

some of the other unwanted side effects, such as mild cataracts, stunted

growth, and osteoporosis. At higher doses he also bruised more easily

but the NSAIDs may have contributed to that, as well.

We had lots of difficulty trying to taper his dose in the early years.

9mgs seemed to be the lowest dose that wouldn't trigger a flare and each

time we tried to get lower we'd have to raise, usually double, the dose

to control his symptoms and try to get back where we started again.

30mgs per day wasn't unheard of, before we switched from oral to

injectable Methotrexate dosing. That really made a huge difference in

his overall well-being. For the first 4 and a half years he took

Methotrexate in pill form, starting at 7.5 and gradually increasing to

15mgs, and still struggled with persistently active arthritis despite

aggressive treatment (which included Prednisone, NSAIDs, and another

DMARD called Plaquenil).

A month after Josh began taking MTX by injection his SED rate dropped to

the high 30's which, though still elevated, was a major improvement for

him. His hemoglobin and haematocrit levels were still off and his white

blood cell count remained elevated but all of a sudden we saw new

possibilities open up and knew that there was a good chance he'd be

okay. Eventually all of his labs began to improve and it seemed like he

was in a medicated remission. Successfully tapering his steroids became

more feasible. He finally got down to a low of 2mgs per day, which is

where he's at now. Since June! We see the doctor at the end of the month

and it may be time to lower again. Probably to 1.5mgs.

He still has some joint pain (right now only in his wrists and neck),

some muscle pain, and morning stiffness even now on some days (he missed

a day of school last week) but he's doing much better than before. When

he catches a viral infection or something like that, it exasperates his

arthritis symptoms each and every time and takes him longer to recover

from ... but flareups are fewer and farther in between, no longer part

of an 'almost everyday' scenario. Rash and fevers, which used to occur

daily, have become rare. Even when he feels really sick and feels warm

to the touch, he hardly ever has a temp. Many more good days than bad,

nowadays, but he struggled allot for, in total, about 5 years.

Moral of the story? The beginning is probably the hardest part. Coming

to terms with your child's diagnosis. Learning to live with a family

member who suddenly has a chronic illness and faces pain and mobility

issues. Making lifestyle changes, having to schedule lots of doctor

appointments instead of seeing them only once or twice a year. Trying to

be patient while doctors try to tailor a workable therapy, finding a

combination of the most effective meds with the fewest side effects, to

try to alleviate symptoms and prevent continued joint destruction and

progression of disease. A constant balancing act but with the advent of

many new medications in the past decade it doesn't appear to be quite so

'hit or miss' anymore. The prognosis for a child with JRA, now, is

better than ever before.

Okay. Very wordy. But hopefully it will help someone to see what it was

like from our perspective. I better stop typing now and continue reading

all the posts I have to catch up with.

Take Care,

Georgina

knoblefamily wrote:

> ,

> 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)

[Guest guest]

n says that it comes and goes. She may have it in the morning, and then it disappears. Or it may be in the evening and then leaves. When she has it, she says it really hurts. It will hurt to breathe, her throat that is. I hope that helps. Hope that helps.

Re: New Mom dealing with JRA

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]

Thanks for sharing your story, I really appreciate it. Just found

out that our appt. for tomorrow will need to be rescheduled due to

weather...darn! Hopefully, we will be " fit in " soon.

> > ,

> > 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)

[Guest guest]

Hi Patty. Yes, they just announced this month that the rheum clinic at

Children's is shutting down on Jan 31, I have several options for a new

doctor, but I was just looking for any more info to help me make my

decision. Dr White is likely starting a practice in DC, but that isn't

set yet. I have heard great things about Gewanter, and liked him at the

AJAO meeting this summer, so I know I can't go wrong in going down to

Richmond. My problem is that I have 3 other kids, all younger than

Teddy, and it's a hassle to go that far on a school day. We're in

Oakton, pretty close to the Vienna metro. hh

[Guest guest]

In a message dated 1/26/04 5:57:48 PM Eastern Standard Time,

knoblefamily@... writes:

<< Christian was in

Fairfax Hospital both times, he now sees Dr. Gewanter in Richmond. I

really love him and so does Christian. Prior to >>

Hi :

Caitlin was in Fairfax too. For all we know they could have been there at

the same time LOL. When I mentioned your son to Caitlin, she said it would be

great to have someone her age to talk to regarding this illness.

Doesn't Liz go to Dr. Gewanter? Were you able to get to your appointment

today?

<<Christian's biggest fear is to end up in the hospital again,

so if we need to take it slow we will do so>>

I can understand that fear. Who wants to go back to the hospital:( Slow is

the best approach. I hope he gets back to school full time soon. I am sure

he's missing his friends, etc.

<<Who do you take Caitlin

to see? Not many in this area.>>

We see Dr. Nguyen in Reston. He sees adults and children, though he is not a

pediatric rheumatologist. He did train under the pediatric rheumy at

town. Caitlin thinks he's great. He's been right on top of everything

with

her. Worried about her and called daily from his family vacation during the

holidays to check in on her. He is taking an aggressive approach with her

treatment too. He is very calm and gentle with Caitlin. I always feel better

after

leaving his office (well except when he mentioned a bone marrow biopsy, then

I left feeling nauseated and panicked).

Take care. Stay warm.

Patty

[Guest guest]

In a message dated 1/26/04 8:24:36 PM Eastern Standard Time,

knoblefamily@... writes:

<< The drive takes us just under two hours. It is

something to consider when selecting a Doc but for us, it seems to be

working. Isn't Dr. White going to see patients at G.W. soon?

>>

Hi :

I, too, would drive a long way for a great doctor. When you think about it,

it can take over an hour to get into DC/Childrens Hospital and an hour and a

half to get to Hopkins, so it's not much longer a commute.

Take care.

Patty

[Guest guest]

Thanks . I think I will add a sore throat area to my journal of

Caitlin's symptoms and see if any kind of pattern appears.

Take care.

Patty

[Guest guest]

In a message dated 1/27/04 1:43:34 PM Eastern Standard Time,

helenchollingsworth@... writes:

<<

Hi Patty. Yes, they just announced this month that the rheum clinic at

Children's is shutting down on Jan 31, I have several options for a new

doctor, but I was just looking for any more info to help me make my

decision. Dr White is likely starting a practice in DC, but that isn't

set yet. I have heard great things about Gewanter, and liked him at the

AJAO meeting this summer, so I know I can't go wrong in going down to

Richmond. My problem is that I have 3 other kids, all younger than

Teddy, and it's a hassle to go that far on a school day. We're in

Oakton, pretty close to the Vienna metro. hh

>>

Hi Helen:

Do you like Dr. White? What is the AJAO?

I understand the difficulty in traveling far on a school day with three

younger children! That would be a tough one. Any family/friends/neighbors

nearby

that can watch them a little bit after school one day? You aren't far from me

either:) We should all get together for coffee someday:)

Take care and stay warm.

Patty

[Guest guest]

Hi :

Yeah, I am thrilled that you were able to make your appointment too today.

You certainly had a much longer commute than I did with this lovely ice and

snow. Glad it was a safe trip.

Did you and Liz know eachother would be there or was is a pleasant surprise?

That would be funny if it was just a surprise. Drive 2 hours and meet

someone you know there LOL. When my husband and I were on our honeymoon in

Disney/Florida we saw a couple we knew from my husband's work there too LOL (we

were

living in MA at that point in time) - small world. That's great that you all

had a nice lunch date together.

I hope the prednisone tapers goes smoothly for Christian. Bummer about the

not returning to school. Was Christian really upset by that? You are right

about taking it slowly. I am starting to question Caitlin's return to school

next week, something I want to post in a few minutes.

<<Did your daughter have the bone marrow biopsy? Christian had one in

the hospital and it was the only proceedure that I was totally not

prepared for, there was more to it than I expected.

>>

Yes, Caitlin did have a bone marrow biopsy done. She had it done on an

emergency basis (rheumy late afternoon, Children's next am) at Children's

Hospital

on, of all days, Christmas Eve Day. The one word I can explain a bone marrow

biopsy: nightmare. It was so painful for Caitlin (can't numb bone), her

reaction to the meds freaked me out (strange to see your 11 year old drugged up)

and it was heartwreching for me to watch. I do know that it had to be done.

Georgina told me a story about a young boy who was dx'd JRA when, in fact, he

had leukemia and this sweet, innocent little boy died a year later:( So I am

grateful the rheumy ordered the test and even more grateful her results were

negative, thank God. When Caitlin was at Fairfax they never even mentioned

luekemia or a bone marrow biopsy.

<<Christian, being a boy, isn't always the most expressive but today at

lunch I noticed that he listened to Liz's daughter as she spoke of

her experiences. It would be nice to get all the kids together,

we're close enough to do so. I'll check with Liz too, or maybe she

will read this.>>

That would be great if we could get them together. I know Christian is

Caitlin's age, but I don't know how old Liz's daughter is - how old is she?

Maybe

us mom could get together too:)

Take care and stay warm, it's nasty out there.

Patty

[Guest guest]

Patty,

Yes, I did get our appointment in today. I saw Liz there and we took

the kids for lunch after their appointments...it was nice. Dr. G

wants Christian to remain at 20mg methotrexate and will begin to

decrease the predisone 2 1/2 mg. every two weeks if Christian can

handle it. He doesn't feel that Christian will be able to return to

school on a full time basis this year and wants him to continue with

homebound instruction and attending school on a very part time

basis. He gave us some alternatives to deal with the insomnia,

relaxation ideas. So, for the most part it was a good visit. I was

disappointed to hear that Christian won't be attending school full

time this year but I've learned to embrace his slowly improving

health.

Did your daughter have the bone marrow biopsy? Christian had one in

the hospital and it was the only proceedure that I was totally not

prepared for, there was more to it than I expected.

Christian, being a boy, isn't always the most expressive but today at

lunch I noticed that he listened to Liz's daughter as she spoke of

her experiences. It would be nice to get all the kids together,

we're close enough to do so. I'll check with Liz too, or maybe she

will read this.

> In a message dated 1/26/04 5:57:48 PM Eastern Standard Time,

> knoblefamily@c... writes:

>

> << Christian was in

> Fairfax Hospital both times, he now sees Dr. Gewanter in

Richmond. I

> really love him and so does Christian. Prior to >>

>

> Hi :

>

> Caitlin was in Fairfax too. For all we know they could have been

there at

> the same time LOL. When I mentioned your son to Caitlin, she said

it would be

> great to have someone her age to talk to regarding this illness.

>

> Doesn't Liz go to Dr. Gewanter? Were you able to get to your

appointment

> today?

>

> <<Christian's biggest fear is to end up in the hospital again,

> so if we need to take it slow we will do so>>

>

> I can understand that fear. Who wants to go back to the hospital:

( Slow is

> the best approach. I hope he gets back to school full time soon.

I am sure

> he's missing his friends, etc.

>

> <<Who do you take Caitlin

> to see? Not many in this area.>>

>

> We see Dr. Nguyen in Reston. He sees adults and children, though

he is not a

> pediatric rheumatologist. He did train under the pediatric rheumy

at

> town. Caitlin thinks he's great. He's been right on top of

everything with

> her. Worried about her and called daily from his family vacation

during the

> holidays to check in on her. He is taking an aggressive approach

with her

> treatment too. He is very calm and gentle with Caitlin. I always

feel better after

> leaving his office (well except when he mentioned a bone marrow

biopsy, then

> I left feeling nauseated and panicked).

>

> Take care. Stay warm.

> Patty

[Guest guest]

I totally agree. Where do you live and how long does it take to get

to the Docs?

> In a message dated 1/26/04 8:24:36 PM Eastern Standard Time,

> knoblefamily@c... writes:

>

> << The drive takes us just under two hours. It is

> something to consider when selecting a Doc but for us, it seems to

be

> working. Isn't Dr. White going to see patients at G.W. soon?

> >>

> Hi :

>

> I, too, would drive a long way for a great doctor. When you think

about it,

> it can take over an hour to get into DC/Childrens Hospital and an

hour and a

> half to get to Hopkins, so it's not much longer a commute.

>

> Take care.

> Patty

[Guest guest]

, Your ped rheumy takes a different approach than ours did. When n was missing school and the doctor found out about it, he said that was not acceptable. He said her symtoms had to be under better control so she could function in daily life. That is when she had to start steroids. Since your son is already on them, maybe that is why your doctor said that. I hope he gets to feeling better soon. (n, 15, systemic)

Re: New Mom dealing with JRA

Patty,Yes, I did get our appointment in today. I saw Liz there and we took the kids for lunch after their appointments...it was nice. Dr. G wants Christian to remain at 20mg methotrexate and will begin to decrease the predisone 2 1/2 mg. every two weeks if Christian can handle it. He doesn't feel that Christian will be able to return to school on a full time basis this year and wants him to continue with homebound instruction and attending school on a very part time basis. He gave us some alternatives to deal with the insomnia, relaxation ideas. So, for the most part it was a good visit. I was disappointed to hear that Christian won't be attending school full time this year but I've learned to embrace his slowly improving health.Did your daughter have the bone marrow biopsy? Christian had one in the hospital and it was the only proceedure that I was totally not prepared for, there was more to it than I expected.Christian, being a boy, isn't always the most expressive but today at lunch I noticed that he listened to Liz's daughter as she spoke of her experiences. It would be nice to get all the kids together, we're close enough to do so. I'll check with Liz too, or maybe she will read this. > In a message dated 1/26/04 5:57:48 PM Eastern Standard Time, > knoblefamily@c... writes:> > << Christian was in > Fairfax Hospital both times, he now sees Dr. Gewanter in Richmond. I > really love him and so does Christian. Prior to >>> > Hi :> > Caitlin was in Fairfax too. For all we know they could have been there at > the same time LOL. When I mentioned your son to Caitlin, she said it would be > great to have someone her age to talk to regarding this illness.> > Doesn't Liz go to Dr. Gewanter? Were you able to get to your appointment > today?> > <<Christian's biggest fear is to end up in the hospital again, > so if we need to take it slow we will do so>>> > I can understand that fear. Who wants to go back to the hospital:( Slow is > the best approach. I hope he gets back to school full time soon. I am sure > he's missing his friends, etc.> > <<Who do you take Caitlin > to see? Not many in this area.>>> > We see Dr. Nguyen in Reston. He sees adults and children, though he is not a > pediatric rheumatologist. He did train under the pediatric rheumy at > town. Caitlin thinks he's great. He's been right on top of everything with > her. Worried about her and called daily from his family vacation during the > holidays to check in on her. He is taking an aggressive approach with her > treatment too. He is very calm and gentle with Caitlin. I always feel better after > leaving his office (well except when he mentioned a bone marrow biopsy, then > I left feeling nauseated and panicked).> > Take care. Stay warm.> Patty

[Guest guest]

Patty,

When Liz and I scheduled our appts. we had no idea they were on the

same day and just an hour apart...funny! As the appts. grew closer we

realized they would be on the same day. Too funny.

Will Caitlin return to school full time next week? I do hope it goes

well, Christian just was unable to keep up physically. He was

tremendously fatigued and the symptoms started to increase so the Doc

felt it best to take it slow.

Gosh, Christian had the same reaction with the biopsy, it was a very

emotional experience for me. You know what I mean. I don't like to

think about it too often.

My thoughts and well wishes are with you as Caitlin goes back to

school. Please keep me posted, I really hope she does well.

I know you mentioned it before but please tell me when Caitlin had

her first symptoms.

Hang in there.

> Hi :

>

> Yeah, I am thrilled that you were able to make your appointment too

today.

> You certainly had a much longer commute than I did with this lovely

ice and

> snow. Glad it was a safe trip.

>

> Did you and Liz know eachother would be there or was is a pleasant

surprise?

> That would be funny if it was just a surprise. Drive 2 hours and

meet

> someone you know there LOL. When my husband and I were on our

honeymoon in

> Disney/Florida we saw a couple we knew from my husband's work there

too LOL (we were

> living in MA at that point in time) - small world. That's great

that you all

> had a nice lunch date together.

>

> I hope the prednisone tapers goes smoothly for Christian. Bummer

about the

> not returning to school. Was Christian really upset by that? You

are right

> about taking it slowly. I am starting to question Caitlin's return

to school

> next week, something I want to post in a few minutes.

>

>

> <<Did your daughter have the bone marrow biopsy? Christian had one

in

> the hospital and it was the only proceedure that I was totally not

> prepared for, there was more to it than I expected.

> >>

>

> Yes, Caitlin did have a bone marrow biopsy done. She had it done

on an

> emergency basis (rheumy late afternoon, Children's next am) at

Children's Hospital

> on, of all days, Christmas Eve Day. The one word I can explain a

bone marrow

> biopsy: nightmare. It was so painful for Caitlin (can't numb

bone), her

> reaction to the meds freaked me out (strange to see your 11 year

old drugged up)

> and it was heartwreching for me to watch. I do know that it had to

be done.

> Georgina told me a story about a young boy who was dx'd JRA when,

in fact, he

> had leukemia and this sweet, innocent little boy died a year later:

( So I am

> grateful the rheumy ordered the test and even more grateful her

results were

> negative, thank God. When Caitlin was at Fairfax they never even

mentioned

> luekemia or a bone marrow biopsy.

>

>

> <<Christian, being a boy, isn't always the most expressive but

today at

> lunch I noticed that he listened to Liz's daughter as she spoke of

> her experiences. It would be nice to get all the kids together,

> we're close enough to do so. I'll check with Liz too, or maybe she

> will read this.>>

>

> That would be great if we could get them together. I know

Christian is

> Caitlin's age, but I don't know how old Liz's daughter is - how old

is she? Maybe

> us mom could get together too:)

>

> Take care and stay warm, it's nasty out there.

> Patty

[Guest guest]

,

Sometimes I feel like were caught in a Catch 22 regarding the school

issue. Christian really tried to go back but the fatigue and the

symptoms began to increase immediately. The Doc said that much of

this is due to Christian being so sick for so long, it was before we

found this Doctor. He told us today the deconditioning is a big

issue with Christian and gave him some exercises to do. Christis

really likes school, he's a good student but just doesn't have the

energy to attend regularly. You mentioned your Ped rheumy had a

different approach. I hope I didn't give you the impression that our

Doc is comfortable with Christian missing school. He is trying to

get him back in the game but I suppose this is a slow process. Do

you have any suggestions on how to expedite the process? Christian

is taking 15mg. methotrexate and 20 mg. Prednisone right now, all

labs look good except for the d-dimers which is still extremely

elevated.

Thanks

> > In a message dated 1/26/04 5:57:48 PM Eastern Standard Time,

> > knoblefamily@c... writes:

> >

> > << Christian was in

> > Fairfax Hospital both times, he now sees Dr. Gewanter in

> Richmond. I

> > really love him and so does Christian. Prior to >>

> >

> > Hi :

> >

> > Caitlin was in Fairfax too. For all we know they could have

been

> there at

> > the same time LOL. When I mentioned your son to Caitlin, she

said

> it would be

> > great to have someone her age to talk to regarding this illness.

> >

> > Doesn't Liz go to Dr. Gewanter? Were you able to get to your

> appointment

> > today?

> >

> > <<Christian's biggest fear is to end up in the hospital again,

> > so if we need to take it slow we will do so>>

> >

> > I can understand that fear. Who wants to go back to the

hospital:

> ( Slow is

> > the best approach. I hope he gets back to school full time

soon.

> I am sure

> > he's missing his friends, etc.

> >

> > <<Who do you take Caitlin

> > to see? Not many in this area.>>

> >

> > We see Dr. Nguyen in Reston. He sees adults and children,

though

> he is not a

> > pediatric rheumatologist. He did train under the pediatric

rheumy

> at

> > town. Caitlin thinks he's great. He's been right on top

of

> everything with

> > her. Worried about her and called daily from his family

vacation

> during the

> > holidays to check in on her. He is taking an aggressive

approach

> with her

> > treatment too. He is very calm and gentle with Caitlin. I

always

> feel better after

> > leaving his office (well except when he mentioned a bone marrow

> biopsy, then

> > I left feeling nauseated and panicked).

> >

> > Take care. Stay warm.

> > Patty

>

>

>

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

----------

>

[Guest guest]

In a message dated 1/27/04 9:33:09 PM Eastern Standard Time,

knoblefamily@... writes:

<<

I totally agree. Where do you live and how long does it take to get

to the Docs?

>>

Hi :

I am in Sterling. Right now it only takes 15 minutes to get to her rheumy's

office YIPPIE! Of course, we do the drive into DC for her and her two sisters

more often than I like to think about, but it's a great place for their

specific needs. That drive, depending on traffic, usually takes about an hour.

We

always seem to hit traffic one way and takes up to an hour and a half. I

think the drive into DC is horrible, we even get hit while taking Caitlin in to

her bone marrow test (hit from behind). Now that we know the ins and outs a

bit more, it's getting easier, just not a city driver here anymore LOL. Is the

trip into Richmond a fairly easy one?

Can you believe the sun is shining:)

Take care.

Patty

[Guest guest]

That is funny you both had appointments the same day. Next time you two

should commute together. Be nice to have some adult company:)

Caitlin will go back next week starting out with a half day schedule. She

only wants to do this for one week, but I will wait and see how she does

medically/physically before deciding that one. Personally, I'd like to keep her

home

away from the germs, but I know she can't live in a bubble (nor would I want

her to) and needs to get back to normal in all areas.

YEs, I know what you mean with the biopsy. Something I don't like to think

about to often either.

Thank you for her well wishes with her return to school. I pray she stays

stable, she's come a long way already I hate to have anything set her back.

Caitlin had her first symptoms two weeks before Thanksgiving.

Take care.

Patty

[Guest guest]

Since Caitlin seems to have improved with the fatigue maybe she will

handle school just fine. I really hope so for her and for you. Being

in sixth grade is being the top dog at the school and it's a fun year

for the kids. I'll be thinking and hoping for the best!

Has your Doctor run the d-dimers test? We didn't have this one run

until going to Dr.G who feels it can sometimes be a good marker with

systemic kids. It has proven to be a consistant marker for

Christian. It went down to elevated when he was feeling better, then

when he started school and the fatigue and arthritis increased it

went back up to the marked elevated level.

How great that Caitlin felt well enough to play outside, wonderful

news! Go Caitlin. That makes me smile to know that she felt well

enough to be a kid! I know must have made you smile too.

Christian first got the rash on Oct. 16 and it continued until mid

December. He got it everywhere, even the face one time. Towards the

end of the rash breakout, he only would get it on his hands (more

spots than a rash) and on his upper thighs. Christian's rash never

itched. Can I post pictures of the rash here? I would like to see

Caitlin's too.

Hang in there. Sounds like Caitlin and Christian are similar in many

ways.

> That is funny you both had appointments the same day. Next time

you two

> should commute together. Be nice to have some adult company:)

>

> Caitlin will go back next week starting out with a half day

schedule. She

> only wants to do this for one week, but I will wait and see how she

does

> medically/physically before deciding that one. Personally, I'd

like to keep her home

> away from the germs, but I know she can't live in a bubble (nor

would I want

> her to) and needs to get back to normal in all areas.

>

> YEs, I know what you mean with the biopsy. Something I don't like

to think

> about to often either.

>

> Thank you for her well wishes with her return to school. I pray

she stays

> stable, she's come a long way already I hate to have anything set

her back.

>

> Caitlin had her first symptoms two weeks before Thanksgiving.

>

> Take care.

> Patty

[Guest guest]

In a message dated 1/28/04 10:41:04 AM Eastern Standard Time,

knoblefamily@... writes:

<<

Since Caitlin seems to have improved with the fatigue maybe she will

handle school just fine. I really hope so for her and for you. Being

in sixth grade is being the top dog at the school and it's a fun year

for the kids. I'll be thinking and hoping for the best!

>>

Thanks . She is actually on the low rung of the school ladder in

middle school. Loudoun County starts middle school in the 6th grade. A whole

new world LOL.

<Has your Doctor run the d-dimers test? We didn't have this one run

until>

I have never heard of this test. I don't remember seeing it on any of her

labs at all. Is there another name for it?

<<ow great that Caitlin felt well enough to play outside, wonderful

news! Go Caitlin. That makes me smile to know that she felt well

enough to be a kid! I know must have made you smile too.>>

Thank you. Yes, it sure did make me smile. She had a blast:) Hopefully,

Christian will be out there enjoying himself soon too. They can have a snowball

fight, well, maybe build a snowman - that would be better.

<<Christian first got the rash on Oct. 16 and it continued until mid

December. He got it everywhere, even the face one time. Towards the

end of the rash breakout, he only would get it on his hands (more

spots than a rash) and on his upper thighs. Christian's rash never

itched. Can I post pictures of the rash here? I would like to see

Caitlin's too.

>>

Did he have the rash everywhere for that long? Caitlin had it all over for

about 2 weeks and, at that point, it itched her like crazy. Her face too. Now

hands/spots - sounds like Christian. I know people have posted pictures here

before. Unfortunately, we do not have a digital camera, etc. to post

pictures. I have regular printed pictures in hand. We should try to get

together

and chat/compare pictures.

<<Hang in there. Sounds like Caitlin and Christian are similar in many

wa>>

Thank you. I think they sound alike in many ways too.

Take care.

Patty

Christi

[Guest guest]

.. I have posted pics of Nicks rash to the list, I would be very interested in seeing the ones you have. of course I never did think to take pictures when Nicks rash was the worse, that was pre-dx days when i had no idea JRA even exsisted.

I never did think to ask about posting pictures... i sure hope it was ok and I didnt break any of the list rules... Georgina.. are pictures ok???

Hugs helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: "katherine_knoble" >Reply- > >Subject: Re: New Mom dealing with JRA >Date: Wed, 28 Jan 2004 15:33:22 -0000 > >Since Caitlin seems to have improved with the fatigue maybe she will >handle school just fine. I really hope so for her and for you. Being >in sixth grade is being the top dog at the school and it's a fun year >for the kids. I'll be thinking and hoping for the best! > >Has your Doctor run the d-dimers test? We didn't have this one run >until going to Dr.G who feels it can sometimes be a good marker with >systemic kids. It has proven to be a consistant marker for >Christian. It went down to elevated when he was feeling better, then >when he started school and the fatigue and arthritis increased it >went back up to the marked elevated level. > >How great that Caitlin felt well enough to play outside, wonderful >news! Go Caitlin. That makes me smile to know that she felt well >enough to be a kid! I know must have made you smile too. > >Christian first got the rash on Oct. 16 and it continued until mid >December. He got it everywhere, even the face one time. Towards the >end of the rash breakout, he only would get it on his hands (more >spots than a rash) and on his upper thighs. Christian's rash never >itched. Can I post pictures of the rash here? I would like to see >Caitlin's too. > >Hang in there. Sounds like Caitlin and Christian are similar in many >ways. > > > > > > That is funny you both had appointments the same day. Next time >you two > > should commute together. Be nice to have some adult company:) > > > > Caitlin will go back next week starting out with a half day >schedule. She > > only wants to do this for one week, but I will wait and see how she >does > > medically/physically before deciding that one. Personally, I'd >like to keep her home > > away from the germs, but I know she can't live in a bubble (nor >would I want > > her to) and needs to get back to normal in all areas. > > > > YEs, I know what you mean with the biopsy. Something I don't like >to think > > about to often either. > > > > Thank you for her well wishes with her return to school. I pray >she stays > > stable, she's come a long way already I hate to have anything set >her back. > > > > Caitlin had her first symptoms two weeks before Thanksgiving. > > > > Take care. > > Patty > There are now three new levels of MSN Hotmail Extra Storage! Learn more.

[Guest guest]

Thanks Helen! How did you post the pictures and where do I find

them? Help me through how I go about submitting them, I'm willing to

do so just not sure if I should (or can) start a folder for systemic

rashes or if I'm suppose to send them to the site. I'm looking

forward to viewing yours, just need to find out where they are.

Thanks so much.

>

[Guest guest]

Helen is correct~~ AJAO is the American Juvenile

Arthritis Organization. This year the conference is, indeed, in San Diego from July 22 til the 25th.

Patty, because you are in Loudon County you are technically associated with the Virginia Chapter of the

Arthritis Foundation which is based in Richmond, but because you live closer to DC you may prefer to attend

functions hosted by the Metropolitan Washington Chapter. Helen and I did meet

last year at the Holiday Party hosted by the DC chapter. And, as

said, we were put in touch with one another through the Foundation.

It would be fun to get together. Caitlin,

Teddy, Christian and are all the same age. Christian and actually

share a birthday!

Liz

New Mom dealing

with JRA

Hi

Patty. Glad to hear you made your appointment. I haven't met

Dr White, but I've had her as an on-call doc 4 or

5 times in the past

year, and I like her. She seems very caring

and concerned about the

patients, even though she'd never seen us

before. She has a great

reputation.

The

AJAO is the kids' Arthritis foundation (?American Juvenile

Arthritis Org?). I think it's part of the

bigger foundation, but it is

geared towards kids and their parents. They

publish a newsletter " kids

get arthritis too, " which I like.

It encompasses jra plus many other

rheumatic diseases. In our area, they have

several local get-togethers a

year (3 or 4) that are a lot of fun for the kids

and are an opportunity

for parents to network. This is how I met

Liz . They also have an

annual meeting, sometimes national (this year, in

San Diego I think) and

sometimes regional (last year, in

burg). The meeting has

seminars, round table discussions, lectures etc

for the parents, a bunch

of stuff for young adults, and an extensive kid's

program, which the kids

really enjoy. Our whole family went last

year. I heard Dr Gewanter in

several sessions, which is why I mentioned him in

the other email. I

liked what he had to say, and he seemed like he

had a good rapport with

the kids. I think if you go to the Arthritis

Foundation website, you can

find info on how to hook up with this group and

how to get the

newsletter.

I

agree, we should get together some time. I can say for

myself that the first year of this was extremely

hard for our family, and

would be happy to offer any help I

can. I especially think it helps the

kids to meet other kids like them, because it's so

foreign to them and

because their friends don't often

understand. hh

Groups Links

·

To visit your group on the

web, go to:

/

·

[Guest guest]

In a message dated 1/28/04 3:04:39 PM Eastern Standard Time,

helenchollingsworth@... writes:

<< The AJAO is the kids' Arthritis foundation (?American Juvenile

Arthritis Org?). I think it's part of the bigger foundation, but it is

geared towards kids and their parents. They publish a newsletter " kids

get arthritis too, " which I like. It encompasses jra plus many other

rheumatic diseases. In our area, they have several local get-togethers a

year (3 or 4) that are a lot of fun for the kids and are an opportunity

for pare >>

Hi Helen:

This sounds like a great organization! Thank you for telling me about it.

<< I agree, we should get together some time. I can say for

myself that the first year of this was extremely hard for our family, and

would be happy to offer any help I can. I especially think it helps the

kids to meet other kids like them, because it's so foreign to them and

because their friends don't often understand. hh

>>

I, and Caitlin, would LOVE to get together. All four of us Virginians should

and anyone who is close neighbors (DC, MD, etc.).

Take care.

Patty

[Guest guest]

In a message dated 1/28/04 3:21:02 PM Eastern Standard Time,

liz_smith@... writes:

<<

Patty, because you are in Loudon County you are technically associated

with the Virginia Chapter of the Arthritis Foundation which is based in

Richmond, but because you live closer to DC you may prefer to attend

functions hosted by the Metropolitan Washington Chapter. Helen and I did

meet last year at the Holiday Party hosted by the DC chapter. And, as

said, we were put in touch with one another through the

Foundation.

It would be fun to get together. Caitlin, Teddy, Christian and are

all the same age. Christian and actually share a birthday!

Liz

>>

Hi Liz:

Thank you for the information. Which group are you a part of? I realized

Christian and shared a birthday when I looked at the JRA Directory List

LOL, they can celebrate together. My oldest daughter shares her birthday with a

boy down the street who has been in almost all her classes since preschool

(she's 13). His mom and I would always coordinate who brought vanilla cupcakes

vs. chocolate cupcakes and/or candy, drinks, etc. That way we never brought

the same thing and the whole class PIGGED OUT LOL, they loved Alyssa and

's birthday.

Isn't it weird that they are all the same age. Plus the fact that they all

live relatively close. I think they are all systemic JRA too, aren't they? We

should arrange a get together for the kids and adults or just adults,

whichever works out.

Take care.

Patty