daughter possibly has systemic JRA

[Guest guest]

Hello Everyone-

I am new to the site and very anxious at this point. My daughter

experienced her first episode back in March '08. She was put in the

hospital because she quit walking and moving her right arm. She also

had a rash over her entire body and having fevers everyday. She was

discharged after five days. Everything went back to normal except she

still had the rash. This lasted for about 2-1/2 mths then it started

again. The doctors at first said it was probably viral and would

pass. After numerous blood work and seeing a allery/immunologist,

they finally decided we needed to see a rheumatologist. We had our

fist appt. in June which all they done was some blood work and a DNA

test to rule out Muckle Wells and other related diseases which we

still have not gotten the results for. I also did not care for this

doctor. He was very unconcerning I felt and gave us no answers. I

requested to see a different doctor after my daughter had another

episode at the end of June. She really explained a lot, but said she

was not sure had Systemic JRA. She told us it would be a

process of elimination of other things before they would make a

diagnosis. I understand this ,but my concern is it has now been 5

mths since her first episode and almost 2mths since we first seen the

rheumatologist and we still have no answers and they still haven't

really ruled anything out. How long does it take? How much more

suffering does she need to indure? By the way, when she is not in

pain caused by the joints her rash drives her insane. It itches

intensely. I have read that the systemic rash does not itch. Can

anyone tell me if that is true? Or has anyone experienced this type

of itching? We have another appt. on Aug. 13th. If we do not get any

answers we are considering finding another doctor. I have read good

things about DR. Lehman in New York. Is anyone familiar with

him. Please help, we are desperate for answers. All replies are

greatly appreciated.

Thanks You-

Kim Barnett

[Guest guest]

Hi Kim,

My son has had to through the process of elimination to recieve a dx. (which is

still not set in stone, but is most likely systemic JRA) He has a rheumy that I

really like and for the time being they have stopped his meds to see what will

happen. ph is 17 months so it makes it very difficult because he can't

commmunicate what is going on. He also has other health issues that compound

the problem of getting a dx, but because of his medical history we were able to

skip over all the genetic stuff when he got sick with these bouts because he has

already gone through alot of genetic testing.

I know how frustrating it can be dealing with doctors and trying to find one

that will make a dx. The only doctor who has been willing to make a dx with

ph has been infectous diseases and then the rheumy he sent us to confirmed

it. Other then that we have treated ph symptomatically since he was 5 weeks

old.

I really hope that you get some answers to help your daughter, and that she can

get to feeling better.

Blessings,

Tracey

[Guest guest]

Hi Kim,

I can't help you with Dr. Lehman, but I can help you with the

rashes. Our daughter's rash itched terribly. We tried everything.

Benadryl, zyrtec, ice, etc. We finally resorted to a very strong

antihistamine that would basically knock her out at night so she

could at least sleep. At school she would use ice packs to help the

itching. We tried every over the counter cream possible. So if the

doctors tell you that the systemic rash isn't supposed to itch, don't

believe them. We are in our 10th year with this disease. n had

the rashes for 5 years.

Really the only thing that ever stopped the itching was steroids at a

high dose.

Keep fighting for your child. Take care, (n, 19, systemic)

On Aug 6, 2008, at 7:38 AM, jkbarnett2802 wrote:

> Hello Everyone-

>

> I am new to the site and very anxious at this point. My daughter

> experienced her first episode back in March '08. She was put in the

> hospital because she quit walking and moving her right arm. She also

> had a rash over her entire body and having fevers everyday. She was

> discharged after five days. Everything went back to normal except she

> still had the rash. This lasted for about 2-1/2 mths then it started

> again. The doctors at first said it was probably viral and would

> pass. After numerous blood work and seeing a allery/immunologist,

> they finally decided we needed to see a rheumatologist. We had our

> fist appt. in June which all they done was some blood work and a DNA

> test to rule out Muckle Wells and other related diseases which we

> still have not gotten the results for. I also did not care for this

> doctor. He was very unconcerning I felt and gave us no answers. I

> requested to see a different doctor after my daughter had another

> episode at the end of June. She really explained a lot, but said she

> was not sure had Systemic JRA. She told us it would be a

> process of elimination of other things before they would make a

> diagnosis. I understand this ,but my concern is it has now been 5

> mths since her first episode and almost 2mths since we first seen the

> rheumatologist and we still have no answers and they still haven't

> really ruled anything out. How long does it take? How much more

> suffering does she need to indure? By the way, when she is not in

> pain caused by the joints her rash drives her insane. It itches

> intensely. I have read that the systemic rash does not itch. Can

> anyone tell me if that is true? Or has anyone experienced this type

> of itching? We have another appt. on Aug. 13th. If we do not get any

> answers we are considering finding another doctor. I have read good

> things about DR. Lehman in New York. Is anyone familiar with

> him. Please help, we are desperate for answers. All replies are

> greatly appreciated.

> Thanks You-

>

> Kim Barnett

>

>

>

[Guest guest]

Hi, Kim and welcome to the group. I'm sorry your daughter is having such

an awful time with the rash. I know there are many kids here on the list

with systemic jra and I have read some good responses so far. I am sure

more will come up.

I am not sure if you caught this, but Georgina (she is one of those who

started this list years ago; her son Josh is also systemic) posted an

article written by Dr. Lehman on Sunday, Aug 3. Check back in the posts

and you can find it. His name is in the subject line. He is also the

doctor who wrote the book " It's not growing pains " which quite a few

people here on the list have read and found helpful. I would take a

guess by all of that, that he is very knowledgeable of JRA and if you

can get into see him, it would be a great step forward.

Hope this helps. I know it is frustrating trying to find answers. It

took us 7 months to get a diagnosis for my son (8 years ago) and there

are others where it takes years. Keep fighting, educating yourself and

asking questions. Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of jkbarnett2802

Sent: Wednesday, August 06, 2008 9:39 AM

Subject: daughter possibly has systemic JRA

Hello Everyone-

I am new to the site and very anxious at this point. My daughter

experienced her first episode back in March '08. She was put in the

hospital because she quit walking and moving her right arm. She also

had a rash over her entire body and having fevers everyday. She was

discharged after five days. Everything went back to normal except she

still had the rash. This lasted for about 2-1/2 mths then it started

again. The doctors at first said it was probably viral and would

pass. After numerous blood work and seeing a allery/immunologist,

they finally decided we needed to see a rheumatologist. We had our

fist appt. in June which all they done was some blood work and a DNA

test to rule out Muckle Wells and other related diseases which we

still have not gotten the results for. I also did not care for this

doctor. He was very unconcerning I felt and gave us no answers. I

requested to see a different doctor after my daughter had another

episode at the end of June. She really explained a lot, but said she

was not sure had Systemic JRA. She told us it would be a

process of elimination of other things before they would make a

diagnosis. I understand this ,but my concern is it has now been 5

mths since her first episode and almost 2mths since we first seen the

rheumatologist and we still have no answers and they still haven't

really ruled anything out. How long does it take? How much more

suffering does she need to indure? By the way, when she is not in

pain caused by the joints her rash drives her insane. It itches

intensely. I have read that the systemic rash does not itch. Can

anyone tell me if that is true? Or has anyone experienced this type

of itching? We have another appt. on Aug. 13th. If we do not get any

answers we are considering finding another doctor. I have read good

things about DR. Lehman in New York. Is anyone familiar with

him. Please help, we are desperate for answers. All replies are

greatly appreciated.

Thanks You-

Kim Barnett

[Guest guest]

Hi Kim

Welcome to the group - though it is always sad to have to welcome someone.? My

son was diagnosed with systemic onset JRA a little over six years ago.? It is so

terribly difficult until a diagnosis is confirmed and everyone here understands

what you are going through. The diagnosis is obtained typically with a " rule

out " process - and you should be seeing answers soon.? When do you see your

rheumatologist next?? Have they started any treatment for your daughter?? I

would insist on some type of treatment - while we understand that the physicians

want to be sure of the diagnosis - we also know that in treating JRA, quick,

aggressive treatment is the most effective way to combat the disease and prevent

joint damage.

My son often had the " textbook " JRA rash with flares - some times the rashes

were worse than others - in fact in 's case, the rash seemed to get worse

progressively with each flare.? The rash didn't always itch - but the last 3 - 4

flares the rash itched unmercifully - so it can itch.?

Good luck - you are in our thoughts as you continue to be your daughter's best

advocate.

Val

Rob's Mom (10,systemic)

daughter possibly has systemic JRA

Hello Everyone-

I am new to the site and very anxious at this point. My daughter

experienced her first episode back in March '08. She was put in the

hospital because she quit walking and moving her right arm. She also

had a rash over her entire body and having fevers everyday. She was

discharged after five days. Everything went back to normal except she

still had the rash. This lasted for about 2-1/2 mths then it started

again. The doctors at first said it was probably viral and would

pass. After numerous blood work and seeing a allery/immunologist,

they finally decided we needed to see a rheumatologist. We had our

fist appt. in June which all they done was some blood work and a DNA

test to rule out Muckle Wells and other related diseases which we

still have not gotten the results for. I also did not care for this

doctor. He was very unconcerning I felt and gave us no answers. I

requested to see a different doctor after my daughter had another

episode at the end of June. She really explained a lot, but said she

was not sure had Systemic JRA. She told us it would be a

process of elimination of other things before they would make a

diagnosis. I understand this ,but my concern is it has now been 5

mths since her first episode and almost 2mths since we first seen the

rheumatologist and we still have no answers and they still haven't

really ruled anything out. How long does it take? How much more

suffering does she need to indure? By the way, when she is not in

pain caused by the joints her rash drives her insane. It itches

intensely. I have read that the systemic rash does not itch. Can

anyone tell me if that is true? Or has anyone experienced this type

of itching? We have another appt. on Aug. 13th. If we do not get any

answers we are considering finding another doctor. I have read good

things about DR. Lehman in New York. Is anyone familiar with

him. Please help, we are desperate for answers. All replies are

greatly appreciated.

Thanks You-

Kim Barnett

[Guest guest]

Hi Kim,

It has taken us years to find out what was actually going on with my daughter

Maggie. Having other diagnosis's made things even harder for her, but it still

took everything to blow up at once for them to finally take a step back and

really take note.

She was diagnosed at first with Polyarticular then thought more Systemic

because of the rash and fever. Now they are saying Systemic Onset and back to

poly. But she does still have the rash and fever not always at the same time but

they do come and go. The rash does not itch her though, she really isn't

bothered by it too much. But she is also on 28mgs of Prednisone a day so maybe

if she wasn't on the steroids she would itch....who knows!

We have had our fair share of bad doctors over the past 11 years. I have

decided that some of them have no clue that they are working for YOU and YOUR

child, and are getting paid dearly to do so! Not that it is about money, or

would you want them to say she has something that she doesn't, but when working

with a child it is very important for them to be " kid friendly " . There have been

a few times that we have packed up our things and walked out when Maggie was

much younger. It is all about teamwork when it comes to your child's health. You

need to be a part of the team but your doctor needs to be someone you can work

well with as a team member.

We will keep you and your little one in our prayers that you will find answers

soon. But as frustrating as it seems sometimes, this is not a disease that is

black and white. I know at the same time it is very hard to be patient when your

child is in pain. I would take lots of photos and document everything daily in a

journal. It really has helped Maggie's doctors with her diagnosis, kids always

look their best in the doctors office!!

Hugs from Iowa!

Diane and Maggie age 11 (OI,CP,Systemic onset...now POLY JIA,Uveitis,PIDD)

> From: jkbarnett2802 <jkbarnett2802@...>

> Subject: daughter possibly has systemic JRA

>

> Date: Wednesday, August 6, 2008, 2:38 PM

> Hello Everyone-

>

> I am new to the site and very anxious at this point. My

> daughter

> experienced her first episode back in March '08. She

> was put in the

> hospital because she quit walking and moving her right arm.

> She also

> had a rash over her entire body and having fevers everyday.

> She was

> discharged after five days. Everything went back to normal

> except she

> still had the rash. This lasted for about 2-1/2 mths then

> it started

> again. The doctors at first said it was probably viral and

> would

> pass. After numerous blood work and seeing a

> allery/immunologist,

> they finally decided we needed to see a rheumatologist. We

> had our

> fist appt. in June which all they done was some blood work

> and a DNA

> test to rule out Muckle Wells and other related diseases

> which we

> still have not gotten the results for. I also did not care

> for this

> doctor. He was very unconcerning I felt and gave us no

> answers. I

> requested to see a different doctor after my daughter had

> another

> episode at the end of June. She really explained a lot, but

> said she

> was not sure had Systemic JRA. She told us it would

> be a

> process of elimination of other things before they would

> make a

> diagnosis. I understand this ,but my concern is it has now

> been 5

> mths since her first episode and almost 2mths since we

> first seen the

> rheumatologist and we still have no answers and they still

> haven't

> really ruled anything out. How long does it take? How much

> more

> suffering does she need to indure? By the way, when she is

> not in

> pain caused by the joints her rash drives her insane. It

> itches

> intensely. I have read that the systemic rash does not

> itch. Can

> anyone tell me if that is true? Or has anyone experienced

> this type

> of itching? We have another appt. on Aug. 13th. If we do

> not get any

> answers we are considering finding another doctor. I have

> read good

> things about DR. Lehman in New York. Is anyone

> familiar with

> him. Please help, we are desperate for answers. All replies

> are

> greatly appreciated.

> Thanks You-

>

> Kim Barnett

[Guest guest]

Hi Kim,

Not sure where you live but if you are willing to go to New York, I want to

suggest seeing Dr Weiss at Hackensack University Med Ctr in Hackensack,

New Jersey.  I had my son (almost 3 now, with Systemic JRA) to 2 different

hospitals and many doctors.  They had to rule out everything from allergies to

lymphoma, then to have them tell us they may never know whats wrong with him. 

It was awful.  Once we took him " up North " , they figured it out. 

 I know they say the rash does not itch, but he was scratching alot during his

last flare up.

Good luck and hang in there!

Shari (Joe's mom, 2, systemic jra)

daughter possibly has systemic JRA

Hello Everyone-

I am new to the site and very anxious at this point. My daughter

experienced her first episode back in March '08. She was put in the

hospital because she quit walking and moving her right arm. She also

had a rash over her entire body and having fevers everyday. She was

discharged after five days. Everything went back to normal except she

still had the rash. This lasted for about 2-1/2 mths then it started

again. The doctors at first said it was probably viral and would

pass. After numerous blood work and seeing a allery/immunologist ,

they finally decided we needed to see a rheumatologist. We had our

fist appt. in June which all they done was some blood work and a DNA

test to rule out Muckle Wells and other related diseases which we

still have not gotten the results for. I also did not care for this

doctor. He was very unconcerning I felt and gave us no answers. I

requested to see a different doctor after my daughter had another

episode at the end of June. She really explained a lot, but said she

was not sure had Systemic JRA. She told us it would be a

process of elimination of other things before they would make a

diagnosis.. I understand this ,but my concern is it has now been 5

mths since her first episode and almost 2mths since we first seen the

rheumatologist and we still have no answers and they still haven't

really ruled anything out. How long does it take? How much more

suffering does she need to indure? By the way, when she is not in

pain caused by the joints her rash drives her insane. It itches

intensely. I have read that the systemic rash does not itch. Can

anyone tell me if that is true? Or has anyone experienced this type

of itching? We have another appt. on Aug. 13th. If we do not get any

answers we are considering finding another doctor. I have read good

things about DR. Lehman in New York. Is anyone familiar with

him. Please help, we are desperate for answers. All replies are

greatly appreciated.

Thanks You-

Kim Barnett

[Guest guest]

Kim,

Definately no ped rheumi but it does sound like systemic onset to me..

s rash never itched but it also was not a pale pink or salmon

colored evanescant rash like what you read about either.He had raised red welts

on his back like he was whipped and from his head to his toes he was covered

with hives with pencil eraser sized white heads,it all seemed to join together

to form one big rash.It was very pronounced,ugly and scarey looking.He had very

severe arthritis and severe all over myalgas..We got very lucky and got a

tentative diagnosis of SoJRA in 21 days.We fought like crazy and took him to a

ped in Nashville who would have more influence.She excused herself to cry and

got him an apointment the next day to Vanderbuilt Childrens and when the ped

rheumi seen him he had a 103 fever the welts and hives and was contracted in a

chair position.Luckily the only organ involvement was his lymph nodes in his arm

pits which were quite impressive.He was screaming bloody murder and was

absolutely miserable.At the time he

was 1 month away from his 3rd bday and was put on 30mg prelone,already on

Ibuprofen and had to wait 3 more weeks to start Methotrexate(his bday gift).If

we hadn't gotten him in so quick we might have lost him to MAS ,ped rhemies

words.We treated him VERY aggressively and the drugs of today where not invented

yet,except Enbrel ,but you couldn't get it back then due to a severe shortage

and a VERY long waiting list.

Keep fighting,if you have to travel then do so.We have Vandy 1 hr away but for

almost 6yrs and 2+ yrs have traveled exclusively to Cincinnati Childrens 307

miles away to give him the best of care.Well worth it, is on his 2nd round

of medicated remission and the 1 flare inbetween was only in both wrists and a

tiny bit in his ankles. is still considered systemic onset and will be

forever.The whole outgrowing the systemic part and being Poly has changed.He

just hasn't had a systemic symptom since 2002.

I don't know where you live but we see Dr. J.Lovell who is one of the best

in the world .If a drug has been tested or is being tried he had something to do

with it.

You can e-mail Dr.Lehman and he will answer.He is self pay,doesn't take

insurance, is very experianced, but also seems to be on the cautious side,as far

as diagnosis.Like I said got VERY lucky.I can't find my card but Dr.Lovell

at Cincinnati Childrens Hospital gives his direct office# and he is more then

happy to talk to anyone,it's what he lives for.The best time to reach him is

between 5-7pm EST.

Keep fighting and it is not uncommon to have any other symptoms other then the

rash.You just need the initial diagnosis.

Becki and 10 systemic

daughter possibly has systemic JRA

Hello Everyone-

I am new to the site and very anxious at this point. My daughter

experienced her first episode back in March '08. She was put in the

hospital because she quit walking and moving her right arm. She also

had a rash over her entire body and having fevers everyday. She was

discharged after five days. Everything went back to normal except she

still had the rash. This lasted for about 2-1/2 mths then it started

again. The doctors at first said it was probably viral and would

pass. After numerous blood work and seeing a allery/immunologist ,

they finally decided we needed to see a rheumatologist. We had our

fist appt. in June which all they done was some blood work and a DNA

test to rule out Muckle Wells and other related diseases which we

still have not gotten the results for. I also did not care for this

doctor. He was very unconcerning I felt and gave us no answers. I

requested to see a different doctor after my daughter had another

episode at the end of June. She really explained a lot, but said she

was not sure had Systemic JRA. She told us it would be a

process of elimination of other things before they would make a

diagnosis. I understand this ,but my concern is it has now been 5

mths since her first episode and almost 2mths since we first seen the

rheumatologist and we still have no answers and they still haven't

really ruled anything out. How long does it take? How much more

suffering does she need to indure? By the way, when she is not in

pain caused by the joints her rash drives her insane. It itches

intensely. I have read that the systemic rash does not itch. Can

anyone tell me if that is true? Or has anyone experienced this type

of itching? We have another appt. on Aug. 13th. If we do not get any

answers we are considering finding another doctor. I have read good

things about DR.. Lehman in New York. Is anyone familiar with

him. Please help, we are desperate for answers. All replies are

greatly appreciated.

Thanks You-

Kim Barnett

[Guest guest]

 

Hey Kim,

 

Welcome to the group. It's a great place for support and advice !! I haven't

been a member for long but it feels good to finally talk to people you can

relate too.

 

I have a 6yr old daughter (Emerson,Emmie) that has been diagnosed with systemic

JRA since she was 15 months old. Emmie started with a swollen rt knee, took her

to ER and had to transfer us to Children's, they drained her knee, scoped her

knee 3x's, we were in and out of hospitals for 3 months until May 16, 2003 when

they diagnosed her with sys. JRA, after tons of blood work, MRI's and test her

ANA was over 500 at the time. She's been on Enbrel since 2003, at the time she

had rashes and fever but it was from the infection in her knee. Her WCBC was

167,000 they said if we wouldn't have caught it in time we could have lost her.

THANK GOD. The Enbrel has emmie's JRA under control, Yesterday and today she has

started itching all over???? She's never done this before. And since I have

checked the site, apparently it's common, I didn't put two and two together.

Emerson has never had rashes, she's just constantly sick from severe sinus

infections to strep

infections that won't clear. In 2006 she started with Uveitis, which seems to

be our battle right now.

She's having GI problems which they have diagnosed her with severe reflux but

other than that her GI Dr can only relate it to the methotrexate she takes.

 

Well enough said, if you have any questions this GROUP is AWESOME and they offer

alot of advice which is very helpful. 

 

I undertand where you are coming from with being frustrated. Pray it helps !! I

will keep you and your daughter in our prayers, hopefully they will find an

answer soon.

 

Sincerely,

Krissy &  (Emmie systemic JRA/Uveitis 6yr, Landen ANA positive/possible

Pauci 2 yrs, Olivia 1 yr)

From: jkbarnett2802 <jkbarnett2802@...>

Subject: daughter possibly has systemic JRA

Date: Wednesday, August 6, 2008, 2:38 PM

Hello Everyone-

I am new to the site and very anxious at this point. My daughter

experienced her first episode back in March '08. She was put in the

hospital because she quit walking and moving her right arm. She also

had a rash over her entire body and having fevers everyday. She was

discharged after five days. Everything went back to normal except she

still had the rash. This lasted for about 2-1/2 mths then it started

again. The doctors at first said it was probably viral and would

pass. After numerous blood work and seeing a allery/immunologist ,

they finally decided we needed to see a rheumatologist. We had our

fist appt. in June which all they done was some blood work and a DNA

test to rule out Muckle Wells and other related diseases which we

still have not gotten the results for. I also did not care for this

doctor. He was very unconcerning I felt and gave us no answers. I

requested to see a different doctor after my daughter had another

episode at the end of June. She really explained a lot, but said she

was not sure had Systemic JRA. She told us it would be a

process of elimination of other things before they would make a

diagnosis. I understand this ,but my concern is it has now been 5

mths since her first episode and almost 2mths since we first seen the

rheumatologist and we still have no answers and they still haven't

really ruled anything out. How long does it take? How much more

suffering does she need to indure? By the way, when she is not in

pain caused by the joints her rash drives her insane. It itches

intensely. I have read that the systemic rash does not itch. Can

anyone tell me if that is true? Or has anyone experienced this type

of itching? We have another appt. on Aug. 13th. If we do not get any

answers we are considering finding another doctor. I have read good

things about DR. Lehman in New York. Is anyone familiar with

him. Please help, we are desperate for answers. All replies are

greatly appreciated.

Thanks You-

Kim Barnett

[Guest guest]

Hi - Thanks you for responding. I read where you were talking

about the very strong antihistimine. It wasn't Atarax was it. Believe

me, before we were sent to the rhuematologist we were seeing an

allergist/immunologist. He was treating her as if she had Chronic

Urticaria. Which is just another times for severe hives. He tried

every combo of antihistimines he could think of and nothing helped. I

think you are right about saying they knock them out so they can

sleep. That is what happened with . I just got tired of seeing

her sleep all the time. She never wanted to get up because she

couldn't stay awake long enough. She would fall asleep sitting up.

Can you tell me what all test were run before they made the diagnosis

of systemic? Also, I am confused after reading some of the other

post. Am I understanding that some children start out with systemic

then it can turn into pauci or poly? This was the first I had heard

of that. Also, I am scared to death of the MAS that I have read

about. Have you had any experience or know anyone sho has suffered

from that? I will be praying for your daughter.

Kim ( 21 mths)

>

> > Hello Everyone-

> >

> > I am new to the site and very anxious at this point. My daughter

> > experienced her first episode back in March '08. She was put in

the

> > hospital because she quit walking and moving her right arm. She

also

> > had a rash over her entire body and having fevers everyday. She

was

> > discharged after five days. Everything went back to normal except

she

> > still had the rash. This lasted for about 2-1/2 mths then it

started

> > again. The doctors at first said it was probably viral and would

> > pass. After numerous blood work and seeing a allery/immunologist,

> > they finally decided we needed to see a rheumatologist. We had our

> > fist appt. in June which all they done was some blood work and a

DNA

> > test to rule out Muckle Wells and other related diseases which we

> > still have not gotten the results for. I also did not care for

this

> > doctor. He was very unconcerning I felt and gave us no answers. I

> > requested to see a different doctor after my daughter had another

> > episode at the end of June. She really explained a lot, but said

she

> > was not sure had Systemic JRA. She told us it would be a

> > process of elimination of other things before they would make a

> > diagnosis. I understand this ,but my concern is it has now been 5

> > mths since her first episode and almost 2mths since we first seen

the

> > rheumatologist and we still have no answers and they still haven't

> > really ruled anything out. How long does it take? How much more

> > suffering does she need to indure? By the way, when she is not in

> > pain caused by the joints her rash drives her insane. It itches

> > intensely. I have read that the systemic rash does not itch. Can

> > anyone tell me if that is true? Or has anyone experienced this

type

> > of itching? We have another appt. on Aug. 13th. If we do not get

any

> > answers we are considering finding another doctor. I have read

good

> > things about DR. Lehman in New York. Is anyone familiar

with

> > him. Please help, we are desperate for answers. All replies are

> > greatly appreciated.

> > Thanks You-

> >

> > Kim Barnett

> >

> >

> >

>

>

>

>

[Guest guest]

Hi Kim,

I only have a second to respond because I have to go pick up my

daughter from work. Your email is showing that it was sent at 5am,

and I just got it. Odd. Yes, I know about MAS. My daughter got MAS

two years ago. You are a smart woman to be afraid of it. I will

write more in about 1/2 hour. Gotta zoom

On Aug 11, 2008, at 5:53 AM, jkbarnett2802 wrote:

> Hi - Thanks you for responding. I read where you were talking

> about the very strong antihistimine. It wasn't Atarax was it. Believe

> me, before we were sent to the rhuematologist we were seeing an

> allergist/immunologist. He was treating her as if she had Chronic

> Urticaria. Which is just another times for severe hives. He tried

> every combo of antihistimines he could think of and nothing helped. I

> think you are right about saying they knock them out so they can

> sleep. That is what happened with . I just got tired of seeing

> her sleep all the time. She never wanted to get up because she

> couldn't stay awake long enough. She would fall asleep sitting up.

> Can you tell me what all test were run before they made the diagnosis

> of systemic? Also, I am confused after reading some of the other

> post. Am I understanding that some children start out with systemic

> then it can turn into pauci or poly? This was the first I had heard

> of that. Also, I am scared to death of the MAS that I have read

> about. Have you had any experience or know anyone sho has suffered

> from that? I will be praying for your daughter.

>

> Kim ( 21 mths)

>

>

> >

> > > Hello Everyone-

> > >

> > > I am new to the site and very anxious at this point. My daughter

> > > experienced her first episode back in March '08. She was put in

> the

> > > hospital because she quit walking and moving her right arm. She

> also

> > > had a rash over her entire body and having fevers everyday. She

> was

> > > discharged after five days. Everything went back to normal except

> she

> > > still had the rash. This lasted for about 2-1/2 mths then it

> started

> > > again. The doctors at first said it was probably viral and would

> > > pass. After numerous blood work and seeing a allery/immunologist,

> > > they finally decided we needed to see a rheumatologist. We had our

> > > fist appt. in June which all they done was some blood work and a

> DNA

> > > test to rule out Muckle Wells and other related diseases which we

> > > still have not gotten the results for. I also did not care for

> this

> > > doctor. He was very unconcerning I felt and gave us no answers. I

> > > requested to see a different doctor after my daughter had another

> > > episode at the end of June. She really explained a lot, but said

> she

> > > was not sure had Systemic JRA. She told us it would be a

> > > process of elimination of other things before they would make a

> > > diagnosis. I understand this ,but my concern is it has now been 5

> > > mths since her first episode and almost 2mths since we first seen

> the

> > > rheumatologist and we still have no answers and they still haven't

> > > really ruled anything out. How long does it take? How much more

> > > suffering does she need to indure? By the way, when she is not in

> > > pain caused by the joints her rash drives her insane. It itches

> > > intensely. I have read that the systemic rash does not itch. Can

> > > anyone tell me if that is true? Or has anyone experienced this

> type

> > > of itching? We have another appt. on Aug. 13th. If we do not get

> any

> > > answers we are considering finding another doctor. I have read

> good

> > > things about DR. Lehman in New York. Is anyone familiar

> with

> > > him. Please help, we are desperate for answers. All replies are

> > > greatly appreciated.

> > > Thanks You-

> > >

> > > Kim Barnett

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Hi! I have a question about rashes:

What do the rashes look like? My son has a rash that we thought was from

prickly heat - heat rash, but it hasn't gone away. He has tiny pin-points

of red dots on front and back of his trunk. There has been some itching but

not much. Seems to itch when he is hot. It gets more pronounced when he is

out in t he sun or hot. Then it dies back when he cools down. Our local GP

said that she thought it was some viral infection that would go away and

dismissed it. our rheumatologist had no comment. He took note of it but

said nothing. We moved on to other items and I forgot to ask the

significance, if any.

(son, Carrick, age 16, spondy JRA, onset age 9 after parvo -19

virus, subq inject of 10cc mtx weekly)

Re: daughter possibly has systemic JRA

Hi Kim,

I only have a second to respond because I have to go pick up my

daughter from work. Your email is showing that it was sent at 5am,

and I just got it. Odd. Yes, I know about MAS. My daughter got MAS

two years ago. You are a smart woman to be afraid of it. I will

write more in about 1/2 hour. Gotta zoom

On Aug 11, 2008, at 5:53 AM, jkbarnett2802 wrote:

> Hi - Thanks you for responding. I read where you were talking

> about the very strong antihistimine. It wasn't Atarax was it. Believe

> me, before we were sent to the rhuematologist we were seeing an

> allergist/immunologist. He was treating her as if she had Chronic

> Urticaria. Which is just another times for severe hives. He tried

> every combo of antihistimines he could think of and nothing helped. I

> think you are right about saying they knock them out so they can

> sleep. That is what happened with . I just got tired of seeing

> her sleep all the time. She never wanted to get up because she

> couldn't stay awake long enough. She would fall asleep sitting up.

> Can you tell me what all test were run before they made the diagnosis

> of systemic? Also, I am confused after reading some of the other

> post. Am I understanding that some children start out with systemic

> then it can turn into pauci or poly? This was the first I had heard

> of that. Also, I am scared to death of the MAS that I have read

> about. Have you had any experience or know anyone sho has suffered

> from that? I will be praying for your daughter.

>

> Kim ( 21 mths)

>

>

> >

> > > Hello Everyone-

> > >

> > > I am new to the site and very anxious at this point. My daughter

> > > experienced her first episode back in March '08. She was put in

> the

> > > hospital because she quit walking and moving her right arm. She

> also

> > > had a rash over her entire body and having fevers everyday. She

> was

> > > discharged after five days. Everything went back to normal except

> she

> > > still had the rash. This lasted for about 2-1/2 mths then it

> started

> > > again. The doctors at first said it was probably viral and would

> > > pass. After numerous blood work and seeing a allery/immunologist,

> > > they finally decided we needed to see a rheumatologist. We had our

> > > fist appt. in June which all they done was some blood work and a

> DNA

> > > test to rule out Muckle Wells and other related diseases which we

> > > still have not gotten the results for. I also did not care for

> this

> > > doctor. He was very unconcerning I felt and gave us no answers. I

> > > requested to see a different doctor after my daughter had another

> > > episode at the end of June. She really explained a lot, but said

> she

> > > was not sure had Systemic JRA. She told us it would be a

> > > process of elimination of other things before they would make a

> > > diagnosis. I understand this ,but my concern is it has now been 5

> > > mths since her first episode and almost 2mths since we first seen

> the

> > > rheumatologist and we still have no answers and they still haven't

> > > really ruled anything out. How long does it take? How much more

> > > suffering does she need to indure? By the way, when she is not in

> > > pain caused by the joints her rash drives her insane. It itches

> > > intensely. I have read that the systemic rash does not itch. Can

> > > anyone tell me if that is true? Or has anyone experienced this

> type

> > > of itching? We have another appt. on Aug. 13th. If we do not get

> any

> > > answers we are considering finding another doctor. I have read

> good

> > > things about DR. Lehman in New York. Is anyone familiar

> with

> > > him. Please help, we are desperate for answers. All replies are

> > > greatly appreciated.

> > > Thanks You-

> > >

> > > Kim Barnett

> > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

Hi Kim,

My daughter has a JRA and  had the similar symtomps like your daugter...it takes

a few months to diagnose. It took almost 6 months for us. About rash and being

itchy. My daughter was a very itchy, so it's not a true that rash related JRA

can be a not itchy.  have you tested for allergies??   A lot of kinds with JRA

has some allergy problems too.......elminating some allergies might help with

rash, at least it did with my daughter.

Good luck.

Tolkyn

________________________________

From: jkbarnett2802 <jkbarnett2802@...>

Sent: Wednesday, August 6, 2008 10:38:35 AM

Subject: daughter possibly has systemic JRA

Hello Everyone-

I am new to the site and very anxious at this point. My daughter

experienced her first episode back in March '08. She was put in the

hospital because she quit walking and moving her right arm. She also

had a rash over her entire body and having fevers everyday. She was

discharged after five days. Everything went back to normal except she

still had the rash. This lasted for about 2-1/2 mths then it started

again. The doctors at first said it was probably viral and would

pass. After numerous blood work and seeing a allery/immunologist ,

they finally decided we needed to see a rheumatologist. We had our

fist appt. in June which all they done was some blood work and a DNA

test to rule out Muckle Wells and other related diseases which we

still have not gotten the results for. I also did not care for this

doctor. He was very unconcerning I felt and gave us no answers. I

requested to see a different doctor after my daughter had another

episode at the end of June. She really explained a lot, but said she

was not sure had Systemic JRA. She told us it would be a

process of elimination of other things before they would make a

diagnosis. I understand this ,but my concern is it has now been 5

mths since her first episode and almost 2mths since we first seen the

rheumatologist and we still have no answers and they still haven't

really ruled anything out. How long does it take? How much more

suffering does she need to indure? By the way, when she is not in

pain caused by the joints her rash drives her insane. It itches

intensely. I have read that the systemic rash does not itch. Can

anyone tell me if that is true? Or has anyone experienced this type

of itching? We have another appt. on Aug. 13th. If we do not get any

answers we are considering finding another doctor. I have read good

things about DR. Lehman in New York. Is anyone familiar with

him. Please help, we are desperate for answers. All replies are

greatly appreciated.

Thanks You-

Kim Barnett