hi-new here

[Guest guest]

Jo Anne <welcome>, Im very interested to know if the cmv triggered the arthritis? I mean did the docs say it did did they tell you much about the cmv? Glad you found us here let us know what goes on, take care I have 4 kids an they all have arthur as well. Lynn Jo Anne <jandjstewart@...> wrote: Hi, My name is Jo Anne from Lancaster, PA. My 4 yr. old daughter Lianna has just been given a tentative diagnosis of psoriatic arthritis. I've noticed some dicussion already about PsA and am looking forward to learning all I can. Lianna had a parasite infection (she was adopted from China) and a cytomegalovirus infection and about a year ago started with odd rashes that no one seemed to be able to identify. Then the joint pains began about six months ago. Her rashes don't look anything like the psoriasis pictures I've seen - with silvery scales - but are raw, red/purple patches of very dry skin that sometimes break open and bleed. She also seems to have it on her lips and they just peel layers of skin. Her health has been overwhelming to us from day one, and I'm very glad

to find a supportive group for this issue. Thanks and looking forward to learning and growing with you all :-)Jo Anne

Food fight? Enjoy some healthy debatein the Answers Food Drink Q&A.

[Guest guest]

Hi and welcome to the group. Your daughter’s

rashes sound similar to what my husband experiences and his rheumy thinks he

may have psoriatic arthritis, but is basically diagnosed at this time with

undifferentiated arthritis. I know there are others here whose children have PsA

and I am sure they will chime in soon. What types of medicine has your daughter

been put on? Also I wanted to mention that the JRA conference will be held in Hershey, PA

this year. Perhaps you could look into going? There are lots of folks there

with kids who have various forms of JRA, and drs discussing treatments. I have

personally never been, but many here have and it always sounds like such a

positive experience. Again, welcome, Michele ( 19, spondy)

From: [mailto: ] On Behalf Of Jo Anne

Sent: Tuesday, April 10, 2007 2:50

PM

Subject: Hi-New Here

Hi,

My name is Jo Anne from Lancaster,

PA. My 4 yr. old daughter Lianna

has just been given a tentative diagnosis of psoriatic arthritis.

I've noticed some dicussion already about PsA and am looking forward

to learning all I can. Lianna had a parasite infection (she was

adopted from China)

and a cytomegalovirus infection and about a year

ago started with odd rashes that no one seemed to be able to

identify. Then the joint pains began about six months ago. Her rashes

don't look anything like the psoriasis pictures I've seen - with

silvery scales - but are raw, red/purple patches of very dry skin that

sometimes break open and bleed. She also seems to have it on her lips

and they just peel layers of skin. Her health has been overwhelming

to us from day one, and I'm very glad to find a supportive group for

this issue. Thanks and looking forward to learning and growing with

you all :-)

Jo Anne

[Guest guest]

--Hi Jo-anne

Welcome to our group. I am sure you will find a lot of information

here and a TON of support.

We are all in this fight together....

hugs Helen and (9,systemic)

- In , " Jo Anne " <jandjstewart@...>

wrote:

>

> Hi,

> My name is Jo Anne from Lancaster, PA. My 4 yr. old daughter

Lianna

> has just been given a tentative diagnosis of psoriatic arthritis.

> I've noticed some dicussion already about PsA and am looking

forward

> to learning all I can. Lianna had a parasite infection (she was

> adopted from China) and a cytomegalovirus infection and about a

year

> ago started with odd rashes that no one seemed to be able to

> identify. Then the joint pains began about six months ago. Her

rashes

> don't look anything like the psoriasis pictures I've seen - with

> silvery scales - but are raw, red/purple patches of very dry skin

that

> sometimes break open and bleed. She also seems to have it on her

lips

> and they just peel layers of skin. Her health has been

overwhelming

> to us from day one, and I'm very glad to find a supportive group

for

> this issue. Thanks and looking forward to learning and growing

with

> you all :-)

> Jo Anne

>

[Guest guest]

--Jo-anne,

I forgot to add i also have a daughter adopted from China. is 8

and has been home for 7 years. She's always asking if Chinese girls

can get arthritis as she is worried she could also get it like her

brother.

Where in China is your daughter from?

hugs Helen and (9,systemic)

- In , " Jo Anne " <jandjstewart@...>

wrote:

>

> Hi,

> My name is Jo Anne from Lancaster, PA. My 4 yr. old daughter

Lianna

> has just been given a tentative diagnosis of psoriatic arthritis.

> I've noticed some dicussion already about PsA and am looking

forward

> to learning all I can. Lianna had a parasite infection (she was

> adopted from China) and a cytomegalovirus infection and about a

year

> ago started with odd rashes that no one seemed to be able to

> identify. Then the joint pains began about six months ago. Her

rashes

> don't look anything like the psoriasis pictures I've seen - with

> silvery scales - but are raw, red/purple patches of very dry skin

that

> sometimes break open and bleed. She also seems to have it on her

lips

> and they just peel layers of skin. Her health has been

overwhelming

> to us from day one, and I'm very glad to find a supportive group

for

> this issue. Thanks and looking forward to learning and growing

with

> you all :-)

> Jo Anne

>

[Guest guest]

Welcome to the group

From: [mailto: ] On Behalf Of Jo Anne

Sent: Tuesday, April 10, 2007

12:50 PM

Subject: Hi-New Here

Hi,

My name is Jo Anne from Lancaster,

PA. My 4 yr. old daughter Lianna

has just been given a tentative diagnosis of psoriatic arthritis.

I've noticed some dicussion already about PsA and am looking forward

to learning all I can. Lianna had a parasite infection (she was

adopted from China)

and a cytomegalovirus infection and about a year

ago started with odd rashes that no one seemed to be able to

identify. Then the joint pains began about six months ago. Her rashes

don't look anything like the psoriasis pictures I've seen - with

silvery scales - but are raw, red/purple patches of very dry skin that

sometimes break open and bleed. She also seems to have it on her lips

and they just peel layers of skin. Her health has been overwhelming

to us from day one, and I'm very glad to find a supportive group for

this issue. Thanks and looking forward to learning and growing with

you all :-)

Jo Anne

[Guest guest]

Hi, I am new here too and have a 3 yr. old daughter with JRA. She was diagnosed a year ago but has had it since Jan. '06. I myself have psoriasis and so does my oldest son but no arthritis with the two of us (my younger sister also had psoriasis and so did my uncle). My daughter's rheumatologist has mentioned the possible genetic connection and I am convinced that the diseases are very much interlinked. Anyway, I have done extensive alternative medicine (diet changes, probiotics, fish oil...) with all of us in combination with traditional medical care and I wholeheartedly believe in using all our resources to help us live with what we have been dealt. I myself get only mild psoriasis now, my son still has a moderate case on his scalp, and my daughter's JRA is presently under control with steroid injections directly into the joint. It has been a constant search for answers for years now but I am

hopeful. So glad to find a support group!!! No one understands what JRA is and that our children do suffer. By the way, my daughter also started with the purple-red rash. Still not sure what it all means.... -Hadley Skinner <luvmylineman1@...> wrote: Welcome to

the group From: [mailto: ] On Behalf Of Jo Anne Sent: Tuesday, April 10, 2007 12:50 PM Subject: Hi-New Here Hi, My name is Jo Anne from Lancaster, PA. My 4 yr. old daughter Lianna has just been given a tentative diagnosis of psoriatic arthritis. I've noticed some dicussion already about PsA and am looking forward to learning all I can. Lianna had a parasite infection (she was adopted from China) and a cytomegalovirus infection and about a year ago started with odd rashes that no one seemed to be able to

identify. Then the joint pains began about six months ago. Her rashes don't look anything like the psoriasis pictures I've seen - with silvery scales - but are raw, red/purple patches of very dry skin that sometimes break open and bleed. She also seems to have it on her lips and they just peel layers of skin. Her health has been overwhelming to us from day one, and I'm very glad to find a supportive group for this issue. Thanks and looking forward to learning and growing with you all :-)Jo Anne

[Guest guest]

Hi Helen,

Always nice to meet another china mom :-) I've never met any other

girls from China who have arthritis, but i've only in the last few

months had my ears " tuned in " to JRA. Lianna is from Guangdong

prov. - a tiny town right on the China Sea called Wuchuan. We stayed

in Guangdong the whole time so didn't get to see any outlying

countryside - but it was very nice to be in the same place for ten

days. I'd love to go back and shop Shaiman Island all over again!

Where is your daughter from? Was she in good health? Thanks for

introducing yourself :-)

Jo Anne, mom to Lianna (4)PsA

> >

> > Hi,

> > My name is Jo Anne from Lancaster, PA. My 4 yr. old daughter

> Lianna

> > has just been given a tentative diagnosis of psoriatic

arthritis.

> > I've noticed some dicussion already about PsA and am looking

> forward

> > to learning all I can. Lianna had a parasite infection (she was

> > adopted from China) and a cytomegalovirus infection and about a

> year

> > ago started with odd rashes that no one seemed to be able to

> > identify. Then the joint pains began about six months ago. Her

> rashes

> > don't look anything like the psoriasis pictures I've seen - with

> > silvery scales - but are raw, red/purple patches of very dry skin

> that

> > sometimes break open and bleed. She also seems to have it on her

> lips

> > and they just peel layers of skin. Her health has been

> overwhelming

> > to us from day one, and I'm very glad to find a supportive group

> for

> > this issue. Thanks and looking forward to learning and growing

> with

> > you all :-)

> > Jo Anne

> >

>

[Guest guest]

-Hi Jo-anne,

My daughter is from Duchang Jaingxi province. We actually spent 15

days in China. 2 in Beijing, 6 in Nanchang, 6 in Guangzhou ( stayed

at the White Swan) and then 1 in Hong Kong. I would LOVE to go

shopping there again.

Shes a VERY healthy child, but was from a very poor region and was

very dirty when we got her, green teeth, toenails that had never been

cut in 13 months thich curled over her toes etc. Shes doing great.

attached very well, hates changes in her life and is a VERY ordered (

read a little OCD) child!!

It's good to get to know you.

hugs Helen and (9,systemic)

-- In , " Jo Anne " <jandjstewart@...>

wrote:

>

> Hi Helen,

> Always nice to meet another china mom :-) I've never met any other

> girls from China who have arthritis, but i've only in the last few

> months had my ears " tuned in " to JRA. Lianna is from Guangdong

> prov. - a tiny town right on the China Sea called Wuchuan. We

stayed

> in Guangdong the whole time so didn't get to see any outlying

> countryside - but it was very nice to be in the same place for ten

> days. I'd love to go back and shop Shaiman Island all over again!

> Where is your daughter from? Was she in good health? Thanks for

> introducing yourself :-)

> Jo Anne, mom to Lianna (4)PsA

>

>

> > >

> > > Hi,

> > > My name is Jo Anne from Lancaster, PA. My 4 yr. old daughter

> > Lianna

> > > has just been given a tentative diagnosis of psoriatic

> arthritis.

> > > I've noticed some dicussion already about PsA and am looking

> > forward

> > > to learning all I can. Lianna had a parasite infection (she

was

> > > adopted from China) and a cytomegalovirus infection and about a

> > year

> > > ago started with odd rashes that no one seemed to be able to

> > > identify. Then the joint pains began about six months ago. Her

> > rashes

> > > don't look anything like the psoriasis pictures I've seen -

with

> > > silvery scales - but are raw, red/purple patches of very dry

skin

> > that

> > > sometimes break open and bleed. She also seems to have it on

her

> > lips

> > > and they just peel layers of skin. Her health has been

> > overwhelming

> > > to us from day one, and I'm very glad to find a supportive

group

> > for

> > > this issue. Thanks and looking forward to learning and growing

> > with

> > > you all :-)

> > > Jo Anne

> > >

> >

>

[Guest guest]

JoAnn

I don't have a lot of time right now, have to leave for work, but just wanted to

welcome you but so sorry your little Zoe is having problems.

Dr. Graham is extremely well-respected in the rheumatology world and if he wants

to inject that joint, he is thinking that the damage that is taking place and

already has, (judging from the fact there are leg length discrepancies), needs

to be stopped. In other words, time is of the essence to stop further damage.

If you do find relief from naturopath, it is likely to be a slow process and Zoe

will have suffered even more damage to her knee.

Just my 2 cents...so sorry to be blunt, but Im in a hurry!!

Keep us posted. I'm sure others will chime in...

, mom to Rob, 18, JAS

Hi-New Here

> Hi, My name is Joann and my 6 year old daughter (Zoe) was dx

> with

> Pauciarticular JRA. So far it is only in one knee but we are

> watching

> her ankles. Here is a little of our history/story. I

> was reading a

> book with her before bed and noticed that her knee looked

> swollen and

> when I touched it there was a lot of fluid. She mentioned

> landing on

> it in gymnastics and falling off the monkey bars at school, so

> we put

> an ice pack on it and took her to the Pediatrician the next

> day.

> They did an x-ray, saw nothing but wrote me scripts for blood

> work to

> rule out a viral thing if the swelling did not recede over the

> weekend. They called on Monday, no improvement, we did

> blood work.

> It came back inconclusive for anything so I was sent to a Ped.

> Ortho

> at Cincy Childrens. The swelling had gone down so he suggested

> we

> wait a month and recheck. Two days before the appt it

> looked great,

> we then had gymnastics and the day of the appt it was all

> swollen

> again. They did an MRI of the knee and after having it

> reviewed told

> me they thought it might be JRA, submitted a referral to Rheum

> and

> told me to be sure to follow up. All very positive. They

> had ruled

> out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> Children's and after looking at it and discussing our history

> (initial onsite in early Sept-visited RI over the summer) he was

> very

> sure that it was Lyme and ordered the blood test along with the

> other

> tests to rule out JRA/Lupus/etc. Well, a couple days after

> Thanksgiving I called to get the results and when Dr Graham

> called

> back, he told me were a rarity in that it was JRA and not

> Lyme. He

> won't let me take him up on the fact that he said he would've

> bet a

> paycheck on it being Lyme. So far our first eye visit is

> fine-3

> month follow ups are scheduled. We have had one follow up visit

> with

> the Rheum after starting Naprosyn and there is still swelling

> and we

> have some leg length issues already. He wants to do

> cortisone shot

> into the joint. I am really hesitant about this-anybody

> else tried

> this and did it help with the swelling, etc and give you the

> chance

> to stop the oral meds for a while?

>

> My big question is whether any body here has worked with a

> Naturopath? I am consulting with one that is very

> respected and I

> have personally talked to many of her clients that have seen

> results,

> but none that have JRA, just one adult with RA. I started

> down this

> path for Zoe's twin that has other health issues and we found

> out

> about Zoe's dx just before our consult on her twin. The

> Naturopath

> has had success stopping auto-immune diseases before and I am

> hopeful

> that we can avoid a long term oral med regimen. Neither of

> my girls

> do well with oral steroids (we have had them in the past for

> Asthma

> issues/bad colds) or any oral meds, really. And I have had

> Cortisone

> shots before and they are not fun.

>

> I look forward to gaining much knowledge from all of you.

> List

> serves and forums have been a resource for me in many ways as I

> am

> sure this one will be.

>

>

> Joann

> Mom to Zoe, 6, dx P-JRA 11/2007

>

>

[Guest guest]

>hi, just quickly little one has just woken up. Joint injections work

and they work instantly, when my little has them the swelling goes down

immediately and almost more importantly she has no pain whatsoever the

colour comes back to her cheeks and she is a different child altogether,

back to her normal self. The only side effect i know of with them is

skin atrophy which is purely cosmetic and can go with

excercise/physio-swimming works for us. The only problem with them is

how long they last, the first lot lasted 4 months for us and the second

only 2 but that varies from child to child, you may be lucky and it

lasts longer. For instant relief tho cant recommend the joint injections

highly enough and the steroid is contained within the joint so you dont

get any of the weight gain etc of oral steroids or any of the stomach

irritation etc of anti inflammatories. It is much more effective than

naproxen which is nothing more than a stronger version of ibuprofen this

acts at the source and in is much less toxic for the child. Gotta go

hope that helps. milena

> Hi, My name is Joann and my 6 year old daughter (Zoe) was dx with

> Pauciarticular JRA. So far it is only in one knee but we are watching

> her ankles. Here is a little of our history/story. I was reading a

> book with her before bed and noticed that her knee looked swollen and

> when I touched it there was a lot of fluid. She mentioned landing on

> it in gymnastics and falling off the monkey bars at school, so we put

> an ice pack on it and took her to the Pediatrician the next day.

> They did an x-ray, saw nothing but wrote me scripts for blood work to

> rule out a viral thing if the swelling did not recede over the

> weekend. They called on Monday, no improvement, we did blood work.

> It came back inconclusive for anything so I was sent to a Ped. Ortho

> at Cincy Childrens. The swelling had gone down so he suggested we

> wait a month and recheck. Two days before the appt it looked great,

> we then had gymnastics and the day of the appt it was all swollen

> again. They did an MRI of the knee and after having it reviewed told

> me they thought it might be JRA, submitted a referral to Rheum and

> told me to be sure to follow up. All very positive. They had ruled

> out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> Children's and after looking at it and discussing our history

> (initial onsite in early Sept-visited RI over the summer) he was very

> sure that it was Lyme and ordered the blood test along with the other

> tests to rule out JRA/Lupus/etc. Well, a couple days after

> Thanksgiving I called to get the results and when Dr Graham called

> back, he told me were a rarity in that it was JRA and not Lyme. He

> won't let me take him up on the fact that he said he would've bet a

> paycheck on it being Lyme. So far our first eye visit is fine-3

> month follow ups are scheduled. We have had one follow up visit with

> the Rheum after starting Naprosyn and there is still swelling and we

> have some leg length issues already. He wants to do cortisone shot

> into the joint. I am really hesitant about this-anybody else tried

> this and did it help with the swelling, etc and give you the chance

> to stop the oral meds for a while?

>

> My big question is whether any body here has worked with a

> Naturopath? I am consulting with one that is very respected and I

> have personally talked to many of her clients that have seen results,

> but none that have JRA, just one adult with RA. I started down this

> path for Zoe's twin that has other health issues and we found out

> about Zoe's dx just before our consult on her twin. The Naturopath

> has had success stopping auto-immune diseases before and I am hopeful

> that we can avoid a long term oral med regimen. Neither of my girls

> do well with oral steroids (we have had them in the past for Asthma

> issues/bad colds) or any oral meds, really. And I have had Cortisone

> shots before and they are not fun.

>

> I look forward to gaining much knowledge from all of you. List

> serves and forums have been a resource for me in many ways as I am

> sure this one will be.

>

>

> Joann

> Mom to Zoe, 6, dx P-JRA 11/2007

>

[Guest guest]

Hi

we also go to cincy childrens! We see Dr Passo what part of town are

you from we live in brown county. we go to childrens again tomorrow

for our rheumy visit i have a son that is 7 that they think has

systemic JRA.

gotta run at work!

>

> JoAnn

> I don't have a lot of time right now, have to leave for work, but

just wanted to welcome you but so sorry your little Zoe is having

problems.

> Dr. Graham is extremely well-respected in the rheumatology world

and if he wants to inject that joint, he is thinking that the damage

that is taking place and already has, (judging from the fact there

are leg length discrepancies), needs to be stopped. In other words,

time is of the essence to stop further damage.

> If you do find relief from naturopath, it is likely to be a slow

process and Zoe will have suffered even more damage to her knee.

> Just my 2 cents...so sorry to be blunt, but Im in a hurry!!

> Keep us posted. I'm sure others will chime in...

> , mom to Rob, 18, JAS

>

> Hi-New Here

>

>

> > Hi, My name is Joann and my 6 year old daughter (Zoe) was dx

> > with

> > Pauciarticular JRA. So far it is only in one knee but we are

> > watching

> > her ankles. Here is a little of our history/story. I

> > was reading a

> > book with her before bed and noticed that her knee looked

> > swollen and

> > when I touched it there was a lot of fluid. She mentioned

> > landing on

> > it in gymnastics and falling off the monkey bars at school, so

> > we put

> > an ice pack on it and took her to the Pediatrician the next

> > day.

> > They did an x-ray, saw nothing but wrote me scripts for blood

> > work to

> > rule out a viral thing if the swelling did not recede over the

> > weekend. They called on Monday, no improvement, we did

> > blood work.

> > It came back inconclusive for anything so I was sent to a Ped.

> > Ortho

> > at Cincy Childrens. The swelling had gone down so he suggested

> > we

> > wait a month and recheck. Two days before the appt it

> > looked great,

> > we then had gymnastics and the day of the appt it was all

> > swollen

> > again. They did an MRI of the knee and after having it

> > reviewed told

> > me they thought it might be JRA, submitted a referral to Rheum

> > and

> > told me to be sure to follow up. All very positive. They

> > had ruled

> > out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> > Children's and after looking at it and discussing our history

> > (initial onsite in early Sept-visited RI over the summer) he was

> > very

> > sure that it was Lyme and ordered the blood test along with the

> > other

> > tests to rule out JRA/Lupus/etc. Well, a couple days after

> > Thanksgiving I called to get the results and when Dr Graham

> > called

> > back, he told me were a rarity in that it was JRA and not

> > Lyme. He

> > won't let me take him up on the fact that he said he would've

> > bet a

> > paycheck on it being Lyme. So far our first eye visit is

> > fine-3

> > month follow ups are scheduled. We have had one follow up visit

> > with

> > the Rheum after starting Naprosyn and there is still swelling

> > and we

> > have some leg length issues already. He wants to do

> > cortisone shot

> > into the joint. I am really hesitant about this-anybody

> > else tried

> > this and did it help with the swelling, etc and give you the

> > chance

> > to stop the oral meds for a while?

> >

> > My big question is whether any body here has worked with a

> > Naturopath? I am consulting with one that is very

> > respected and I

> > have personally talked to many of her clients that have seen

> > results,

> > but none that have JRA, just one adult with RA. I started

> > down this

> > path for Zoe's twin that has other health issues and we found

> > out

> > about Zoe's dx just before our consult on her twin. The

> > Naturopath

> > has had success stopping auto-immune diseases before and I am

> > hopeful

> > that we can avoid a long term oral med regimen. Neither of

> > my girls

> > do well with oral steroids (we have had them in the past for

> > Asthma

> > issues/bad colds) or any oral meds, really. And I have had

> > Cortisone

> > shots before and they are not fun.

> >

> > I look forward to gaining much knowledge from all of you.

> > List

> > serves and forums have been a resource for me in many ways as I

> > am

> > sure this one will be.

> >

> >

> > Joann

> > Mom to Zoe, 6, dx P-JRA 11/2007

> >

> >

>

>

>

[Guest guest]

Go with the joint injection. They can work miracles. She will be

walking on the joint in a couple of days, and the swelling and fluid

should be gone. Cincinnati is considered one of the best in the

nation for JRA, if not the best. You are in very good hands.

I agree with . Try the naturopath, but you still have to jump

on the arthritis. You have to stop the inflammation! Good luck,

(n, 19, systemic)

On Jan 21, 2008, at 7:02 AM, gijojo wrote:

> Hi, My name is Joann and my 6 year old daughter (Zoe) was dx with

> Pauciarticular JRA. So far it is only in one knee but we are watching

> her ankles. Here is a little of our history/story. I was reading a

> book with her before bed and noticed that her knee looked swollen and

> when I touched it there was a lot of fluid. She mentioned landing on

> it in gymnastics and falling off the monkey bars at school, so we put

> an ice pack on it and took her to the Pediatrician the next day.

> They did an x-ray, saw nothing but wrote me scripts for blood work to

> rule out a viral thing if the swelling did not recede over the

> weekend. They called on Monday, no improvement, we did blood work.

> It came back inconclusive for anything so I was sent to a Ped. Ortho

> at Cincy Childrens. The swelling had gone down so he suggested we

> wait a month and recheck. Two days before the appt it looked great,

> we then had gymnastics and the day of the appt it was all swollen

> again. They did an MRI of the knee and after having it reviewed told

> me they thought it might be JRA, submitted a referral to Rheum and

> told me to be sure to follow up. All very positive. They had ruled

> out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> Children's and after looking at it and discussing our history

> (initial onsite in early Sept-visited RI over the summer) he was very

> sure that it was Lyme and ordered the blood test along with the other

> tests to rule out JRA/Lupus/etc. Well, a couple days after

> Thanksgiving I called to get the results and when Dr Graham called

> back, he told me were a rarity in that it was JRA and not Lyme. He

> won't let me take him up on the fact that he said he would've bet a

> paycheck on it being Lyme. So far our first eye visit is fine-3

> month follow ups are scheduled. We have had one follow up visit with

> the Rheum after starting Naprosyn and there is still swelling and we

> have some leg length issues already. He wants to do cortisone shot

> into the joint. I am really hesitant about this-anybody else tried

> this and did it help with the swelling, etc and give you the chance

> to stop the oral meds for a while?

>

> My big question is whether any body here has worked with a

> Naturopath? I am consulting with one that is very respected and I

> have personally talked to many of her clients that have seen results,

> but none that have JRA, just one adult with RA. I started down this

> path for Zoe's twin that has other health issues and we found out

> about Zoe's dx just before our consult on her twin. The Naturopath

> has had success stopping auto-immune diseases before and I am hopeful

> that we can avoid a long term oral med regimen. Neither of my girls

> do well with oral steroids (we have had them in the past for Asthma

> issues/bad colds) or any oral meds, really. And I have had Cortisone

> shots before and they are not fun.

>

> I look forward to gaining much knowledge from all of you. List

> serves and forums have been a resource for me in many ways as I am

> sure this one will be.

>

>

> Joann

> Mom to Zoe, 6, dx P-JRA 11/2007

>

>

>

[Guest guest]

I have read some things about going the naturpath way and it is dangerous

because of the reasons that stated. I have read quite a bit...long term

studys and outcome reports and it is really dangerous to postpone treatment

because of the damage being done from the inflammation that you CAN'T see

happening. With the leg length problem..it sounds like the damage is already

happening. Good Luck to you and your child.

Hope I don't sound know it all...just my thoughts from my extensive reading...

Cynde

Hi-New Here

> Hi, My name is Joann and my 6 year old daughter (Zoe) was dx

> with

> Pauciarticular JRA. So far it is only in one knee but we are

> watching

> her ankles. Here is a little of our history/story. I

> was reading a

> book with her before bed and noticed that her knee looked

> swollen and

> when I touched it there was a lot of fluid. She mentioned

> landing on

> it in gymnastics and falling off the monkey bars at school, so

> we put

> an ice pack on it and took her to the Pediatrician the next

> day.

> They did an x-ray, saw nothing but wrote me scripts for blood

> work to

> rule out a viral thing if the swelling did not recede over the

> weekend. They called on Monday, no improvement, we did

> blood work.

> It came back inconclusive for anything so I was sent to a Ped.

> Ortho

> at Cincy Childrens. The swelling had gone down so he suggested

> we

> wait a month and recheck. Two days before the appt it

> looked great,

> we then had gymnastics and the day of the appt it was all

> swollen

> again. They did an MRI of the knee and after having it

> reviewed told

> me they thought it might be JRA, submitted a referral to Rheum

> and

> told me to be sure to follow up. All very positive. They

> had ruled

> out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> Children's and after looking at it and discussing our history

> (initial onsite in early Sept-visited RI over the summer) he was

> very

> sure that it was Lyme and ordered the blood test along with the

> other

> tests to rule out JRA/Lupus/etc. Well, a couple days after

> Thanksgiving I called to get the results and when Dr Graham

> called

> back, he told me were a rarity in that it was JRA and not

> Lyme. He

> won't let me take him up on the fact that he said he would've

> bet a

> paycheck on it being Lyme. So far our first eye visit is

> fine-3

> month follow ups are scheduled. We have had one follow up visit

> with

> the Rheum after starting Naprosyn and there is still swelling

> and we

> have some leg length issues already. He wants to do

> cortisone shot

> into the joint. I am really hesitant about this-anybody

> else tried

> this and did it help with the swelling, etc and give you the

> chance

> to stop the oral meds for a while?

>

> My big question is whether any body here has worked with a

> Naturopath? I am consulting with one that is very

> respected and I

> have personally talked to many of her clients that have seen

> results,

> but none that have JRA, just one adult with RA. I started

> down this

> path for Zoe's twin that has other health issues and we found

> out

> about Zoe's dx just before our consult on her twin. The

> Naturopath

> has had success stopping auto-immune diseases before and I am

> hopeful

> that we can avoid a long term oral med regimen. Neither of

> my girls

> do well with oral steroids (we have had them in the past for

> Asthma

> issues/bad colds) or any oral meds, really. And I have had

> Cortisone

> shots before and they are not fun.

>

> I look forward to gaining much knowledge from all of you.

> List

> serves and forums have been a resource for me in many ways as I

> am

> sure this one will be.

>

>

> Joann

> Mom to Zoe, 6, dx P-JRA 11/2007

>

>

[Guest guest]

..how is Caleb today?? Any more nosebleeds?

Cynde aka flower

Hi-New Here

>

>

> > Hi, My name is Joann and my 6 year old daughter (Zoe) was dx

> > with

> > Pauciarticular JRA. So far it is only in one knee but we are

> > watching

> > her ankles. Here is a little of our history/story. I

> > was reading a

> > book with her before bed and noticed that her knee looked

> > swollen and

> > when I touched it there was a lot of fluid. She mentioned

> > landing on

> > it in gymnastics and falling off the monkey bars at school, so

> > we put

> > an ice pack on it and took her to the Pediatrician the next

> > day.

> > They did an x-ray, saw nothing but wrote me scripts for blood

> > work to

> > rule out a viral thing if the swelling did not recede over the

> > weekend. They called on Monday, no improvement, we did

> > blood work.

> > It came back inconclusive for anything so I was sent to a Ped.

> > Ortho

> > at Cincy Childrens. The swelling had gone down so he suggested

> > we

> > wait a month and recheck. Two days before the appt it

> > looked great,

> > we then had gymnastics and the day of the appt it was all

> > swollen

> > again. They did an MRI of the knee and after having it

> > reviewed told

> > me they thought it might be JRA, submitted a referral to Rheum

> > and

> > told me to be sure to follow up. All very positive. They

> > had ruled

> > out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> > Children's and after looking at it and discussing our history

> > (initial onsite in early Sept-visited RI over the summer) he was

> > very

> > sure that it was Lyme and ordered the blood test along with the

> > other

> > tests to rule out JRA/Lupus/etc. Well, a couple days after

> > Thanksgiving I called to get the results and when Dr Graham

> > called

> > back, he told me were a rarity in that it was JRA and not

> > Lyme. He

> > won't let me take him up on the fact that he said he would've

> > bet a

> > paycheck on it being Lyme. So far our first eye visit is

> > fine-3

> > month follow ups are scheduled. We have had one follow up visit

> > with

> > the Rheum after starting Naprosyn and there is still swelling

> > and we

> > have some leg length issues already. He wants to do

> > cortisone shot

> > into the joint. I am really hesitant about this-anybody

> > else tried

> > this and did it help with the swelling, etc and give you the

> > chance

> > to stop the oral meds for a while?

> >

> > My big question is whether any body here has worked with a

> > Naturopath? I am consulting with one that is very

> > respected and I

> > have personally talked to many of her clients that have seen

> > results,

> > but none that have JRA, just one adult with RA. I started

> > down this

> > path for Zoe's twin that has other health issues and we found

> > out

> > about Zoe's dx just before our consult on her twin. The

> > Naturopath

> > has had success stopping auto-immune diseases before and I am

> > hopeful

> > that we can avoid a long term oral med regimen. Neither of

> > my girls

> > do well with oral steroids (we have had them in the past for

> > Asthma

> > issues/bad colds) or any oral meds, really. And I have had

> > Cortisone

> > shots before and they are not fun.

> >

> > I look forward to gaining much knowledge from all of you.

> > List

> > serves and forums have been a resource for me in many ways as I

> > am

> > sure this one will be.

> >

> >

> > Joann

> > Mom to Zoe, 6, dx P-JRA 11/2007

> >

> >

>

>

>

[Guest guest]

Welcome and so sorry to hear about your Zoe. There are several

similars bwt. my Isabelle and your daughter. We started with Pauci

in just one knee and the Naprosyn also didn't do enough to stop the

swelling. We ended up with some leg length difference also and I

don't mean to alarm you but, this was only because our then Rheumy

kept telling me it would finally work, but it never did (after 8

months of two different med trials). It was bordering on

malpractice, I NOW realize since we went for a second opinion and the

new Rheumy did the injection right then and there in her office (just

a " local " used). NO need for meds for MONTHS . HOWEVER, it took

another 6 months of physical therapy to get the leg length and

strength corrected again. The old school approach is to keep trying

new meds, but the new school is to go straight to injections ---- we

were first with the old school doc from town University (good

hospital but obviously not up to speed with the new treatments).

Unfortunately for us, the JRA did spread and she is now in

a " medicated remission " on Methotrexate injections weekly.

I am also very into alternative medicine and used it extensively to

get pregnant with Isabelle, following years of infertility prior. I

know, it's laughable now when I tell people I am the mother of FOUR,

but there was a time that my body couldn't get pregnant, period. I

went to all kinds of practitioners and do believe in homeopathy,

acupuncture, whole organic food diet, etc. I incorporate some of

what I did to gain back my own health, now with Isabelle. I add

probiotics to her milk, buy organic everything, all household

cleaners are non-toxic, fish oil capsules and lots of fish in our

diet, bromelain enzyme tablets (reduce inflammation and found in

Pineapple), and the list goes on .

BUT, I also firmly believe that traditional medicine must be used in

conjunction with anything alternative (she was conceived via IVF,

acupuncture, supplements, homeopathy, etc.). The risk is too great

if holistic meds don't work quickly enough. I have met grown adults

that have JRA joint damage because MTX wasn't around when they were

young. Believe me, do all you can to get this swelling gone then add

the naturopath's remedies. The steroid injections are amazing. 24

hours later your child is walking, no swelling, no pain, and it's

like life is back to normal again for a while. It sounds like you

need a Physical therapist too to get full function in that joint.

When there is a leg difference, they learn to walk

with " compensation " and they need to get PT for this.

By the way, I live in Washington DC area now but grew up in Yellow

SPrings, OHIO !

All the best to you and Zoe, Hadley (Isabelle, 4 yrs.)

>

> Hi, My name is Joann and my 6 year old daughter (Zoe) was dx with

> Pauciarticular JRA. So far it is only in one knee but we are

watching

> her ankles. Here is a little of our history/story. I was reading

a

> book with her before bed and noticed that her knee looked swollen

and

> when I touched it there was a lot of fluid. She mentioned landing

on

> it in gymnastics and falling off the monkey bars at school, so we

put

> an ice pack on it and took her to the Pediatrician the next day.

> They did an x-ray, saw nothing but wrote me scripts for blood work

to

> rule out a viral thing if the swelling did not recede over the

> weekend. They called on Monday, no improvement, we did blood work.

> It came back inconclusive for anything so I was sent to a Ped.

Ortho

> at Cincy Childrens. The swelling had gone down so he suggested we

> wait a month and recheck. Two days before the appt it looked

great,

> we then had gymnastics and the day of the appt it was all swollen

> again. They did an MRI of the knee and after having it reviewed

told

> me they thought it might be JRA, submitted a referral to Rheum and

> told me to be sure to follow up. All very positive. They had ruled

> out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> Children's and after looking at it and discussing our history

> (initial onsite in early Sept-visited RI over the summer) he was

very

> sure that it was Lyme and ordered the blood test along with the

other

> tests to rule out JRA/Lupus/etc. Well, a couple days after

> Thanksgiving I called to get the results and when Dr Graham called

> back, he told me were a rarity in that it was JRA and not Lyme. He

> won't let me take him up on the fact that he said he would've bet a

> paycheck on it being Lyme. So far our first eye visit is fine-3

> month follow ups are scheduled. We have had one follow up visit

with

> the Rheum after starting Naprosyn and there is still swelling and

we

> have some leg length issues already. He wants to do cortisone shot

> into the joint. I am really hesitant about this-anybody else tried

> this and did it help with the swelling, etc and give you the chance

> to stop the oral meds for a while?

>

> My big question is whether any body here has worked with a

> Naturopath? I am consulting with one that is very respected and I

> have personally talked to many of her clients that have seen

results,

> but none that have JRA, just one adult with RA. I started down

this

> path for Zoe's twin that has other health issues and we found out

> about Zoe's dx just before our consult on her twin. The Naturopath

> has had success stopping auto-immune diseases before and I am

hopeful

> that we can avoid a long term oral med regimen. Neither of my

girls

> do well with oral steroids (we have had them in the past for Asthma

> issues/bad colds) or any oral meds, really. And I have had

Cortisone

> shots before and they are not fun.

>

> I look forward to gaining much knowledge from all of you. List

> serves and forums have been a resource for me in many ways as I am

> sure this one will be.

>

>

> Joann

> Mom to Zoe, 6, dx P-JRA 11/2007

>

[Guest guest]

none so far that i know of he is at home and I am at work.. alot of trouble

getting up and going this am but it is very cold here. he had eye exam today my

husband took him they said no eye damamge well that is what i got out of my

husband...LOL gotta love them.

cynde lee <blooms@...> wrote: ..how is Caleb today?? Any

more nosebleeds?

Cynde aka flower

Hi-New Here

>

>

> > Hi, My name is Joann and my 6 year old daughter (Zoe) was dx

> > with

> > Pauciarticular JRA. So far it is only in one knee but we are

> > watching

> > her ankles. Here is a little of our history/story. I

> > was reading a

> > book with her before bed and noticed that her knee looked

> > swollen and

> > when I touched it there was a lot of fluid. She mentioned

> > landing on

> > it in gymnastics and falling off the monkey bars at school, so

> > we put

> > an ice pack on it and took her to the Pediatrician the next

> > day.

> > They did an x-ray, saw nothing but wrote me scripts for blood

> > work to

> > rule out a viral thing if the swelling did not recede over the

> > weekend. They called on Monday, no improvement, we did

> > blood work.

> > It came back inconclusive for anything so I was sent to a Ped.

> > Ortho

> > at Cincy Childrens. The swelling had gone down so he suggested

> > we

> > wait a month and recheck. Two days before the appt it

> > looked great,

> > we then had gymnastics and the day of the appt it was all

> > swollen

> > again. They did an MRI of the knee and after having it

> > reviewed told

> > me they thought it might be JRA, submitted a referral to Rheum

> > and

> > told me to be sure to follow up. All very positive. They

> > had ruled

> > out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> > Children's and after looking at it and discussing our history

> > (initial onsite in early Sept-visited RI over the summer) he was

> > very

> > sure that it was Lyme and ordered the blood test along with the

> > other

> > tests to rule out JRA/Lupus/etc. Well, a couple days after

> > Thanksgiving I called to get the results and when Dr Graham

> > called

> > back, he told me were a rarity in that it was JRA and not

> > Lyme. He

> > won't let me take him up on the fact that he said he would've

> > bet a

> > paycheck on it being Lyme. So far our first eye visit is

> > fine-3

> > month follow ups are scheduled. We have had one follow up visit

> > with

> > the Rheum after starting Naprosyn and there is still swelling

> > and we

> > have some leg length issues already. He wants to do

> > cortisone shot

> > into the joint. I am really hesitant about this-anybody

> > else tried

> > this and did it help with the swelling, etc and give you the

> > chance

> > to stop the oral meds for a while?

> >

> > My big question is whether any body here has worked with a

> > Naturopath? I am consulting with one that is very

> > respected and I

> > have personally talked to many of her clients that have seen

> > results,

> > but none that have JRA, just one adult with RA. I started

> > down this

> > path for Zoe's twin that has other health issues and we found

> > out

> > about Zoe's dx just before our consult on her twin. The

> > Naturopath

> > has had success stopping auto-immune diseases before and I am

> > hopeful

> > that we can avoid a long term oral med regimen. Neither of

> > my girls

> > do well with oral steroids (we have had them in the past for

> > Asthma

> > issues/bad colds) or any oral meds, really. And I have had

> > Cortisone

> > shots before and they are not fun.

> >

> > I look forward to gaining much knowledge from all of you.

> > List

> > serves and forums have been a resource for me in many ways as I

> > am

> > sure this one will be.

> >

> >

> > Joann

> > Mom to Zoe, 6, dx P-JRA 11/2007

> >

> >

>

>

>

[Guest guest]

I also want to chime in on the natural. Please be upfront with all docs-

traditional and naturopaths about ALL that you are doing. Some natural

meds may do the same as traditional meds and you might have an overload

or you might have things working against each other. I looked into some

things for our but please be careful- for example - if you're on

an NSAID that already thins the blood, you don't want to add fish oil or

garlic or something else natural that would also thin the blood- you

could end up with a catastrophe.

Just my 2 cents.

Jinny (11 pauci??)

On Tue, 22 Jan 2008 18:03:31 -0000 " hadley_messner "

<hmessner@...> writes:

> Welcome and so sorry to hear about your Zoe. There are several

> similars bwt. my Isabelle and your daughter. We started with Pauci

>

> in just one knee and the Naprosyn also didn't do enough to stop the

>

> swelling. We ended up with some leg length difference also and I

> don't mean to alarm you but, this was only because our then Rheumy

> kept telling me it would finally work, but it never did (after 8

> months of two different med trials). It was bordering on

> malpractice, I NOW realize since we went for a second opinion and

> the

> new Rheumy did the injection right then and there in her office

> (just

> a " local " used). NO need for meds for MONTHS . HOWEVER, it took

>

> another 6 months of physical therapy to get the leg length and

> strength corrected again. The old school approach is to keep trying

>

> new meds, but the new school is to go straight to injections ---- we

>

> were first with the old school doc from town University (good

>

> hospital but obviously not up to speed with the new treatments).

> Unfortunately for us, the JRA did spread and she is now in

> a " medicated remission " on Methotrexate injections weekly.

>

> I am also very into alternative medicine and used it extensively to

>

> get pregnant with Isabelle, following years of infertility prior. I

>

> know, it's laughable now when I tell people I am the mother of FOUR,

>

> but there was a time that my body couldn't get pregnant, period. I

>

> went to all kinds of practitioners and do believe in homeopathy,

> acupuncture, whole organic food diet, etc. I incorporate some of

> what I did to gain back my own health, now with Isabelle. I add

> probiotics to her milk, buy organic everything, all household

> cleaners are non-toxic, fish oil capsules and lots of fish in our

> diet, bromelain enzyme tablets (reduce inflammation and found in

> Pineapple), and the list goes on .

>

> BUT, I also firmly believe that traditional medicine must be used in

>

> conjunction with anything alternative (she was conceived via IVF,

> acupuncture, supplements, homeopathy, etc.). The risk is too great

>

> if holistic meds don't work quickly enough. I have met grown adults

>

> that have JRA joint damage because MTX wasn't around when they were

>

> young. Believe me, do all you can to get this swelling gone then

> add

> the naturopath's remedies. The steroid injections are amazing. 24

>

> hours later your child is walking, no swelling, no pain, and it's

> like life is back to normal again for a while. It sounds like you

> need a Physical therapist too to get full function in that joint.

> When there is a leg difference, they learn to walk

> with " compensation " and they need to get PT for this.

>

> By the way, I live in Washington DC area now but grew up in Yellow

> SPrings, OHIO !

>

> All the best to you and Zoe, Hadley (Isabelle, 4 yrs.)

>

>

>

> >

> > Hi, My name is Joann and my 6 year old daughter (Zoe) was dx with

>

> > Pauciarticular JRA. So far it is only in one knee but we are

> watching

> > her ankles. Here is a little of our history/story. I was reading

>

> a

> > book with her before bed and noticed that her knee looked swollen

>

> and

> > when I touched it there was a lot of fluid. She mentioned landing

>

> on

> > it in gymnastics and falling off the monkey bars at school, so we

>

> put

> > an ice pack on it and took her to the Pediatrician the next day.

>

> > They did an x-ray, saw nothing but wrote me scripts for blood work

>

> to

> > rule out a viral thing if the swelling did not recede over the

> > weekend. They called on Monday, no improvement, we did blood

> work.

> > It came back inconclusive for anything so I was sent to a Ped.

> Ortho

> > at Cincy Childrens. The swelling had gone down so he suggested we

>

> > wait a month and recheck. Two days before the appt it looked

> great,

> > we then had gymnastics and the day of the appt it was all swollen

>

> > again. They did an MRI of the knee and after having it reviewed

> told

> > me they thought it might be JRA, submitted a referral to Rheum and

>

> > told me to be sure to follow up. All very positive. They had

> ruled

> > out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> > Children's and after looking at it and discussing our history

> > (initial onsite in early Sept-visited RI over the summer) he was

> very

> > sure that it was Lyme and ordered the blood test along with the

> other

> > tests to rule out JRA/Lupus/etc. Well, a couple days after

> > Thanksgiving I called to get the results and when Dr Graham called

>

> > back, he told me were a rarity in that it was JRA and not Lyme.

> He

> > won't let me take him up on the fact that he said he would've bet

> a

> > paycheck on it being Lyme. So far our first eye visit is fine-3

> > month follow ups are scheduled. We have had one follow up visit

> with

> > the Rheum after starting Naprosyn and there is still swelling and

>

> we

> > have some leg length issues already. He wants to do cortisone

> shot

> > into the joint. I am really hesitant about this-anybody else

> tried

> > this and did it help with the swelling, etc and give you the

> chance

> > to stop the oral meds for a while?

> >

> > My big question is whether any body here has worked with a

> > Naturopath? I am consulting with one that is very respected and I

>

> > have personally talked to many of her clients that have seen

> results,

> > but none that have JRA, just one adult with RA. I started down

> this

> > path for Zoe's twin that has other health issues and we found out

>

> > about Zoe's dx just before our consult on her twin. The

> Naturopath

> > has had success stopping auto-immune diseases before and I am

> hopeful

> > that we can avoid a long term oral med regimen. Neither of my

> girls

> > do well with oral steroids (we have had them in the past for

> Asthma

> > issues/bad colds) or any oral meds, really. And I have had

> Cortisone

> > shots before and they are not fun.

> >

> > I look forward to gaining much knowledge from all of you. List

> > serves and forums have been a resource for me in many ways as I am

>

> > sure this one will be.

> >

> >

> > Joann

> > Mom to Zoe, 6, dx P-JRA 11/2007

> >

>

>

>

>

>

>

[Guest guest]

Jinny,

You're absolutely right about fish oil having blood thinning

properties (so does vitamin E!), but Isabelle only takes a capsule

per day made for children under 4 yrs old. And our Rheumy is aware

of ALL supplements she is taking.

When I was referring to " remedies " prescribed by a naturopath, I

meant homeopathic which I think Naturopaths " prescribe " . Those are

clinically sugar tablets with an almost undetectable dose of plant

extracts. I didn't intend to suggest that we give our children a

combination of things without our Rheumy being informed.

Just thought I should clarify since I have a habit of being

misunderstood. I often leave out important information and people

conclude things that I didn't intend at all. I know I need to work

on that " communication problem " I seem to have .

-Hadley (Isabelle, 4 yrs.)

> > >

> > > Hi, My name is Joann and my 6 year old daughter (Zoe) was dx

with

> >

> > > Pauciarticular JRA. So far it is only in one knee but we are

> > watching

> > > her ankles. Here is a little of our history/story. I was

reading

> >

> > a

> > > book with her before bed and noticed that her knee looked

swollen

> >

> > and

> > > when I touched it there was a lot of fluid. She mentioned

landing

> >

> > on

> > > it in gymnastics and falling off the monkey bars at school, so

we

> >

> > put

> > > an ice pack on it and took her to the Pediatrician the next

day.

> >

> > > They did an x-ray, saw nothing but wrote me scripts for blood

work

> >

> > to

> > > rule out a viral thing if the swelling did not recede over the

> > > weekend. They called on Monday, no improvement, we did blood

> > work.

> > > It came back inconclusive for anything so I was sent to a Ped.

> > Ortho

> > > at Cincy Childrens. The swelling had gone down so he suggested

we

> >

> > > wait a month and recheck. Two days before the appt it looked

> > great,

> > > we then had gymnastics and the day of the appt it was all

swollen

> >

> > > again. They did an MRI of the knee and after having it

reviewed

> > told

> > > me they thought it might be JRA, submitted a referral to Rheum

and

> >

> > > told me to be sure to follow up. All very positive. They had

> > ruled

> > > out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> > > Children's and after looking at it and discussing our history

> > > (initial onsite in early Sept-visited RI over the summer) he

was

> > very

> > > sure that it was Lyme and ordered the blood test along with the

> > other

> > > tests to rule out JRA/Lupus/etc. Well, a couple days after

> > > Thanksgiving I called to get the results and when Dr Graham

called

> >

> > > back, he told me were a rarity in that it was JRA and not

Lyme.

> > He

> > > won't let me take him up on the fact that he said he would've

bet

> > a

> > > paycheck on it being Lyme. So far our first eye visit is fine-

3

> > > month follow ups are scheduled. We have had one follow up visit

> > with

> > > the Rheum after starting Naprosyn and there is still swelling

and

> >

> > we

> > > have some leg length issues already. He wants to do cortisone

> > shot

> > > into the joint. I am really hesitant about this-anybody else

> > tried

> > > this and did it help with the swelling, etc and give you the

> > chance

> > > to stop the oral meds for a while?

> > >

> > > My big question is whether any body here has worked with a

> > > Naturopath? I am consulting with one that is very respected

and I

> >

> > > have personally talked to many of her clients that have seen

> > results,

> > > but none that have JRA, just one adult with RA. I started down

> > this

> > > path for Zoe's twin that has other health issues and we found

out

> >

> > > about Zoe's dx just before our consult on her twin. The

> > Naturopath

> > > has had success stopping auto-immune diseases before and I am

> > hopeful

> > > that we can avoid a long term oral med regimen. Neither of my

> > girls

> > > do well with oral steroids (we have had them in the past for

> > Asthma

> > > issues/bad colds) or any oral meds, really. And I have had

> > Cortisone

> > > shots before and they are not fun.

> > >

> > > I look forward to gaining much knowledge from all of you. List

> > > serves and forums have been a resource for me in many ways as I

am

> >

> > > sure this one will be.

> > >

> > >

> > > Joann

> > > Mom to Zoe, 6, dx P-JRA 11/2007

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

My daugher had her knee injected at 21 months old and it lasted at least 10

months (we had to start methotrexate due to her uveitis). So I don't know

exactly how long the injection lasted since we added a drug for her eyes.

Regardless we were told it could last 3 months to a year. It was the best thing

we did for our daughter even though it was scary. Dr. Graham is her doctor out

of Children's and he did a perfect job with the injection. No atrophy and no

indication she even had an injection.

Just wanted to let you know if you do go that route you are in good hands.

Please keep us posted on any success with Neuropath too.

Our daughter has a middle finger joint that has never been controlled by mtx no

humira and we might have to inject it come this summer.

Cheri

Re: Hi-New Here

Go with the joint injection. They can work miracles. She will be

walking on the joint in a couple of days, and the swelling and fluid

should be gone. Cincinnati is considered one of the best in the

nation for JRA, if not the best. You are in very good hands.

I agree with . Try the naturopath, but you still have to jump

on the arthritis. You have to stop the inflammation! Good luck,

(n, 19, systemic)

On Jan 21, 2008, at 7:02 AM, gijojo wrote:

> Hi, My name is Joann and my 6 year old daughter (Zoe) was dx with

> Pauciarticular JRA. So far it is only in one knee but we are watching

> her ankles. Here is a little of our history/story. I was reading a

> book with her before bed and noticed that her knee looked swollen and

> when I touched it there was a lot of fluid. She mentioned landing on

> it in gymnastics and falling off the monkey bars at school, so we put

> an ice pack on it and took her to the Pediatrician the next day.

> They did an x-ray, saw nothing but wrote me scripts for blood work to

> rule out a viral thing if the swelling did not recede over the

> weekend. They called on Monday, no improvement, we did blood work.

> It came back inconclusive for anything so I was sent to a Ped. Ortho

> at Cincy Childrens. The swelling had gone down so he suggested we

> wait a month and recheck. Two days before the appt it looked great,

> we then had gymnastics and the day of the appt it was all swollen

> again. They did an MRI of the knee and after having it reviewed told

> me they thought it might be JRA, submitted a referral to Rheum and

> told me to be sure to follow up. All very positive. They had ruled

> out doing a Lyme test at the Ortho. Saw Dr Graham at Cincy

> Children's and after looking at it and discussing our history

> (initial onsite in early Sept-visited RI over the summer) he was very

> sure that it was Lyme and ordered the blood test along with the other

> tests to rule out JRA/Lupus/etc. Well, a couple days after

> Thanksgiving I called to get the results and when Dr Graham called

> back, he told me were a rarity in that it was JRA and not Lyme. He

> won't let me take him up on the fact that he said he would've bet a

> paycheck on it being Lyme. So far our first eye visit is fine-3

> month follow ups are scheduled. We have had one follow up visit with

> the Rheum after starting Naprosyn and there is still swelling and we

> have some leg length issues already. He wants to do cortisone shot

> into the joint. I am really hesitant about this-anybody else tried

> this and did it help with the swelling, etc and give you the chance

> to stop the oral meds for a while?

>

> My big question is whether any body here has worked with a

> Naturopath? I am consulting with one that is very respected and I

> have personally talked to many of her clients that have seen results,

> but none that have JRA, just one adult with RA. I started down this

> path for Zoe's twin that has other health issues and we found out

> about Zoe's dx just before our consult on her twin. The Naturopath

> has had success stopping auto-immune diseases before and I am hopeful

> that we can avoid a long term oral med regimen. Neither of my girls

> do well with oral steroids (we have had them in the past for Asthma

> issues/bad colds) or any oral meds, really. And I have had Cortisone

> shots before and they are not fun.

>

> I look forward to gaining much knowledge from all of you. List

> serves and forums have been a resource for me in many ways as I am

> sure this one will be.

>

>

> Joann

> Mom to Zoe, 6, dx P-JRA 11/2007

>

>

>

[Guest guest]

Hi

I am going throug the same thing as you!!  My son most likely has . Our

pediatrician id ID and he referred us to a rehumotoligist.  I think it is

important to do bloodwork when he is sick, the first cycle or two..  The blood

work tells how much inflamation there is and what exactly they are looking for;

we have also done a blood panel when he was well to compare.  The other tests I

have taken him for is an eye exam, to rule out iritis which is common in

juvenile rheumetoid arthritis (which he doesn't have); and I bring him tomorrow

for an abdominal ultra sound.  The specialist from Columbia University  ordered

theses, and they aren't too invasive, she said it just helps her rule out

things.  I hope this helps you. Good luck!

Olga

[Guest guest]

Hi

I am going throug the same thing as you!!  My son most likely has . Our

pediatrician id ID and he referred us to a rehumotoligist.  I think it is

important to do bloodwork when he is sick, the first cycle or two..  The blood

work tells how much inflamation there is and what exactly they are looking for;

we have also done a blood panel when he was well to compare.  The other tests I

have taken him for is an eye exam, to rule out iritis which is common in

juvenile rheumetoid arthritis (which he doesn't have); and I bring him tomorrow

for an abdominal ultra sound.  The specialist from Columbia University  ordered

theses, and they aren't too invasive, she said it just helps her rule out

things.  I hope this helps you. Good luck!

Olga

[Guest guest]

Hi

With 3 kids and a job your life sounds very hectic.

It is unusal for to start as early as 5 days old BUT I think one thing

we've all learned from this board is that every child is a little different and

the regular fevers with canker sores certainly speak for a diagnosis.

can not be tested for, it's a diagnosis by exclusion of other periodic

fever syndromes (PFS). Therefore, bloodwork and genetic testing are essential in

excluding other causes (such as Mediterranean fever, HIDS, TRAPS and others) and

therefore coming to the diagnosis. It's going to be tough to do the blood

draw but it's important. Get your doctor to prescribe a patch that you can put

on his arm beforehand that numbs the skin. Here (South Africa) they are called

EMLA patches, they might trade under a different name in the US. At least then

your son won't be in pain when they stick the needle in.

Once you have a firm diagnosis you can try treating the episodes with 1

dose of prednisone which will eliminate the fever immediately (but it is a

cortico steroid so to be used with caution plus it does tend to bring the

episodes closer together) or go for a Adenotonsilectomy (T & A) which has worked

in completely eliminating the fevers in most (but not all) who have taken this

step on this board. Other options are daily medication such as cimetidine or

singulair and there are others but with limited success as far as I know.

Good luck and keep us posted.

Take care

Inga, mom to Emma, fevering from 11 months until T & A at 32 months in March 2008

and , 9 months and healthy

[Guest guest]

Hi

With 3 kids and a job your life sounds very hectic.

It is unusal for to start as early as 5 days old BUT I think one thing

we've all learned from this board is that every child is a little different and

the regular fevers with canker sores certainly speak for a diagnosis.

can not be tested for, it's a diagnosis by exclusion of other periodic

fever syndromes (PFS). Therefore, bloodwork and genetic testing are essential in

excluding other causes (such as Mediterranean fever, HIDS, TRAPS and others) and

therefore coming to the diagnosis. It's going to be tough to do the blood

draw but it's important. Get your doctor to prescribe a patch that you can put

on his arm beforehand that numbs the skin. Here (South Africa) they are called

EMLA patches, they might trade under a different name in the US. At least then

your son won't be in pain when they stick the needle in.

Once you have a firm diagnosis you can try treating the episodes with 1

dose of prednisone which will eliminate the fever immediately (but it is a

cortico steroid so to be used with caution plus it does tend to bring the

episodes closer together) or go for a Adenotonsilectomy (T & A) which has worked

in completely eliminating the fevers in most (but not all) who have taken this

step on this board. Other options are daily medication such as cimetidine or

singulair and there are others but with limited success as far as I know.

Good luck and keep us posted.

Take care

Inga, mom to Emma, fevering from 11 months until T & A at 32 months in March 2008

and , 9 months and healthy

[Guest guest]

,

 

I am so sorry to hear that you are going through such as difficult time. As I

read your post, I was reminded of my own situation and could relate to your

exhaustion.

My daughter who will be three next month began fevering at 5 months of age. By 9

months, she was into a cycle of fevers every 21 - 24 days. The fevers were very

high (usually 105), accompanied by vomiting and lethargy. My poor little baby

was out of commission for usually 4 -5 days.

On top of all this, I was pregnant with our second child. Our children are 13

1/2 months apart so things were VERY difficult at our house. When I brought our

son home from the hospital, our daughter began an episode. I can remember how

overwhelmed I was and the feelings of helplessness (not to mention the lack of

sleep!)

 

Our daughter was diagnosed with Periodic Fever Syndrome in Nov. 07. I am so

appreciative to the various Dr.'s and specialists that we have seen to get to

this point, however it is our pediatrician that I am most grateful to.. It was

he who first took my concerns seriously (if I had to hear one more person tell

me " it is just a virus " again I was going to scream!) and began us on a rotation

of bloodwork to see if there were any significant changes at various times. 

We have also had bloodwork, ultrasounds and urinalysis done while Ali is in the

middle of an episode. There are various things that they look for during these

times.

I have found that when going for bloodwork, it is best to go somewhere that has

experience with children if possible, such as a pediatric ward as they are

accustomed to a screaming child.

 

Best of luck to you...

Regards,

[Guest guest]

,

 

I am so sorry to hear that you are going through such as difficult time. As I

read your post, I was reminded of my own situation and could relate to your

exhaustion.

My daughter who will be three next month began fevering at 5 months of age. By 9

months, she was into a cycle of fevers every 21 - 24 days. The fevers were very

high (usually 105), accompanied by vomiting and lethargy. My poor little baby

was out of commission for usually 4 -5 days.

On top of all this, I was pregnant with our second child. Our children are 13

1/2 months apart so things were VERY difficult at our house. When I brought our

son home from the hospital, our daughter began an episode. I can remember how

overwhelmed I was and the feelings of helplessness (not to mention the lack of

sleep!)

 

Our daughter was diagnosed with Periodic Fever Syndrome in Nov. 07. I am so

appreciative to the various Dr.'s and specialists that we have seen to get to

this point, however it is our pediatrician that I am most grateful to.. It was

he who first took my concerns seriously (if I had to hear one more person tell

me " it is just a virus " again I was going to scream!) and began us on a rotation

of bloodwork to see if there were any significant changes at various times. 

We have also had bloodwork, ultrasounds and urinalysis done while Ali is in the

middle of an episode. There are various things that they look for during these

times.

I have found that when going for bloodwork, it is best to go somewhere that has

experience with children if possible, such as a pediatric ward as they are

accustomed to a screaming child.

 

Best of luck to you...

Regards,