New to the group...

[Guest guest]

Kim,

That is so terribly tragic and sad. I encourage you to join the

National Psoriasis Foundation (NPF). Their website is at:

http://www.psoriasis.org/

and they have lots of information on children with psoriasis and

psoriatic-arthritis, and even have programs and summer-camps for

children.

Regards,

Ron

> Hello everyone,

>

> My name is Kim and my daughter was diagnosed with poly

> turned pauciarticular JRA last december at the age of 2. Just

> last month her rheumy recatorgized her as juvenile psoriatic.

> I'm not sure how many difference there are between the two,

> but I'd appreciate any info any of you could give. Currently

> she's on naproxen, meto, and folinic acid, and was just

> tapered off of prednisone. Thanks and have a great holiday

> season...Kim and (psoriatic, 3 yrs old)

[Guest guest]

Kim,

That is so sad about your daughter. I am so sorry. I hope the doctor stays on

top of it and makes her as comfortable as they can. Poor thing. Best of luck

and take care.

Robin

Ron S Dotson <PA@...> wrote:

> Kim,

>

> That is so terribly tragic and sad. I encourage you to join the

> National Psoriasis Foundation (NPF). Their website is at:

>

> http://www.psoriasis.org/

>

> and they have lots of information on children with psoriasis and

> psoriatic-arthritis, and even have programs and summer-camps for

> children.

>

> Regards,

>

> Ron

[Guest guest]

Hello Kim,

In addition to NPF, the Arthritis Foundation has a ton of really

great programs and support for children with arthritis.

http://www.arthritis.org

Both NPF and the Arthritis Foundation will be very helpful to you. If

possible, a pediatric rheumatologist would also be ideal to start

seeing for . There is a shortage of pediatric rheumatologists

in the country, but if you can find one, they are usually very good

and will really be able to prescribe the best medications for

children. It's really important to control the arthritis in children

as it can lead to more permanent disabilities.

I have many friends who had JA (juevenille (sp) arthritis) and

continue to struggle as adults. Even so, they are still leading

productive lives. Finding support for yourself and your daughter is

crucial to living with arthritis.

I am really sorry you are having to go through this.

Best wishes,

Meghan

> > Hello everyone,

> >

> > My name is Kim and my daughter was diagnosed with poly

> > turned pauciarticular JRA last december at the age of 2. Just

> > last month her rheumy recatorgized her as juvenile psoriatic.

> > I'm not sure how many difference there are between the two,

> > but I'd appreciate any info any of you could give. Currently

> > she's on naproxen, meto, and folinic acid, and was just

> > tapered off of prednisone. Thanks and have a great holiday

> > season...Kim and (psoriatic, 3 yrs old)

[Guest guest]

Hi Kim,

I just wanted to say welcome to the group. There are a lot of knowledgable

people here. I haven't checked yet, but I'm sure others more knowledgable

than myself have responded to your message. I'm so sorry to hear about your

daughter having PA at such a young age. I have four small sons and two of

them have psoriasis. The youngest is 18 months old. They seem to have

aches and pains a lot, I'm afraid they will also have PA, as well as myself.

How was your daughter diagnosed?

Cheryl

[ ] New to the group...

> Hello everyone,

>

> My name is Kim and my daughter was diagnosed with poly turned

> pauciarticular JRA last december at the age of 2. Just last month

> her rheumy recatorgized her as juvenile psoriatic. I'm not sure how

> many difference there are between the two, but I'd appreciate any

> info any of you could give. Currently she's on naproxen, meto, and

> folinic acid, and was just tapered off of prednisone. Thanks and

> have a great holiday season...Kim and (psoriatic, 3 yrs old)

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

,

Welcome to the list.

I urge you to seek a referral to an orthopedic doctor that specializes in

scoliosis. It is apparent from the comments your doctor made that he is not a

scoliosis specialist and for your well being you must get to one that is.

The idea that scoliosis is the result of carrying books incorrectly is not

medically sound in my opinion. To measure your curve accurately a doctor must

have the correct training. Since you have pain while walking or standing you

must get correct information. Please find a scoliosis trained orthopedic

doctor and seek an appointment.

Jolene

1960 spinal fusion

[Guest guest]

Hello ,

I'm another , Hello! I agree with that " maybe " functional

scoliosis can be caused by such things as posture and book bags, but

when I was in high school in 1978 and diagnosed with scoliosis we

didn't carry book bags and our books we carryed home at my school

district were very light. I don't buy that doctor's theory and it

is almost offensive based on what many of us have been through post-

fusion years!

Just my take on it!

M.

Fused T4-L2 1985 - Harrington rods 21 years old at time of fusion

rods removed April 2003 for bursitis and chronic pain

saggital imbalance due to rods, not severe but causing cervical and

lower back problems........

[Guest guest]

Hi,

The frustration has set in, I needed to talk with others that are in the same

situation. My son was diagnosed with ADHD in 1st grade, though medication too

care of his attention problems, there was still many issues that we were dealing

with. After 2 years of therapy, we were finally referred to a child

psychologist, where he was diagnosed with Aspergers. He is now being treated

for depression also, and have found it to be the most challenging year yet.

This is his first year of 7th grade, in a new school. I thought things were

going okay, until I found out some 8th grade boys were daring him to grab a

girls chest. He is so determined to fit in, he did it and a call the

principal's office later followed. There was an incident in confirmation where

he talked inappropriately also. Has anyone else ever gone through this?

Of course, along with this are the constant reminders, he is very sneaky, taken

toys from a friends house during a sleepover, which I took him to return

immediately, sneaking junk foot and and hiding wrappers under the furniture. We

have tried almost everything to take care of these issues, even going as far as

scheduling an appt with a police officer, to talk about the severity of what he

was doing. The steeling has gotten better, but things have been difficult.

I'm sorry to be rambling, but if anyone else has gone through any of these

problems, I would love to have any advice or feedback. I want nothing more than

to be a good parent, but the stress is taking its toll.

Do you have any ideas? Anything would be wonderful. Thanks you for listening.

[Guest guest]

Thank you for your feedback, it means a lot.

The sleepover that my son went to, was at a friend, that he has been close to,

for about 3 years. I am grateful that his friend and parents were very

forgiving, they still get together. He usually gets together with that friend or

another one, at least one weekend a month. He has also became friends with

another boy, that is also in the spec ed room with him at school. I don't know

the boy yet, but he commented that I would like this boy, because he 'doesn't

swear'. :-)

I have been getting my son involved in various things, as much as possible. He

used to be in baseball,currently is taking guitar lessons (though they are one

on one), and he is on a waiting list for the Big Brother program at the local

YMCA. I have been working with his psychologist, to get ideas for other

volunteering as well. We have done dog walking at the Humane Society, but have

since gotten a dog, so we haven't done it as much.

You had also asked about his medication and if any adjustments had been made

lately, he hasn't had any medication change made for about 6 months, the ones he

is on (Zohloft & Concerta) seem to be working well.

It is hard to see my son go through all of this, he is a good kid, but can be

swayed so easily with his choices. He has a heart of gold.

Thanks again for your response.

Connie, MN

> >

> > Hi,

> > The frustration has set in, I needed to talk with others that are in the

same situation. My son was diagnosed with ADHD in 1st grade, though medication

too care of his attention problems, there was still many issues that we were

dealing with. After 2 years of therapy, we were finally referred to a child

psychologist, where he was diagnosed

>

[Guest guest]

Hey, Connie -

Just wanted to say it really looks like you are doing a lot of great things for your son. Hang in there. It's a rollercoaster ride and if you're pointing downwards right now, eventually, you'll point back up =)

From: Connie <csjohnson70@...> Sent: Tue, October 12, 2010 1:52:43 PMSubject: ( ) Re: New to the group...

Thank you for your feedback, it means a lot. The sleepover that my son went to, was at a friend, that he has been close to, for about 3 years. I am grateful that his friend and parents were very forgiving, they still get together. He usually gets together with that friend or another one, at least one weekend a month. He has also became friends with another boy, that is also in the spec ed room with him at school. I don't know the boy yet, but he commented that I would like this boy, because he 'doesn't swear'. :-)I have been getting my son involved in various things, as much as possible. He used to be in baseball,currently is taking guitar lessons (though they are one on one), and he is on a waiting list for the Big Brother program at the local YMCA. I have been working with his psychologist, to get ideas for other volunteering as well. We have done dog walking at the Humane Society, but have since gotten a dog, so we haven't done it

as much. You had also asked about his medication and if any adjustments had been made lately, he hasn't had any medication change made for about 6 months, the ones he is on (Zohloft & Concerta) seem to be working well. It is hard to see my son go through all of this, he is a good kid, but can be swayed so easily with his choices. He has a heart of gold. Thanks again for your response. Connie, MN> >> > Hi,> > The frustration has set in, I needed to talk with others that are in the same situation. My son was diagnosed with ADHD in 1st grade, though medication too care of his attention problems, there was still many issues that we were dealing with. After 2 years of therapy, we were finally referred to a child psychologist, where he was diagnosed>