New Mom

[Guest guest]

I am fairly new to this site as well, but welcome. I have an 8 year old boy with

polyarticular JRA. please ask away. I have found there is a lot talked about on

this site, it's pretty cool.

Mahala

Taunton <lcdanceacademy@...> wrote:

Hi,

My name is ' and my 9 year old daughter a has been battling

uveitis for over 3 years now. Before she started Methotrexate she

would fall asleep in school, complain of sore muscles and walk with a

limp. I just thought that the symptoms went along with her pars

planitis (intermediate eye inflammation).

Five doctors, 2 eye surgeries later, she was just recently diagnosed

with JRA associated uveitis. The inflammation has spread throughout

th the eye and her pars planitis is now called panuveitis. Vision in

one eye is doing well thanks to a vitrectomy and cataract removal/

lens implant. We finally found the right medicine for her.

After Methotrexate with cyclosporine; CellCept with cyclosporine;

Chlorambucil.......she now gets IvIg infusions once a month over a 3

day period. I post on a uveitis support group site, but really need

some insight from other parents whose children have JRA.

My daughter has a sore throat and fever tonight. So I am just

looking for information and found this site.

Thanks for listening,

'

[Guest guest]

Hey ---

This is a GREAT site. I have not been on the site in awhile due to

medical issues and a busy home life, but was just checking things

this morning and found your posting.

My 8 year old (almost 9) son has pauci/JRA with Uveitis. His JRA

was diagnosed after the Uveitis. He was 4 years old at the time.

He has gone through Glaucoma surgery and cataract (lens replacement)

surgery. He has inflammation free for the first time in May and had

been all summer. In August his labs came back not good--The doctors

have been playing around with his MTX. They have him taking only .7

injectable MTX currently and his labs seem to be good. His problem

with the MTX is he is throwing up the next morning after taking it.

This little boy can throw up in one second and be out playing the

next.

My son has also been dealing with an eye infection--It seems he has

lots of scarring on the eye which gives way to allow an infection.

His eye is finally doing good, but the doctors appointment and the

drops have worn me out.

I really feel that this disease never lets you feel good for any

period of time--When you get on a high--it brings your crashing to

the grow fast.

I have been on a uveitis site--I wonder if it's the same one. I hope

to talk to you soon. Good luck with your daughters fever and sore

throat. Our kids have been back at school since the second week of

August and strep has already made its rounds. My son keeps soap at

this desk and does not drink out of the school water faucets. This

has really helped. Good luck!!!! Chris/Brad (Pauci/JRA)

In , " Taunton " <lcdanceacademy@y...>

wrote:

> Hi,

> My name is ' and my 9 year old daughter a has been

battling

> uveitis for over 3 years now. Before she started Methotrexate she

> would fall asleep in school, complain of sore muscles and walk

with a

> limp. I just thought that the symptoms went along with her pars

> planitis (intermediate eye inflammation).

>

> Five doctors, 2 eye surgeries later, she was just recently

diagnosed

> with JRA associated uveitis. The inflammation has spread

throughout

> th the eye and her pars planitis is now called panuveitis. Vision

in

> one eye is doing well thanks to a vitrectomy and cataract removal/

> lens implant. We finally found the right medicine for her.

>

> After Methotrexate with cyclosporine; CellCept with cyclosporine;

> Chlorambucil.......she now gets IvIg infusions once a month over a

3

> day period. I post on a uveitis support group site, but really

need

> some insight from other parents whose children have JRA.

>

> My daughter has a sore throat and fever tonight. So I am just

> looking for information and found this site.

>

> Thanks for listening,

> '

[Guest guest]

Thank you Mahala,

I'm not sure where to start. I'm a bit overwhelmed I guess, and a bit in

denial. The different divisions of JRA, and then the subdivisions are mind

boggeling. I guess I would like to know others experiences with systemic jra.

What should I do to help my daughter....

Anything to help me get on the right track would be great.

Thank you,

' & a

mahala pinsonneault <mamahala2005@...> wrote:

I am fairly new to this site as well, but welcome. I have an 8 year old boy with

polyarticular JRA. please ask away. I have found there is a lot talked about on

this site, it's pretty cool.

Mahala

Taunton <lcdanceacademy@...> wrote:

Hi,

My name is ' and my 9 year old daughter a has been battling

uveitis for over 3 years now. Before she started Methotrexate she

would fall asleep in school, complain of sore muscles and walk with a

limp. I just thought that the symptoms went along with her pars

planitis (intermediate eye inflammation).

Five doctors, 2 eye surgeries later, she was just recently diagnosed

with JRA associated uveitis. The inflammation has spread throughout

th the eye and her pars planitis is now called panuveitis. Vision in

one eye is doing well thanks to a vitrectomy and cataract removal/

lens implant. We finally found the right medicine for her.

After Methotrexate with cyclosporine; CellCept with cyclosporine;

Chlorambucil.......she now gets IvIg infusions once a month over a 3

day period. I post on a uveitis support group site, but really need

some insight from other parents whose children have JRA.

My daughter has a sore throat and fever tonight. So I am just

looking for information and found this site.

Thanks for listening,

'

[Guest guest]

Hi ,

I am glad that you found our support group. It has been an

incredible gift to me as I have learned to cope with my daughters

illness and to have others that can easily identify with my worries

as well as give me practical suggestions.

My daughter just turned 10 so she and a are close in age.

Aundrea's problems began about 2 1/2 years ago. She had spiking

fevers, rash, joint pain, muscle pain and sorethroats. After her

first two major flares the fevers pretty much have subsided and she

is left with the other symptoms.

Currently she is treated with mtx 15 mg subq weekly. She began this

treatment last winter after 2 courses of prednisone. Prior to that

she had tried plaquenil and NSAIDS with limited success. Currently,

she is doing wonderful. She has occasional stiffness in her ankles

usually in the morning or in school if she has been sitting for to

long. The rash is blotchy and comes and goes almost daily but isn't

problematic for her. It was controled with plaquenil but that drug

caused her to have a major sun-sensitivity problem so we

discontinued it.

Some things that I did after Aundrea was diagnosed was to meet with

her school. We developed a 504 plan, which is a medical needs

plan. It allowed Aundrea to do things like: keep a water bottle at

her desk, use mechanical pencils, extra set of textbooks at home,

ability to get up and stretch whenever necesary, exempt from

tardiness rules and late assignment rules, extra time on tests (if

arthritis was in her wrists she could dictate assignments etc) They

also created a special room for her where she could go lay down and

rest when the fatigue factor was a problem. She could then return

to her classroom as she felt able.

I know the beginning stages of this disease are so very

overwelming. I am sure that every parent here easily recalls

those " dark " days. Thats why we want to be here for you. We have

all had those sleepless nights and sadness as we have watched our

children struggle. We also know that there are going to be brighter

days down the road...Just hang in there ' and please continue

to visit and ask questions, vent, whatever...This is a safe place to

come and share your heart!

God Bless,

(Aundrea 10 systemic)-

-- In , ' Taunton <lcdanceacademy@y...>

wrote:

> Thank you Mahala,

>

> I'm not sure where to start. I'm a bit overwhelmed I guess, and a

bit in denial. The different divisions of JRA, and then the

subdivisions are mind boggeling. I guess I would like to know

others experiences with systemic jra. What should I do to help my

daughter....

>

> Anything to help me get on the right track would be great.

> Thank you,

> ' & a

>

> mahala pinsonneault <mamahala2005@y...> wrote:

> I am fairly new to this site as well, but welcome. I have an 8

year old boy with polyarticular JRA. please ask away. I have found

there is a lot talked about on this site, it's pretty cool.

>

> Mahala

>

> Taunton <lcdanceacademy@y...> wrote:

> Hi,

> My name is ' and my 9 year old daughter a has been

battling

> uveitis for over 3 years now. Before she started Methotrexate she

> would fall asleep in school, complain of sore muscles and walk

with a

> limp. I just thought that the symptoms went along with her pars

> planitis (intermediate eye inflammation).

>

> Five doctors, 2 eye surgeries later, she was just recently

diagnosed

> with JRA associated uveitis. The inflammation has spread

throughout

> th the eye and her pars planitis is now called panuveitis. Vision

in

> one eye is doing well thanks to a vitrectomy and cataract removal/

> lens implant. We finally found the right medicine for her.

>

> After Methotrexate with cyclosporine; CellCept with cyclosporine;

> Chlorambucil.......she now gets IvIg infusions once a month over a

3

> day period. I post on a uveitis support group site, but really

need

> some insight from other parents whose children have JRA.

>

> My daughter has a sore throat and fever tonight. So I am just

> looking for information and found this site.

>

> Thanks for listening,

> '

>

>

>

>

>

>

>

>

[Guest guest]

This one is sooo funny I am gonna share it with my in laws , hehe

New Mom

> The sad thing is, I can relate! LOL> > 65 year old new Mom>>>>>>With all the new technology regarding fertility, a 65-year-old>>woman was able to give birth to a baby recently.>>>>When she was discharged from the hospital and went home, her>> relatives came to visit.>>>> "May we see the new baby?" one asked.>>>>"Not yet," said the mother. "I'll make coffee and we can visit for>>awhile first.">>>>Thirty minutes had passed, and another relative asked, "May we see the>>new baby now?">>>> "No, not yet," said the mother.>>>> After another few minutes had elapsed, they asked>> again, "May we see the baby now? ">>>> "No, not yet," replied the mother.>>>> Growing very impatient, they asked," Well, when CAN we see the baby?">>>> WHEN HE CRIES!" she told them.> & g t;>> "WHEN HE CRIES??" they demanded. "Why do we have to wait until>>he CRIES?">>>> " BECAUSE, I forgot where I put him..."

[Guest guest]

Hi, I am new and just wanted to introduce myself. I have an 8 year old

boy with Aspergers and am also a single mom. He is in a great school

system, but even so we still have our daily problems. Currently his

classmates are picking him on. They think he is annoying and he can

be, but they continually call him names. I was recently told that when

he goes to the library and sits at a table, the other kids will get up

and move, leaving him to sit alone. What have some of you done to help

your child develop skills to deal with other kids and their lack of

understanding of a kid with AS?

[Guest guest]

My son's speech therapist and social worker go into his classroom at the

beginning of the year and talk about " The Sixth Sense " to his classmates. It

is a way to teach typical peers about their classmate with autism. It should

be written into the child's IEP so that it is done every year with every new

class. Usually the child with autism is not in class at the time of the

presentation. Pam

Here is a link about the book:

_Amazon.com: The Sixth Sense II: Books: Carol Gray_

(http://www.amazon.com/Sixth-Sense-II-Carol-Gray/dp/1885477902)

This is a link about the program (a little technical but may be helpful)

_http://www.thegraycenter.org/cms/ktmlliterf/files/uploads/Research_on_Sixth_S

ense_II.pdf_

(http://www.thegraycenter.org/cms/ktmlliterf/files/uploads/Research_on_Sixth_Sen\

se_II.pdf)

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[Guest guest]

Hi ,

My son (7 years) just started going to Social Skills classes at a clinic that

offers therapy mainly to kids on the spectrum. They work on appropriate

conversations with friends & remembering to use good manners, etc. He also

receives speech therapy at school specifically for pragmatic language which is

conversational speech. Does Zackary's school have speech services? I *think*

most kids with AS qualify for speech services for pragmatic reasons. The reason

being that interpreting speech literally can interfere with understanding what

the teacher teaches. And I'm sure there are more reasons too.

Liz

Houston

Welch <fireflywelch1@...> wrote:

Thanks for your comments and especially the links. I talked with the

teacher and assistant Principal and they have talked with the class about

kindness, etc. I just told my son two weeks ago that he had AS and would like to

talk with his class. My biggest hurdle is teaching Zackary the social skills he

needs to deal with others who may be unkind to him and to help him learn how to

make friends. Do you have any other resources associated with helping them learn

about friendship?

Thanks

Re: ( ) New Mom

My son's speech therapist and social worker go into his classroom at the

beginning of the year and talk about " The Sixth Sense " to his classmates. It

is a way to teach typical peers about their classmate with autism. It should

be written into the child's IEP so that it is done every year with every new

class. Usually the child with autism is not in class at the time of the

presentation. Pam

Here is a link about the book:

_Amazon.com: The Sixth Sense II: Books: Carol Gray_

(http://www.amazon. com/Sixth- Sense-II- Carol-Gray/ dp/1885477902)

This is a link about the program (a little technical but may be helpful)

_http://www.thegrayc enter.org/ cms/ktmlliterf/ files/uploads/ Research_

on_Sixth_ S

ense_II.pdf_

(http://www.thegrayc enter.org/ cms/ktmlliterf/ files/uploads/ Research_

on_Sixth_ Sense_II. pdf)

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at

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safety and security tools, millions of free high-quality videos from across the

web, free AOL Mail and much more.

[Guest guest]

Hi , I'm glad you're here. I've only been in the group for a

couple weeks and it has already had such an effect on the way I cope

with this. It's very empowering! I'm soaking up everything I can

about the disease- (5) has been diagnosed with CVID for only a

few months. To me it was a relief because I had such a sick baby for

so many years. I never believed it was a coincidence that he was

just " unlucky " and getting every illness/diagnosis there was. I

always believed there was some underlying disease causing all of his

sickness. Now we know what it is we can do something. Otherwise you

spin your wheels and try to help, and it might for a minute, but it

never really seems to get " better. " Maybe now with the right

diagnosis and the right doctors and the IVIG he'll be healthier.

This is definitely a great resource. I hit and Nobles today

and had them order me every book I could find on kids with chronic

illness, both for me and him. Don't worry about rambling, not being

in the same place as everyone else or any of that. Let me know if

you need to talk or just vent. Nice to meet you!

Janet

mom to jacob-5-CVID

>

> Hello all, first I wanted to tell you all how much I admire you. I

hope one day to be as strong. My 19 month old was diagnosed with

Selective IGA and every day and night since that day (2 weeks ago)

has been very hard. I have OCD as well as GAD (general anxiety

disorder) which has not helped. Like most my pediatrician was

concerned and ordered up a blood test for IGA. She told me what it

was but I never thought that my baby could have it. He does and she

also seems to feel his older brother has it as well, it's just that

since he never really attended daycare it wasn't suspected. I am so

scared and honestly after reading some emails, even more so now. I

am so grateful to have others to talk with. Right now I'm still

trying to cope with the fact that he has IGAD. I have great friends

and family and they try to say the right things, i just don't think

they can understand like you all can. I cry day and night, pray to

God to give it to me and take it away from my

> baby and wonder why. I'm sorry to ramble, I'm just glad to have

others to talk with. God Bless you all.

>

>

>

> Mother of 19mths and Bradley 4 yrs.

>

>

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

>