Hi Becky

[Guest guest]

heath kris,

well you made my day to

know that someone else is with me also i wanted to let you know that i read

one of your letters before and you have a 13 year old girl too right? can i

ask you if she has any friends? my daughter does not any more cause there is

things she can not do any more so no one calls her any more no one wants to

hang around her and it is very sad maybe our girls could be - mail pal? but

anyhow i wanted to tell you friday we have that school meeting well today

which is monday no one knew what was going on her teacher mrs crotty didn`t

even know we had a meeting now hows that for communication? cause at our

meeting was just the principal, nurse, people from shriners and 2 women from

the school board and i asked the principal if everyone was now going to know

what was going on and hsaid oh don`t worry about it we will get everything

all straighted out i don`t know i feel like friday now was just a big waste

of time but they haven`t seen the last of me cause iam going to still bug

them till they get it right but you know its just me going in there and i

feel like they are playing the game and they cheat to win . do you feel that

way? will i could go on and on about this subject but it makes me so mad so i

better give it a break ok anyhow please let me know about if they could be

pals or if any other children i think that would be really nice well you

have a good day and take care becky

[Guest guest]

Hi Becky thanks for mailing back! I know exactly what you are talking about!!

My daughter Ashton would love to be a e pal with your daughter! She has been

very fortunate that her best friend has stayed by her... but does feel the

frustration of not being able to do all the things she'd like to do & also of

just plain being tired! Alot of her friends have " moved on " since the JRA. &

since we do not know anyone else with JRA I think it would be great and she

is real excited to be able to e-mail your daughter. She just recently

e-mailed another daughter of someone on the list & got her first e-mail back!

It really made her day. Well I gotta go let me know how things are going on

your end with school & all... glad I've finally got a place to go

to....aren't you ?/ This list is terrific! My e-mail is dkakheath@....

Thanks Kris

[Guest guest]

Hi Becky,

My name is Janet. I have not written to this support group for awhile. My

daughter Mandy has pauciarticular jra. She was diagnosed at age 18 months. She

will be 13 in May. I know it is hard for Mandy to make a lot of friends also.

They do not understand her disease too well. Just recently she did make one good

friend, and I am thankful for that. A lot of the other kids are somewhat mean.

She has just learned to tune them out, and enjoy her new friend, who likes her

for her. I just hope it lasts for Mandy's sake. What is your daughter's name?

Take care, Janet

Re: Hi Becky

From: BanJsmom@...

heath kris,

well you made my day to

know that someone else is with me also i wanted to let you know that i read

one of your letters before and you have a 13 year old girl too right? can i

ask you if she has any friends? my daughter does not any more cause there is

things she can not do any more so no one calls her any more no one wants to

hang around her and it is very sad maybe our girls could be - mail pal? but

anyhow i wanted to tell you friday we have that school meeting well today

which is monday no one knew what was going on her teacher mrs crotty didn`t

even know we had a meeting now hows that for communication? cause at our

meeting was just the principal, nurse, people from shriners and 2 women from

the school board and i asked the principal if everyone was now going to know

what was going on and hsaid oh don`t worry about it we will get everything

all straighted out i don`t know i feel like friday now was just a big waste

of time but they haven`t seen the last of me cause iam going to still bug

them till they get it right but you know its just me going in there and i

feel like they are playing the game and they cheat to win . do you feel that

way? will i could go on and on about this subject but it makes me so mad so i

better give it a break ok anyhow please let me know about if they could be

pals or if any other children i think that would be really nice well you

have a good day and take care becky

------------------------------------------------------------------------------

------------------------------------------------------------------------------

For links to websites with JRA info visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi Kris,

So glad your daughter emailed my daughter Mandy. I have not written anything on

here for a long while, and see there are a lot of new people. Wonderful! I just

started a full time job about a month ago. My daughter Mandy was diagnosed at 18

months old. She will be 13 in May. She has polyarticular JRA. It seems to be

under control right now. She takes Plaquenil, Tolmetin, Folic Acid, and MTX.

Mandy just sent Ashton another email. How is Ashton doing? What type of

arthritis does she have? I am so thankful for the days Mandy is pain free. Every

day is different. Take care, Janet Moyer

Re: Hi Becky

From: dkakheath@...

Hi Becky thanks for mailing back! I know exactly what you are talking about!!

My daughter Ashton would love to be a e pal with your daughter! She has been

very fortunate that her best friend has stayed by her... but does feel the

frustration of not being able to do all the things she'd like to do & also of

just plain being tired! Alot of her friends have " moved on " since the JRA. &

since we do not know anyone else with JRA I think it would be great and she

is real excited to be able to e-mail your daughter. She just recently

e-mailed another daughter of someone on the list & got her first e-mail back!

It really made her day. Well I gotta go let me know how things are going on

your end with school & all... glad I've finally got a place to go

to....aren't you ?/ This list is terrific! My e-mail is dkakheath@....

Thanks Kris

------------------------------------------------------------------------------

Enter:

------------------------------------------------------------------------------

For links to websites with JRA info visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi Janet!

My daughter Ashton has polyarticular JRA... she is on MTX,folic acid and

Relefan(NSAID) right now ... we finally got her off teh predinisone and at

the same time switched ot her Tolectin for Relefan since it is only a twice a

day med & much easier with school. (No meds to take at school) Ashton is so

happy that Mandy e-mailed her! While she has maintained some of her close

friendships that she had before the JRA ..she doesn't have anyone that can

understand teh " good & bad days " . She has felt really alone in this disease!

I hope the girls can keep in touch through e-mail! Isn't the internet a

wonderful thing! I must say this again I am so glad I found this list!

Prayers for you & yours... Kris

[Guest guest]

hi! janet, my daughter`s name is bernadine and iam glad mandy has a good

friend i pray that for my girl because every one needs a friend her and i are

very close and we talk about everything but i wish she had a friend to play

or talk to or stay over night and giggle or go to the movies or just to call

on the phone. but it is so hard when she misses school or goes to the dr. and

everyone esle is roller skating or has babysitting jobs etc i wish some one

would take some time and be her friend ill just keep on praying cause

somewhere out there there has to be someone right. well you take care -- becky

[Guest guest]

kris, thank -you i don`t know whos more excited me or bernadine that now she

can make a friend over the internet or me that i had found this site and all

the wonderful people on here it is so nice to be able to have some one know

what you are talking about we went through parent to parent for a while but

my person and me too just lost contact i guess and as for bernadine i got her

2 pen pals though hopes and dreams but they don`t really write she writes

more than the other girls but not that i don`t understand we all get so busy

but i think this is going to be wonderful so as soon as i get off of here

she is going to e-mail your daughter so ill write more to you later because

she is all happy ( which is nice to see ) so you take care becky

[Guest guest]

Hi Janet,

So nice to get a message from you. Congratulations, about your new job!

I hope it's something that you enjoy doing. Also, great to hear good

news about Mandy. I'm glad she hasn't been having any flare ups and hope

the JRA continues to stay under control. Maybe she's heading towards a

remission? That would be great! She deserves it. You're right, about the

list having lots of new people. Last time I checked, I was very

surprised to see that we now have over 100 members.

I think it's really nice that the girls have decided to become Pen Pals.

I hope their friendship blossoms

Don't forget to send us a message every so often, when you're not too

busy!

Take care,

Georgina

From: " Janet & Gilbert Moyer " <gjam@...>

Hi Kris,

So glad your daughter emailed my daughter Mandy. I have not written

anything on here for a long while, and see there are a lot of new

people.

Wonderful! I just started a full time job about a month ago. My daughter

Mandy was diagnosed at 18 months old. She will be 13 in May. She

has polyarticular JRA. It seems to be under control right now. She takes

Plaquenil, Tolmetin, Folic Acid, and MTX. Mandy just sent Ashton

another email. How is Ashton doing? What type of arthritis does she

have? I am so thankful for the days Mandy is pain free. Every day is

different. Take care, Janet Moyer

[Guest guest]

---Hey Becks (can I call ya Becks...if not..hey that's all good! lol)

hey...I am in with ya on the addicted to the internet thing! I

mean..whose name do you see like 5 or 6 times in a row

sometimes..kathi kathi kathi kathi...lilstepper lilstepper..blah blah

blah!!! LOL! (Umm yeah..I laugh at myself..) I think I am a hermit

kind of person too. I mean I haven't made any friends much in this

town yet...but it is easier to come here. Peeps are too busy for

friends around where i live or maybe it's just me. Glad to see your

back. did you see your uncle too? how's things goin with him anyway? I

will be goin thru boise this coming weekend sooooo I think I may take

a drive down warm springs ave..you know about that street don't you? I

luv that place! oooohhhhh boise...how I miss it still!

Kathi (who's just another name)

In , " Becky "

<rebeccahampton@c...> wrote:

> Yea, I'm at the pooter. Got home from my wkend away and wanted to

> catch up. I'm addicted. lol! Actually, I just don't have much of a

> life. I like being somewhat of a hermit, though. Seriously

> considering a nap..yaaawwwnnnn. Sorry, stayed up late visiting w/my

> mom/aunt and oded on the carbs this wkend. Back to healthyness

> tomorrow.

> Becky

>

>

> > > When is everyone starting their next challenge? I'm starting

> > > tomorrow (3/31) Totally feel yucky after this carb-loaded free

> > > wkend. My Aunt/Uncle " don't eat alot of meat " , which, to them,

> > means

> > > low protein. Yuck! My hubby's home all this next wk (had kids

> on

> > > spring break last wk). It may not be a perfect wk; I have a hard

> > time

> > > getting anything done when he (or the kids) are home all day.

> > > Hopefully, he'll be doing alot of fishing. (Fresh spring salmon

> for

> > > dinner tonite. Yuummm!)

> > > Becky

[Guest guest]

I just went about 40miles south of here to my Aunt's in Manzanita.

She lives in a great house about 4blocks from the beach. The kids

and I had a great time. Uncle Don is doing great. He's still a

little sore and will get his staples out this wk. My other Aunt went

back home (Albequrque, NM) after the surgery trip. She went to her

church and thanked them for praying for him and gave them an update.

A man ,who usually doesn't even attend that church, was there. When

he learned that Uncle Don was o- and needed a kidney, he gave it some

thought and decided he wants to donate one of his kidneys to my

uncle. Isn't that cool! It brings tears to my eyes to think of this

stranger's kindness. He decided that was the reason God put him in

that church on that day. Wow! The man is 85, but is in good health.

He and his family feel very good about doing this. It's early yet,

we don't know if it will happen, but, isn't that great? Gives me warm

fuzzies just thinking about it. Even if this transplant doesn't

happen I think it is a wonderful thing.

Becky

> > > > When is everyone starting their next challenge? I'm starting

> > > > tomorrow (3/31) Totally feel yucky after this carb-loaded

free

> > > > wkend. My Aunt/Uncle " don't eat alot of meat " , which, to

them,

> > > means

> > > > low protein. Yuck! My hubby's home all this next wk (had

kids

> > on

> > > > spring break last wk). It may not be a perfect wk; I have a

hard

> > > time

> > > > getting anything done when he (or the kids) are home all

day.

> > > > Hopefully, he'll be doing alot of fishing. (Fresh spring

salmon

> > for

> > > > dinner tonite. Yuummm!)

> > > > Becky

[Guest guest]

Wow! That's wonderful! There are so many good people all over the place,

many of them silent going about, doing good.

> I just went about 40miles south of here to my Aunt's in Manzanita.

>She lives in a great house about 4blocks from the beach. The kids

>and I had a great time. Uncle Don is doing great. He's still a

>little sore and will get his staples out this wk. My other Aunt went

>back home (Albequrque, NM) after the surgery trip. She went to her

>church and thanked them for praying for him and gave them an update.

>A man ,who usually doesn't even attend that church, was there. When

>he learned that Uncle Don was o- and needed a kidney, he gave it some

>thought and decided he wants to donate one of his kidneys to my

>uncle. Isn't that cool! It brings tears to my eyes to think of this

>stranger's kindness. He decided that was the reason God put him in

>that church on that day. Wow! The man is 85, but is in good health.

>He and his family feel very good about doing this. It's early yet,

>we don't know if it will happen, but, isn't that great? Gives me warm

>fuzzies just thinking about it. Even if this transplant doesn't

>happen I think it is a wonderful thing.

>Becky

>

>

> > > > > When is everyone starting their next challenge? I'm starting

> > > > > tomorrow (3/31) Totally feel yucky after this carb-loaded

>free

> > > > > wkend. My Aunt/Uncle " don't eat alot of meat " , which, to

>them,

> > > > means

> > > > > low protein. Yuck! My hubby's home all this next wk (had

>kids

> > > on

> > > > > spring break last wk). It may not be a perfect wk; I have a

>hard

> > > > time

> > > > > getting anything done when he (or the kids) are home all

>day.

> > > > > Hopefully, he'll be doing alot of fishing. (Fresh spring

>salmon

> > > for

> > > > > dinner tonite. Yuummm!)

> > > > > Becky

>

>

>

>

[Guest guest]

Hi . lol This is so funny. Its sort of like writing a

letter to myself. =) I go by at school. I go to North

College. But I'll be at St. in the fall. I'm

actually taking macro this semester. That is a tough class, well

for me. Thanks for the confidence. I think I also just need to be

patient too. Talk to you soon.

xoxo, Becky

> Hi Becky from Houston, I'm Becki from Houston!!! Actually, I

mostly

> go by nowadays. I am really sorry to hear you are feeling

> ill. The only thing I can say is hang in there. These meds do

work,

> even though they do a number on us, so I am confident your liver

> tests will normalize at some point and you WILL feel better.

> Unfortunately, you probably just have to ride it out!

>

> Where do you go to school? I teach economics at UH.

>

> (AIH dx Dec 2001)

[Guest guest]

Hi Becky,

My son , 18 years old, Asperger/autism spectrum is now taking the

maximum Zoloft allowed by FDA at 200 mg. We were forced to take

psychotropic medications to intervene (intervention) when he had a

serious health situation of not eating, excessive hand-washing,

refusal to eat and loss of weight back in July 2004. I am now

reducing his Zoloft by cutting pills. The psychiatrist is allowing me

to change his amount 25 mg per month. I must carefully monitor how

does. I watch his moods, energy, sleep and how he does

performing tasks. I take nothing for chance. He is now at 150 mg. I

think you will find as an advocate for your child that most everything

will depend upon you in checking every facet of how the medical

experts do. In my case, I am changing his medication slowly and the

Psychiatrist becomes relaxed and easy to work with when I (geez, this

should be turned around) I tell him he is doing great at lower amounts.

is a quiet, intellectual AS young man, who has OCD and

depression tendencies. As you are very aware, the autism spectrum is

wide.

The reason I mentioned clinics is because it may be necessary to get

help from a hospital staff. Hopefully, this will NOT even come

about. I hope your doctor will find effective medications soon.

There is also biomedical treatments, but this is just way too much to

talk about. In my case and yours, you are dealing with high amounts

of psychotropic medications. YOU MUST address this issue first,

before ever thinking about changing how you can help your son.

Keep us posted if you can. I know you have much to do.

Mark