My daughter

[Guest guest]

Hi " shancna " ,

My name is Georgina and my son (age 10 years) has had systemic JRA for

the past 4 years. Right now he's doing pretty good but overall, I guess this hit

him pretty hard. His JRA is pretty severe with no signs of remitting, as of yet.

We've had a lot of ups and downs and whenever everything seems to be going

alright for any period of time, we usually experience another bit of illness.

Even with all the meds he takes, which often control the symptoms really well,

he

still has recurrent flare ups of disease activity. I guess that's the nature of

this illness, though I have heard of some kids who had only one or two flares

and then seemed to 'outgrow' it. On the other hand, I know of a few adults who

had JRA as kids and then went into a long remission and then, surprisingly, had

the illness recur, sometimes as late as 25 years afterwards!

I'm glad you found our group! I think we have about 25 listmembers right now.

Some only read, while others tend to keep in touch more often. Whatever feels

right. If you have any concerns or questions, feel free to write about them and

I'm

sure that at least a couple people will respond. I hope you'll feel right at

home, here :-)

Anyway, it's nice to have you with us!

Take care,

Georgina

shancna@... wrote:

> I am so glad that I have found this site I have been looking for some

information on line that applies to systemic jra I hope to here from oter

parents who s children or child is affected with this as well thank you

Shancna@...

[Guest guest]

In a message dated 02/22/2000 1:10:07 AM Eastern Standard Time,

TaeBoMom22@... writes:

<< She is! I could go on for ever about her! lol but hey, what mom doesn't

brag

about her babies!? I forgot to mention she does tae bo along with me. She

knows to watch out when I'm doing any kicks. ( we've had a couple mishaps)

She especially likes all of the floor work. So,as the very proud mom I am,

I

attached a pic for anyone who would like to see my beautiful little girl.

Ang >>

simply adorable

Barb

who always wanted a daughter but got 2 sons who were cute till their teens

AKA: POMBarb, Mad-Dame Yenta, Tae-Bo Barb

" You can lead a horse to water but cannot make him drink "

so horsemom2 was the perfect addy for me cuz my son is one stubborn horse

<A HREF= " http://hometown.aol.com/horsemom2/myhomepage/index.html " >Barb's

Places on the web</A>

don't forget to *vote for* this site once a day from each browser

<A HREF= " http://www.stankirsch.com/ " >Stan Kirsch - My Official Website -

Welcome!</A>

[Guest guest]

What a doll Ang!! She is adorable!

[Guest guest]

WHAT A DOLL!!!!!

na

--- TaeBoMom22@... wrote:

> Ang,

> your daughter sounds soooooo sweet!!!

> ~Nicci

> She is! I could go on for ever about her! lol but

> hey, what mom doesn't brag

> about her babies!? I forgot to mention she does tae

> bo along with me. She

> knows to watch out when I'm doing any kicks. ( we've

> had a couple mishaps)

> She especially likes all of the floor work. So,as

> the very proud mom I am, I

> attached a pic for anyone who would like to see my

> beautiful little girl.

> Ang

>

>

>

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

> " We are all athletes in training for life rather

> than overweight folks trying to drop some pounds

> temporarily cuz Haste doe not make a Waist "

>

[Guest guest]

taebomom2-@... wrote:

original article:tae-bo_on/?start=12511

> Ang,

> your daughter sounds soooooo sweet!!!

> ~Nicci

> She is! I could go on for ever about her! lol but hey, what mom

doesn't brag

> about her babies!? I forgot to mention she does tae bo along with me.

She

> knows to watch out when I'm doing any kicks. ( we've had a couple

mishaps)

> She especially likes all of the floor work. So,as the very proud mom

I am, I

> attached a pic for anyone who would like to see my beautiful little

girl.

> Ang

>

Ang,

Your daughter is such a cutie! I can't wait until Skylar can tae-bo

with me!

[Guest guest]

Oh, Helen, My heart goes out to you & . I can't even imagine the fear!

I will pray that everything comes out all right. Love ne

----Original Message Follows----

From: " Helen " <angelbear1129@...>

Reply-egroups

" Being Sick Group " <egroups>

Subject: My Daughter

Date: Thu, 31 Aug 2000 15:1:21 -0400

I'm shaking as I write this. My daughter just called.

Her OB/GYN just called her. Her pap test came back positive.

She has a lot of abnormal cells and some good cells.

They are going to do another pap test on Tues. and

a biopsy on the tumor Sept. 13. I know in my brain that this

could be nothing, but the tears won't stop flowing,

as my heart knows what it could mean. I told her in a shaky

voice that we will deal with it when we have to. But we both

lost it. I will NOT loose another daughter, I just can't. I

know it is in God's hands,but I'm still very very afraid.

Helen

--- angelbear1129@...

The Being Sick Community

Sharing our resources:-

Add a website URL you think may help another, or even add a link to your own

webpage.

Chat:-

Scheduled Daily Chats at # on IRC DALnet.

http://www.elderwyn.com/members/chat.html

Egroups JAVA based chatroom for your use anytime:-

chat/

(Anyone on web-tv will not be able to access java and it is very slow

compared to IRC.)

Memorial Page:-

http://www.elderwyn.com/members/inlovingmemory.html

Members Lounge:-

Medical resources, counselling via email, information on the daily chat

times, free psychic readings and the cartoon of the day.

http://www.elderwyn.com/members

Members Profiles, pictures, and birthdays:-

Message Archives and Digest Attachment Pictures:-

messages/

Promoting This Community:-

Would you like people to be able to join from your webpage?

promote/

Subscription Details:-

1) Individual email - means that every email sent to the list you receive.

2) Daily Digest - sends you 25 messages in one single email for you to

browse. This is an excellent option if you receive alot of email.

3) Web only/No mail - means that you can pop into eGroups at your

convenience and receive no email.

To modify your subscription settings please visit

mygroups

To subscribe or unsubscribe

subscribe/

~~~~~~~~~~~~~~~

“Hold on to what is good, even if it's a handful of earth. Hold on to what

you believe, even if it's a tree that stands by itself. Hold on to what you

must do even, if it's a long way from here. Hold on to your life, even if

it's easier to let go. " - Pueblo Prayer

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Helen

My prayers are with you and Through the waiting for results and the

fear of what is wrong. God bless you and keep you always.

Love

Carolyn

[Guest guest]

Hi all, just a note to let you know that the September issue of

DisabledPerson.Com will continue with its analysis of Multiple Chemical

Sensitivity. Malfa-publisher. www.disabledperson.com

[Guest guest]

Hi all, just a note to let you know that the September issue of

DisabledPerson.Com will continue with its analysis of Multiple Chemical

Sensitivity. Malfa-publisher. www.disabledperson.com

[Guest guest]

Hi helen,

I wish i could say something to make it all go away.

Melinda

My Daughter

I'm shaking as I write this. My daughter just called.

Her OB/GYN just called her. Her pap test came back positive.

She has a lot of abnormal cells and some good cells.

They are going to do another pap test on Tues. and

a biopsy on the tumor Sept. 13. I know in my brain that this

could be nothing, but the tears won't stop flowing,

as my heart knows what it could mean. I told her in a shaky

voice that we will deal with it when we have to. But we both

lost it. I will NOT loose another daughter, I just can't. I

know it is in God's hands,but I'm still very very afraid.

Helen

--- angelbear1129@...

The Being Sick Community

Sharing our resources:-

Add a website URL you think may help another, or even add a link to your own

webpage.

Chat:-

Scheduled Daily Chats at # on IRC DALnet.

http://www.elderwyn.com/members/chat.html

Egroups JAVA based chatroom for your use anytime:-

chat/

(Anyone on web-tv will not be able to access java and it is very slow

compared to IRC.)

Memorial Page:-

http://www.elderwyn.com/members/inlovingmemory.html

Members Lounge:-

Medical resources, counselling via email, information on the daily chat

times, free psychic readings and the cartoon of the day.

http://www.elderwyn.com/members

Members Profiles, pictures, and birthdays:-

Message Archives and Digest Attachment Pictures:-

messages/

Promoting This Community:-

Would you like people to be able to join from your webpage?

promote/

Subscription Details:-

1) Individual email - means that every email sent to the list you receive.

2) Daily Digest - sends you 25 messages in one single email for you to

browse. This is an excellent option if you receive alot of email.

3) Web only/No mail - means that you can pop into eGroups at your

convenience and receive no email.

To modify your subscription settings please visit

mygroups

To subscribe or unsubscribe

subscribe/

~~~~~~~~~~~~~~~

“Hold on to what is good, even if it's a handful of earth. Hold on to what

you believe, even if it's a tree that stands by itself. Hold on to what you

must do even, if it's a long way from here. Hold on to your life, even if

it's easier to let go. " - Pueblo Prayer

[Guest guest]

Dearest Helen,

I know a lady who just went through this same thing. Do you know what stage the cells are at? (I believe there are 3 stages from a pap smear.)

Just remember hon that if it was dangerous at this point they would have already had her in hospital and have done the operation. Doctors don't mess around with possible cancers sweetie. Its straight in the hospital.

I cannot begin to know your fear, but know that I am thinking of you and your daughter and hoping that you receive better news soon. If there is anything at all I can do just yell.

*gentle hugs*

Love Aisha

[Guest guest]

Dear Helen: Your daughter was wise to be tested and follow through on treatment. God is with all of you, through this. Love, lee

Helen <angelbear1129@...> wrote:

I'm shaking as I write this. My daughter just called. Her OB/GYN just called her. Her pap test came back positive. She has a lot of abnormal cells and some good cells.They are going to do another pap test on Tues. anda biopsy on the tumor Sept. 13. I know in my brain that this could be nothing, but the tears won't stop flowing, as my heart knows what it could mean. I told her in a shaky voice that we will deal with it when we have to. But we both lost it. I will NOT loose another daughter, I just can't. Iknow it is in God's hands,but I'm still very very afraid.Helen

[Guest guest]

Helen wrote:

Sorry for the outburst this afternoon,

But I took the news pretty hard.

I've got myself calmed down now. I THANK-YOU ALL for your kind

words and

prayers.

The biopsy on the tumor was set up before the news today, so I don't

know

if that will make any difference to change that date or not.

I do not know

what stage or anything else about it. will call next week

probably

with more info on it all. I had an Aunt die with female cancer

and two

Aunt's have mastectomy's because of that terrible word...

Again THANK-YOU

Love and Hugs

Helen

You have

NOTHING to apologize for! I fully understand why you took the news

"pretty hard" if you had taken it all calmly... I would have MORE WORRIED!

Love

Always!

Anne

[Guest guest]

Helen I am sorry to hear about your daughter but keep positive thoughts

there are so many things they can do now to stop anything that started. I

too had abnormal cells and ended up with a hysterectomy but that is because

I needed absolute birth control. They can do cone biopsies that just take

care of the tumor and leave everything in tact. And I am sure in the 15

years since I had it done they have come up with tons of treatments. So stay

positive......

[Guest guest]

Hi Helen

Hang in there sweetie and know that we are all here for you and . Lean on us if you need. We all love you and will think of you,

Take care

Lots of love

Nerys

[Guest guest]

Helen,

((((((HUGS))))))

I'm praying for you and for your daughter. Please take care, and let us know

what happens.

love,

Helen wrote:

> I'm shaking as I write this. My daughter just called.

> Her OB/GYN just called her. Her pap test came back positive.

> She has a lot of abnormal cells and some good cells.

> They are going to do another pap test on Tues. and

> a biopsy on the tumor Sept. 13. I know in my brain that this

> could be nothing, but the tears won't stop flowing,

> as my heart knows what it could mean. I told her in a shaky

> voice that we will deal with it when we have to. But we both

> lost it. I will NOT loose another daughter, I just can't. I

> know it is in God's hands,but I'm still very very afraid.

> Helen

>

>

> --- angelbear1129@...

>

> The Being Sick Community

>

> Sharing our resources:-

> Add a website URL you think may help another, or even add a link to your own

webpage.

>

>

> Chat:-

> Scheduled Daily Chats at # on IRC DALnet.

> http://www.elderwyn.com/members/chat.html

>

> Egroups JAVA based chatroom for your use anytime:-

> chat/

> (Anyone on web-tv will not be able to access java and it is very slow compared

to IRC.)

>

> Memorial Page:-

> http://www.elderwyn.com/members/inlovingmemory.html

>

> Members Lounge:-

> Medical resources, counselling via email, information on the daily chat times,

free psychic readings and the cartoon of the day.

http://www.elderwyn.com/members

>

> Members Profiles, pictures, and birthdays:-

>

>

> Message Archives and Digest Attachment Pictures:-

> messages/

>

> Promoting This Community:-

> Would you like people to be able to join from your webpage?

> promote/

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to browse.

This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into eGroups at your convenience

and receive no email.

>

> To modify your subscription settings please visit

mygroups

>

> To subscribe or unsubscribe

> subscribe/

>

> ~~~~~~~~~~~~~~~

>

> “Hold on to what is good, even if it's a handful of earth. Hold on to what you

believe, even if it's a tree that stands by itself. Hold on to what you must do

even, if it's a long way from here. Hold on to your life, even if it's easier to

let go. " - Pueblo Prayer

[Guest guest]

Injuries can happen weeks and months later. Many parents report their child

slowly descended into autism after the MMR. It happens so slowly.....It is

insidious.

>

>

> . I just wanted you to know that vaccines can damage older children too,

but how do we prove it. I also think the reason they give all those

vaccines to infants is because when it does cause death or damage ( and they

know they will) they can just say it was SIDS or coincidence or whatever as

they make their billions and control all of us. C.

>

>

>

>

[Guest guest]

I think you are absolutely right on this one. A baby can just never let you know if something is different after a shot. Even a toddler will not be able to specify anything. So by the time injuries are discovered it may already be too late to pinpoint the cause and then with the multitude of different vaccines it gets all the more confusing.

a.

.. I just wanted you to know that vaccines can damage older children too, but how do we prove it. I also think the reason they give all those vaccines to infants is because when it does cause death or damage ( and they know they will) they can just say it was SIDS or coincidence or whatever as they make their billions and control all of us. C.

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

, I am so sorry that your daughter has fibro. My aunt and 4

friends have it and it's awful for them. I hope that your daughter does

ok and handles things well. I am also sorry to hear about your little

grandson. That is a shame.

With all the information I've recieved pertaining to vaxes, the more

firm my husband and I become in our decision to no longer vax our baby

boy. (He is 10 months old.) I wonder why he's had so many ear

infections since 5 mos old. (He was vaxed at 4, 6, and 9 mos.) I will

probably always wonder. But he won't be vaxed anymore and we'll see if

he improves. There haven't been a whole lot of problems with him, and I

thank God for that! But I don't want to take anymore chances, so we

won't vax.

~

Maxwell 4/5/00

Texas

--- Carlson <ckcarlson52@...> wrote:

> Hi, I haven't posted in quite awhile but have been reading the

> posts. I wanted to let you know that my 17 year old daughter who has

> undergone many diagnostics tests for the past few months was finally

> diagnosed with Fibromyalgia. I trully believe this was caused by the

> Hep B series and MMR she got in 1997 in her freshman year in High

> School. That was done to her before I knew of the dangers of

> vaccinations. Ironically, my grandson was finishing up his last

> round of shots at that time, and that is what caused his autiism, and

> spurred my researching vaccines, and finding out many other parents

> have seen there children damaged. I just wanted you to know that

> vaccines can damage older children too, but how do we prove it. I

> also think the reason they give all those vaccines to infants is

> because when it does cause death or damage ( and they know they will)

> they can just say it was SIDS or coincidence or whatever as they

> make their billions and control all of us. C

__________________________________________________

[Guest guest]

>Hi, I haven't posted in quite awhile but have been reading the posts. I

wanted to let you know that my 17 year old daughter who has undergone many

diagnostics tests for the past few months was finally diagnosed with

Fibromyalgia. I trully believe this was caused by the Hep B series and MMR

she got in 1997 in her freshman year in High School. That was done to her

before I knew of the dangers of vaccinations. Ironically, my grandson was

finishing up his last round of shots at that time, and that is what caused

his autiism, and spurred my researching vaccines, and finding out many

other parents have seen there children damaged. I just wanted you to know

that vaccines can damage older children too, but how do we prove it. I

also think the reason they give all those vaccines to infants is because

when it does cause death or damage ( and they know they will) they can

just say it was SIDS or coincidence or whatever as they make their billions

and control all of us. C.

>

>

Good points and so sorry about your daughter.

Strongly suggest a homeopath of course.

Let me know if you need referral.

Are you on the hep b injured list?

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

Sheri Nakken, R.N., MA

Vaccination Information & Choice Network, Nevada City CA & UK

530-478-1242 Voicemail

http://www.nccn.net/~wwithin/vaccine.htm

" All that is necessary for the triumph of evil is that good men ( &

women) do nothing " ...Edmund Burke

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. THE

DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

Well Within's Earth Mysteries & Sacred Site Tours

http://www.nccn.net/~wwithin

International Tours, Homestudy Courses, ANTHRAX & OTHER Vaccine Dangers

Education, Homeopathic Education

CEU's for nurses, Books & Multi-Pure Water Filters

[Guest guest]

Hi ,

sounds alot like my daughter Angel. Angel is 5 and was just

recently diagnosed with DS-ASD. She has light stawberry blond hair,

the goes almost white blond in the summer, beautiful blue eyes and

the cutest dimples. Tell us more about .

Take care, cheryl

> I just found your site and am very excited to be able to get

information

> from others who have a child with the same dual diagnosis. My

daughter

> is 9 years old. I have been wondering about her autistic

> tendencies for a couple of years now but never investigated what

could

> help her. For the first 5 years of her life we spent a great deal

of

> time getting her heart repaired.

> is a darling blonde haired, blue eyed lovable child who has

many

> behavior issues that are related to the autistic spectrum. She has

very

> poor eye contact, low attention span, very poor contact with other

> peers, and sensory intergration problems.

> I would like any suggestions relating to peer interaction, toilet

> training, self stimulatory activities.

> Thank you. I look forward to hearing from you.

>

[Guest guest]

hi mary! my nathan is 9yrs old too, he has been dual diagnosed since around

3-4yrs old, but last year they changed the autism up to pdd, when its the

smae mostly. anyways he has many similar behaviors as your sarah, HE gets

lots of SI at school and some at home when needed. I could scan a bunch of

the sensory things i have here fand email them to you if you would like. As

for the peer thing, nathan goes in spurts, sometimes he's very interactive

but mostly ignores everyone or parallel plays, we just keep putting him in

peer activities and all the kids are eager to play with nathan and getting

him to interact with him. For the poor eye contact we just lift nathan head

so he has to look at us when we talk to him, this way he also knows we are

talking to HIM ( has that selective male hearing lol and mild to mod hearing

loss). As for behavior issues we work with a psychology team and come up

with behavior modification stratigies to use, and have had great success

with, right now were working on the self stim stuff but that isnt going as

well but we will keep trying. shawna, mom to nathan 9yrs w/ds, pdd, add/hd,

ocd and nicholas 8yrs

My Daughter

> I just found your site and am very excited to be able to get information

> from others who have a child with the same dual diagnosis. My daughter

> is 9 years old. I have been wondering about her autistic

> tendencies for a couple of years now but never investigated what could

> help her. For the first 5 years of her life we spent a great deal of

> time getting her heart repaired.

> is a darling blonde haired, blue eyed lovable child who has many

> behavior issues that are related to the autistic spectrum. She has very

> poor eye contact, low attention span, very poor contact with other

> peers, and sensory intergration problems.

> I would like any suggestions relating to peer interaction, toilet

> training, self stimulatory activities.

> Thank you. I look forward to hearing from you.

>

>

>

>

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

> Checkout our homepage for information, bookmarks, and photos

of our kids. Share favorite bookmarks, ideas, and other information by

including them. Don't forget, messages are a permanent record of the

archives for our list.

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

>

>

[Guest guest]

>I have a 5 year old who has Achond. She just started school and is

>being picked on by some of the older kids. She came home alittle

>upset today and I tried to exlpain to her that she will be small all

>her life and the reason was the GOD made her Xtra special and they

>are just jealous. But I know that it still hurts her. The kids in her

>class don't treat her any different then they treat everyone else in

>there. The school had to make some extra pervisions for her for in

>the restroom and at the sink. I am trying to keep things as normal as

>possible so they won't make fun of her or tease her. She is very

>active and nothing seems to stop her from what she wants. She will

>get things clear up on our entertainment center or climb on counters

>or sinks. Is there away I can try to help her understand alittle bit

>better about what she might have to go through? She is a very

>independant person more so then her older sister (normal size).

>Please help me to understand so I may help her understand.(Both

>parents are average size). Thanks so very much!!!!

As far as having her understand, the best thing would be to

talk with adult and teenage short statured members, or the

average-sized parents of short-statured kids who've already

been through that situation. There are at least two other

things you can do to help, though: a) talk to your daughter's

teacher and the school administrators about the problem; if

they're more aware of it, they'll be better able to deal with

it and prevent it, and you might consider asking the school

administators if somebody from your local LPA chapter can come

talk to the students and staff about achondroplasia and dwarfing

conditions in general, say, at an assembly; the SF Bay Area

Chapter, for instance, has several people who are very good at

this, and I imagine most other chapters do, too. We've done both

of these things for our son, and each has seemed to help a lot.

--Don

[Guest guest]

For our daughter, this came quite easy for us. We

have a wonderful family in our district, whom had a

daughter who was 4 years old at the time. They so

graciously let us meet them. After that, their

fantasitc example was far more than we ever expected!

We would suggest the same for you and your family.

Have her meet other little people, and let her know

how they fit in as well. We wish you the very best,

and perhaps we will meet at national in 2002, in Salt

Lake City, Utah!

Warmly, the hogganclan

--- hillybillyy@... wrote:

> I have a 5 year old who has Achond. She just started

> school and is

> being picked on by some of the older kids. She came

> home alittle

> upset today and I tried to exlpain to her that she

> will be small all

> her life and the reason was the GOD made her Xtra

> special and they

> are just jealous. But I know that it still hurts

> her. The kids in her

> class don't treat her any different then they treat

> everyone else in

> there. The school had to make some extra pervisions

> for her for in

> the restroom and at the sink. I am trying to keep

> things as normal as

> possible so they won't make fun of her or tease her.

> She is very

> active and nothing seems to stop her from what she

> wants. She will

> get things clear up on our entertainment center or

> climb on counters

> or sinks. Is there away I can try to help her

> understand alittle bit

> better about what she might have to go through? She

> is a very

> independant person more so then her older sister

> (normal size).

> Please help me to understand so I may help her

> understand.(Both

> parents are average size). Thanks so very much!!!!

>

>

__________________________________________________

[Guest guest]

>I have a 5 year old who has Achond. She just started school and is

>being picked on by some of the older kids. She came home alittle

>upset today and I tried to exlpain to her that she will be small all

>her life and the reason was the GOD made her Xtra special and they

>are just jealous. But I know that it still hurts her.

It can't help that you're telling her that her tormentors are jealous

of her. They're not, and she knows it.

I wish I had some advice. Our nine-year-old daughter has

achondroplasia and has been subjected to very little teasing, which I

guess makes us pretty lucky. But I do think you've got to tell your

children the truth, because they quickly figure it out when you're

not.

Dan