Re: Digest Number 984

June 21, 2001

Oh Michele.....I know what ya mean! I am constantly preaching Juvenile

arthritis and at least 3 days I week I wear one of my KIDS GET ARTHRITIS TOO

t-shirts. These have started many conversations. Being one with visible

arthritis and battling the deformities I have been asked many times what

happened. Car wreck? Birth defects? Injury??? Other ailments??? But never has

anyone other than healthcare professionals said to me, Is the Juvenile

rheumatoid arthritis?I spread the word as often as possible and often feel as

if I too repetitive but I dont think we can tell the story too many times. I

have been to DC twice to advocate on behalf of those with juvenile arthritis

and one visit my own congressman was shocked to learn KIDS GET ARTHRITIS TOO.

This is an opportunity I suggest many of you try to do when the Arthritis

Foundation goes to the hill! I am confident that if we all speak up loud and

speak enough our voices will be heard! I wish everyone the best in their

efforts to get our kids and young adults noticed. If you would like more info

on the advocacy summit in DC check out the arthritis foundation advocacy

site.......

Donna Fox, Volunteer

Arthritis Foundation - KY Chapter

FACES Young Adult & Childrens Group

June 21, 2001

Maybe if everyone wrote a short bio and we compiled them we could send a box

of stories together to these TV personalities!!! just an idea ;-)

Donna

June 21, 2001

In a message dated 6/21/01 10:06:26 PM Eastern Daylight Time,

faces1999@... writes:

>

> Maybe if everyone wrote a short bio and we compiled them we could send a

> box

> of stories together to these TV personalities!!! just an idea

I think that is a great idea!!!!!!!! And maybe add a pic!!!!

June 22, 2001

OH YEA, the same one every time, Were you born like that, and my response

is usually is, no I was born without clothes or shoes on !

June 22, 2001

lololol your funny

Robbin

June 27, 2001

Hello Beth , I am sorry but I guess I was

not very clear... <I have a difficult time explaining

things at times I think... first thank you for your

post.. Alysha has been like this for many years, she

started out doing very well with early intervention

and home school therapy from around the time she was 4

months and was developing almost at a normal pace

except for her size <at 1 year she was only 11 pounds>

this was due to her heart problems.. the regular DS

problems " floppy baby " muscle tone and all but she was

vocalizing and doing fairly well until about age 3

then her speech faded away ... We just got a new case

worker I met her yesterday and I am just tickled as I

feel she can help direct me to where I can get some

answers ...

I will look up the adult DS group... thanks for your

input,,

Cat mom to Alysha

>

________________________________________________________________________

>

> Message: 1

> Date: Tue, 26 Jun 2001 07:13:02 -0400

> From: Beth <paul.3@...>

> Subject: How do we wind down? (Cat)

>

> Cat- I *do* have friends who have children with DS

> (only) who are now

> capable young adults who do some ritualistic

> behaviors after work- more of

> a winding down, but it seems ot be absolutely

> *necessary* that they do

> this. One young woman of 23 has to lock herself in

> her room with her

> stereo blasting for about half an hour after work.

> If she is disturbed

> before then she falls apart.

>

> I hear often of teens with DS who are fully included

> in school and having

> the kinds of successes that we hear about who do

> things like flip Barbies

> for quite a while after school (their pony tails

> swing so nicely!) or wave

> papers in a particular motion. These behaviors are

> confined to bedroom or

> TV room, but they do seem to offer a release of pent

> up energy or

> frustration. Parents talk about giving their kids

> some time and space to

> do these relaxing kinds of things. Of course, many

> people do something to

> unwind as we make our way home from work- it's just

> a difference of *what*.

> (Have a drink, sing along with the stereo blasting,

> a burst of gardening,

> etc.)

>

> I do understand that for Alysha, these behaviors are

> new. That is where a

> medical exam should hopefully yield some answers for

> her.

>

> I have heard over time of kids with DS who do some

> of these more

> obsessive-compulsive type things (for example,

> closing doors and drawers,

> having people cross their legs, etc. These are kids

> with DS NOT dx'ed with

> " anything else " .)

>

> Two adults that I know of who have gone through

> major adult depression

> actually did much better when they moved into

> supported living

> arrangements. Glenn Vetter, who along with Joan was

> the impetus for this

> list, had a similar situation with his own son. At

> 16 or so was

> extremely depressed and withdrawn. Glenn and his

> family did everything

> they could, and responded better when he moved

> into a group home.

> Another young man (whose family had a history of

> depression) made

> wonderfful progress when he moved into a supported

> apartment and got a job.

> He was in his 20's.

>

> I think that it would be worth exploring with family

> members of other

> adults as well as this list. (IMO.) There has been

> a lot of activity on

> the " regular " DS list lately pertaining to adults

> with DS. I think that

> you will get some possible assistance there as well.

> Do you belong to that

> list? I would be glad to get that info and post it

> here.

>

> I think this list has lots of empathy and help for

> challenging behaviors,

> but the realm of adult -onset behavior changes is

> not something that has

> come up here before your posts. There are some

> members (I don't know how

> many more than a few, unless there are many who have

> been lurking). I hope

> other parents of adults will contact you, at least

> privately. It must feel

> so awful to see your daughter change before your

> eyes.

>

> Beth, Mum to Ben, age 10

>

________________________________________________________________________

>

________________________________________________________________________

>

__________________________________________________

August 9, 2001

, I can only speak from my personal experience. If you decide to

go to a colon therapist, make sure you try to find one which is I-ACT

(International Association of Colon Therapists) certified. This person

should have the training and experience to be able to help you correct

your problem. While many non-I-Act certified therapists are very

knowledgable, there are a lot of flakes out there. Closed or open

system will both produce results. In my personal case, i have fond the

closed system to be more effective. Good Luck. Corky

September 2, 2001

In a message dated 9/2/2001 5:16:55 AM Eastern Daylight Time, writes:

study of more than

42,000 brothers and sisters of children with cancer in Denmark, Finland,

Norway, and Sweden found that only those children whose siblings had rare,

inherited cancers were at greater risk for developing cancer themselves,

What about the children who lived at Love Canal? What about environmental causes?

Joanne

October 6, 2001

Have your MD run a Glucose Tolerance Test, it sounds

like the early stages of diabetes.

From: " newjersey23 " <newjersey23@...>

Subject: Sugar and extreme fatigue?

Anybody else here get extremely tired whenever they

consume foods that

contain alot of sugar? I certainly do... About an

hour ago I had a

nice big

bowl of " Froot Loops " cereal with milk...... And now

i feel like i'm

going

to pass out tired.... This drives me nuts because

most normal people

have

energy when they consume sugar and i am the

opposite..... I got tested

for

Hypoglycemia and I do not have that..... This happens

everytime I

consume

sugar...

__________________________________________________

October 6, 2001

> Have your MD run a Glucose Tolerance Test, it sounds

> like the early stages of diabetes.

>

Hello

I just want to add to this that many, many people are

affected by the consumption of sugar in the way Mike

describes. Moreso those of us who have Candida! I thought

the same as you myself, but all my tests were fine.

When we are not absorbing nutrients as we should via our

colon, many symptoms occur. Many diseases begin. The

diabetes/ liver/ gut connection will testify to this also.

I always used to think that because I craved sugar, I had

diabetes. Again, Candida was the cause......

Just another opinion,

Helen

March 7, 2002

Hi all,

Great news. Brit has been successfully decannulated(no more trache) and

her stomma is healing well. She has had her O2 reduced to about 24% or

..5 liters. GO BRIT.

I am contemplating sending her to camp Riley this year.

Hugs

Beth

_______________________________________________________________

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March 7, 2002

<<I am contemplating sending her to camp Riley this year.

Hugs

Beth>>

Great news, Beth! What is camp Riley?

Gail

March 9, 2004

In a message dated 3/9/04 4:31:32 AM Mountain Standard Time,

SSRI medications writes:

>

> I personally find this post to be DEEPLY offensive and did not sign on to

> the list for these kinds of posts. I know I can just delete but these lists

>

> have a focus for a reason. If people could please keep the topic of

> discussion related to SSRIs that would be greatly appreciated. There are

> lots of other lists for Bible students to have discussions.

>

Leah, I share the same sentiment. Our cause is difficult enough, we are so

often discredited because we are " mental patients " who have taken " psychiatric

drugs " -- I believe that religion and spirituality are simply personal issues,

and if we, and those associated with this group start to sound like rabid

Bible-thumpers, we will only give the powers that be MORE ammunition to be used

against us. Evil has always existed, and it will continue to exist in many

forms. I won't say anymore than that I believe this discussion, as interesting

as it might be, is inappropriate and if this is the way this list is going --

tying religion into exposing the dangers of psychiatric drugs, then I will have

to unsubscribe. I have respect for all views on religion, but I don't want

to hear them.

Blind Reason

a novel of espionage and pharmaceutical intrigue

Think your antidepressant is safe? Think again.

March 9, 2004