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Vicky

Some of the people that were in the old group with us are not here. I tried

to get as many email addresses as possible, but the old group disappeared

before I could get all of them. If you know of anyone that was in the old

group please feel free to invite them to join.

[ ] ???

> What is going on in this group? It seems that some are connected and some

are not. It definately does not feel the same as the old group. Anyone

else feeling this way?

>

> Vicky

>

>

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Well, we haven't got everybody here, we're starting to

pick up a few newcomers. I guess we can't expect that

we can have the group disintigrate and reform without

some loss of continuity. We are a new group, even

though we have many members from the earlier group, I

just think it will take a little more time for our new

group to gain it's own personality. -dz-

--- VicLea227@... wrote:

> What is going on in this group? It seems that some

> are connected and some are not. It definately does

> not feel the same as the old group. Anyone else

> feeling this way?

>

> Vicky

>

__________________________________________________

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  • 1 month later...

Gail, Just posted this to Marisa,

School is going OK. Sam is winning over his 4th grade teacher. Open house

tonight. She told Garry it was wonderful having Sam. Tim has a new

teacher, she's nice. Just keeps bugging that his lunches are not paid for.

I paid $50 last week. JJ has the same teacher as last year. She says he is

doing great! At home he has been very active!! is doing fine-active

as usual. He has a psych appt. on the 13th(JJ too) for his ADHD. Essie is

wonderful! This moring she went out, played in the mud--5 mihnutes before

the bus came! EEEKKKK School has been in session since the 22nd. We have

been in at least 3 times to JJ, Tim and Essie's class.

I am making up folders for each class that JJ and are in with GF

emails about what the kids can and cannot have. This week end we are going

to Stanford Med Center for a Celiac Conference. Dana Korn(Kids with CD) is

speaking and doing a book signing. And we will have 48 hours away from the

kids. Can't wait.

& Garry, parents of (11 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: smilinggail@...

>

>Subject: ???

>Date: Wed, Sep 5, 2001, 6:53 PM

>

>How did school go? Everything working out?

>Gail :-)

>

>

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

>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.

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

>

>

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>> Just keeps bugging that his lunches are not paid for. I paid $50

>last week.

, for having a large family . Do you have a program for free

lunch ? I hope that gets taken care of .

>> is doing fine-active as usual. He has a psych appt. on the

>13th(JJ too) for his ADHD.

Luck & prayers that all will go well

>

> I am making up folders for each class that JJ and are in with

>GF emails about what the kids can and cannot have.

Whew! You are such a busy , busy mom . You're the best . Everytime

your kids give you hugs and kisses , these are reminders of how much

you do for them .

> This week end we are going to Stanford Med Center for a Celiac

>Conference. Dana Korn(Kids with CD) is speaking and doing a book

>signing. And we will have 48 hours away from the kids. Can't wait.

>

> & Garry, parents of (11 ds), (9 ds), JJ (7

> ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All

adopted.

>

Sounds interesting , what a get away . Enjoy getting info at the

conference . Take care.

Irma, 13,DS/ASD.

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,

Thats a bummer . Special diets could be expensive , too . My

goodness! .25 cents ! : ) Whoa! .......I also do the same pay about

$1.75 for 's lunch but for one kid only . My 14 yr. old would

rather take lunch to shool . They're assigned lockers , but no-

backpacks allowed , school rule . Just to & from if they want to take

a backpack straight to their lockers . Speak about changes ,

throughout the years .

Irma, 13,DS/ASD.

> Irma,

>

> We do not qualify for the lunch program, free or reduced. I

provide JJ and

> 's since they are on the gluten frre diet. The other kids are

$1.75

> each!! Not $.25 like when I went to school. We just pay $100 per

kid and

> the school lets us know when they need more money.

>

> & Garry, parents of (11 ds), (9 ds), JJ (7

> ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All

adopted.

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Irma,

We do not qualify for the lunch program, free or reduced. I provide JJ and

's since they are on the gluten frre diet. The other kids are $1.75

each!! Not $.25 like when I went to school. We just pay $100 per kid and

the school lets us know when they need more money.

& Garry, parents of (11 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

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In a message dated 9/5/01 8:01:07 PM Pacific Daylight Time, Scherb@...

writes:

<< This week end we are going

to Stanford Med Center for a Celiac Conference. Dana Korn(Kids with CD) is

speaking and doing a book signing. And we will have 48 hours away from the

kids. Can't wait.

>>

Have a great time ! Glad to hear things are working out okay with all

the school changes. I imagine you will really enjoy your break right about

now.

Gail :-)

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:

Enjoy your time away!! Spend some time spoiling yourself while you're

there, too. Errr....I mean, I hope you learn a lot. :)

Let us know how helpful it is. I, of course, am curious as to what Dana

Korn is like. Do tell! :)

Back to work on stuff for school today.

hugs,

j

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  • 9 months later...
Guest guest

In a message dated 6/22/02 10:12:02 AM Pacific Daylight Time,

p_houser37@... writes:

<< My CT results say I have a hypervascular nodule on the right lobe of the

liver. 1 cm.

Does anyone know what hypervascular means. Everything I found on it doesn't

look good.

Anyone in the medical field on here who can help?

Pam >>

Pam, I'm sorry you're having these problems. Go to google.com and type in

hypervascular nodule. They have lots of info on it.

(((((hugs))))) X12

Gail :-)

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a hypervascular nodule medical terms wise sounds like excessesive cluster of

vessels or something to than nature. The healthcare feild is so HUGE that no

one person could kow it all, I havent come across this in any of my skilled

care pts as of yet, will have to look up later. YOu have my prayers and hugs.

shawna.

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  • 2 months later...

In a message dated 9/16/02 10:36:34 AM Pacific Daylight Time,

seiber1@... writes:

> Does anyone else swell up in the heat?

>

>

Yes, all the time, as soon as the temp goes anywhere about 78 degrees. Then I

can't close my fingers all the way, and I can hardly wear my shoes. The other

thing is that I feel like I am in a sauna, and I start to perspire heavily,

and have to change clothes several times or more a day because they get

soaked. I know part of it is because of surgical menopause, but I take

Premarin for that, and this has been going on for years before that.

Carol in Vancouver, Washington

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In a message dated 9/16/02 4:49:07 PM Central Daylight Time, cacombe@...

writes:

> Yes, all the time, as soon as the temp goes anywhere about 78 degrees. Then

> I

> can't close my fingers all the way, and I can hardly wear my shoes. The

> other

> thing is that I feel like I am in a sauna, and I start to perspire heavily,

> and have to change clothes several times or more a day because they get

> soaked. I know part of it is because of surgical menopause, but I take

> Premarin for that, and this has been going on for years before that.

>

> Carol in Vancouver, Washington

>

Hi again Carol Next time you are at you doctor you might ask him about

thyroid. Orin

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I do, so badly that when I walk I feel like my feet are made of jello.

My hands become difficult to make a fist.

[ ] ???

Does anyone else swell up in the heat?

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!)

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  • 11 months later...

> Hey! Does anyone know where is? I haven't seen her post

for

> quite some time. Hugs and blessings, Ann

You are reading my mind! I already e-mailed her an inquiry without

a response and was thinking of posting that inquiry this morning as

soon as I caught up. Hope she is okay. I didn't hear of any new

natural disasters, did you? I mean, none of the hurricanes touched

shore, right? She wasn't going on a trip, right?

Mel, where are you?

Marta

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  • 2 weeks later...
  • 2 years later...
Guest guest

In a message dated 19/03/2006 20:05:49 GMT Standard Time, mark.grabiec@... writes:

Now I'm confused, this is also off Dame SHirley thingys site"The aims and objectives of the National Alliance for Autism Research (UK) areTo raise funds to accelerate biomedical research to determine and understand the causes and bilogical basis of autism spectrum disorders. And through that understanding, discover and promote new ways of improving the quality of life for all those affected."

>>>That is the AUTISM SPEAKS brief. NAAR have joined with them......................

MAndi x

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They have a different definition of 'biomedical' Steph,

unfortunately....to them it means genetics.....not only do they deny

us access to research, they also pinch our language!!

Zoe :(

>

> Now I'm confused, this is also off Dame SHirley thingys site

>

> " The aims and objectives of the National Alliance for Autism

Research

> (UK) are

>

> To raise funds to accelerate biomedical research to determine and

> understand the causes and bilogical basis of autism spectrum

> disorders. And through that understanding, discover and promote new

> ways of improving the quality of life for all those affected. "

>

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  • 6 months later...

,

My prayers are with your family!

We are praying for a quick flu recovery and and answer for your little ones distress. Make sure to keep your little orally stimulated throughout this ordeal so he doesn't develop an aversion to food or stimuli near his mouth.

I would have to say I wouldn't rule out celiac disease.

Blessings to you,

Marcy

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Thanks for asking, Carol. I'm afraid 's not well at all at the moment. He's been hospitalized now for a bit more than 2 weeks and the doctors still could'nt find out why he can't keep any food down. Saskia and I are taking turns staying up at the hospital with him, which has been also very tiring for us. And of course organizing a place to stay for his bigger sister Nora-Jane also isn't very easy...Right now he has a NG-tube in (a flexible thin spaghetti-like tube going into his stomach by way of his nose), but if his condition won't resolve very soon he'll have to get a G- or J-tube inserted. And what's making matters worse - all of us, including , have caught a stomach flu bug from the hospital! So right now it seems we've all arrived at the lowest possible point, but you never know, do you? Touch wood.

???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

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-Dear ,

I felt compelled this morning to pray for your family, way before I

read this email. We took a look at 's pic. so, that we'd know

who we are praying for. I have been remiss in not posting a pic. of

Jack (9mos.) Hospitals are not fun places, boring --especially

after long hours. We will keep praying for and will lift up

the rest of you, as well.

---- In Down Syndrome Treatment ,

Müller <mueller-winter@...> wrote:

>

> Thanks for asking, Carol. I'm afraid 's not well at all at

the moment. He's been hospitalized now for a bit

> more than 2 weeks and the doctors still could'nt find out why he

can't keep any

> food down. Saskia and I are taking turns staying up at the

hospital with

> him, which has been also very tiring for us. And of course

organizing a

> place to stay for his bigger sister Nora-Jane also isn't very

easy...

> Right now he has a NG-tube in (a flexible thin spaghetti-like tube

going

> into his stomach by way of his nose), but if his condition won't

resolve

> very soon he'll have to get a G- or J-tube inserted. And what's

making

> matters worse - all of us, including , have caught a stomach

flu bug

> from the hospital! So right now it seems we've all arrived at the

lowest

> possible point, but you never know, do you? Touch wood.

>

>

>

> ???

>

>

>

> How are things going?

> Find out anything?

>

>

> Carol in IL

> Mom to seven including , 6 with TOF, AVcanal, GERD,

LS, Asthma, subglottal stenosis, chronic constipation ( cured now )

and DS.

>

> My problem is not how I look. It's how you see me.

>

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,

Our prayers are with you and your family. Can we send cards, anything that would cheer up ? What hospital is he in? How old is ? I have a prayer network set up when Sam's is hospitalized I will contact everyone to pray for !

Sue Mayer

Mom to Sam (5) on NACD Program

???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

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I am so sorry to hear this :-(

Our longest stay in the hospital was 14 days and I thought I was going to go nuts. I am sorry you guys are having to deal with this.

They haven't found anything wrong? How do they know a G or J tube is going to resolve the vomiting?

Are they feeding him really awful hard to digest stuff could be making all this much worse?

As a last ditch effort, have you thought of putting him on the intro diet for SCD and give his tummy some time to calm down, and then take it from there? You prolly don't want to hear that, but I can only offer what I would try in such circumstances. I would be so worried that he would have surgery that didn't help, then what? Would rather try something before they go in, but that's just me. You are there and I know you are a pretty smart guy.

This is so very odd that he just starts vomiting out the blue...... and now a GI bug. Geesh..... Are you making him some homemade yogurt to go down that tube?

I wonder if this could be something going on in his brain? Have they checked that out? Seizures, some kind of lesion on the brain.. I dunno what to look for, but I do know that the brain can cause vomiting. I assume they checked out his ears and are sure he isn't suffering motion sickness from lots of fluid/infection. Sometimes they go looking for really rare causes and it turns out to be something right under their nose.... I hope that the case and you find out SOON.

Will be praying for your WHOLE family. Nothing worse then being sick while IN the hospital. Been there done that too. Belch.

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

[DownSyndromeInfoEx change] ???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

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So sorry you and your family are going through this difficult time. Know that we are thinking about all of you and praying that doctors will soon solve 's problems.

ette

mom to Faith 9(DS)

--------- ???

How are things going?

Find out anything?

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

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