Introduction

July 27, 2001

Hi, !

I'm Judi with daughter , 11, ds; Duncan, 8; Ian, 16; and Corey, 18

going on 45. ; )

Jess had VSD/AV surgery too and has allergies--but only one set of tubes.

I was interested in your comment about Synthroid--I thought I heard

something about it on the tv earlier this week, but didn't catch it all.

What's up with that? Both my parents also take it.

Judi

Introduction

Hi! My name is and I have a 8 year old son with DS. Also a 6 yr. old

son too. Ben has had AV canal surgery, 5 sets of tubes, tonsils and

adenoids

out and has allergies which he is on allergy medications and shots. Also

has

hypothyroidism and takes Synthroid which is under scrutiny right now.

I am looking foward to getting to know people and talk about others

experiences and insights.

Mattern

July 27, 2001

Hi, !

I'm Judi with daughter , 11, ds; Duncan, 8; Ian, 16; and Corey, 18

going on 45. ; )

Jess had VSD/AV surgery too and has allergies--but only one set of tubes.

I was interested in your comment about Synthroid--I thought I heard

something about it on the tv earlier this week, but didn't catch it all.

What's up with that? Both my parents also take it.

Judi

Introduction

Hi! My name is and I have a 8 year old son with DS. Also a 6 yr. old

son too. Ben has had AV canal surgery, 5 sets of tubes, tonsils and

adenoids

out and has allergies which he is on allergy medications and shots. Also

has

hypothyroidism and takes Synthroid which is under scrutiny right now.

I am looking foward to getting to know people and talk about others

experiences and insights.

Mattern

July 27, 2001

In a message dated 7/27/2001 10:07:17 PM Pacific Daylight Time,

Green3@... writes:

>

So do most of the people with ds that I know, both children and adults. So

many I can't think of them all! Treatment for underactive thyroid, which is

so common in our kids. Ramona has taken it since she was 8 and her hair

started falling out in clumps. Since alopecia is also somewhat more common

in the down syndrome population, I guess we're lucky that her only problem

turned out to be low thyroid, which is so easily treatable.

Take it easy,

, mom to Ramona 17ds, Clara 25 (and expecting Ramona's first niece on

Ramona's 18th birthday, September 10, and Elena (who turned 22 today)

(Ramona's birthday is next, I have been repeatedly reminded, lol)

July 27, 2001

In a message dated 7/27/2001 10:07:17 PM Pacific Daylight Time,

Green3@... writes:

>

So do most of the people with ds that I know, both children and adults. So

many I can't think of them all! Treatment for underactive thyroid, which is

so common in our kids. Ramona has taken it since she was 8 and her hair

started falling out in clumps. Since alopecia is also somewhat more common

in the down syndrome population, I guess we're lucky that her only problem

turned out to be low thyroid, which is so easily treatable.

Take it easy,

, mom to Ramona 17ds, Clara 25 (and expecting Ramona's first niece on

Ramona's 18th birthday, September 10, and Elena (who turned 22 today)

(Ramona's birthday is next, I have been repeatedly reminded, lol)

July 27, 2001

In a message dated 7/27/01 10:16:51 PM Central Daylight Time,

linman42@... writes:

> This is a great, informative, supportive, funny and inspirational group. I

> was thinking the other day that 10 years ago when my daughter was a baby,

> there was nothing like this in existence. It was even hard to find a

>

Imagine 36 years ago. Jessie

July 27, 2001

In a message dated 7/27/01 10:16:51 PM Central Daylight Time,

linman42@... writes:

> This is a great, informative, supportive, funny and inspirational group. I

> was thinking the other day that 10 years ago when my daughter was a baby,

> there was nothing like this in existence. It was even hard to find a

>

Imagine 36 years ago. Jessie

July 27, 2001

,

You know, you are really an oldie, huh? LOL!!! Glad you are back. A few

months ago, I found the newspaper article you sent to me back in 1994 or

1995 on Ben. I think you and I go back to the P* days, before AOL was big.

is almost 8. In addition to DS, he has apraxia and epilepsy. He's

had 8 sets of tubes and will probably have another tube placed in his one

ear soon. We have our behavioral moments, but he's my pride and joy!

Introduction

> Hi! My name is and I have a 8 year old son with DS. Also a 6 yr.

old

> son too. Ben has had AV canal surgery, 5 sets of tubes, tonsils and

adenoids

> out and has allergies which he is on allergy medications and shots. Also

has

> hypothyroidism and takes Synthroid which is under scrutiny right now.

> I am looking foward to getting to know people and talk about others

> experiences and insights.

> Mattern

>

July 27, 2001

,

You know, you are really an oldie, huh? LOL!!! Glad you are back. A few

months ago, I found the newspaper article you sent to me back in 1994 or

1995 on Ben. I think you and I go back to the P* days, before AOL was big.

is almost 8. In addition to DS, he has apraxia and epilepsy. He's

had 8 sets of tubes and will probably have another tube placed in his one

ear soon. We have our behavioral moments, but he's my pride and joy!

Introduction

> Hi! My name is and I have a 8 year old son with DS. Also a 6 yr.

old

> son too. Ben has had AV canal surgery, 5 sets of tubes, tonsils and

adenoids

> out and has allergies which he is on allergy medications and shots. Also

has

> hypothyroidism and takes Synthroid which is under scrutiny right now.

> I am looking foward to getting to know people and talk about others

> experiences and insights.

> Mattern

>

July 28, 2001

In a message dated 7/28/2001 2:17:33 AM Eastern Daylight Time,

JB66111@... writes:

> > This is a great, informative, supportive, funny and inspirational group.

> I

> > was thinking the other day that 10 years ago when my daughter was a baby,

> > there was nothing like this in existence. It was even hard to find a

> >

>

> Imagine 36 years ago. Jessie

>

> I've been wondering if the lack of participation from parents of younger

> kids in our local real live support group is due to the internet? Not many

> seem to have an interest in informational meetings and meeting families

> with kids the same age or working on committees to help make changes in our

> community in the way they treat people with DS.

> Of course, the social events are well attended, those are still big! And

> the activities for the kids with DS, at the older age levels are very well

> attended.

>

> How many people here have local support groups and how many of you are

> active with them?

> Cheryl in VA

July 28, 2001

In a message dated 7/28/2001 2:17:33 AM Eastern Daylight Time,

JB66111@... writes:

> > This is a great, informative, supportive, funny and inspirational group.

> I

> > was thinking the other day that 10 years ago when my daughter was a baby,

> > there was nothing like this in existence. It was even hard to find a

> >

>

> Imagine 36 years ago. Jessie

>

> I've been wondering if the lack of participation from parents of younger

> kids in our local real live support group is due to the internet? Not many

> seem to have an interest in informational meetings and meeting families

> with kids the same age or working on committees to help make changes in our

> community in the way they treat people with DS.

> Of course, the social events are well attended, those are still big! And

> the activities for the kids with DS, at the older age levels are very well

> attended.

>

> How many people here have local support groups and how many of you are

> active with them?

> Cheryl in VA

July 28, 2001

Check out Rileykids.org and click on stories about our kids. There is a

picture of Ben and a short story about him when he was at Riley Hospital for

his heart surgery. The picture of him is current. he's the one with no

hair!!

Mattern

July 28, 2001

Check out Rileykids.org and click on stories about our kids. There is a

picture of Ben and a short story about him when he was at Riley Hospital for

his heart surgery. The picture of him is current. he's the one with no

hair!!

Mattern

July 28, 2001

In a message dated 7/28/01 7:46:00 AM Central Daylight Time,

cindysue@... writes:

> He could not

> tolerate being in a room with a bunch of strangers, he'd shut down

> completely. That is a SI and transition issue. For those whose children

> don't have those issues, feel very lucky!

>

HI

Oooh yes this is the one thing I thank the Lord for.....Sara's ability to

adjust to any situation. I still get nervous when I take her to into certain

situations but after 5 min. I see my worries disappear. We took Sara to a

weekend get away, mostly adults except for two boys her age. She was the hit

of the party among 10 couples. Sara's main behavior problems really happens

at school, rigid rules and all......hey it was the same for my other kids too

Heehee

Our support here is very small, we have a small number of parents involved

with this DS support group. Most parents just wing it on their own. We do

have a Special Moms group who are active once a month for lunch and I do

enjoy that but my real support comes from being online.........sharing the

epilepsy with you is great, I did cry when I heard was also DX with

it but Im glad we have each other

I know I don't say this enough but THANK YOU for providing this needed arena

for us to share

Kathy mom to Sara 9

July 28, 2001

In a message dated 7/28/01 7:46:00 AM Central Daylight Time,

cindysue@... writes:

> He could not

> tolerate being in a room with a bunch of strangers, he'd shut down

> completely. That is a SI and transition issue. For those whose children

> don't have those issues, feel very lucky!

>

HI

Oooh yes this is the one thing I thank the Lord for.....Sara's ability to

adjust to any situation. I still get nervous when I take her to into certain

situations but after 5 min. I see my worries disappear. We took Sara to a

weekend get away, mostly adults except for two boys her age. She was the hit

of the party among 10 couples. Sara's main behavior problems really happens

at school, rigid rules and all......hey it was the same for my other kids too

Heehee

Our support here is very small, we have a small number of parents involved

with this DS support group. Most parents just wing it on their own. We do

have a Special Moms group who are active once a month for lunch and I do

enjoy that but my real support comes from being online.........sharing the

epilepsy with you is great, I did cry when I heard was also DX with

it but Im glad we have each other

I know I don't say this enough but THANK YOU for providing this needed arena

for us to share

Kathy mom to Sara 9

July 28, 2001

,

I'm Kathy and I have 2 daughters. (DS) is now 14 (just last week)

and is 10. hasn't had major medical problems except for a

sleep apnea. She has been fully included since kindergarten and is doing

great. I think you will find this group a resource. There are lots of

caring people here. Welcome!

Kathy

July 28, 2001

,

I'm Kathy and I have 2 daughters. (DS) is now 14 (just last week)

and is 10. hasn't had major medical problems except for a

sleep apnea. She has been fully included since kindergarten and is doing

great. I think you will find this group a resource. There are lots of

caring people here. Welcome!

Kathy

July 28, 2001

I think the internet adds the advantage of being able to control your time.

I don't like having meetings in the evenings that take away from my family so

I love the support I feel here and I can access it when I want. It is

interesting to see the different age groups though. I know I feel like I am

always the one to start something for and other kids no matter where

I am (in IL or CA). She is now 14 (had a birthday last week - so hard to

believe)! and so she is still one of the first to do many things. I believe

the support we give one another is immeasurable at all levels. I am so

grateful for those who kept their children and opened the school doors. Now

it is up to those if us who believe the doors need to be automatic to keep

working that. I will cherish the day when no parent of a child with

disabilities has to " fight " for what they believe is best for their child.

Kathy

July 28, 2001