Introduction

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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)

[Guest guest]

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)

[Guest guest]

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

[Guest guest]

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

[Guest guest]

,

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

>

>

>

[Guest guest]

,

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

>

>

>

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

,

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

[Guest guest]

,

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

In a message dated 7/28/2001 7:18:06 AM Pacific Daylight Time,

b4alltoday@... writes:

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

> for us to share

>

And I'll second that! and Tim, my deepest appreciation. If a list

like this had been around when Ramona was born, life would have been so much

easier....

Take it easy,

mom to Ramona 17ds

[Guest guest]

In a message dated 7/28/2001 7:18:06 AM Pacific Daylight Time,

b4alltoday@... writes:

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

> for us to share

>

And I'll second that! and Tim, my deepest appreciation. If a list

like this had been around when Ramona was born, life would have been so much

easier....

Take it easy,

mom to Ramona 17ds

[Guest guest]

There were no local support groups where we lived when was born. I

was given the name and number of a mom from town, WV and she should

NOT have been a referral source. Then I hooked up with Reggie...but she was

a few hours from me. There was another mom who has a baby 11 days older

than and we sometimes keep in touch via email. So, I started my own

internet group.

Then I moved to Virginia and the nearest group is too far in a busy county

with tons of traffic...an area that I avoid. It's a great group, but not

convenient for me.

I think what makes online groups successful for our community is that the

support is available 27/7, there is no " formal " board of directors with

bylaws, etc. Everything is grass rootsy. Parents don't have to leave their

home and it's very convenient. Len's medical web site has saved parents

hundreds of hours searching for medical information.

Another mom on this list lives in my county and is trying to get a group of

moms together for dinner before school starts back. That would be nice...I

would enjoy that type of networking. The kids are all close in age (I

think) and we will all begin running into each other at SO or camp or???

My feelings may be different because I have three older kids. I made a

conscious decision not to get really involved with disability issues until

the other kids are in college (4 more years). They deserve my time and

attention and I want to enjoy their youth, too. is not losing out,

he's included in the community and school. If he didn't have DS, he'd be

the tag along little brother anyway. He will start SO soon as he will 8

years old in less than a month! I have a hunch that Tim will slowly work

his way to being involved (serving on a board or committee) locally. He's

much better at that than I am. BTW, this advice came to me from Reggie

many years ago

One more thing..with 's behaviors, we have avoided being out and

about in environments he is not familiar with. It's too stressful for both

me and him, so we stick to things we are familiar with. 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!

> > 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?

[Guest guest]

There were no local support groups where we lived when was born. I

was given the name and number of a mom from town, WV and she should

NOT have been a referral source. Then I hooked up with Reggie...but she was

a few hours from me. There was another mom who has a baby 11 days older

than and we sometimes keep in touch via email. So, I started my own

internet group.

Then I moved to Virginia and the nearest group is too far in a busy county

with tons of traffic...an area that I avoid. It's a great group, but not

convenient for me.

I think what makes online groups successful for our community is that the

support is available 27/7, there is no " formal " board of directors with

bylaws, etc. Everything is grass rootsy. Parents don't have to leave their

home and it's very convenient. Len's medical web site has saved parents

hundreds of hours searching for medical information.

Another mom on this list lives in my county and is trying to get a group of

moms together for dinner before school starts back. That would be nice...I

would enjoy that type of networking. The kids are all close in age (I

think) and we will all begin running into each other at SO or camp or???

My feelings may be different because I have three older kids. I made a

conscious decision not to get really involved with disability issues until

the other kids are in college (4 more years). They deserve my time and

attention and I want to enjoy their youth, too. is not losing out,

he's included in the community and school. If he didn't have DS, he'd be

the tag along little brother anyway. He will start SO soon as he will 8

years old in less than a month! I have a hunch that Tim will slowly work

his way to being involved (serving on a board or committee) locally. He's

much better at that than I am. BTW, this advice came to me from Reggie

many years ago

One more thing..with 's behaviors, we have avoided being out and

about in environments he is not familiar with. It's too stressful for both

me and him, so we stick to things we are familiar with. 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!

> > 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?

[Guest guest]

In a message dated 7/28/01 10:08:52 AM Central Daylight Time,

cindysue@... writes:

> 's beanie babies are lined up having lunch right now. They were in

> circle time. PE should be next, oops, said recess (play) is next.

> He pretends he is Ms Margarucci and they are the students. He will mimic

> his daily schedule at school. Took me awhile to catch on. He can say

> Margarucci (just Margarucci...no Ms or Miss) but not " no " . Go figure!

>

>

LOL Sara has tons of dolls and she imitates school too with them one day I

asked her what the kids were doing and she said " Time Out Mommmmmmm " I left

laughing

Kathy mom to Sara 9

[Guest guest]

In a message dated 7/28/01 10:08:52 AM Central Daylight Time,

cindysue@... writes:

> 's beanie babies are lined up having lunch right now. They were in

> circle time. PE should be next, oops, said recess (play) is next.

> He pretends he is Ms Margarucci and they are the students. He will mimic

> his daily schedule at school. Took me awhile to catch on. He can say

> Margarucci (just Margarucci...no Ms or Miss) but not " no " . Go figure!

>

>

LOL Sara has tons of dolls and she imitates school too with them one day I

asked her what the kids were doing and she said " Time Out Mommmmmmm " I left

laughing

Kathy mom to Sara 9

[Guest guest]

<<So what have you heard about Synthroid?? takes is everyday.

Green

mom to 18/ds>>

So does Ted. Since 1 week old. I think that because it is one ot the

" older "

drugs that it has to be approved or re-approved. something about a grand

father clause. I also did not catch all of the news. anyone else hear

anything?

I guess I should call the ped.

Gail