Our Introduction

[Guest guest]

Welcome

You will find a lot of info here.....

as well as a great bunch of gals

Love em all !!

Again welcome & enjoy

Amber : )

[Guest guest]

Hi ,

Glad to have you on the list. I have boy/girl twins - DS and

Abigail - who will be three the beginning of October. I'm glad your on the

list, I enjoy it so much! Welcome!

Kim mom to Abbi and Ds - almost 2 1/2 and Mikayla - 4yrs

Our Introduction

> Hello, my name is , my husband is Tim and we are parents to

> twins Ann(Ds) and Kate. They will be three in August. I was made

> aware of the list through friends at the Multiples and Down

> Syndrome club and Relfections of Angels club. I am looking forward

> to meeting the families here, and hope to chat with you soon )

>

> Warm regards,

> B. (Mom to twins Ann(Ds) and Kate)

>

> PS Hope this posts...as I have been having difficulty getting my

> initial messages to do so!

>

>

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>

>

[Guest guest]

Welcome , Tim, Ann and Kate,

I am Bonnie and I have twin boys and (ds). They are

29 months old and have a sister who will be 10 in May. We live on Long

Island and attends the Association for Children with DS(ACDS). It

is a wonderful school and he is doing quite well there.

Hope to see you posting in full force soon.

Bonnie and DeVito

Parents to -9, twins and (ds)-29 mths

[Guest guest]

Hi ! So glad you decided to join us over here

too! Look forward to seeing more posts here about Ann

& Kate.

Judi-Mom to Sam & , 3, Identical Twins

--- Baxter <jetta115@...> wrote:

> Hello, my name is , my husband is Tim and we

> are parents to

> twins Ann(Ds) and Kate. They will be three in

> August. I was made

> aware of the list through friends at the

> Multiples and Down

> Syndrome club and Relfections of Angels club. I am

> looking forward

> to meeting the families here, and hope to chat with

> you soon )

>

> Warm regards,

> B. (Mom to twins Ann(Ds) and Kate)

>

> PS Hope this posts...as I have been having

> difficulty getting my

> initial messages to do so!

>

>

__________________________________________________

[Guest guest]

Welcome ,

My name is Pam and I am a single Mom to Hannah and . They will be 5 in June and are identical twins. They both have DS. I also have 2 boys age 18 and 13. (Josh and Dusty). You will love this list and see that it is insightful and supportive. I hope you enjoy it as much as I have. Welcome again and have a great day!

Baxter <jetta115@...> wrote:

Hello, my name is , my husband is Tim and we are parents to twins Ann(Ds) and Kate. They will be three in August. I was made aware of the list through friends at the Multiples and Down Syndrome club and Relfections of Angels club. I am looking forward to meeting the families here, and hope to chat with you soon )Warm regards, B. (Mom to twins Ann(Ds) and Kate)PS Hope this posts...as I have been having difficulty getting my initial messages to do so! ------------------------------------------------------------------------Get a NextCard Visa, in 30 seconds! 1. Fill in the brief application2. Receive approval decision within 30 seconds3. Get rates as low as 2.9% Intro or 9.9% Fixed APRApply NOW!1/2646/1/_/598201/_/954517460/------------------------------------------------------------------------http://DSyndrome.com/Multiples

[Guest guest]

Hi ,

Welcome !! Glad you made it here too!!

Isn't it the coolest? All of this mail in your inbox.I

can't wait to hear more stories about Ann and Kate.

mom to Landon (Ds) and Ashton 21 months

--- Baxter <jetta115@...> wrote:

> Hello, my name is , my husband is Tim and we

> are parents to

> twins Ann(Ds) and Kate. They will be three in

> August. I was made

> aware of the list through friends at the

> Multiples and Down

> Syndrome club and Relfections of Angels club. I am

> looking forward

> to meeting the families here, and hope to chat with

> you soon )

>

> Warm regards,

> B. (Mom to twins Ann(Ds) and Kate)

>

> PS Hope this posts...as I have been having

> difficulty getting my

> initial messages to do so!

>

>

__________________________________________________

[Guest guest]

Baxter wrote:

>

> Hello, my name is , my husband is Tim and we are parents to

> twins Ann(Ds) and Kate. They will be three in August. I was made

> aware of the list through friends at the Multiples and Down

> Syndrome club and Relfections of Angels club. I am looking forward

> to meeting the families here, and hope to chat with you soon )

>

> Warm regards,

> B. (Mom to twins Ann(Ds) and Kate)

>

> PS Hope this posts...as I have been having difficulty getting my

> initial messages to do so!

>

Welcome Michele and Tim! I'm Gail from New Jersey. Mother to 4

children.Bobby is 6, Jillian is 3 1/2, and Tara{ds} just turned 1

last week! I know you will enjoy this list! I have come to lean on these

Mom's{sorry Tim}over the past year, and you know how rough the first

year can be! Looking forward to hearing more about your family!

Gail

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

> Get a NextCard Visa, in 30 seconds!

> 1. Fill in the brief application

> 2. Receive approval decision within 30 seconds

> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

> Apply NOW!

> 1/2646/1/_/598201/_/954517460/

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

>

> http://DSyndrome.com/Multiples

[Guest guest]

Hi , welcome to the list. We're a good group, very active....I hope

you like it as much as I do. I'm mom of n and Danny (Ds) age 7,

my husband

, completes the picture. We live in Hanover, Massachusetts.

The boys are in kindergarten, Danny in a different town, in a resource room

setting. He does great and is happy and learning.

He has a best friend in his class, , six months older and has Ds too.

Jean

Mom of n and Danny

>Hello, my name is , my husband is Tim and we are parents to

>twins Ann(Ds) and Kate. They will be three in August

[Guest guest]

Welcome ! I'm (1) for distinction lol. I have twins Rudy

(ds) & who are 13. We live in Amarillo TX I'm parent to one of

the older sets in the group. Rudy is in 6th grade in a self contained living

skills class. Glad you could join us. It is a fantastic group!!! Bunch of

wonderful caring people here.

1

[Guest guest]

Welcome ,

My name is and I belong to the club too.

I have 22 month (23 months on the 6th) boy/girl twins. (DS) and

Sloan Isis.

You will enjoy this list as much as the club.

I feel like everyone is an extended family member.

I look forward to hearing more about you and your family.

~

[Guest guest]

-

Welcome-Sorry this e-mail is coming two weeks later--I have not been able to

get online for two weeks-things have been so busy!

Fran

[Guest guest]

Bonnie-

Where in LI do you live? I am in White Plains (Westchester County)

I have a 7 year old son () and twin girls ( and Alyssa(DS)) who

are almost 14 months old.

Since I went to college at St. 's we have friends all over the

island-when we are out there one day--perhaps we may be able to meet.

Fran and Gerard

[Guest guest]

gcigna@... wrote:

>

> Bonnie-

> Where in LI do you live? I am in White Plains (Westchester County)

>

> I have a 7 year old son () and twin girls ( and Alyssa(DS)) who

> are almost 14 months old.

>

> Since I went to college at St. 's we have friends all over the

> island-when we are out there one day--perhaps we may be able to meet.

>

> Fran and Gerard

> Hi Fran{and everyone too!}

I don't remember introducing myself to you?? I'm Gail and have boy/girl

twins, and Tara{ds} who just turned 1 in March. Also have Bobby who

is 6, and Jillian who is 3 1/2. We live in northern New Jersey, Vernon

to be exact. Is the Palisades mall anywhere near you? I've been there

once last year on a field trip with my oldest sons school. Are we close

enough to meet??? Esp with our twins only being months apart, I'm deing

to physically meet someone like us!!!

Gail

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

> 1.6 Million Digital Images!

> Download one Today from Corbis.com

> 1/3356/1/_/598201/_/955597838/

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

>

> http://DSyndrome.com/Multiples

[Guest guest]

Hi Fran,

My parents live in Briarcliff Manor, do you live near them?

Re: Our Introduction

gcigna@... wrote:

>

> Bonnie-

> Where in LI do you live? I am in White Plains (Westchester County)

>

> I have a 7 year old son () and twin girls ( and Alyssa(DS))

who

> are almost 14 months old.

>

> Since I went to college at St. 's we have friends all over the

> island-when we are out there one day--perhaps we may be able to meet.

>

> Fran and Gerard

> Hi Fran{and everyone too!}

I don't remember introducing myself to you?? I'm Gail and have boy/girl

twins, and Tara{ds} who just turned 1 in March. Also have Bobby who

is 6, and Jillian who is 3 1/2. We live in northern New Jersey, Vernon

to be exact. Is the Palisades mall anywhere near you? I've been there

once last year on a field trip with my oldest sons school. Are we close

enough to meet??? Esp with our twins only being months apart, I'm deing

to physically meet someone like us!!!

Gail

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

> 1.6 Million Digital Images!

> Download one Today from Corbis.com

> 1/3356/1/_/598201/_/955597838/

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

>

> http://DSyndrome.com/Multiples

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[Guest guest]

Hi there to everyone. I tried this the other day, but my post never

made it through. I will try again!

My name is and I am married to Joe. We have 3 kids-- age

9, Age 7 ,and Age 5.

I have just been told that may have . I look foward to

learning from all of your experiences and hearing your word of wisdom.

I am still in denial about Nicky having --tho my hubby says the

more he researches , the more he believes it. I think the diagnosis

was too quick and the tests weren't thorough enough--not that I want

to subject the poor kid to more tests--lol!

Not only did a Rheumatologist declare that he has ,she suggested

I research it online to better understand it. When I did that, I then

called her to question the diagnosis. She wasn't happy about that. I

also questioned my pediatrician about it and he asked me if I was

told about Atypical . ( I wasn't)

So ,basically they are saying that not only does he have some

obscure, relatively new condition--but he just so happens to have an

Atypical case of it!

Nicky is the healthiest sick kid I know. His visits to the

pediatrician have been minimal. A case of the flu once or twice, some

bronchitis. That's it. No strep ( until this year) , no stomach bugs

( until this year) , no ear infections--nothing.

I used to marvel at how healthy he and his sister were--despite the

fact that their older brother brought everything home from school--

strep, stomach bugs, fifths disease, etc...........

This year that all changed. Unlike many of you, Nicky just begun

having his fevers this school year ( age 6 & 1/2 +). His fevers were

always low grade--(101.7 - until the last 2x) and they last an

average of 24-36 hours. The longest his cycle ever was --3 weeks. The

shortest--15 days. His cycle is usually 17-18 days. So you can see

why I don't agree with and why the docs say he has an Atypical

case of it.

I have a follow up with the Rheumatologist in July ( a different one)

and so far no drugs were prescribed. I am eliminating prednisone as a

choice given that his fevers are already 2 & 1/2 weeks apart and the

docs claim prdnisone would take him down to 7-10 days apart ( no way--

not with him in school!) and he would have complete resolution of sym-

ptoms in 24-36 hours--which , for Nicky, does not help at all-- he

already feels well enough by 24-36 hours to spend all evening outside

playing tag or play in his baseball games as we have discovered--

despite still having a low-grade fever! So prednisone may just make

things worse for us.

Thank you for letting me get it all off my chest and for reading this.

[Guest guest]

I also live in the Valley. My daughter went through the same tests

beginning at around 8 months. It took three months + for me to

realize that there was something strange going on. I was lucky to

have a pediatrician who listended to my mommy intuition. But it still

took almost a year to get a diagnosis. The worst part was all the

blood draws and tests requiring an empty tummy for a baby. Did I

mention that I was pregnant with baby #3 at the time.

Have you asked your Pediatrician to research ? Shortly after my

daughter was finally diagnosed, we moved to Chicago. This was in

2000. was still " rare " . Our new pediatrician knew nothing

about it and if I hadn't pushed, probably wouldnt't have looked further.

Now that we are in the Valley of the Sun, I need to find an ID doc who

knows the latest info and treatments. It sounds like you might need

to find the same. When I locate one, I'll pass the info along.

Hold strong in the faith. Remember that you can do all things...

AP

>

> Hello Everyone...

>

> My name is Jesica and my husband and I have 2 children.

>

> The main reason I'm signing into this group is because we're right

in the

> middle of trying to figure out what's going on with our little

girl, who is 2

> 1/2.

>

> I have a history of having high fevers myself, and still get one

when I'm

> really sick.

>

> My son is 4 1/2 and has had many during his lifetime.

>

> However, our daughter is in a cycle of getting them about every 24

days or

> so..at best, it's every month.

>

> They usually come on with no other visible symptoms, although the

first few

> months she got one, I didn't take her to the Dr. because I thought

it was

> from teething, and also because I didn't want to just stick her on

an antibiotic.

>

> Well..now we're into about month 6 or so, and last night she came

down with

> another one.

>

> Over the past month, she has been blood tested for Leukemia, Kawasaki

> Disease, and other things.

>

> The Dr. lost her first urine sample, so it was just yesterday that

he called

> to say that the 2nd one had grown bacteria, and that she has a UTI.

>

> So..he put her on Bactrum, UGH!

>

> Well, AFTER his call....last night, she woke with 104 degree fever.

>

> So..this time I took her in right away, and the Dr. says her throat

is red.

>

> Tonsils??? I don't know.

>

> Truly, I am stumped..is this , or is it Kidney Reflux?

Candida? I don't

> know!

>

> I've had kidney problems in my lifetime...so that's something that

I want to

> be sure to rule out.

>

> I am so exhausted with seeing her sick...she comes in and her

little cheeks

> are so red that I think they're going to bleed, and we could fry

eggs on her

> little back because it's so hot.

>

> When our son was 20 months old, he had one of these mystery fevers

too, and

> ended up going into a seizure in the Drs. office, while we waited

FOREVER to

> be seen...it was a really BAD one...he seized for about 20 minutes,

and then

> was almost comatose for an hour and a half afterward.

>

> He had to be taken by ambulance to the hospital. It was horrible. I

just

> knew that God was taking him home...thank The LORD I was wrong!

>

> No one ever told me that being a parent would rip my heart out....

>

> Thanks for letting me join...I really welcome any suggestions that

any of

> you would like to share.

>

> We live in the Phoenix, AZ area.

>

> Surviving on Grace...

> Jesica

>

>

>

[Guest guest]

Hi ,

Welcome - I've just joined recently as well. We still don't have a

dignosis for my three year old, Aidan. I hear you about the high

fevers - and the red cheeks - I hate the way it almost hurts me to

touch him back because it is so hot - I can't even imagine how it

must feel to him.

If you haven't started docutmenting yet - start recording fevers and

symptoms. There are a lot of people on this board which is a

blessing seeing as how I have never met anyone else with a child

with these problems. I just know that my Ped. said it was normal -

but all of my friends would say, " He's sick AGAIN? " because their

children are never sick like this - and Aidan's older brother was

never sick like this.

So join in and good luck and prayers for you and everyone else.

Hannah

> >

> > Hello Everyone...

> >

> > My name is Jesica and my husband and I have 2 children.

> >

> > The main reason I'm signing into this group is because we're

right

> in the

> > middle of trying to figure out what's going on with our little

> girl, who is 2

> > 1/2.

> >

> > I have a history of having high fevers myself, and still get one

> when I'm

> > really sick.

> >

> > My son is 4 1/2 and has had many during his lifetime.

> >

> > However, our daughter is in a cycle of getting them about every

24

> days or

> > so..at best, it's every month.

> >

> > They usually come on with no other visible symptoms, although

the

> first few

> > months she got one, I didn't take her to the Dr. because I

thought

> it was

> > from teething, and also because I didn't want to just stick her

on

> an antibiotic.

> >

> > Well..now we're into about month 6 or so, and last night she

came

> down with

> > another one.

> >

> > Over the past month, she has been blood tested for Leukemia,

Kawasaki

> > Disease, and other things.

> >

> > The Dr. lost her first urine sample, so it was just yesterday

that

> he called

> > to say that the 2nd one had grown bacteria, and that she has a

UTI.

> >

> > So..he put her on Bactrum, UGH!

> >

> > Well, AFTER his call....last night, she woke with 104 degree

fever.

> >

> > So..this time I took her in right away, and the Dr. says her

throat

> is red.

> >

> > Tonsils??? I don't know.

> >

> > Truly, I am stumped..is this , or is it Kidney Reflux?

> Candida? I don't

> > know!

> >

> > I've had kidney problems in my lifetime...so that's something

that

> I want to

> > be sure to rule out.

> >

> > I am so exhausted with seeing her sick...she comes in and her

> little cheeks

> > are so red that I think they're going to bleed, and we could fry

> eggs on her

> > little back because it's so hot.

> >

> > When our son was 20 months old, he had one of these mystery

fevers

> too, and

> > ended up going into a seizure in the Drs. office, while we

waited

> FOREVER to

> > be seen...it was a really BAD one...he seized for about 20

minutes,

> and then

> > was almost comatose for an hour and a half afterward.

> >

> > He had to be taken by ambulance to the hospital. It was

horrible. I

> just

> > knew that God was taking him home...thank The LORD I was wrong!

> >

> > No one ever told me that being a parent would rip my heart

out....

> >

> > Thanks for letting me join...I really welcome any suggestions

that

> any of

> > you would like to share.

> >

> > We live in the Phoenix, AZ area.

> >

> > Surviving on Grace...

> > Jesica

> >

> >

> >