Hi all.

[Guest guest]

Hi Noreen,

Welcome! I have Novemeber babies too, but born 11/2/99. has DS and her brother does not. I live in Spokane WA, so not close enough for a visit, but glad to have you here all the same. I look forward to hearing more about your girls.

Casey, mom to (DS) and , 20mo.

[Guest guest]

Hiya Noreen and welcome to the group! Sounds like your twins are doing

great! Good to have some more babies on the list! Which one of your twins

has DS (or both?)? We love to hear brags, see pictures, hear frustrations,

compare notes, etc.... so keep it all coming! We are pretty casual here.

I am the list owner, so any tech questions can be shot my way. I do not

have any kids yet... just my fiancè, Aref, who thinks he's one! ) We are

both students of the U at Buffalo in NY (he is PhD and I am pre-med). I

started getting interested in DS about 8 years ago (the story is in more

detail on my web site, if you are interested: http://DSyndrome.com).

Anyway, I don't live in TN, but one of my best friends lives in Nashville

and I am way over-due for a visit... so maybe! )

Again, welcome aboard!

Cheers!

Sara

--On Monday, July 30, 2001, 3:32 AM +0000 Noreen Kerner

<fourkidzmommy@...> wrote:

> I'm new here and thought I'd say hi. I have two beauties, and

> born 11/28/00 with DS. They also have two brothers, Nick 8,

> and Zack 5. We live in TN, in a little town outside Nashville. We

> moved here last July. Your site was recommended to me by Katy T.

> If anyone out there lives by me, I'd love to meet you.

> E-mail me. Thanks, Noreen

>

>

>

> http://DSyndrome.com/Multiples

>

>

[Guest guest]

Noreen,

Welcome to the group. Your girls sound great! They are so cute at that age.

Well, truthfully they are cute at every age. My name is Pam and I have twin

girls with DS. They are 6 and their names are Hannah and . We too live

in Tn. in Lawrenceburg. It's south of Nashville. This is great! Where do you

live? We go to Nashville a lot to Dr. visits and my B/F has relatives there.

I can't wait to see where you live. Maybe we can meet sometime. I would love

to see your girls. I haven't had the pleasure of meeting twins with DS other

than mine of course.

I look forward to hearing more about your family and welcome to the group.

There are some great people here.

Pam mom to Hannah and ID twins with DS, Josh 20, Dusty 15.

Hi all.

> I'm new here and thought I'd say hi. I have two beauties, and

> born 11/28/00 with DS. They also have two brothers, Nick 8,

> and Zack 5. We live in TN, in a little town outside Nashville. We

> moved here last July. Your site was recommended to me by Katy T.

> If anyone out there lives by me, I'd love to meet you.

> E-mail me. Thanks, Noreen

>

>

>

> http://DSyndrome.com/Multiples

>

>

[Guest guest]

Hi Noreen and welcome to the list. I'm , mom to

3 year old twins, Ashton and Landon. Landon has Down

syndrome. We are from South Carolina. You will find a

lot of information here as well as a bunch of great

parents. I look forward to hearing more about your

family.

<fourkidzmommy@...> wrote:

> I'm new here and thought I'd say hi. I have two

> beauties, and

> born 11/28/00 with DS. They also have two

> brothers, Nick 8,

> and Zack 5. We live in TN, in a little town outside

> Nashville. We

> moved here last July. Your site was recommended to

> me by Katy T.

> If anyone out there lives by me, I'd love to meet

> you.

> E-mail me. Thanks, Noreen

>

>

__________________________________________________

[Guest guest]

Hi Noreen - Glad you joined us! You know me from ROA

- I'm Judi, mom to identical twins Sam & .

I look forward to hearing more about & .

Hope you'll post pictures of your cuties too!! (Hint,

hint! - they're adorable!).

Judi

--- Noreen Kerner <fourkidzmommy@...> wrote:

> I'm new here and thought I'd say hi. I have two

> beauties, and

> born 11/28/00 with DS. They also have two

> brothers, Nick 8,

> and Zack 5. We live in TN, in a little town outside

> Nashville. We

> moved here last July. Your site was recommended to

> me by Katy T.

> If anyone out there lives by me, I'd love to meet

> you.

> E-mail me. Thanks, Noreen

>

>

__________________________________________________

[Guest guest]

Welcome Noreen. I have twin boys that are almost 18 months old. Davey has DS. I also have a 13 year old daughter and a 11 year old daughter. I am mostly a lurker, but this is a great group. We live near Reno, NV. Hi all. I'm new here and thought I'd say hi. I have two beauties, and born 11/28/00 with DS. They also have two brothers, Nick 8,and Zack 5. We live in TN, in a little town outside Nashville. Wemoved here last July. Your site was recommended to me by Katy T.If anyone out there lives by me, I'd love to meet you.E-mail me. Thanks, Noreen

[Guest guest]

Welcome Noreen,

Glad to see that you made it to the site, I have three kids

4yrs and twins and Tyler(DS) 20 months. The twins

were also born in NOV 11/11/99. I hope you enjoy meeting and talking

with every on the site. I see that you have already located someone

in TN that is not to far from where you live.

Katy Touve

> I'm new here and thought I'd say hi. I have two beauties,

and

> born 11/28/00 with DS. They also have two brothers, Nick 8,

> and Zack 5. We live in TN, in a little town outside Nashville. We

> moved here last July. Your site was recommended to me by Katy T.

> If anyone out there lives by me, I'd love to meet you.

> E-mail me. Thanks, Noreen

[Guest guest]

Hi Noreen,

I have four kids, Quinn is five, Sara and Maggie are 2 and Teddy is almost 9

months. Maggie has Ds and is healthy and goofy. Welcome to the list. It

is truly a great place to be. We live in Massachusetts.

Re: Hi all.

> Welcome Noreen,

> Glad to see that you made it to the site, I have three kids

> 4yrs and twins and Tyler(DS) 20 months. The twins

> were also born in NOV 11/11/99. I hope you enjoy meeting and talking

> with every on the site. I see that you have already located someone

> in TN that is not to far from where you live.

>

> Katy Touve

>

>

>

>

> > I'm new here and thought I'd say hi. I have two beauties,

> and

> > born 11/28/00 with DS. They also have two brothers, Nick 8,

> > and Zack 5. We live in TN, in a little town outside Nashville. We

> > moved here last July. Your site was recommended to me by Katy T.

> > If anyone out there lives by me, I'd love to meet you.

> > E-mail me. Thanks, Noreen

>

>

>

> http://DSyndrome.com/Multiples

>

>

[Guest guest]

Hello Noreen, and welcome!

I'm Gail, from New Jersey, I have 4 children, Bobby is 7 1/2, Jillian

turned 5 TODAY, and b/g twins, and Tara, 28 months. Tara was born

with Ds. Glad you found us, I'd be lost without this great group!

Gail

[Guest guest]

Hi Noreen and Welcome.

I have boy/girl twins Ds and Abigail. They will be 4 Oct. 6th. I also

have a 6 yr old - Mikayla. We live in Washington State. I usually lurk but

like to say hi to new people (when my computer isn't down!) This is a

wonderful place to learn and make new friends, I'm glad your here.

Kim mom to Abbi and Ds - 3 1/2 and Mikayla - 6

Hi all.

> I'm new here and thought I'd say hi. I have two beauties, and

> born 11/28/00 with DS. They also have two brothers, Nick 8,

> and Zack 5. We live in TN, in a little town outside Nashville. We

> moved here last July. Your site was recommended to me by Katy T.

> If anyone out there lives by me, I'd love to meet you.

> E-mail me. Thanks, Noreen

>

>

>

> http://DSyndrome.com/Multiples

>

>

[Guest guest]

----- , GREAT advice!! xo, d. ------

If you have fatique like you say, you should test for CFS and join the

buddies group on CFS. Also, check yourself for Mycoplasmal

infections/illnesses. also, work on your chakras: rik blocks, deformations,

correct speed and spin, and alignment. try, also, accessing ALL of your

chakras (144)...get them working correctly.

Love, Light, and Blessings!

Joe

Hi all.

Just to let you know that since I have been working on fixing the problems

with my brain stem. First I can now look to my side, either side without

turning

my head. Roll my eyes all around with no pain at all. Something else that I

had not expected now I have perfect balance, and that is like wow. Now if I

could figure out something to cure the fatigue factor I would be in great

shape.

Might even think about going back to work.

Blessed Be, Sheriden

____________________________________________________________

____________________________________________________________

Test:

- I'm installing all necessary immunological shields.

- I'm removing all destructive shields.

Do this now, and check again before bed, and again when you wake up.

More here:

http://www.immunics.org/colleague/apps/a04/0dna.htm

Love,

Keely Stahl

001(813) 672-0134 EST USA (-0500 UTC)

keely@...

Please forward these e-mails because they find their way into the right

hands -- you'll save somebody's life.

To join go to:

http://www.TheCureDrive.org

Sweep disease off the earth

Listen to

http://www.TheCureShow.org

Hear immunics working

A Not For Profit Yoga Of Immunity

http://www.immunics.org

Immunics taught imperfectly still cures people. Don't explain it - just

give it. Show anybody you can how to do this as best you can, and as soon

as possible.

[Guest guest]

Also check for Lyme disease

-- Re: Hi all.

----- , GREAT advice!! xo, d. ------

If you have fatique like you say, you should test for CFS and join the

buddies group on CFS. Also, check yourself for Mycoplasmal

infections/illnesses. also, work on your chakras: rik blocks, deformations,

correct speed and spin, and alignment. try, also, accessing ALL of your

chakras (144)...get them working correctly.

Love, Light, and Blessings!

Joe

Hi all.

Just to let you know that since I have been working on fixing the problems

with my brain stem. First I can now look to my side, either side without

turning

my head. Roll my eyes all around with no pain at all. Something else that I

had not expected now I have perfect balance, and that is like wow. Now if I

could figure out something to cure the fatigue factor I would be in great

shape.

Might even think about going back to work.

Blessed Be, Sheriden

____________________________________________________________

____________________________________________________________

Test:

- I'm installing all necessary immunological shields.

- I'm removing all destructive shields.

Do this now, and check again before bed, and again when you wake up.

More here:

http://www.immunics.org/colleague/apps/a04/0dna.htm

Love,

Keely Stahl

001(813) 672-0134 EST USA (-0500 UTC)

keely@...

Please forward these e-mails because they find their way into the right

hands -- you'll save somebody's life.

To join go to:

http://www.TheCureDrive.org

Sweep disease off the earth

Listen to

http://www.TheCureShow.org

Hear immunics working

A Not For Profit Yoga Of Immunity

http://www.immunics.org

Immunics taught imperfectly still cures people. Don't explain it - just

give it. Show anybody you can how to do this as best you can, and as soon

as possible.

[Guest guest]

Hi,

I too have been having joint pain. Hip, fingers and no answers as to

why. I am due for another bone scan, my last was about 9 years ago...I

tend to put things off so it might be awhile before I go.

Is joint pain a part of Autoimmune liver disease??

Joan Claffey

[Guest guest]

I don't understand -- what is your diagnosis? Is it AIH?

For AIH, there is plenty of treatment available. AIH isn't curable, but it is

controllable.

Why are your refusing pain control? Pain is harmful to your body. Even if you

can stand the pain, it's causing damage.

Many forms of pain control exist. Some do not involve medication. My daughter

was steadily increasing her use of heavy-duty prescribed medication. She went

through a pain management clinic at Kaiser, where she learned various

exercises and techniques that allowed her to significantly lower her use of the

medications.

I'm on the waiting list for a similar clinic, to help me manage pain from

post-herpetic neuralgia.

I hope you can find a way to lessen the pain, not just to put up with it.

Harper

In a message dated 5/21/08 11:09:08 AM, tkp53@... writes:

> I know there is no hope of cure or much treatment for

> me with the exception of pain control,which I have refused so far

>

**************

Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4 & amp;

?NCID=aolfod00030000000002)

[Guest guest]

>

> Hi,

>

> I too have been having joint pain. Hip, fingers and no answers as to

> why. I am due for another bone scan, my last was about 9 years

ago...I

> tend to put things off so it might be awhile before I go.

>

> Is joint pain a part of Autoimmune liver disease??

>

> Joan Claffey

>

Greetings and Blessing to All!

First let me say that altho I don't chat much,I come here each day: and

have so enjoyed all the stories of gardens and such. It's true we are

more than our health challenges! Personally, I have Cirrhosis, at what

is called stage 3. I had what was thought to be Fibromyalgia,so such

things as the tiredness and joint pain were expected. I was on Celebrex

for years till that came under question.I then went to over the counter

pain relievers that admittedly I over used. When last Nov. I went into

an ER with what I thought was bad flu, they discovered my Liver

problems. Atfirst, they assumed I was a drinker, ummm... no haven't had

a drop in over 30 years. Next it was Tylenol poisoning.. but that

wasn't supported by testing either, altho I am sure it didn't help. I

was taken off all meds and told to get my affairs in order. In other

words the medical community has written me off. So got busy doing some

research on my own. Turns out that in my case what probably led me down

this path was a Staph infection, from a Dr's opps.. that took over 4

years to cure. It seems that joint pain, weakness and tiredness can be

early symtoms of Liver disease. So friends watch out for infection of

any kind. My platelets and white cells are in the toilet, so I bruise

if I breath hard and I have learned a whole new meaning to

cleanliness LOL! I know there is no hope of cure or much treatment for

me with the exception of pain control,which I have refused so far. I

eat what i want, sleep when I can and when my DR asked if I feel I am

losing my mental abilities yet... I love answering .. " If I am..would I

know? " lol So that is my tale. I am okay all and all.. Have good

friends and family who do their best.

[Guest guest]

It is wonderful to hear from you Joan! I understand bone pain can be a part of

AIH, but since I am not a doctor, it could be that it was just me that had the

problem. However, since going on the Calcitriol, I do not have the bone pain

anymore!

Debby

[ ] Re: Hi all.

Hi,

I too have been having joint pain. Hip, fingers and no answers as to

why. I am due for another bone scan, my last was about 9 years ago...I

tend to put things off so it might be awhile before I go.

Is joint pain a part of Autoimmune liver disease??

Joan Claffey

[Guest guest]

-

tkp53 wrote: Atfirst, they assumed I was a drinker, ummm... no haven't

had a drop in over 30 years. ...................

My platelets and white cells are in the toilet, ..................

So that is my tale. I am okay all and all.. Have good

> friends and family who do their best.

First, thank you for sharing. You however did not say what the final

diagnosis was ( Non -alcoholic Fatty Liver Disease maybe??? ). And

you did not say if there aver was any discussion of liver transplant.

I would be interested in the rest of the story. I too have Fatty

Liver cirrhosis,NAFLD (doctor does not say what stage)with possible

PBC, and have been taking Urso with good results. My numbers are all

normal. But I feel tired, and have joint pain all over and sometimes

very seriouly (crippling degeneration after inflammation) in one

finger or another of wrist joint. So far it has not gotten into the

large joints too much. I was diagnosed with Osteoarthritis, and the

doctor does not recommend any decent medication. Extra strength

Tylenol. Does nothing!

So I guess we do what we can, but pain control is not far along in

the medical profession, they just do not have any that are not worse

for you than the pain.

Clara from OR, dx 97

[Guest guest]

Atfirst, they assumed I was a drinker, ummm... no

haven't

> had a drop in over 30 years. ...................

>

> My platelets and white cells are in the toilet, ..................

>

> So that is my tale. I am okay all and all.. Have good

> > friends and family who do their best.

>

> First, thank you for sharing. You however did not say what the final

> diagnosis was ( Non -alcoholic Fatty Liver Disease maybe??? ). And

> you did not say if there aver was any discussion of liver

transplant.

>

> I would be interested in the rest of the story. I too have Fatty

> Liver cirrhosis,NAFLD (doctor does not say what stage)with possible

> PBC, and have been taking Urso with good results. My numbers are

all

> normal. But I feel tired, and have joint pain all over and

sometimes

> very seriouly (crippling degeneration after inflammation) in one

> finger or another of wrist joint. So far it has not gotten into the

> large joints too much. I was diagnosed with Osteoarthritis, and the

> doctor does not recommend any decent medication. Extra strength

> Tylenol. Does nothing!

>

> So I guess we do what we can, but pain control is not far along in

> the medical profession, they just do not have any that are not

worse

> for you than the pain.

>

> Clara from OR, dx 97

>

Hello again!

The only diagnosis I have is end stage Liver disease/Cirrhosis. My

medical team is stumped to find any med/treatment, that would not

cause more damage than help. There has been some discussion of

transfusions to assist with the platelets and white cells. But since

I am such a bleeder, the risks are very high. I am told that I am not

a canadiate for organ/cell transplant. So I have drawn up a final

directive DNR/no heroic measures. I have so far refused pain

medication as my tolerance builds quickly and I would be without any

options in the end, when the pain will be at it's worse. I do use

meditation,feedback,distraction and even a good scream/cry when

needed. Also, I know that the toxins my liver can no longer deal with

will in time effect my mental status as well, so I want to have what

time remaining as active and clear headed as possible. I have done

the research, looked at the numbers and made peace with this part of

my life. I often hear that I should fight harder for the sake of

those who care for me, but I know they will miss me but would not

wish me 1 sec more pain than I should choose. Each person must make

those decisons according to their needs,and what may be my way

certainly is not meant for anyone else. On the lighter side! my pink

tea roses have budded and should open soon!

[Guest guest]

What kind of symptoms are you having?

On Mar 10, 2009, at 6:19 PM, " J. is Carril " <sunlend@...> wrote:

I decided to join this group b/c I was just diagnosed hypo and since taken

Levothyroxine, I have gotten a lot better in just two weeks but my psychological

symptoms persist, is this normal?

[Guest guest]

Hello,

I've been reading and keeping up with you all for the last two months. My son

Beaux is almost four months old, and I've been trying repositioning, to no

avail, for his brachy/plagio. We visited Cranial Tech in Dallas yesterday and

found everyone to be very helpful and friendly. My son was diagnosed as

moderate for brachy/plagio, has a slight right neck tilt, and mild facial and

ear assymetry.

I'm a little overwhelmed by everything, but I know by banding him I am doing the

best for him. My biggest concern is skin problems because he already has scalp

eczema....although it is mild.

My clinician thinks we can take care of this with one band, anywhere between 4 -

7 weeks (although I know that's just an estimate), and since he's so young, we

will be doing weekly adjustments.

I just wanted to formally introduce myself to the group. I know I'll need some

support throughout this process.

Thanks!

[Guest guest]

Hi ,

My daughter is graduating from her DOC Band next week and we also go weekly to

the CT in Dallas.

She had her first band at 4 months, but she was growing so fast by the time she

got the scan and then the band 7 days later- it just didn't fit her right due to

rapid growth. We tried to give her a couple weeks in it, but in the end, they

just made us another band. She finally got in the band she now wears at 5

months. They thought she would orginally wear the band 6 weeks, but since we

got pushed back a month they said 8-10 weeks. She'll graduate next week, making

the total time in the correct band 8 weeks- and she probably could use a couple

of more weeks, but she has already outgrown it!! With that said, I think you

will be amazed at how fast you get results!! So just be thankful for every

minute you get in the band.

Despite my daughter growing out of her band so fast, I am so glad we did this

and it was worth every stinking penny! She had brachy and it was severe and it

looks so much better now that they said they couldn't even say they would

recommend a second band! Yayayaya!

Also, don't be overwhelmed! I felt overwhelmed and stressed about it all, but

it isn't bad at all. My daughter has eczema and hasn't had any problems in the

band and she wore it while it was much hotter and she sweats a lot. I just

towel dried the band and her hair every hour or so for the first week. I was

shocked at how fast her body adjusted to the new tempertature. Now I just towel

dry her hair a coulpe of times a day! The first few nights were a little rough,

but by a week- she was a pro at sleeping, moving and anything else she wanted to

do in the band. I elevated her body using a blanket at first, but didn't

elevate her head. It helped it fall a little more natural because the band was

pushing her head down toward her chest.

Oh and the tilt- my daughter had a slight tilt and we did the stretches which

she hated but it didn't take long to correct itself. I found that if I

stretched her nick and gave her kisses on her neck while I did it, like I was

playing- it really helped and she didn't notice what I was doing or that it was

slightly uncomfortable!

Well, I hope everything goes perfect and this will probably seem like it never

happened by the New Year. I can't believe 8 weeks has already come and gone for

us... and I was soooo stressed... now I am all smiles!

www.leopardorpolkadots.blogspot.com

>

> Hello,

> I've been reading and keeping up with you all for the last two months. My

son Beaux is almost four months old, and I've been trying repositioning, to no

avail, for his brachy/plagio. We visited Cranial Tech in Dallas yesterday and

found everyone to be very helpful and friendly. My son was diagnosed as

moderate for brachy/plagio, has a slight right neck tilt, and mild facial and

ear assymetry.

>

> I'm a little overwhelmed by everything, but I know by banding him I am doing

the best for him. My biggest concern is skin problems because he already has

scalp eczema....although it is mild.

>

> My clinician thinks we can take care of this with one band, anywhere between 4

- 7 weeks (although I know that's just an estimate), and since he's so young, we

will be doing weekly adjustments.

>

> I just wanted to formally introduce myself to the group. I know I'll need

some support throughout this process.

>

> Thanks!

>

>