Introduction

[Guest guest]

Hi Audrey there is a cookbook with 500 recipes in the shared files of

this list you go to www.onelist.com and click on this list it is the

sixth file down also there are several websites listed in the

bookmark section also and alot of them have recipes also. any

questions you have please dont hesitte to ask SUE:)

--- Holien wrote:

> Hi everyone, my name is Audrey. I had been on the

> Protein Power diet for 5 weeks, lost 23 lbs. OF FAT.

> Yes!

>

> Staying on a protein based diet is a challenge. but

> it works. I have another 20 to go.

>

> Summer is a great time to BBQ so it's steak tonight.

>

> Any recipes and success stories would be appreciated

>

[Guest guest]

Hi Audrey,

Welcome to the list. You'll find lots of great people

here!

Jada

--- Holien wrote:

> Hi everyone, my name is Audrey. I had been on the

> Protein Power diet for 5 weeks, lost 23 lbs. OF FAT.

> Yes!

>

> Staying on a protein based diet is a challenge. but

> it works. I have another 20 to go.

>

> Summer is a great time to BBQ so it's steak tonight.

>

> Any recipes and success stories would be appreciated

>

[Guest guest]

Redhen and others,

Speaking for myself, Redhen, I certainly imagine you're among friends here.

Ever heard anyone who went into remission successfully with alternative methods?

Petrie

petri001@...

Department of English & Center for Advanced

Feminist Studies

University of Minnesota

[Guest guest]

Hi here is the other url.

[Guest guest]

Joy,

You will be running after Rose before you know it. How wonderful, first steps

are excieting

Sara

Re: Introduction

From: joybelle15@... (Joy Shipley)

<<< I am in a hurry to see Dr. P, maybe we can un-do the damage, God I

hope so. >>>

Welcome, ee and ! I also don't know how successful Ponseti's

method would be starting at 21 months, but I sure would give it a try if

you can! My daughter Rose started treatment with Dr. Ponseti when she

was six months old, and we have been very impressed with the results.

Rose is now 1 year old as of last week, and she has been taking one to

two steps on her own the last couple of days! I hope things work

out for ! I also checked out your pics, and he is so adorable!

<<< Joy, I read you all farm! What to you grow? I grew up on

family farms and worked my way through college and early adulthood

milking cows on dairy farms. We live now on 7 acres, we just moved

here, it's all still baren, no garden, no barn, no animals yet but my

dogs, but I hope for small livestock to move in this summer. >>>

ee, yes, we do farm! My husband and his brother do the work now

that I get to stay at home with Rose! Rose and I go visit every once in

awhile. I really miss going out everyday, but I just get in the way

when I'm out there because they have such a good system going! My

husband Neil milks about 45 cows right now, and his dad has about 20

beef that Neil has to take care of. Neil hates the beef because he has

to do so much fencework with them!

I read that you live in Oklahoma! Do you live anywhere near Tulsa or

Catoosa? We go down there in December to get pecans from a friend that

Neil has and to visit my aunt and some other friends. Neil went to

Spartan for a year and a half.

Well, I hope all works out well for you and ! Welcome to the list!

JOy

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

---------------------------

[Guest guest]

>

>

> Hi, my name is Jim and my wife Carmen has Graves. I am

British,

> she is Spanish and we live in Utrecht, Holland. Carmen is not as

> internet-oriented as me, which is why I've joined this list instead

of

> her. However, I think she may be tempted when she sees the great

> information and support available here.

>

Hi Jim,

Welcome to the list. This is a warm and caring group of Gravesians,

and if you dig through the archives I'm sure you'll find lots of

uselful information and experiences shared by all of us. Carmen will

feel comfortable here, among many folks who have " been there done

that " .

But, in addition to ask her considering joining the group, please

tell her to feel free to email me (j_alicia36@...). I'm also

Spanish. I'm a Gravesian, I did have RAI to my eternal regret!!! as I

use to add, since it also contributed to the development of my eye

disease.

Yes, having RAI (radioactive iodine, I-131) is a doodle, as simple as

swallowing a pill. But it is radioactivity ... and for many of us

serious problems really start after having it. That's why I often

feel very upset with many docs who are so speedic in prescribing it.

Plus they provide us with no information, or very little information,

in most cases because they simply ignore it. I really hope that in a

next future I-131 will be sent to the museum or radioactive quack

cures, where -in my opinion- it belongs.

Well, now it's a done deed, so let's stick to the eyes problem.

One of the most important things for Carmen is to have her thyroid

hormone levels properly regulated, avoiding *in special swinging from

hyper to hypo, or being hypo. This seems to worsen eye problems too.

So, a good endo to closely follow up her process and her readings,

and a fine tune of levothyroxine prescription.

If you go to message 299, you can find several suggestions to help

Graves' eyes. Surgery is not always necessary, as ophthalmopathy

often burns itself out in a period going from some months up to over

two years. Anyway, it should be convenient to have her eyes examined

by an ophthalmologist who is specialized in Graves' eye disease,

because the appeareance of eyes is not always (or necessarily) an

indication for surgery. For instance, my eyes looked almost normal -

no bulging, no lid retraction, etc.- but a cat scan showed how the

orbital tissues and muscles was threatening the optic nerve, and I

had to undertake decompression surgery. Reading your description,

Carmen's eye problem seemed very mild to me, but I would suggest her

to have an ophtahmologist opinion, and afterwords, quietly read and

read and read as much information as she can gather so that any

future decission (in case there is any), is as informed as possible.

We are lucky we have the internet, with tons of valuable data, and

places like this one to stay in touch with others suffering similar

problems.

Good luck!.

A.

[Guest guest]

Hi, !

Welcome! If you've been on for a week or so, then you've seen my recent posts

and know a bit about Aubrie's history. I won't repeat that again, but I do want

to welcome you! r sounds wonderful! Aubrie had her Gtube removed at about

1.5 yrs as well. Does r hear ok? It's fabulous that he's talking a bit

already!

Michele W

Aubrie's mom

[Guest guest]

,

Welcome to the list - that's great news about r taking everything by

mouth, we are still hoping after 5 years but I know she will do it

eventually. He sounds like he is doing wonderful all the way around despite

the rough start...

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

introduction

Hi, I am a new member and would like to introduce myself. My name is

and my son r (16 mo.) has been diagnosed with Charge and

EEC syndromes. He was born with Choantal Atresia, Coloboma and

Hydronephrosis. He had severe Reflux and had the Fundoplication surgery

and G-tube placed. r has had around 15 surgery's so far and 2 more

coming up. He is taking everything by mouth and hopefully soon he will

be able to get rid of the G-tube.

We also have a daughter, Raelynn 4 yrs and has been wonderful with r

and for him too! he has come such a long way, he is close to walking ( he

has taken up to 8 steps by himself) and saying dada and mama! Our family

has been wonderful in supporting us and r!

I have been getting the e mails for a week or so and this site has helped

so much

reading about all of your stories and advice. I have just now really

started researching

and trying/needing the support!

[Guest guest]

Hi Whitney,s mum,

was about 2 or 3 weeks old when first seen by ophthalmologist. That

led to the colobomas being identified. She was subsequently seen at 8 weeks

old, still while in NICU. We actually had to insist on the test this time,

but the medics gave in without too much of a battle. After this, once the

life-threatening stuff was out of the way, she was followed up regularly.

Now at age 3, she is seen every 6 months to monitor her retina.

Hop this helps.

Flo

_________________________________________________________________

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[Guest guest]

Whitney's MOM -

My Sara's situation was the same. The diagnosis was not yet completed

so they wanted the ophthalmologist to check for colobomas. She was just

a few days old, but I forget exactly when (I think it was 5 days).

Debbie

From the keyboard of Meloni :

> Madison was only about 3 or 4 days old when the opthamologist came to see her

in the NICU. They were still trying to diagnose her and they wanted to find out

if colobomas were present due to the size and shape of her pupils. The same

opthamologist has been following her ever since.

>

> wellsjdan@... wrote:Meloni and Jodi, Thank you so much for the eye info.

Whitney is 5 weeks old

> and still in the NICU working on feedings. The eye Dr. in the hospital said

> that she wouldn't start eye exams until 3 months old. I would like to know

> much sooner about her vision issues. How old where your CHARGEr kids when

they

> were seen by an ophthalmologist? Thanks, Whitney's MOM

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

[Guest guest]

I was 47!

Kay

introduction

>

>

> > Hi, I am a new member and would like to introduce myself. My name is

> > and my son r (16 mo.) has been diagnosed with Charge and

> > EEC syndromes. He was born with Choantal Atresia, Coloboma and

> > Hydronephrosis. He had severe Reflux and had the Fundoplication surgery

> > and G-tube placed. r has had around 15 surgery's so far and 2 more

> > coming up. He is taking everything by mouth and hopefully soon he will

> > be able to get rid of the G-tube.

> >

> > We also have a daughter, Raelynn 4 yrs and has been wonderful with r

> > and for him too! he has come such a long way, he is close to walking (

he

> > has taken up to 8 steps by himself) and saying dada and mama! Our

family

> > has been wonderful in supporting us and r!

> >

> > I have been getting the e mails for a week or so and this site has

helped

> so much

> > reading about all of your stories and advice. I have just now really

> started researching

> > and trying/needing the support!

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi, welcome to the group, its good that people with CHARGE are finding this

list and coming i have charge also, i dont have lots of time to right atm

i really need to get off my bum and get ready for uni, i have vision and

hearing impairment and choanal treasia and growth problems, it would be cool

to chat with u some time im from Australai btw, oh and im 20 hehe sorrry

this message is all over the place

Belinda

MSN: belinda_83au

YAHOO:belinda_83au

EMAIL: Belinda_83au@... OR belinda83@...

Introduction

> Hello,

>

> I just wanted to quickly introduce myself. I have been on this list for

the past week and have been really interested in the posts. My name is

. I am 24 years old and have Charge. I was born with the cleft

palate, coloboma of the iris, congenital cataracts, hearing impairment, and

the lobe missing from my left ear. I had of course many surgeries when I was

a kid. I am now considering having reconstructive surgery done on my left

ear, but I am still looking at my options. I have not let my condition stop

me from doing anything in my life. I use a guide dog to travel independently

and I use many adaptive aids to help me with every day tasks. I am currently

in my second year of a Bachelors program. It took me six years after high

school to figure out what I wanted to do!! LOL But now I am well on my way

to being an adaptive technology specialist. I hope that I can contribute to

this list with my own personal experiences with having Charge. Please don't

hesitate to contact me off list if you have any questions.

>

> and Guide Dog Velda

> christine-ann@...

> MSN kuwii@...

>

>

[Guest guest]

Sharon, it was late in 2004 or early in 2005 that I

had an MRI on my head. I had another MRI later

because I had injured my shoulder from a fall. I have

not had an MRI since.

I may have forgot to write about my disability claim.

I went before the Administrative Law Judge yesterday

morning. The judge determined that I was indeed

disabled. In a way, it's a good thing because I'm

elgible for SSI as well as SSDI. So, I will have

Medicaid and Medicare. A lot of doctors don't take

Medicaid, but will take Medicare. Lately, though,

I've been hearing that some doctors are also closing

their doors to Medicare patients.

Funny, when I was in elementary school, I don't

remember the grade; there were three Donnas in class,

including me. At the time, I had a different last

name beginning with " K " . In order to distinguish us

apart, the teacher would call us by our first name and

the first letter of our last name. But one of the

other Donnas had the middle name of " Kay " . Can you

imagine the confusion?

Donna in WA

--- Sharon Marsden wrote:

> Yes, we have three lovely Donnas on the group now!

>

> You gave some good information, Donna. It's not

> unusual for someone with MS to also have another

> autoimmune disease. You said you had a CT scan but

> have you had a MRI? You must have by now and I'm

> just not remembering.

>

> hugs))

> Sharon

>

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[Guest guest]

This is true, but the origin of the word, and of the

sobriquet " Don, " for men originates from the latin verb

meaning to " donate, " or to give gifts, probably as these

titles were first used for nobility, who, of course, were

wealthy! It is nice to think of one's self as having been

named not only as a " lady, " but as a befeficent one as well.

O.K., not my fault that I am half Italian (mother and her

family), but that I studied both Greek and Latin in high

school. My father promised me that if I did that AND

studied typing, he would pay for my car. To my great

surprise, he proved himself (Spanish) to be a " donor, "

and did GIVE me a car, a 1940 Ford 4-door sedan!

Love to you, Donna, and welcome to " Our Gang! "

n Rojas

>

> Hi Donna,

>

> You have a nice name. Did you know that it is Italian

> and means " Lady " ? Anyway, welcome to the group, there

> are a lot of helpful people here. I do not have a

> diagnosis of MS as yet. The CT scan I had a couple

> weeks ago came back normal. Since I've been a member

> of this group, however, I have been given a diagnosis

> of Grave's Disease, which is an autoimmune hyperactive

> thyroid disease. It can explain some of my symptoms,

> but not all. We're still trying to get things figured

> out.

>

> How is your cognitive functioning? I can suggest a

> web site that I think is pretty good for researching

> symptoms. Here's the link:

>

> http://wrongdiagnosis.com/

>

> I hope you can find it useful. MS is not easy to

> diagnose. There are many conditions that have similar

> symptoms, even the same symptoms. That's what makes

> it so hard to get a diagnosis. Even if you have a

> normal CT scan or MRI, doesn't mean you don't have MS.

> I used to have a doctor who said that. Also the

> people at the MS Society told me pretty much the same

> thing.

>

> I want to wish you the best. Learn as much as you

> can.

>

> Donna in WA

>

>

>

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>

>

>

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