new member

[Guest guest]

Hello you can ask me any questions you like and I'll do my best to

answer them for you. I know somethings about thyroid cancer. I was

daignosed in 2000 and I've had a TT and a Right Radical Neck

Disection. and I've had RAI twice. So just w-mail me or talk to me

on yahoo messanger.

Theresa

[Guest guest]

Donna, Hi I too have/had papillary with a follicular variant.

I had a Total thyroidectomy with 21 lymph nodes Feb. 26, 2002,

RAI 200 mci May 1, 2002, thyrogen/RAI scan Feb 2003 negative but

Tg 8.0 and tsh .01 I had a recent PET SCAN that showed 3 possible tumors

recently and an MRI to follow. Results of the MRI this Friday. I'm a 41 yr

old female

from San Diego, CA. What confusing questions do you have? I too am here for

you.

Lee

Hi Donna...>

> I had pappilary with a follicular variant. I had just

> a partial thyroidectomy in Jan. and will have another

> surgery in June. I had it in 3, maybe 5 nodules and am

> 51 years old. I am not sure of all the questions you

> have and some may be better off than I at that. But, I

> do know some things and I sure know how I FEEL. If you

> need a shoulder ...I am here.

> Cappy

> --- donnapicciallo wrote:

> > Is there anyone out there who has been diagnosed

> > with papillary-

> > follicular variant? I am newly diagnosed and would

> > love to speak

> > with someone with a similar situation who can

> > perhaps answer some

> > confusing questions. Thank you in advance. Donna

> > Picciallo

> >

> >

>

[Guest guest]

> Sharon,

> This is the reminder you asked for when you go to the doc's in

July don't forget to ask about the birth control patch!! Please let

us all know what she says!

> Thanks,

> Nicci

> 380/317/280/170?

Nicci,

Great timing! I go on Saturday! I will post when I get home and

let you all know what she says, and what I decided to do...may

switch to something else rather than the Depo, working on being able

to go in and have them tie my tubes, I think we can schedule that

after I get rid of enough fat that it does not hang over

anymore...we shall see!

Sharon

243/226/220/140-160

[Guest guest]

Sharon,

This is the reminder you asked for when you go to the doc's in July don't forget

to ask about the birth control patch!! Please let us all know what she says!

Thanks,

Nicci

380/317/280/170?

Re: New member

Nicci,

Will do! Now, you have to please help me remember to bring it up

with her, I have to go for my Pap in early July...when I mention

that its time, remind me to ask her about that, because I have given

some serious thought to switching! When I lose enough weight, I

want to go have my tubes tied. Hell, I want them to cut them out, I

don't need them, haha, but they won't humor me, lmao!

Sharon

[Guest guest]

Dear in CO,

Hi! Welcome to the group. I am so impressed by how much you've already lost.

That's awesome! This group is a great support and will be with you all the way

to goal. I've lost 35 lbs since March but still have a big 80 more to go.

ugh! :-)

Hope to get to know you better.

Peace,

Jen N. TX

255/220/140

There are only two ways to live your life. One is as though nothing is a

miracle. The other is though everything is a miracle.

--Albert Einstein

[Guest guest]

Hi ,

Good to have you with us, you will find all the help, support and

encouragement you'll ever need here and then some, trust me !!! I'm and I

seem to

be the resident asker of stupid questions :-)

Look forward to hearing more from you

[Guest guest]

>>>>Hi! My name is and I have been doing the weight watcher

program and I go to TOPS on Mondays, but I can ALWAYS use more

motivation...it's ALWAYS so easy to gain back what I've lost! I

have lost 55 in the last year and still have 45 more that I want to

lose...I'm looking for friends, motivation, and support! I'll try

and offer the same! It's good to be here!

-Colorado

sounds like you're doing great! Marge from Brooklyn, 39 lives w/ BF Rob and cat

Chloe

[Guest guest]

Hi ,

If you are looking for support and motivation, trust me you are in

the right place! This group has become a second family to me in the

last two months or so, and I wouldn't have it any other way!

Congrats on your losses so far, and keep up the good work! Please

let us know how we can help you!

Sharon

243/225/220/140-160

[Guest guest]

Hey Ed!! Welcome! Of course you aren't intruding!! This group is for guys

too! :-) There are a few on here, they just aren't as chatting as us girls

are! So, welcome aboard. I agree with what Catalina said... What did you do

last time? What did you like about it, what didn't really feel good to you?

Losing weight, I think, should be something that feels good...not painful.

You have to find what works for you. Have you talked to your Doctor about it?

I, personally, don't follow anyone else's diet, meaning WW, Atkins, South

Beach... I do have the occasional Slimfast shake (sometimes I can't bear eating

in the HOTHOT heat here...so I drink my vities.) Anyway, I am just trying to

eat healthy and exercise (which is the hardest part for me). Everyone here

has been terrific! This group is great! Any questions are answered with lots

of information and there is a TON of encouragement! Gotta love that! ;-)

So, welcome... Hang in there. We are all pulling for you, we know you can do

it!

Take care,

(Balto., MD)

220/205/140

[Guest guest]

Hi Ed!

Welcome to WLB, as you can see we are a friendly and supportive

group, chock full of motivation! Thanks for sharing your story with

us, I hope we can be of some help while you work on meeting your

goals. Take care, I look forward to getting to know you through

your posts!

Sharon

[Guest guest]

>>>Anyway, I'm feeling a renewed sense that I can do it this time. I'm

afraid it'll be too late one day (I'm gonna be 37 next week). I

don't know what else to say, thanks for reading this.

Ed

Hi, Ed. Welcome to the group. I'm 39 and got that same feeling that I need to

take care of it now. (happy pre birthday, btw). I think the best gift you can

give yourself and your family is taking care of your health to make sure your

around for a long time :-). This group is very knowledgeable and supportive. I

know I can lose my weight and keep it off, and I know you can too. XXXMarge

[Guest guest]

Hi Ed, I'm Kiti and boy do I understand comfort eating! And its

just a big circle...you feel bad about something in your day and

eat...then you feel bad you ate...and if like me you eat again! I

have finally *fingers crossed* stopped that cycle but more because

it causes me stomach problems than because I resolved any issues!

My only suggestion would be to find a different stress outlet.

Tackle one thing at a time. So if its like work related no one

appreciates you kind of thing *which is my biggest thing!!!* get a

punching bag and whale on it! I have one and I truely love it!

Kiti

[Guest guest]

Welcome, !! You will find all the support you need right here!! What a

great group of people this is! Congratulations on your decision to take your

weight into your control!! Emotional eating has been a problem for me as

well, along with others on this group... So you will find plenty of

understanding

people here. Again, Welcome Aboard!!

Take care,

(Balto., MD)

220/205/140

[Guest guest]

,

Welcome to the group! If you need support, this is the place to find it!

This group is fantastic, and has really helped to keep my motivated. I

started making gradual changes in April, and have worked up to my current

diet and exercise plan. It includes 30 minutes of exercise 3 times a week,

and counting calories (1700-2300 a day). Best of luck!

~Jette~ in NC

Start Date 4/7/2003

SW-285/CW-251/MG-250/FG-160

" When the pain of staying the same is greater than the pain to change... it

is time to change "

new member

> Hi Everyone

> My name is , and I'm 42. I live in Florida. I need to lose 120

> pounds. My exercise is walking. Just started my diet on July 10th.

> Looking for support because I really don't have any around me. Most

> people around me think I'll just gain it back, or give up. It is not

> easy i do LOVE to eat, and I'm also a emotional eatter. Look forward

> to being a member of the group. Hugs,

[Guest guest]

>>>>>My name is , and I'm 42. I live in Florida. I need to lose 120

pounds. My exercise is walking. Just started my diet on July 10th.

Looking for support because I really don't have any around me. Most

people around me think I'll just gain it back, or give up. It is not

easy i do LOVE to eat, and I'm also a emotional eatter. Look forward

to being a member of the group. Hugs,

Hi, , I'm 39, from Brooklyn. I love walking. I think it's a great way to

gain stamina and lose weight. I have no question in my mind that if you want to

lose this weight and keep it off you will do it. I'm approaching it as a change

in my lifestyle, in eating habits and exercise habits, that will be lifelong

rather than a " diet " that will last until the weight is off. It's taken me

probably about a year to really get into a good exercise routine that I don't

slack off on. Also, finding ways to overcome emotional eating was a challenge

to me to. I love to cook and I love to eat as well. Changing my eating plan

doesn't mean that I can't eat good, tasty food. I just eat different foods in

different amounts. Take care. XXXMarge

[Guest guest]

Welcome ,

Sorry this welcome is late. I'm sure you have found out by now, we are

a very active, supportive group. I'm always behind on post. Anyway, I'm

Gena, 38, 5'3 " and had a similar experience. When I went down home to

Minnesota, I'm in Alaska, for my dad's funeral 3 years ago I knew I

looked bad but when my mom sent me some pictures she had taken while I

was there I was devastated! I use those pic's now to keep me motivated.

You can see one in the photo section. I was 284 lbs!!! so far I am 206

and still plugging away. I look forward to hearing about your progress.

Gena

> Hello! 

>

> My name is and I have been reading your posts for a week now

> and have decided that I love the way you all support one another and

> it was time for me to join in!   I am 32, 5'5 " , 220lbs, single and a

> brand new home owner (yea me!)!  I went to one of my very best

> friends' weddings a few weeks ago and made a point to have pictures

> of all of us for " memories " .  I got the pictures back over the

> weekend and I don't even recognize myself! I do not see that person

> when I look in the mirror and I always thought that meant I had a

> good sense of who I really am!  I still believe that, but I also

> think that I am in serious denial about my weight and need to wake

> up and smell the french fries!  I keep thinking that losing the

> weight and changing my lifestyle will be impossible, but I forget

> that I stopped eating meat about 8 years ago and have never looked

> back. That is a major change, I just need to find that mentality

> again and harness it to help me lose weight. 

>

> My friends are great and are always supportive, but they are only

> helping me deny my unhealthy weight by never talking about (of

> course they are folowing my lead)!  I would love to get the honest

> support that this group has been giving and hope to be able to find

> alot of " weight loss buddies " .  Everyone I know has body image

> issues, but it really helps to have advice and support from others

> who have been a " plus size " person because I think that it really

> has a unique effect on your body, mind and most importantly, your

> spirit that others may not really understand. Looking forward

> to " posting " with you!

>

[Guest guest]

Welcome!

Well, you will still be ahead of my little guy. No hearing aids til almost

11 months. You are still starting VERY early. When are you supposed to be

getting his CI now?

This is a great group!

Where are you located?

Tawnya

Ian, 1, mild/mod

3 1/2 hearing

New member

>

>I have been a silent member for just over a week. I have been

>reading all the messeges and feel overwhelmed. Knowing there are so

>many parents out there who are voicing the same feelings I have been

>afraid of saying. Thank you all for providing such a place.

>My son was diagnosed with a profound hearing loss at 4 1/2 months.

>He is 6 1/2 months now. We were supposed to get a cochlear implant

>in January but we gotted bumped off the schedual. I know there are

>children out there who need the device sooner, some in an emergency,

>but I can't help feeling like we lost a better chance at fewer

>developmental delays. I don't know. I have been doing a lot of

>reading and am trying to become an expert and advocate for my son,

>but sometimes it can be too much.

>Then all I have to do is look at him. His smiles and giggles make

>everything worth it. Thank you for helping me realize that.

>

>

>

>

>

>

>All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

>

>

[Guest guest]

Very early indeed! It is so wonderful how many kids get intervention

so early these days. Do not worry about losing a few months. Do

advocate for your son, of course, but don't feel too bad about the

short delay.

> Welcome!

>

> Well, you will still be ahead of my little guy.  No hearing aids til

> almost

> 11 months.  You are still starting VERY early.  When are you supposed

> to be

> getting his CI now?

>

> This is a great group!

> Where are you located?

>

> Tawnya

> Ian, 1, mild/mod

> 3 1/2 hearing

> New member

>

>

> >

> >I have been a silent member for just over a week.  I have been

> >reading all the messeges and feel overwhelmed.  Knowing there are so

> >many parents out there who are voicing the same feelings I have been

> >afraid of saying.  Thank you all for providing such a place.

> >My son was diagnosed with a profound hearing loss at 4 1/2 months.

> >He is 6 1/2 months now.  We were supposed to get a cochlear implant

> >in January but we gotted bumped off the schedual.  I know there are

> >children out there who need the device sooner, some in an emergency,

> >but I can't help feeling like we lost a better chance at fewer

> >developmental delays.  I don't know.  I have been doing a lot of

> >reading and am trying to become an expert and advocate for my son,

> >but sometimes it can be too much.

> >Then all I have to do is look at him.  His smiles and giggles make

> >everything worth it.  Thank you for helping me realize that.

> >

> >

> >

> >

> >

> >

> >All messages posted to this list are private and confidential.  Each

> post

> is the intellectual property of the author and therefore subject to

> copyright restrictions.

> >

> >

> >     

[Guest guest]

<< She's now at the stage of

having tantrums and won't sit down to have our " listen & talk "

session. >>

As far as this part of your post is concerned, my suggestion would be to make

sure you are on a topic that she is interested in. I have found that there

is always a way to get the aspect of language I'm going for into whatever

subject I start with. Or, based on what Neal is talking about and interested

in, I

might find an angle to it that he hasn't yet explored and introduce something

new in that way. With kids this age, flexibility is essential :-)

Rhonda

mom to Audrey, almost 8, hearing; and Neal, almost 5 1/2, CII at 2.9 years

[Guest guest]

Hi Bryna,

Welcome to our list. We have a wonderful group of parents here whose

children range from babies to young adults and the hearing losses from mild to

profoundly deaf and every where inbetween. I was so greatful to find this list

after my daughter was diagnosed with her loss. She was 2 1/2 at the time and

has a moderate sloping to severe sensorineural hearing loss (SNHL) in both ears.

My sister works with someone who I believe has BOR (I forgot about her until I

was reading a discription of the syndrome). She is second generation and she

has a daughter with BOR.

You'll find all sorts of great support from the parents here. Feel free to

ask questions if you don't understand things or are just unsure of something.

This is also a great place to vent if you need to.

Debbie, mom to , 6, mod/sev SNHL and , 2 hearing....not listening

Bryna Nason wrote:

My name is Bryna, my son Noah is 22 months old and was

just diagnosed with a progressive bilateral

senorineural hearing loss. We have been followed since

he was born and failed the newborn hearing screening

and we have not had a completely sucessful test yet.

He is mild to moderate at this time but he started out

" normal " in his right ear and now that is the most

affected side. He has also have been diagnosed with

BOR Syndrome (Branchio Oto Renal Syndrome) which is a

genetic " cause " for his loss. He is going next week to

have an ultrasound of his kidneys to rule out any

malformation.

All this information has been very overwhelming as are

all the agencies who want to help and meet with us

etc. I am hoping this group can give me some insight

and support and maybe find someone else who is going

through a similar situation and can add some clarity

to a very unclear situation. Any and all advice is

more than welcome.

__________________________________________________

[Guest guest]

Hi Byrna - welcome! I have a good friend who has BOR syndrome (she's not on

this list). Her daughter does also.

There's information about BOR at the Boys' Town Research Hospital website:

http://www.boystownhospital.org/parents/info/genetics/bor.asp

This website has tons of information on genetic hearing loss in general and many

associated syndromes. It's been very helpful to us!

Take care

Barbara

--- You wrote:

Hi Byrna. I don't have much information for you personally but I do know a

family who has a 4 year old boy(or he will turn 4 this summer) that has BOR

syndrome. I can forward your email to her if you want me to.

She has always said how unique this syndrome is and she just met another little

girl with BOR syndrome. I think at first they knew of one other family that was

dealing with it. Other than that it has been hard for them to find other kids

like Joe.

So if you don't find much help here or want additional info let me know and I

can email her.

--- end of quote ---

[Guest guest]

Hi Byrna. I don't have much information for you personally but I do know a

family who has a 4 year old boy(or he will turn 4 this summer) that has BOR

syndrome. I can forward your email to her if you want me to.

She has always said how unique this syndrome is and she just met another little

girl with BOR syndrome. I think at first they knew of one other family that was

dealing with it. Other than that it has been hard for them to find other kids

like Joe.

So if you don't find much help here or want additional info let me know and I

can email her.

Mom of 4

Marcus 14

13

Jon 11

Annika 3

bilaterally implanted 3/1/04

hookup 3/25/04

spastic diaplegic CP

[Guest guest]

In a message dated 6/24/2005 10:12:11 P.M. Eastern Daylight Time,

ronandbryna@... writes:

He has also have been diagnosed with

BOR Syndrome (Branchio Oto Renal Syndrome) which is a

genetic " cause " for his loss. He is going next week to

have an ultrasound of his kidneys to rule out any

malformation.

Bryna,

First let me tell you that I empathize and understand the confusion and the

anxiety you're going through right now. When our son was first diagnosed with

his hearing loss we went through all of the testing you are doing right now.

I was a walking bundle of nerves and had no idea what to do or who to talk to

for find support or to translate the doctor talk into plain old English.

Barbara already gave you the Boys Town link. I believe they also track kids

with BOR as part of a study. They were starting that when Ian was being

diagnosed. It's a great resource.

My name is Jill and my son, Ian, is now 14 and D/HOH with a moderate

progressive conductive loss. He was also tested for BOR -- among other things.

We

went through all that testing when he was about 8. That's when we finally knew

the extent if his hearing loss. They sonogrammed his internal organs, they

did CT scans of his head ... we spent days at Columbia Babies Hospital in NYC.

For us, the geneticist ruled out BOR after his kidneys turned out to be fine

and other issues were examined. Instead the geneticist diagnosed a syndrome

called Goldenhar, a cranio-facial disorder that has no blood test available to

confirm it.

Ian was also affected on his right side. Many things went down the right

side of his body. He had a brachial cleft (like a cyst) removed from his neck at

6 weeks old. A hydrocele (his testical not being completely sealed off), a

crooked smile (facial palsy) and an underdeveloped ear (lope ear). No one

could ever tie together this odd collection of issues until the hearing loss

appeared. That made for the 2nd marker for BOR, so off we went on the whirlwind

ride of doctors and tests.

I retell this because it was probably the most difficult few weeks in my

life. Not knowing what was coming or what I could do to help Ian. Not knowing

what kind of a life our precious boy was going to have. Absolutely terrifying.

But we did come out the other end of that period knowing more. We had a

preliminary diagnosis of BOR, so I did research on it.

Did Noah have something to fill the " brachial " part of the BOR? Also, you

may be able to find a list serve like this one specifically for BOR. This list

focuses on deafness and hearing loss from any and all causes. Many of the kids

have had their losses attributed to a syndrome or genetic cause, but it's a

wide range of diagnosis.

If there is anything I can share that will help, just ask. I'm not sure what

kind of information you are looking for. Empathy and support I can offer

without a second thought.

Welcome to the group. I know you are going to find plenty of information and

support here.

Best -- Jill

[Guest guest]

Hello, my name is Dina Mullan

I am a mom to Triplets , and born 8/19/03 at 30w and

10/31/00.

was diagnosed with profound hearing loss in 1/05.

He has hearing aids and FM since 4/05.

Any of you have children this age with hearing loss?

He is going to be 2.

He goes to Mill Neck school for deaf children And I want to put him in a

nursery with his siblings next year.

I just want to know if any of you in my situation, how do you send them to a

nursery , with aid/

Special ed, TOD or else,

Thank you

Dina Mullan

_____

_____

[Guest guest]

>

> Hi everyone. My name is and I have a 22 month old daughter

> Kaitlin who is in the process, we hope, of being diagnosed. Since

> Christmas we have noticed that our daughter's hair is thinning and

> falling out. She is also very tired all the time. She wakes up

in

> the morning and after naps and it is as if she never got any

sleep.

> She gets frequent infections and it seems like they take twice as

> long to resolve. If she needs to be treated with antibiotics it

> usually takes 2-3 rounds before the infection clears up.

>

> About 3 weeks ago her doctor (family pract.) ordered blood work

for

> her. We were told that thyroid conditions in children her age wer

> relatively rare so when the first set of results came back they

> repeated the process. We were told that it was a " false

positive " .

> However when I spoke with the doctor to get the results I was a

bit

> shocked. I have done enought research in the past 3 weeks that I

> know the results are not accurate.

>

> Her T3/T4 ratio is within " normal " range however her TSH was 9.6

My

> father happens to know an endocrinologist that he works with and

gave

> the results to him. He believes that she is hypothyroid,

especially

> since she is showing so many of the symptoms. Here's the

> problem...Our dr. won't give us a referral to a ped.

endocrinologist

> because he BELIEVES that NOTHING IS WRONG!!! I have been so

> frustrated. Of course I will take Kaitlin in myself however it

would

> be nice to have insurance because I know specialist are expensive.

>

> Sorry this is so long but I just needed to vent with others who

would

> understand my frustration.

>

> I look forward to learning more from the group and I'm sure glad I

> found you guys.

>

>

>

Just a thought but could you not get a referal to a pediatrician who

can then do the referral to the pediatric endo? Sometimes it helps

to look at the doctor and nicely say ok, so it is not the

thyroid..her range is normal but then I would like to see a

pediatric specialist to rule out other conditions as something is

causing her to lose her hair and sleep all the time and be

lathargic??

Then when he agrees to eith run more tests or send you to a

different doc you can express your views regarding the thyroid..

Another route would be the ER..as at least here they can do referals

too.just play up with the next infection and go oh, my GP says her

TSH is 10 so it is not a problem and see what response you

get..either that or call the docs office every day at a set time to

see if they have put in the referal yet.

You are right it is your daughter's thyroid..why?? you need a doc to

figure that one out..your daughter does need you to fight for her

though and sometimes the loudest voice gets the quickest results..it

does nto matter if it is because you are right or because they get

sick and tired of you harrassing them as long as you get the

results..

Kats3boys