New member

Report post · August 2, 2003

quint!!!

i have been to dr frohman before!! he is a great doctor. i think i have

seen just about everyone in ny and nj.

carrots

>From: sarcdog@...

>Reply-To: Neurosarcoidosis

>To: Neurosarcoidosis

>Subject: Re: new member

>Date: Sat, 2 Aug 2003 15:47:59 -0400 (EDT)

>

>Liz dear here is the eye doc. Dr. Larry Frohman 90 Bergen st

>suite 6162 Newark, New Jersey. He is good with sarc eye

>problems......Quint

>

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Report post · August 13, 2003

Hi , welcome to the group... You don't have to have Neurosarcoidosis to join the group you are welcome to be a part.... feel free to ask questions, or join in on converstations.... Let us know what you would like to know... or just be a part of a loving supportive family..... Again come on in and make your self at home...Tell us if you need anything....

Big Hug,

-- new member

Hello to all. i am new to this group however not new to sarcoidosis.

I was diagnosed in 1998. At that time it was in my liver and spleen.

Now it is in my lungs and kidneys also. I do not have neurosarcoid,

but was still interested in joining this group for all the

information I could find. Thank you.

Report post · August 13, 2003

welcome !....I was diagnosed with systemic sarcoidosis last April and neurosarcoidosis last month. This is a wonderful and supportive group.

Sincerely,

Stacie

Report post · August 14, 2003

Welcome ,

You have found information and most of all support in this wonderful group!

Nimeth wrote:

Hello to

all. i am new to this group however not new to sarcoidosis.

I was diagnosed in 1998. At that time it was in my liver and spleen.

Now it is in my lungs and kidneys also. I do not have neurosarcoid,

but was still interested in joining this group for all the

information I could find. Thank you.

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

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To subscribe email neurosarcoidosis-subscribe

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The moderators will not be doing it for you!

~~~~ *** ~~~ *** ~~~ *** ~~~~

Come stand by my side where I am going,

Take my hand if I should stumble and fall,

It's the strength and love that you share,

That gives me what I need most of all.

- Hoyt Axton

~~~~ *** ~~~ *** ~~~ *** ~~~~

Report post · August 15, 2003

Welcome , This is a great group and YES you will find an abundance of information here. Glad that you have joined us

Ann

new member

Hello to all. i am new to this group however not new to sarcoidosis. I was diagnosed in 1998. At that time it was in my liver and spleen. Now it is in my lungs and kidneys also. I do not have neurosarcoid, but was still interested in joining this group for all the information I could find. Thank you.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

Report post · October 13, 2003

Hey, Brock! Welcome to our family. We're more than 200 strong, all over the world. Sorry you had to get the sarc monster in order to meet us. Rose from Indiana

New Member

Hello Everyone,

My name is Brock and i am new to this support group. I have been dealing and battling medical problems for two years. I have sarc in the lungs and in my pituitary gland. I look forward to talking with people.

Brock~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

Report post · January 7, 2004

Welcome. Glad you are able to join us on-line.

Kim

Mom to Dylan 7 CHaRGe, Kayla 13, Tyler 15

> Hello everyone!

>

> I am the parent 3 girls, Jordyn (8 year old W/CHARGE) (4) and

> Gracie(1). We have been aware of this great list service but did

> not have the access to a computer to participate. We now have a

> home computer, so we can communicate with others that have and are

> in the same situation as us. My daughter was diagnosed at the age

> of 3 weeks with CHARGE. We have been fortunate in terms of help and

> support. Although we live in a northern B.C. community, we have

> meet with many professionals, specialists and have also trained many

> individuals on the fine aspects of CHARGE and our daughter's special

> needs. We have only contacted a few over the past 8 years. I hope

> to share much more information and to meet other CHARGE families.

>

> Sincerely

>

> Jocelyn Robbins

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

Report post · January 7, 2004

Jocelyn,

GREAT to hear from you! Nice to see you on the list.

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

New member

Hello everyone!

I am the parent 3 girls, Jordyn (8 year old W/CHARGE) (4) and

Gracie(1). We have been aware of this great list service but did

not have the access to a computer to participate. We now have a

home computer, so we can communicate with others that have and are

in the same situation as us. My daughter was diagnosed at the age

of 3 weeks with CHARGE. We have been fortunate in terms of help and

support. Although we live in a northern B.C. community, we have

meet with many professionals, specialists and have also trained many

individuals on the fine aspects of CHARGE and our daughter's special

needs. We have only contacted a few over the past 8 years. I hope

to share much more information and to meet other CHARGE families.

Sincerely

Jocelyn Robbins

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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

--

Report post · March 7, 2004

Hello , welcome to the list! I am 25 years old and have CHARGE.

There are several CHARGErs (CHARGErs is the affectionat name for

those of us with CHARGE) on this list. There is also a couple

CHARGErs who are a bit older then me. We have lots of CHARGErs with

many varying abilities and talants so feel free to ask us anything

or ask the parents of the younger families. Anyways there are tons

of awsome ppl on this list, dont be shy, ask anything! Somoene here

will probably have an answere for you. If no answere, at least they

are terrific listeners!

BTW, where are you from?

Chantelle

Report post · March 7, 2004

Kristy,

All of you have been through so much already. Kaleb is a lucky child to have

you as his mother. Although your husband will handle life differently than

you, but together the two of you can be strong to help Kaleb along. Welcome.

Bonnie, Mom to a 21, Patty CHARGE 19, and wife to

Report post · March 7, 2004

Kristy,

Welcome. I teach special education also. I too was blessed to stay

home with until she entered a regular first grade. Back then we were

all alone with no list and no other famililes with special needs children.

Our cHARGEr is now 19 1/2 years old and in college. She is hearing

impaired, had a trach until 3 1/2, open heart surgery at 6 and 27 other

surgeries. She still is medically fragile but doing well. Her whole story

takes pages to tell . All CHARGE kids are different but this list is

great.

Blessings and Hugs,

Lynn

Ohio

Mom to Tom 24, 19 1/2 cHARGE, and wife to Doug

New Member

> Hello,

> My name is Kristy, and I have a 16 month old that was diagnosed with

CHARGE

> Syndrome when he was in the NICU, 12 months ago (he's been home for ten

> months now...). He's doing wonderfully, I just wanted to basically

> introduce ourselves. My son's name is Kaleb, he currently has a trach,

> j-tube and is on oxygen. His coloboma is in his optical nerve. He was

born

> premature, and a valve in his heart didn't close, but it was fixed, he has

> an apnea monitor for when he's sleeping at night, along with his

> pulsoximeter. He was also born w/TEF (Tracheal Esophegeal Fistula) which

> was repaired the day he was born...He also has Reflux, and GERD... His

right

> nostril(just a warning i'm a horrible speller) (atresia,inside) is

> narrower... his left ear is the charastic square and set low. His

genitalia

> is smaller than normal. His hearing is still in the process of being

> tested, right now a sedated test is pending. His vision is being

monitored

> by a reputable doctor, whom was very positive about prospects. He had an

> MRI done when he was in the NICU, and they reported to us that his brain

> looked normal.

> He's an amazing little boy, who's been through so much, he's strong and

> bright. He's our little angel! My intent also is to connect with other

> parents and such that can give advice and a group that I can relate to,

and

> hopefully to better understand and to help my son.

> I found Yahoo! groups through a friend, a fellow NF survivor. NF,

> Necrotizing Faciitis: " the flesh eating desease " . And was hopeing there

was

> a group for CHARGE! So we're extatic that we're able to connect and to

> relate to others.

> Right now Kaleb is learning to sit independantly, he has a prone stander

as

> well, helping to build great bones! He has a walker (the baby kind), that

> he gets around in. He's very active and loves to dance and move around.

> We live in land, and now that the weather is getting to be more

> spring-like, Kaleb's been itching to get outside. He loves the outdoors

(as

> long as he's wearing sun-glasses)! And he loves to travel. Last summer

we

> went camping (in an RV) in Virginia, for a family reunion, and I think if

he

> could speak/talk he would say that's been his favorite thing!

> Kaleb is learning sign-language. He's now signing " more " independantly,

> we're working on finished and having him choose (relating the sign w/the

> item) out of his communication box.

> I have a background in special education, and all along i've had numerous

> people tell me that God paired us up for a reason... he really couldn't

have

> better parents. My husband at times has a hard time dealing with

> Kaleb's special needs, and is unable to relate to his fellow co-workers

> about their children. I've reasured him however that there are plenty of

> things he has to boast about, and he's getting better! He knows how

special

> Kaleb is, and how wonderfully he's doing. Kaleb is definately a daddy's

> boy.

> With my special education background I feel privledge to be able to stay

> home with Kaleb, for early intervention and to maximize his learning

> potential. When we first brought Kaleb home he was more fragile and

> medically sensative. Now he's much more the toddler, who loves to

> rough-house and to stay active.

> We live in land, we haven't ventured as much as joining support groups

> that are local, but I thought this would be a great start for our family.

> Thank you for listening (or should I say " reading " ) and I look forward to

> sharing w/you'all...

> Gob Bless & keep you safe,

> ~ Kristy

>

> _________________________________________________________________

> Find things fast with the new MSN Toolbar - includes FREE pop-up blocking!

> http://clk.atdmt.com/AVE/go/onm00200414ave/direct/01/

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

Report post · March 8, 2004

Kristy-

Just wanted to welcome you to our CHARGE family! My daughter, Aubrie, is 6

yrs old. She did not have respiratory issues, but did have a Gtube until

about age 1.5 yrs. She has optic nerve coloboma in one eye but the other

has near normal vision. She has mild-mod loss in one ear and mod-sev in the

other. Functionally, she has pretty good hearing with her aids. She has

some fine and gross motor delays, speech articulation problems, and balance

issues, but she gets around quite well (a little slower than her peers),

speaks well enough to manage with people who know her, eats orally, and is

learning to read! She's in regular kindergarten with a 1:1 aide.

I also stayed home with her until she was in school. Luckily, she went to

school at age 3 so that freed me up. Boy, did I need it! As much as I feel

fortunate to have a work schedule that allows me to manage all of her appts,

meetings, etc -- I sure do enjoy having a life separate from her stuff.

I, too, am a teacher by training. I taught preschool and elementary. My

knowledge of child development and learning theory, plus having used the

preschool spec ed program as a teacher, helped a great deal. However, I

have learned more about all those things from watching her development.

It's amazing how one missing factor can make such a huge difference in the

overall picture. Her development has been sort of like in slow motion.

I've been able to really see how things progress, how each area affects the

other, etc. It's been an amazing journey!

So happy to have you aboard! This is a group I never would have joined by

choice -- but, now that I'm here -- I wouldn't want to be anywhere else with

any other group of people. As we drove up to the hotel for one of the

CHARGE conferences, my now 12-year-old son asked why CHARGE families are so

great. Does CHARGE only happen to nice, wonderful people? Or do only the

nice, wonderful CHARGE people find their way to the CHARGE list and

conferences? Hmmm... pretty interesting observation for a kid! I think

you'll find wonderful support here!

Michele W

mom to Aubrie (6 yrs) CHaRgE and (12 yrs)

New Member

> Hello,

> My name is Kristy, and I have a 16 month old that was diagnosed with

CHARGE

> Syndrome when he was in the NICU, 12 months ago (he's been home for ten

> months now...). He's doing wonderfully, I just wanted to basically

> introduce ourselves. My son's name is Kaleb, he currently has a trach,

> j-tube and is on oxygen. His coloboma is in his optical nerve. He was

born

> premature, and a valve in his heart didn't close, but it was fixed, he has

> an apnea monitor for when he's sleeping at night, along with his

> pulsoximeter. He was also born w/TEF (Tracheal Esophegeal Fistula) which

> was repaired the day he was born...He also has Reflux, and GERD... His

right

> nostril(just a warning i'm a horrible speller) (atresia,inside) is

> narrower... his left ear is the charastic square and set low. His

genitalia

> is smaller than normal. His hearing is still in the process of being

> tested, right now a sedated test is pending. His vision is being

monitored

> by a reputable doctor, whom was very positive about prospects. He had an

> MRI done when he was in the NICU, and they reported to us that his brain

> looked normal.

> He's an amazing little boy, who's been through so much, he's strong and

> bright. He's our little angel! My intent also is to connect with other

> parents and such that can give advice and a group that I can relate to,

and

> hopefully to better understand and to help my son.

> I found Yahoo! groups through a friend, a fellow NF survivor. NF,

> Necrotizing Faciitis: " the flesh eating desease " . And was hopeing there

was

> a group for CHARGE! So we're extatic that we're able to connect and to

> relate to others.

> Right now Kaleb is learning to sit independantly, he has a prone stander

as

> well, helping to build great bones! He has a walker (the baby kind), that

> he gets around in. He's very active and loves to dance and move around.

> We live in land, and now that the weather is getting to be more

> spring-like, Kaleb's been itching to get outside. He loves the outdoors

(as

> long as he's wearing sun-glasses)! And he loves to travel. Last summer

we

> went camping (in an RV) in Virginia, for a family reunion, and I think if

he

> could speak/talk he would say that's been his favorite thing!

> Kaleb is learning sign-language. He's now signing " more " independantly,

> we're working on finished and having him choose (relating the sign w/the

> item) out of his communication box.

> I have a background in special education, and all along i've had numerous

> people tell me that God paired us up for a reason... he really couldn't

have

> better parents. My husband at times has a hard time dealing with

> Kaleb's special needs, and is unable to relate to his fellow co-workers

> about their children. I've reasured him however that there are plenty of

> things he has to boast about, and he's getting better! He knows how

special

> Kaleb is, and how wonderfully he's doing. Kaleb is definately a daddy's

> boy.

> With my special education background I feel privledge to be able to stay

> home with Kaleb, for early intervention and to maximize his learning

> potential. When we first brought Kaleb home he was more fragile and

> medically sensative. Now he's much more the toddler, who loves to

> rough-house and to stay active.

> We live in land, we haven't ventured as much as joining support groups

> that are local, but I thought this would be a great start for our family.

> Thank you for listening (or should I say " reading " ) and I look forward to

> sharing w/you'all...

> Gob Bless & keep you safe,

> ~ Kristy

>

> _________________________________________________________________

> Find things fast with the new MSN Toolbar - includes FREE pop-up blocking!

> http://clk.atdmt.com/AVE/go/onm00200414ave/direct/01/

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

Report post · March 8, 2004