(unknown)

[Guest guest]

On Fri, 10 Jan 2003 21:25:19 +0100, " guillermo guillermo "

SIRINGO34@...> spoke thusly:

>por favor agradeceria mucho ke me enviasen los mensajes en ESPAÑOL vivo en

>Madrid, españa y no se me da bien el ingles

>

>me operan a finales de enero del 2003 de una craneotomia descompresiva de

>fosa posterior, actualmente tengo el 60% de los sintomas del arnold chiari y

>siringomielia y miedo a la intervención

Babel Fish Translation, In English: Help

please agradeceria ke sent the messages to me in alive SPANISH in Madrid, Spain

much and English does not occur me well they operate to me at the end of January

of the 2003 of one craneotomia descompresiva one of later grave, at the moment I

have 60% of sintomas of arnold chiari and siringomielia and fear to the

intervention

(that is a pretty poor translation--but I thought it might help)

administrator/creator/moderator

alt.med.fibromyalgia.recovery.info (moderated)

alt.support.depression.manic.moderated

to email me from news groups, just remove the Z.

[Guest guest]

Good luck w/ the depression meds!! They are so necessary for many of us

- unfortunately some of them play havoc with our weight. I never lost

another pound after going on Paxil, and as a matter of fact have gained

weight back. I am still fighting though. Be vigilant kiddo!!

Amber/FL

(unknown)

In short, i lost 5.4 pounds in 3 days and i'm severly depressed. he

put me back on depression meds and sees me again on March 6th at 3pm.

Protein intake should be 40g, but i'm keeping it at 100-120 until i

lose the last 13.2 pounds.

love amber

319/170/183.6/178.4

Check out our website at: http://www.geocities.com/proteinpervs/

For recipe information go to our database:

http://groups.yahoo.com/group/OSSG-Protein/database

[Guest guest]

Hi WJC,

I am amazed (and jealous) when I read about people that are diagnosed, have

surgery, and go on to live their lives. It does happen :-)

There are a lot of people, like you, that it sometimes takes years to find a

diagnosis.

Chiari tends to be progressive. Insidiously progressive.

My daughter is our little Chiarian, and we had to learn the hard way it is

up to us to advocate. Follow-up calls to doctors, specialists,

radiologists, insurance. Hand-carrying films to appointments. Asking lots

of questions. Keeping a journal. Getting copies of summaries & medical

reports to keep for ourselves (it's often surprising what we haven't been

told).

I used to want the doctor to like me. I used to want a doctor with a

decent, personable manner.

Now, I want a doctor that listens, really listens. Now, I want a doctor

that is knowledgeable in Chiari related issues. (Sometimes they tolerate me

& sometimes they are personable, LOL, that is only a bonus).

You are not alone in your frustration. And never, never, never give up!

You are so worth it!

Best wishes,

, tired mom to - 6 yrs. old

decompressed Aug. 2000, tethered cord surgery Jan. 2003

(unknown)

> I wanted to get a little feedback from the group if I could. I went

> to the neurologist back in December of last year. He conducted some

> tests and said that he wanted to have a MRI done on my brain. From

> what little he had seen and our interview, he felt I might have a

> brain issue. As HMO's go, I did not hear back from my doctor. Last

> week my wife was talking to a co-worker of her's. My wife's friend

> was describing the surgery that her mother had recently had

> (decompression surgery) and they discussed the symptoms and

> problems. This sent my wife's antena up a bit and she asked her

> friend about a website. Suddenly I was turned on to the WACMA

> website. I did a lot of reading and it tended to frighten me.....all

> of it sounded WAY to familiar. I called my regular Dr's office

> to " get their attention " about my lack of MRI. The office called

> back within the hour and had it scheduled for next Monday. I asked

> the nurse if she had ever heard of ACM. She stated she had not heard

> of it until she re-read the neurologist's letter requesting the MRI.

> To make a long story short (too late), my question is, has everyone

> been given the run-around about this? I have been having

> increasingly significant problems for 7 years. I have been mis-

> diagnosed so many times, that I feel like giving up hope. As weird as

> it sounds, I hope that ACM is the issue, at least then I would know

> what the problems is and that it can be fixed. Am I alone in this

> type of frusteration?

>

> Thanks......WJC

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Hi WJC,

I am amazed (and jealous) when I read about people that are diagnosed, have

surgery, and go on to live their lives. It does happen :-)

There are a lot of people, like you, that it sometimes takes years to find a

diagnosis.

Chiari tends to be progressive. Insidiously progressive.

My daughter is our little Chiarian, and we had to learn the hard way it is

up to us to advocate. Follow-up calls to doctors, specialists,

radiologists, insurance. Hand-carrying films to appointments. Asking lots

of questions. Keeping a journal. Getting copies of summaries & medical

reports to keep for ourselves (it's often surprising what we haven't been

told).

I used to want the doctor to like me. I used to want a doctor with a

decent, personable manner.

Now, I want a doctor that listens, really listens. Now, I want a doctor

that is knowledgeable in Chiari related issues. (Sometimes they tolerate me

& sometimes they are personable, LOL, that is only a bonus).

You are not alone in your frustration. And never, never, never give up!

You are so worth it!

Best wishes,

, tired mom to - 6 yrs. old

decompressed Aug. 2000, tethered cord surgery Jan. 2003

(unknown)

> I wanted to get a little feedback from the group if I could. I went

> to the neurologist back in December of last year. He conducted some

> tests and said that he wanted to have a MRI done on my brain. From

> what little he had seen and our interview, he felt I might have a

> brain issue. As HMO's go, I did not hear back from my doctor. Last

> week my wife was talking to a co-worker of her's. My wife's friend

> was describing the surgery that her mother had recently had

> (decompression surgery) and they discussed the symptoms and

> problems. This sent my wife's antena up a bit and she asked her

> friend about a website. Suddenly I was turned on to the WACMA

> website. I did a lot of reading and it tended to frighten me.....all

> of it sounded WAY to familiar. I called my regular Dr's office

> to " get their attention " about my lack of MRI. The office called

> back within the hour and had it scheduled for next Monday. I asked

> the nurse if she had ever heard of ACM. She stated she had not heard

> of it until she re-read the neurologist's letter requesting the MRI.

> To make a long story short (too late), my question is, has everyone

> been given the run-around about this? I have been having

> increasingly significant problems for 7 years. I have been mis-

> diagnosed so many times, that I feel like giving up hope. As weird as

> it sounds, I hope that ACM is the issue, at least then I would know

> what the problems is and that it can be fixed. Am I alone in this

> type of frusteration?

>

> Thanks......WJC

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Hi WJC,

I am amazed (and jealous) when I read about people that are diagnosed, have

surgery, and go on to live their lives. It does happen :-)

There are a lot of people, like you, that it sometimes takes years to find a

diagnosis.

Chiari tends to be progressive. Insidiously progressive.

My daughter is our little Chiarian, and we had to learn the hard way it is

up to us to advocate. Follow-up calls to doctors, specialists,

radiologists, insurance. Hand-carrying films to appointments. Asking lots

of questions. Keeping a journal. Getting copies of summaries & medical

reports to keep for ourselves (it's often surprising what we haven't been

told).

I used to want the doctor to like me. I used to want a doctor with a

decent, personable manner.

Now, I want a doctor that listens, really listens. Now, I want a doctor

that is knowledgeable in Chiari related issues. (Sometimes they tolerate me

& sometimes they are personable, LOL, that is only a bonus).

You are not alone in your frustration. And never, never, never give up!

You are so worth it!

Best wishes,

, tired mom to - 6 yrs. old

decompressed Aug. 2000, tethered cord surgery Jan. 2003

(unknown)

> I wanted to get a little feedback from the group if I could. I went

> to the neurologist back in December of last year. He conducted some

> tests and said that he wanted to have a MRI done on my brain. From

> what little he had seen and our interview, he felt I might have a

> brain issue. As HMO's go, I did not hear back from my doctor. Last

> week my wife was talking to a co-worker of her's. My wife's friend

> was describing the surgery that her mother had recently had

> (decompression surgery) and they discussed the symptoms and

> problems. This sent my wife's antena up a bit and she asked her

> friend about a website. Suddenly I was turned on to the WACMA

> website. I did a lot of reading and it tended to frighten me.....all

> of it sounded WAY to familiar. I called my regular Dr's office

> to " get their attention " about my lack of MRI. The office called

> back within the hour and had it scheduled for next Monday. I asked

> the nurse if she had ever heard of ACM. She stated she had not heard

> of it until she re-read the neurologist's letter requesting the MRI.

> To make a long story short (too late), my question is, has everyone

> been given the run-around about this? I have been having

> increasingly significant problems for 7 years. I have been mis-

> diagnosed so many times, that I feel like giving up hope. As weird as

> it sounds, I hope that ACM is the issue, at least then I would know

> what the problems is and that it can be fixed. Am I alone in this

> type of frusteration?

>

> Thanks......WJC

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Hi Lost our Keys again,

My name is Cheryl and I'm the Mom to 5 year old triplets, , ,

and . is my RSS son plus he has a sensorineural hearing loss

and uses the aid of a Cochlear Implant to hear. He does not have Mondini,

however, I do know of other children (Non-RSS) that do and have received a

cochlear implant to help them hear. One child I know is doing great and

other is not doing as well with the implant. Anyway, if you would like to

chat more, please contact me at stslane@....

Cheryl Slane

(unknown)

> I am the mom of a 6 year old RSS boy. This is only the second time I

> have posted something. My son has typical RSS features and health

> issues, but he is also having several health related issues that are

> not typically RSS. The reason for my message is to find out if any

> other RSS kids have any of these other health problems that my son

> seems to be showing. The main ones are hydrocephalus (treated with a

> VP shunt), Mondini dysplasia (deformity of the cochlea), fluctuating

> hearing loss, a high jugular bulb (his jugular vein loops through his

> ear canal), " absence " seizures, and Asbergers syndrome (high

> functiong autism). The seizures and the Asberger's syndrome are not

> officially diagnosed, but I, as well as his neurologist are fairly

> certain, an EEG is scheduled and paperwork for the autism clinic is

> done. I am jsut trying to get more information. Thank you,

>

>

>

>

>

>

[Guest guest]

Just to add my thoughts and information, which may, I hope, help you

feel better, my son Maxwell (will be 15 in July) has RSS, a slight

hearing loss in his left ear, Tourette Syndrome, various components

of PDD and ADHD. He has pronated feet (somewhat corrected last year

with surgery, but he will never be a runner), a bit of kyphosis (a

curvature of the spine that goes the opposite of scoliosis), anxiety,

depression, early puberty and who knows what else. The list is too

long!!!

BUT I am happy to say that he is a great kid with lots of compassion,

very social when he wants to be (especially with Yugioh and Gameboy

Advance) and a good student.

I know you have a lot on your plate right now, but once the testing

is done and you can sort things out, you will be able to see a bit

more clearly. And certainly use us on this listserve for support.

Somewhere, someone along the line has experienced at least part of

what you are going through. Know that we all care.

Jodi

Teen Networking Coordinator

MAGIC Foundation

[Guest guest]

Just to add my thoughts and information, which may, I hope, help you

feel better, my son Maxwell (will be 15 in July) has RSS, a slight

hearing loss in his left ear, Tourette Syndrome, various components

of PDD and ADHD. He has pronated feet (somewhat corrected last year

with surgery, but he will never be a runner), a bit of kyphosis (a

curvature of the spine that goes the opposite of scoliosis), anxiety,

depression, early puberty and who knows what else. The list is too

long!!!

BUT I am happy to say that he is a great kid with lots of compassion,

very social when he wants to be (especially with Yugioh and Gameboy

Advance) and a good student.

I know you have a lot on your plate right now, but once the testing

is done and you can sort things out, you will be able to see a bit

more clearly. And certainly use us on this listserve for support.

Somewhere, someone along the line has experienced at least part of

what you are going through. Know that we all care.

Jodi

Teen Networking Coordinator

MAGIC Foundation

[Guest guest]

Hi:-)

I will respond in greater detail to your e-mail in a few days. My daughter

is currently hospitalized and neurology is looking at her in detail. She

just turned two and we are trying to figure out what effects a current

illness has had on her neurological system and it will still be a while

before she is off of antiseizure medicine, Phenobarbital, and she is still

having some with drawl from other sedation drugs. Neurology has also put

her on a drug called resperitol (sp) to control " movements "

She does have benign hydrocephalus but, big heads run in both mine and my

husband's family. They did not have the technology to diagnosis this a

generation ago. Janelle's ventricles have shown some enlargement since her

last MRI. The current attending neurologist is going to review her case at

a meeting with 20 other pediatric neurologists and surgeons on Monday. It

is a regularly scheduled meeting the Chicago area ped Nuero doctors have. I

will find out what they have to say on Tuesday. My daughter has been very

ill which may have caused some issues but the nurologist is very optimistic

:-)!!!

I will keep in touch.

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

"

lostourkeysagain@...>

Reply-To: RSS-Support

Date: Thu, 20 Feb 2003 15:29:30 -0000

To: RSS-Support

Subject: (unknown)

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Thu, 20 Feb 2003 09:32:48 -0600

I am the mom of a 6 year old RSS boy. This is only the second time I

have posted something. My son has typical RSS features and health

issues, but he is also having several health related issues that are

not typically RSS. The reason for my message is to find out if any

other RSS kids have any of these other health problems that my son

seems to be showing. The main ones are hydrocephalus (treated with a

VP shunt), Mondini dysplasia (deformity of the cochlea), fluctuating

hearing loss, a high jugular bulb (his jugular vein loops through his

ear canal), " absence " seizures, and Asbergers syndrome (high

functiong autism). The seizures and the Asberger's syndrome are not

officially diagnosed, but I, as well as his neurologist are fairly

certain, an EEG is scheduled and paperwork for the autism clinic is

done. I am jsut trying to get more information. Thank you,

[Guest guest]

Hi:-)

I will respond in greater detail to your e-mail in a few days. My daughter

is currently hospitalized and neurology is looking at her in detail. She

just turned two and we are trying to figure out what effects a current

illness has had on her neurological system and it will still be a while

before she is off of antiseizure medicine, Phenobarbital, and she is still

having some with drawl from other sedation drugs. Neurology has also put

her on a drug called resperitol (sp) to control " movements "

She does have benign hydrocephalus but, big heads run in both mine and my

husband's family. They did not have the technology to diagnosis this a

generation ago. Janelle's ventricles have shown some enlargement since her

last MRI. The current attending neurologist is going to review her case at

a meeting with 20 other pediatric neurologists and surgeons on Monday. It

is a regularly scheduled meeting the Chicago area ped Nuero doctors have. I

will find out what they have to say on Tuesday. My daughter has been very

ill which may have caused some issues but the nurologist is very optimistic

:-)!!!

I will keep in touch.

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

"

lostourkeysagain@...>

Reply-To: RSS-Support

Date: Thu, 20 Feb 2003 15:29:30 -0000

To: RSS-Support

Subject: (unknown)

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Thu, 20 Feb 2003 09:32:48 -0600

I am the mom of a 6 year old RSS boy. This is only the second time I

have posted something. My son has typical RSS features and health

issues, but he is also having several health related issues that are

not typically RSS. The reason for my message is to find out if any

other RSS kids have any of these other health problems that my son

seems to be showing. The main ones are hydrocephalus (treated with a

VP shunt), Mondini dysplasia (deformity of the cochlea), fluctuating

hearing loss, a high jugular bulb (his jugular vein loops through his

ear canal), " absence " seizures, and Asbergers syndrome (high

functiong autism). The seizures and the Asberger's syndrome are not

officially diagnosed, but I, as well as his neurologist are fairly

certain, an EEG is scheduled and paperwork for the autism clinic is

done. I am jsut trying to get more information. Thank you,

[Guest guest]

Hi:-)

I will respond in greater detail to your e-mail in a few days. My daughter

is currently hospitalized and neurology is looking at her in detail. She

just turned two and we are trying to figure out what effects a current

illness has had on her neurological system and it will still be a while

before she is off of antiseizure medicine, Phenobarbital, and she is still

having some with drawl from other sedation drugs. Neurology has also put

her on a drug called resperitol (sp) to control " movements "

She does have benign hydrocephalus but, big heads run in both mine and my

husband's family. They did not have the technology to diagnosis this a

generation ago. Janelle's ventricles have shown some enlargement since her

last MRI. The current attending neurologist is going to review her case at

a meeting with 20 other pediatric neurologists and surgeons on Monday. It

is a regularly scheduled meeting the Chicago area ped Nuero doctors have. I

will find out what they have to say on Tuesday. My daughter has been very

ill which may have caused some issues but the nurologist is very optimistic

:-)!!!

I will keep in touch.

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

"

lostourkeysagain@...>

Reply-To: RSS-Support

Date: Thu, 20 Feb 2003 15:29:30 -0000

To: RSS-Support

Subject: (unknown)

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Thu, 20 Feb 2003 09:32:48 -0600

I am the mom of a 6 year old RSS boy. This is only the second time I

have posted something. My son has typical RSS features and health

issues, but he is also having several health related issues that are

not typically RSS. The reason for my message is to find out if any

other RSS kids have any of these other health problems that my son

seems to be showing. The main ones are hydrocephalus (treated with a

VP shunt), Mondini dysplasia (deformity of the cochlea), fluctuating

hearing loss, a high jugular bulb (his jugular vein loops through his

ear canal), " absence " seizures, and Asbergers syndrome (high

functiong autism). The seizures and the Asberger's syndrome are not

officially diagnosed, but I, as well as his neurologist are fairly

certain, an EEG is scheduled and paperwork for the autism clinic is

done. I am jsut trying to get more information. Thank you,

[Guest guest]

I will be their

Valentin

NJ, Surgeries 1999,2000,2001

mark roper wrote:

>hey everyone

>whose going to the new york to the a-s-a-p convention in july

>-mark

>

>

>

>_________________________________________________________________

>Hotmail now available on Australian mobile phones. Go to

>http://ninemsn.com.au/mobilecentral/hotmail_mobile.asp

>

>

>

>Help section: http://www.yahoogroups.com/help/

>

>NOTE: NCC refers to posts with No Chiari Content

>

>To Unsubscribe Yourself:

>chiari-unsubscribe

>

>WACMA Home: Http://www.wacma.com

>

>WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

I will be their

Valentin

NJ, Surgeries 1999,2000,2001

mark roper wrote:

>hey everyone

>whose going to the new york to the a-s-a-p convention in july

>-mark

>

>

>

>_________________________________________________________________

>Hotmail now available on Australian mobile phones. Go to

>http://ninemsn.com.au/mobilecentral/hotmail_mobile.asp

>

>

>

>Help section: http://www.yahoogroups.com/help/

>

>NOTE: NCC refers to posts with No Chiari Content

>

>To Unsubscribe Yourself:

>chiari-unsubscribe

>

>WACMA Home: Http://www.wacma.com

>

>WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

I will be their

Valentin

NJ, Surgeries 1999,2000,2001

mark roper wrote:

>hey everyone

>whose going to the new york to the a-s-a-p convention in july

>-mark

>

>

>

>_________________________________________________________________

>Hotmail now available on Australian mobile phones. Go to

>http://ninemsn.com.au/mobilecentral/hotmail_mobile.asp

>

>

>

>Help section: http://www.yahoogroups.com/help/

>

>NOTE: NCC refers to posts with No Chiari Content

>

>To Unsubscribe Yourself:

>chiari-unsubscribe

>

>WACMA Home: Http://www.wacma.com

>

>WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

I know exacly what you are going through. Before we went to NY to see Dr.

Harbison every doctor that we went to would accuse me of neglect. It got to

the point that Metro called children services on me. We had a very rude lady

coming to our house when ever she felt like it asking so many personal

questions. I also went to an attorney to see if we could sue the doctor that

delivered . The cord was wrapped around his neck five times. He also

asked me what causes RSS. I wasn't sure either so I simply said that no one

knows what causes it. I showed him some papers off the internet about the

syndrome to help him understand. Turned out that I couldn't sue because the

cord couldn't have been proved to cause all of his problems. BS. I know

first hand what its like when people look at you like you are the worse

mother around. All I can say is to ignore them. You are better than them

because you love your child with problems. Other people might put them up

for adoption. Hang in there. Sooner or later people will understand what

your going through. I know I sure do.

Liz (mother to 12lb 6oz 16months)

>

>Reply-To: RSS-Support

>To: RSS-Support

>Subject: (unknown)

>Date: Sat, 12 Apr 2003 08:27:21 -0000

>

>I need to ask a question. It is a sensitive subject but I need some

>feedback. I contacted an attorney with Disability Law Services this

>last week. He basically treated me like a number and spent 10

>minutes asking me questions regarding Zoe and why we are having

>problems getting services. Anyway, he asked me what the nature of

>Zoe's syndrome is. I didn't understand at first. Then he asked me

>if it was inherited or environmental. Well, from what I know RSS

>(for the most part)is not inherited so I was confused about the

>environmental part. He said that environmental means that it could

>have been prevented. He listed the following causes: drugs,

>drinking, household cleaners...

>I just couldn't think straight. After all of the doctors we have

>seen - not one said that I could have prevented this! I didn't

>drink, do drugs, or use household cleaning products that I hadn't

>used in my first pregnancy. I am so offended that I don't even want

>this person to represent us. To imply that I did something that

>caused my daughter to have RSS...I won't even use the words I wanted

>to say.

>What do you think of this? How do you explain why or how? This man

>must have experience with different types of sydromes/disorders given

>his job but why would he say such a thing? I have kept this to

>myself but it is just eating me up. I'm a little sensitive given

>that people look at me like I don't feed my daughter...but this is

>too much.

>

>

>

_________________________________________________________________

Add photos to your messages with MSN 8. Get 2 months FREE*.

http://join.msn.com/?page=features/featuredemail

[Guest guest]

Liz,

Are you planning on bringing to the convention? I know we

would all like to meet him and you!

Pattie

> I know exacly what you are going through. Before we went to NY to

see Dr.

> Harbison every doctor that we went to would accuse me of neglect.

It got to

> the point that Metro called children services on me. We had a very

rude lady

> coming to our house when ever she felt like it asking so many

personal

> questions. I also went to an attorney to see if we could sue the

doctor that

> delivered . The cord was wrapped around his neck five

times. He also

> asked me what causes RSS. I wasn't sure either so I simply said

that no one

> knows what causes it. I showed him some papers off the internet

about the

> syndrome to help him understand. Turned out that I couldn't sue

because the

> cord couldn't have been proved to cause all of his problems. BS. I

know

> first hand what its like when people look at you like you are the

worse

> mother around. All I can say is to ignore them. You are better

than them

> because you love your child with problems. Other people might put

them up

> for adoption. Hang in there. Sooner or later people will

understand what

> your going through. I know I sure do.

>

> Liz (mother to 12lb 6oz 16months)

>

>

>

>

>

>

> >From: " alaskarss "

> >Reply-To: RSS-Support

> >To: RSS-Support

> >Subject: (unknown)

> >Date: Sat, 12 Apr 2003 08:27:21 -0000

> >

> >I need to ask a question. It is a sensitive subject but I need

some

> >feedback. I contacted an attorney with Disability Law Services

this

> >last week. He basically treated me like a number and spent 10

> >minutes asking me questions regarding Zoe and why we are having

> >problems getting services. Anyway, he asked me what the nature of

> >Zoe's syndrome is. I didn't understand at first. Then he asked

me

> >if it was inherited or environmental. Well, from what I know RSS

> >(for the most part)is not inherited so I was confused about the

> >environmental part. He said that environmental means that it

could

> >have been prevented. He listed the following causes: drugs,

> >drinking, household cleaners...

> >I just couldn't think straight. After all of the doctors we have

> >seen - not one said that I could have prevented this! I didn't

> >drink, do drugs, or use household cleaning products that I hadn't

> >used in my first pregnancy. I am so offended that I don't even

want

> >this person to represent us. To imply that I did something that

> >caused my daughter to have RSS...I won't even use the words I

wanted

> >to say.

> >What do you think of this? How do you explain why or how? This

man

> >must have experience with different types of sydromes/disorders

given

> >his job but why would he say such a thing? I have kept this to

> >myself but it is just eating me up. I'm a little sensitive given

> >that people look at me like I don't feed my daughter...but this is

> >too much.

> >

> >

> >

>

>

> _________________________________________________________________

> Add photos to your messages with MSN 8. Get 2 months FREE*.

> http://join.msn.com/?page=features/featuredemail

[Guest guest]

Pattie,

Im not sure right now. I know that s other grandomother and his

father want to go but my mother and I are not sure yet. We are not sure if

we can finacially, emotionally, and physically get there. We are still

debating but we will tell you when we find out.

Liz (mother to 16mo. 12lb 6oz.)

>

>Reply-To: RSS-Support

>To: RSS-Support

>Subject: Re: (unknown)

>Date: Mon, 14 Apr 2003 02:50:57 -0000

>

>Liz,

>

> Are you planning on bringing to the convention? I know we

>would all like to meet him and you!

>

>Pattie

>

>

> > I know exacly what you are going through. Before we went to NY to

>see Dr.

> > Harbison every doctor that we went to would accuse me of neglect.

>It got to

> > the point that Metro called children services on me. We had a very

>rude lady

> > coming to our house when ever she felt like it asking so many

>personal

> > questions. I also went to an attorney to see if we could sue the

>doctor that

> > delivered . The cord was wrapped around his neck five

>times. He also

> > asked me what causes RSS. I wasn't sure either so I simply said

>that no one

> > knows what causes it. I showed him some papers off the internet

>about the

> > syndrome to help him understand. Turned out that I couldn't sue

>because the

> > cord couldn't have been proved to cause all of his problems. BS. I

>know

> > first hand what its like when people look at you like you are the

>worse

> > mother around. All I can say is to ignore them. You are better

>than them

> > because you love your child with problems. Other people might put

>them up

> > for adoption. Hang in there. Sooner or later people will

>understand what

> > your going through. I know I sure do.

> >

> > Liz (mother to 12lb 6oz 16months)

> >

> >

> >

> >

> >

> >

> > >From: " alaskarss "

> > >Reply-To: RSS-Support

> > >To: RSS-Support

> > >Subject: (unknown)

> > >Date: Sat, 12 Apr 2003 08:27:21 -0000

> > >

> > >I need to ask a question. It is a sensitive subject but I need

>some

> > >feedback. I contacted an attorney with Disability Law Services

>this

> > >last week. He basically treated me like a number and spent 10

> > >minutes asking me questions regarding Zoe and why we are having

> > >problems getting services. Anyway, he asked me what the nature of

> > >Zoe's syndrome is. I didn't understand at first. Then he asked

>me

> > >if it was inherited or environmental. Well, from what I know RSS

> > >(for the most part)is not inherited so I was confused about the

> > >environmental part. He said that environmental means that it

>could

> > >have been prevented. He listed the following causes: drugs,

> > >drinking, household cleaners...

> > >I just couldn't think straight. After all of the doctors we have

> > >seen - not one said that I could have prevented this! I didn't

> > >drink, do drugs, or use household cleaning products that I hadn't

> > >used in my first pregnancy. I am so offended that I don't even

>want

> > >this person to represent us. To imply that I did something that

> > >caused my daughter to have RSS...I won't even use the words I

>wanted

> > >to say.

> > >What do you think of this? How do you explain why or how? This

>man

> > >must have experience with different types of sydromes/disorders

>given

> > >his job but why would he say such a thing? I have kept this to

> > >myself but it is just eating me up. I'm a little sensitive given

> > >that people look at me like I don't feed my daughter...but this is

> > >too much.

> > >

> > >

> > >

> >

> >

> > _________________________________________________________________

> > Add photos to your messages with MSN 8. Get 2 months FREE*.

> > http://join.msn.com/?page=features/featuredemail

>

_________________________________________________________________

Help STOP SPAM with the new MSN 8 and get 2 months FREE*

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[Guest guest]

Liz,

It really is a great time to get encouraged and meet all ages of

great RSS kids. There are many ways to get help financially. I

think the emotional side of it will take care of itself when you get

there, it's a BLAST! As far as physically, I'm not sure what to say

there. I'm sure you wouldn't regret coming. We all look forward

to meeting You and .

Pattie

> > > I know exacly what you are going through. Before we went to NY

to

> >see Dr.

> > > Harbison every doctor that we went to would accuse me of

neglect.

> >It got to

> > > the point that Metro called children services on me. We had a

very

> >rude lady

> > > coming to our house when ever she felt like it asking so many

> >personal

> > > questions. I also went to an attorney to see if we could sue

the

> >doctor that

> > > delivered . The cord was wrapped around his neck five

> >times. He also

> > > asked me what causes RSS. I wasn't sure either so I simply said

> >that no one

> > > knows what causes it. I showed him some papers off the internet

> >about the

> > > syndrome to help him understand. Turned out that I couldn't sue

> >because the

> > > cord couldn't have been proved to cause all of his problems.

BS. I

> >know

> > > first hand what its like when people look at you like you are

the

> >worse

> > > mother around. All I can say is to ignore them. You are better

> >than them

> > > because you love your child with problems. Other people might

put

> >them up

> > > for adoption. Hang in there. Sooner or later people will

> >understand what

> > > your going through. I know I sure do.

> > >

> > > Liz (mother to 12lb 6oz 16months)

> > >

> > >

> > >

> > >

> > >

> > >

> > > >From: " alaskarss "

> > > >Reply-To: RSS-Support

> > > >To: RSS-Support

> > > >Subject: (unknown)

> > > >Date: Sat, 12 Apr 2003 08:27:21 -0000

> > > >

> > > >I need to ask a question. It is a sensitive subject but I

need

> >some

> > > >feedback. I contacted an attorney with Disability Law

Services

> >this

> > > >last week. He basically treated me like a number and spent 10

> > > >minutes asking me questions regarding Zoe and why we are

having

> > > >problems getting services. Anyway, he asked me what the

nature of

> > > >Zoe's syndrome is. I didn't understand at first. Then he

asked

> >me

> > > >if it was inherited or environmental. Well, from what I know

RSS

> > > >(for the most part)is not inherited so I was confused about

the

> > > >environmental part. He said that environmental means that it

> >could

> > > >have been prevented. He listed the following causes: drugs,

> > > >drinking, household cleaners...

> > > >I just couldn't think straight. After all of the doctors we

have

> > > >seen - not one said that I could have prevented this! I

didn't

> > > >drink, do drugs, or use household cleaning products that I

hadn't

> > > >used in my first pregnancy. I am so offended that I don't

even

> >want

> > > >this person to represent us. To imply that I did something

that

> > > >caused my daughter to have RSS...I won't even use the words I

> >wanted

> > > >to say.

> > > >What do you think of this? How do you explain why or how?

This

> >man

> > > >must have experience with different types of

sydromes/disorders

> >given

> > > >his job but why would he say such a thing? I have kept this

to

> > > >myself but it is just eating me up. I'm a little sensitive

given

> > > >that people look at me like I don't feed my daughter...but

this is

> > > >too much.

> > > >

> > > >

> > > >

> > >

> > >

> > >

_________________________________________________________________

> > > Add photos to your messages with MSN 8. Get 2 months FREE*.

> > > http://join.msn.com/?page=features/featuredemail

> >

>

>

> _________________________________________________________________

> Help STOP SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

[Guest guest]

Liz,

It really is a great time to get encouraged and meet all ages of

great RSS kids. There are many ways to get help financially. I

think the emotional side of it will take care of itself when you get

there, it's a BLAST! As far as physically, I'm not sure what to say

there. I'm sure you wouldn't regret coming. We all look forward

to meeting You and .

Pattie

> > > I know exacly what you are going through. Before we went to NY

to

> >see Dr.

> > > Harbison every doctor that we went to would accuse me of

neglect.

> >It got to

> > > the point that Metro called children services on me. We had a

very

> >rude lady

> > > coming to our house when ever she felt like it asking so many

> >personal

> > > questions. I also went to an attorney to see if we could sue

the

> >doctor that

> > > delivered . The cord was wrapped around his neck five

> >times. He also

> > > asked me what causes RSS. I wasn't sure either so I simply said

> >that no one

> > > knows what causes it. I showed him some papers off the internet

> >about the

> > > syndrome to help him understand. Turned out that I couldn't sue

> >because the

> > > cord couldn't have been proved to cause all of his problems.

BS. I

> >know

> > > first hand what its like when people look at you like you are

the

> >worse

> > > mother around. All I can say is to ignore them. You are better

> >than them

> > > because you love your child with problems. Other people might

put

> >them up

> > > for adoption. Hang in there. Sooner or later people will

> >understand what

> > > your going through. I know I sure do.

> > >

> > > Liz (mother to 12lb 6oz 16months)

> > >

> > >

> > >

> > >

> > >

> > >

> > > >From: " alaskarss "

> > > >Reply-To: RSS-Support

> > > >To: RSS-Support

> > > >Subject: (unknown)

> > > >Date: Sat, 12 Apr 2003 08:27:21 -0000

> > > >

> > > >I need to ask a question. It is a sensitive subject but I

need

> >some

> > > >feedback. I contacted an attorney with Disability Law

Services

> >this

> > > >last week. He basically treated me like a number and spent 10

> > > >minutes asking me questions regarding Zoe and why we are

having

> > > >problems getting services. Anyway, he asked me what the

nature of

> > > >Zoe's syndrome is. I didn't understand at first. Then he

asked

> >me

> > > >if it was inherited or environmental. Well, from what I know

RSS

> > > >(for the most part)is not inherited so I was confused about

the

> > > >environmental part. He said that environmental means that it

> >could

> > > >have been prevented. He listed the following causes: drugs,

> > > >drinking, household cleaners...

> > > >I just couldn't think straight. After all of the doctors we

have

> > > >seen - not one said that I could have prevented this! I

didn't

> > > >drink, do drugs, or use household cleaning products that I

hadn't

> > > >used in my first pregnancy. I am so offended that I don't

even

> >want

> > > >this person to represent us. To imply that I did something

that

> > > >caused my daughter to have RSS...I won't even use the words I

> >wanted

> > > >to say.

> > > >What do you think of this? How do you explain why or how?

This

> >man

> > > >must have experience with different types of

sydromes/disorders

> >given

> > > >his job but why would he say such a thing? I have kept this

to

> > > >myself but it is just eating me up. I'm a little sensitive

given

> > > >that people look at me like I don't feed my daughter...but

this is

> > > >too much.

> > > >

> > > >

> > > >

> > >

> > >

> > >

_________________________________________________________________

> > > Add photos to your messages with MSN 8. Get 2 months FREE*.

> > > http://join.msn.com/?page=features/featuredemail

> >

>

>

> _________________________________________________________________

> Help STOP SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

[Guest guest]

I HAD BOTOX!!!! I can't believe it I had to look at the senders email

address to make sure I didn't write this email and forget. (forgetting is

one of the things I do a lot) The first time I had botox was about 1 month

ago, 6 months post op. and i will have it again in two weeks. The doctor

gave it to me because I had these massive headaches after surgery (weren't

there b4) that wouldn't go away. Why did you have it? Beth from NY

[Guest guest]

I HAD BOTOX!!!! I can't believe it I had to look at the senders email

address to make sure I didn't write this email and forget. (forgetting is

one of the things I do a lot) The first time I had botox was about 1 month

ago, 6 months post op. and i will have it again in two weeks. The doctor

gave it to me because I had these massive headaches after surgery (weren't

there b4) that wouldn't go away. Why did you have it? Beth from NY

[Guest guest]

I HAD BOTOX!!!! I can't believe it I had to look at the senders email

address to make sure I didn't write this email and forget. (forgetting is

one of the things I do a lot) The first time I had botox was about 1 month

ago, 6 months post op. and i will have it again in two weeks. The doctor

gave it to me because I had these massive headaches after surgery (weren't

there b4) that wouldn't go away. Why did you have it? Beth from NY

[Guest guest]

Byk

Jacquie H

(unknown)

Sara's last name is???

Tamara

mom to Ebony, 5 years old, asd, adhd, bipolar

and , 2, polish (lol)

wife to Terry

_________________________________________________________________

STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

[Guest guest]

Byk

Jacquie H

(unknown)

Sara's last name is???

Tamara

mom to Ebony, 5 years old, asd, adhd, bipolar

and , 2, polish (lol)

wife to Terry

_________________________________________________________________

STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

[Guest guest]

In a message dated 5/10/03 10:19:42 PM Eastern Daylight Time,

tamara_b73@... writes:

> HAPPY MOTHER'S DAY!!!!!!!!!!!!!!!!!!

>

> I hope everyone has a very relaxing, peaceful mother's day. We all deserve

> it.....even if we don't get it. lol

>

>

Thanks and the same to you and all the wonderful moms here.

The Grammas & Keion