Re: I'm in utter shock/NNY Autism Center

[Guest guest]

Wow, all of you say you've had such great experiences and makes me wonder, " Why

me? "

From: Aut2BMiracles@... <Aut2BMiracles@...>

Subject: I'm in utter shock/NNY Autism Center

Date: Thursday, March 25, 2010, 10:50 AM

 

Your experience is unfortunate. I wonder if somebody was just having a

really bad day and it didn't have much to do with you? I know that's not an

excuse, but it does happen to all of us.

I will tell you my experience with the NNY Autism Center has been top of

the line. Kathy is AMAZING and does so much for our kids. Sheri is also

very dedicated and willing to share her experiences with her own children.

As for Dr. Bruce, they don't come any better. When my son had his first

seizure, I was a wreck. It happened in the evening and he had to go by

ambulance to the local hospital. I am located no where near either the NY or

Texas offices, but I called Dr. Bruce's emergency number. I needed him to

talk to the doctor and to answer questions about Connor's condition and

medications. Normally, I can spit out the details of the protocol in my sleep,

but I was such a mess that I temporarily lost all my verbal skills and

sounded like a blubbering idiot. I just couldn't do it myself. (I was totally

in " mom " mode and I had to let the doctors be the doctors in spite of how

most of us become accustomed to knowing far more than we ever wanted to

about immune disorders and autism). Dr. Bruce called the ER docs late into the

night going over Connor's background. The next day Kathy and I spent a

long time on the phone as well sorting things out. I would not have been

able to do it without He or Kathy.

(BTW...Connor has been seizure free for over a year now!)

My advise would be to talk directly with Kathy if you can.

Just when I thought I had nothing left to say and it was time to leave the

list.......< smiles>

Sharon

[Guest guest]

My friend here in Ireland had your experience,she was soo upset,its not just

you

On Thu, Mar 25, 2010 at 5:11 PM, Briffa SeventySeven <briffa77@...>wrote:

>

>

> Wow, all of you say you've had such great experiences and makes me wonder,

> " Why me? "

>

>

>

> From: Aut2BMiracles@... <Aut2BMiracles%40aol.com> <

> Aut2BMiracles@... <Aut2BMiracles%40aol.com>>

> Subject: I'm in utter shock/NNY Autism Center

> <%40>

> Date: Thursday, March 25, 2010, 10:50 AM

>

>

>

>

> Your experience is unfortunate. I wonder if somebody was just having a

> really bad day and it didn't have much to do with you? I know that's not an

>

> excuse, but it does happen to all of us.

>

> I will tell you my experience with the NNY Autism Center has been top of

> the line. Kathy is AMAZING and does so much for our kids. Sheri is also

> very dedicated and willing to share her experiences with her own children.

> As for Dr. Bruce, they don't come any better. When my son had his first

> seizure, I was a wreck. It happened in the evening and he had to go by

> ambulance to the local hospital. I am located no where near either the NY

> or

> Texas offices, but I called Dr. Bruce's emergency number. I needed him to

> talk to the doctor and to answer questions about Connor's condition and

> medications. Normally, I can spit out the details of the protocol in my

> sleep,

> but I was such a mess that I temporarily lost all my verbal skills and

> sounded like a blubbering idiot. I just couldn't do it myself. (I was

> totally

> in " mom " mode and I had to let the doctors be the doctors in spite of how

> most of us become accustomed to knowing far more than we ever wanted to

> about immune disorders and autism). Dr. Bruce called the ER docs late into

> the

> night going over Connor's background. The next day Kathy and I spent a

> long time on the phone as well sorting things out. I would not have been

> able to do it without He or Kathy.

> (BTW...Connor has been seizure free for over a year now!)

>

> My advise would be to talk directly with Kathy if you can.

>

> Just when I thought I had nothing left to say and it was time to leave the

> list.......< smiles>

>

> Sharon

>

>

[Guest guest]

I had a similar experience many years ago with Dr. G's office. It was

very upsetting and, in a different world, we would never have put

ourselves and our child in a position to be treated like that again.

BUT, my very smart husband convinced me that if Dr. G was the basket we

wanted to put our eggs in, I needed to get over it. So now my husband

handles most of the calls and our child is reaping the benefits.

Unfortunately, you can't look at it as just a " business " and take your

business elsewhere because there is no elsewhere. If you think

makes sense, come to the list and complain and we will happily listen

and support. But get your thick Mommy skin on and get your child seen

by Dr. G or Dr. R. It's worth it. The best of luck to you and your

precious child.

Briffa SeventySeven wrote:

>

>

> Wow, all of you say you've had such great experiences and makes me

> wonder, " Why me? "

>

>

>

> From: Aut2BMiracles@... <mailto:Aut2BMiracles%40aol.com>

> <Aut2BMiracles@... <mailto:Aut2BMiracles%40aol.com>>

> Subject: I'm in utter shock/NNY Autism Center

> <mailto:%40>

> Date: Thursday, March 25, 2010, 10:50 AM

>

> Â

>

> Your experience is unfortunate. I wonder if somebody was just having a

> really bad day and it didn't have much to do with you? I know that's

> not an

> excuse, but it does happen to all of us.

>

> I will tell you my experience with the NNY Autism Center has been top of

> the line. Kathy is AMAZING and does so much for our kids. Sheri is also

> very dedicated and willing to share her experiences with her own

> children.

> As for Dr. Bruce, they don't come any better. When my son had his first

> seizure, I was a wreck. It happened in the evening and he had to go by

> ambulance to the local hospital. I am located no where near either the

> NY or

> Texas offices, but I called Dr. Bruce's emergency number. I needed him to

> talk to the doctor and to answer questions about Connor's condition and

> medications. Normally, I can spit out the details of the protocol in

> my sleep,

> but I was such a mess that I temporarily lost all my verbal skills and

> sounded like a blubbering idiot. I just couldn't do it myself. (I was

> totally

> in " mom " mode and I had to let the doctors be the doctors in spite of how

> most of us become accustomed to knowing far more than we ever wanted to

> about immune disorders and autism). Dr. Bruce called the ER docs late

> into the

> night going over Connor's background. The next day Kathy and I spent a

> long time on the phone as well sorting things out. I would not have been

> able to do it without He or Kathy.

> (BTW...Connor has been seizure free for over a year now!)

>

> My advise would be to talk directly with Kathy if you can.

>

> Just when I thought I had nothing left to say and it was time to leave

> the

> list.......< smiles>

>

> Sharon

>

>

[Guest guest]

So it's a case of they know they're your lifeline so they'll strip you of your

dignity?

>

> From: Aut2BMiracles@... <mailto:Aut2BMiracles%40aol.com>

> <Aut2BMiracles@... <mailto:Aut2BMiracles%40aol.com>>

> Subject: I'm in utter shock/NNY Autism Center

> <mailto:%40>

> Date: Thursday, March 25, 2010, 10:50 AM

>

> Â

>

> Your experience is unfortunate. I wonder if somebody was just having a

> really bad day and it didn't have much to do with you? I know that's

> not an

> excuse, but it does happen to all of us.

>

> I will tell you my experience with the NNY Autism Center has been top of

> the line. Kathy is AMAZING and does so much for our kids. Sheri is also

> very dedicated and willing to share her experiences with her own

> children.

> As for Dr. Bruce, they don't come any better. When my son had his first

> seizure, I was a wreck. It happened in the evening and he had to go by

> ambulance to the local hospital. I am located no where near either the

> NY or

> Texas offices, but I called Dr. Bruce's emergency number. I needed him to

> talk to the doctor and to answer questions about Connor's condition and

> medications. Normally, I can spit out the details of the protocol in

> my sleep,

> but I was such a mess that I temporarily lost all my verbal skills and

> sounded like a blubbering idiot. I just couldn't do it myself. (I was

> totally

> in " mom " mode and I had to let the doctors be the doctors in spite of how

> most of us become accustomed to knowing far more than we ever wanted to

> about immune disorders and autism). Dr. Bruce called the ER docs late

> into the

> night going over Connor's background. The next day Kathy and I spent a

> long time on the phone as well sorting things out. I would not have been

> able to do it without He or Kathy.

> (BTW...Connor has been seizure free for over a year now!)

>

> My advise would be to talk directly with Kathy if you can.

>

> Just when I thought I had nothing left to say and it was time to leave

> the

> list.......< smiles>

>

> Sharon

>

>

[Guest guest]

She was more that just annoyed. It borderlined on professional misconduct.

>

> From: Aut2BMiracles@ aol.com <mailto:Aut2BMiracl es%40aol. com>

> <Aut2BMiracles@ aol.com <mailto:Aut2BMiracl es%40aol. com>>

> Subject: I'm in utter shock/NNY Autism Center

> groups (DOT) com <mailto:% 40groups. com>

> Date: Thursday, March 25, 2010, 10:50 AM

>

> Â

>

> Your experience is unfortunate. I wonder if somebody was just having a

> really bad day and it didn't have much to do with you? I know that's

> not an

> excuse, but it does happen to all of us.

>

> I will tell you my experience with the NNY Autism Center has been top of

> the line. Kathy is AMAZING and does so much for our kids. Sheri is also

> very dedicated and willing to share her experiences with her own

> children.

> As for Dr. Bruce, they don't come any better. When my son had his first

> seizure, I was a wreck. It happened in the evening and he had to go by

> ambulance to the local hospital. I am located no where near either the

> NY or

> Texas offices, but I called Dr. Bruce's emergency number. I needed him to

> talk to the doctor and to answer questions about Connor's condition and

> medications. Normally, I can spit out the details of the protocol in

> my sleep,

> but I was such a mess that I temporarily lost all my verbal skills and

> sounded like a blubbering idiot. I just couldn't do it myself. (I was

> totally

> in " mom " mode and I had to let the doctors be the doctors in spite of how

> most of us become accustomed to knowing far more than we ever wanted to

> about immune disorders and autism). Dr. Bruce called the ER docs late

> into the

> night going over Connor's background. The next day Kathy and I spent a

> long time on the phone as well sorting things out. I would not have been

> able to do it without He or Kathy.

> (BTW...Connor has been seizure free for over a year now!)

>

> My advise would be to talk directly with Kathy if you can.

>

> Just when I thought I had nothing left to say and it was time to leave

> the

> list.......< smiles>

>

> Sharon

>

>

[Guest guest]

>

> From: Aut2BMiracles@ aol.com <mailto:Aut2BMiracl es%40aol. com>

> <Aut2BMiracles@ aol.com <mailto:Aut2BMiracl es%40aol. com>>

> Subject: I'm in utter shock/NNY Autism Center

> groups (DOT) com <mailto:% 40groups. com>

> Date: Thursday, March 25, 2010, 10:50 AM

>

> Â

>

> Your experience is unfortunate. I wonder if somebody was just having a

> really bad day and it didn't have much to do with you? I know that's

> not an

> excuse, but it does happen to all of us.

>

> I will tell you my experience with the NNY Autism Center has been top of

> the line. Kathy is AMAZING and does so much for our kids. Sheri is also

> very dedicated and willing to share her experiences with her own

> children.

> As for Dr. Bruce, they don't come any better. When my son had his first

> seizure, I was a wreck. It happened in the evening and he had to go by

> ambulance to the local hospital. I am located no where near either the

> NY or

> Texas offices, but I called Dr. Bruce's emergency number. I needed him to

> talk to the doctor and to answer questions about Connor's condition and

> medications. Normally, I can spit out the details of the protocol in

> my sleep,

> but I was such a mess that I temporarily lost all my verbal skills and

> sounded like a blubbering idiot. I just couldn't do it myself. (I was

> totally

> in " mom " mode and I had to let the doctors be the doctors in spite of how

> most of us become accustomed to knowing far more than we ever wanted to

> about immune disorders and autism). Dr. Bruce called the ER docs late

> into the

> night going over Connor's background. The next day Kathy and I spent a

> long time on the phone as well sorting things out. I would not have been

> able to do it without He or Kathy.

> (BTW...Connor has been seizure free for over a year now!)

>

> My advise would be to talk directly with Kathy if you can.

>

> Just when I thought I had nothing left to say and it was time to leave

> the

> list.......< smiles>

>

> Sharon

>

>

[Guest guest]

I love Dr. G and what he has done for my son and our family. I have, at

times, felt like the bedside manner in his office leaves A LOT to be

desired. What I’ve conjectured is that he is very serious about his work,

and he/his staff really want/need to make sure that the families they are

working with are just as serious and committed to healing their children. I

have not had the same rude experience as NNY Autism Center, but some that

were close. I remind myself that they are overworked and overstressed on

this often thankless and UPHILL BATTLE against a formidable illness with

very little support from the medical community, the community at large, our

insurance system, etc. It’s not easy being a parent of a sick child, but it

can’t be easy trying to treat them, either.

I’m not excusing the “behavior”, just saying I can understand how it could

happen.

Kristy Nardini

TazziniTM Stainless Steel Bottles

www.tazzini.com

kristy@...

Phone: 858.243.1929

Fax: 858.724.1418

P Please consider the environment before printing this email.

From: [mailto: ] On Behalf Of Briffa

SeventySeven

Sent: Thursday, March 25, 2010 11:33 AM

Subject: Re: I'm in utter shock/NNY Autism Center

So it's a case of they know they're your lifeline so they'll strip you of

your dignity?

>

> From: Aut2BMiracles@... <mailto:Aut2BMiracles%40aol.com>

<mailto:Aut2BMiracles%40aol.com>

> <Aut2BMiracles@... <mailto:Aut2BMiracles%40aol.com>

<mailto:Aut2BMiracles%40aol.com>>

> Subject: I'm in utter shock/NNY Autism Center

> <mailto:%40>

<mailto:%40>

> Date: Thursday, March 25, 2010, 10:50 AM

>

> Â

>

> Your experience is unfortunate. I wonder if somebody was just having a

> really bad day and it didn't have much to do with you? I know that's

> not an

> excuse, but it does happen to all of us.

>

> I will tell you my experience with the NNY Autism Center has been top of

> the line. Kathy is AMAZING and does so much for our kids. Sheri is also

> very dedicated and willing to share her experiences with her own

> children.

> As for Dr. Bruce, they don't come any better. When my son had his first

> seizure, I was a wreck. It happened in the evening and he had to go by

> ambulance to the local hospital. I am located no where near either the

> NY or

> Texas offices, but I called Dr. Bruce's emergency number. I needed him to

> talk to the doctor and to answer questions about Connor's condition and

> medications. Normally, I can spit out the details of the protocol in

> my sleep,

> but I was such a mess that I temporarily lost all my verbal skills and

> sounded like a blubbering idiot. I just couldn't do it myself. (I was

> totally

> in " mom " mode and I had to let the doctors be the doctors in spite of how

> most of us become accustomed to knowing far more than we ever wanted to

> about immune disorders and autism). Dr. Bruce called the ER docs late

> into the

> night going over Connor's background. The next day Kathy and I spent a

> long time on the phone as well sorting things out. I would not have been

> able to do it without He or Kathy.

> (BTW...Connor has been seizure free for over a year now!)

>

> My advise would be to talk directly with Kathy if you can.

>

> Just when I thought I had nothing left to say and it was time to leave

> the

> list.......< smiles>

>

> Sharon

>

>

[Guest guest]

I need to just let it go now. It's not going to help anything to keep thinking

about it.  I just wasn't expecting anything like that to happen. 

There's so much about this protocol that makes sense - as I myself have very

high HHV-6 and EBV IgG antibodies, a high CRP, ADHD and CFIDS. (I have also

suffered other reactivations such as shingles and, more commonly,cold sores. I

most definitely have a neuroimmune dysfunction. I've had visual disturbances in

the past and limb numbness - had an MRI of the brain, no lesions seen. Haven't

done the spine yet. However since I began taking Imunovir and Juice Plus the

numbness in most of my arm and hand went away. I also have increased energy and

a LOT less fatigue. I can pick up my daughter, who's two, with no problem now. 

For a while there I needed somebody to pick her up and put her on the changing

table in the early morning and by the end of the night.) 

I also have Hashimoto's Thyroiditis - an autoimmune.

I'm also a stutterer - and I wonder if these direct viral or autoimmune assaults

affected Broca's Area (the speech center of the brain.) Interestingly, when I

sing I don't stutter, and I know a girl with autism who can sing the words to

the songs she likes but has difficulty speaking normally.

Also, when I stutter I go " monochannel " as Temple Grandin likes to call it. I

can't look at the person AND get the words out.  I have to avert my eye gaze.

(As people with autism/Aspergers have to do all the time.)

I wrote an email to one of the directors of research at Columbia University, as

they research both conditions (stuttering and autism.) He said that he'd like to

meet with me when I get the chance to get down there. Any other parents here

stutter, too?

It makes so much sense that this would be genetic, or somehow transfered to my

son in some way. 

Also, the temporal lobes of the brain. When my son did therapeutic listening he

improved in a variety of areas. 

Thanks everybody.

>

> From: Aut2BMiracles@ aol.com <mailto:Aut2BMiracl es%40aol. com>

<mailto:Aut2BMiracl es%40aol. com>

> <Aut2BMiracles@ aol.com <mailto:Aut2BMiracl es%40aol. com>

<mailto:Aut2BMiracl es%40aol. com>>

> Subject: I'm in utter shock/NNY Autism Center

> groups (DOT) com <mailto:% 40groups. com>

<mailto:% 40groups. com>

> Date: Thursday, March 25, 2010, 10:50 AM

>

> Â

>

> Your experience is unfortunate. I wonder if somebody was just having a

> really bad day and it didn't have much to do with you? I know that's

> not an

> excuse, but it does happen to all of us.

>

> I will tell you my experience with the NNY Autism Center has been top of

> the line. Kathy is AMAZING and does so much for our kids. Sheri is also

> very dedicated and willing to share her experiences with her own

> children.

> As for Dr. Bruce, they don't come any better. When my son had his first

> seizure, I was a wreck. It happened in the evening and he had to go by

> ambulance to the local hospital. I am located no where near either the

> NY or

> Texas offices, but I called Dr. Bruce's emergency number. I needed him to

> talk to the doctor and to answer questions about Connor's condition and

> medications. Normally, I can spit out the details of the protocol in

> my sleep,

> but I was such a mess that I temporarily lost all my verbal skills and

> sounded like a blubbering idiot. I just couldn't do it myself. (I was

> totally

> in " mom " mode and I had to let the doctors be the doctors in spite of how

> most of us become accustomed to knowing far more than we ever wanted to

> about immune disorders and autism). Dr. Bruce called the ER docs late

> into the

> night going over Connor's background. The next day Kathy and I spent a

> long time on the phone as well sorting things out. I would not have been

> able to do it without He or Kathy.

> (BTW...Connor has been seizure free for over a year now!)

>

> My advise would be to talk directly with Kathy if you can.

>

> Just when I thought I had nothing left to say and it was time to leave

> the

> list.......< smiles>

>

> Sharon

>

>

[Guest guest]

I have to respectfully disagree with this line of reasoning. I do not let anyone

mistreat me or my family, even if that is the only place on the earth to go for

a service. Here is my reasoning behind this:

If enough people say " No " to the misconduct or unprofessionalism and make a

stand to say that this is unacceptable, then they will begin to lose business

and perhaps look into the reasons why. If they do not care to look into why they

are losing business, then someone/somewhere will eventually take over their

expertise. For me, absolutely nothing in this world is worth letting someone be

ugly to me or mistreat me.

I guess I am just different in the way that I think. If one door closes in a

situation like this, ten another door will open in the right direction.

Life is too short to be mistreated.

[Guest guest]

Ok, i am glad you brought this up. I am a long patient of Dr. , been

seeing for since 2007. I love him, I am very happy. (PLEASE read the entire

post before drawing any sudden conclusions you might first have, the END is the

most important conclusion of the story I have!! :-)

I know many people on here are patients of Dr. Goldberg and this is NOT an

expression of what he is like but rather dealing with his office andl

receptionist (AT THE TIME) was beyond a bad experience. The receptionist

forced me to wait on the back burner to see him for 1 full after getting my

neuroSPECT scan in 2006. And the woman never had me see him after all that

waiting!!

I was often in tears, or eventually yelling back and even found myself

accidently cursing--and I am normally a very easy going polite person.

I would wait for four month intervals between checking up to see if there was an

opening, and I would flat out be snipped and even yelled at for calling and told

to quit calling and she would call me back on a specific day and NEVER ever did

she. When I would timidly mention it she would yell-yes yell at me again. They

(she) would not answer basic questions, nothing, she would essentially hang up

on me. I hated it, absolutely hated it! My illness progressed a LOT during

that time just from dealing with the stress of not knowing and being kept on

hold and yelled at because ai was just wanting to get better. Finally, after

another episode of sobbing I cancelled the appointment. The individual (I won't

repest the name) in charge/receptionist at the time got mad about that and said

she would not give my the few hundred dollars I paid to hold the appointment

back. And would not give my medical documents back. My health advocate finally

called pointing out it was illegal to hold the papers and would evn sue if

nessecary. She mailed the papers back... and we cancelled the down payment with

visa because she would not refund it.

THEN I happed to learn of Dr.

[Guest guest]

I'll put up with any amount of attitude. I got my little girl back in my world,

and she is happier and healthier. No one could have done for my girl what the

people in NY did. When Marcia Hinds said " life changing " she wasn't kidding.

-

>

> I have to respectfully disagree with this line of reasoning. I do not let

anyone mistreat me or my family, even if that is the only place on the earth to

go for a service. Here is my reasoning behind this:

> If enough people say " No " to the misconduct or unprofessionalism and make a

stand to say that this is unacceptable, then they will begin to lose business

and perhaps look into the reasons why. If they do not care to look into why they

are losing business, then someone/somewhere will eventually take over their

expertise. For me, absolutely nothing in this world is worth letting someone be

ugly to me or mistreat me.

> I guess I am just different in the way that I think. If one door closes in a

situation like this, ten another door will open in the right direction.

> Life is too short to be mistreated.

>

>