questions to those guru's research junkies..

[Guest guest]

I am writing to share some information and dialog with you all.

While I have only been here on this board for 6+ years, I have seen an

increasing number of people either just being diagnosed with Achalasia or there

is an increase in the incidence.

But what disturbs me is the quantities of people who are going to " just any "

surgeon and coming out with less than favorable results.

Even more disturbing is the Facebook page. I have witnessed a mom posting about

their young child that is on number 11 for botox.. Something NEVER recommended

for children.  

For those of you with experience, a gift for research and knowledge, compassion,

etc.  What is your position when you see a post on a public page like this?

Do you feel compelled to jump in and help direct these folks to what they

" should be " looking for, do you direct them here to our databases, do you jump

in or do you just close the page? I realize we cannot fix the world of

Achalasians, but  when I see the mother of a child heading in a negative

direction, it not only tugs at my heart strings but disturbs my sense of

propriety.

Thanks..

Carolyn

mom of Cameron

myo'd and fundo'd 05

________________________________________________________________________________\

____________

[Guest guest]

________________________________

From: Carolyn <wooleeacre@...>

achalasia <achalasia >

Sent: Monday, August 22, 2011 5:10 PM

Subject: questions to those guru's research junkies..

 

I am writing to share some information and dialog with you all.

While I have only been here on this board for 6+ years, I have seen an

increasing number of people either just being diagnosed with Achalasia or there

is an increase in the incidence.

But what disturbs me is the quantities of people who are going to " just any "

surgeon and coming out with less than favorable results.

Even more disturbing is the Facebook page. I have witnessed a mom posting about

their young child that is on number 11 for botox.. Something NEVER recommended

for children.  

For those of you with experience, a gift for research and knowledge, compassion,

etc.  What is your position when you see a post on a public page like this?

Do you feel compelled to jump in and help direct these folks to what they

" should be " looking for, do you direct them here to our databases, do you jump

in or do you just close the page? I realize we cannot fix the world of

Achalasians, but  when I see the mother of a child heading in a negative

direction, it not only tugs at my heart strings but disturbs my sense of

propriety.

Thanks..

Carolyn

mom of Cameron

myo'd and fundo'd 05

__________________________________________________________

[Guest guest]

Oops. Technical difficulties sent a blank message.

I saw the message about 11 botox injections.  Another message indicates 17

dilations. #6268   Also there were 16, one every 4 months. #62519 So, there

was one more since the earlier message.

There are many parts of the story that make me believe that there is a

communication problem. When I read " xray " I wondered if it meant " barium

swallow " . I don't know. The latter makes sense and the former does not. " Top of

the esophagus " may mean " lower esophageal sphincter " and the bottom may  mean

" pyloric sphincter " .  " Myotomy " for surgery of the upper esophageal sphincter

is something that has been talked about here, but that's not something we hear

about a lot here.

There is a serious need for a professional advocate for children in cases like

this.

________________________________

From: Hoffman <rp518dan@...>

" achalasia " <achalasia >

Sent: Tuesday, August 23, 2011 9:54 AM

Subject: Re: questions to those guru's research junkies..

 

________________________________

From: Carolyn <wooleeacre@...>

achalasia <achalasia >

Sent: Monday, August 22, 2011 5:10 PM

Subject: questions to those guru's research junkies..

 

I am writing to share some information and dialog with you all.

While I have only been here on this board for 6+ years, I have seen an

increasing number of people either just being diagnosed with Achalasia or there

is an increase in the incidence.

But what disturbs me is the quantities of people who are going to " just any "

surgeon and coming out with less than favorable results.

Even more disturbing is the Facebook page. I have witnessed a mom posting about

their young child that is on number 11 for botox.. Something NEVER recommended

for children.  

For those of you with experience, a gift for research and knowledge, compassion,

etc.  What is your position when you see a post on a public page like this?

Do you feel compelled to jump in and help direct these folks to what they

" should be " looking for, do you direct them here to our databases, do you jump

in or do you just close the page? I realize we cannot fix the world of

Achalasians, but  when I see the mother of a child heading in a negative

direction, it not only tugs at my heart strings but disturbs my sense of

propriety.

Thanks..

Carolyn

mom of Cameron

myo'd and fundo'd 05

__________________________________________________________