Jump to content
RemedySpot.com

Re: EOHarm] Thoughtful House not so thoughtful

Rate this topic


Guest guest

Recommended Posts

Guest guest

-- I had tele conf with them today. They were VERY interested in

previous labs that showed nothing. Although I was clear I wanted pill

cam in my initiall dialogue, and patient history I was told they

first do colonoscopy with biopsy.[ after being promised the pill cam]

Then if nothing shows they do pill cam. Why put the kids through that

in the first place? Despite what they find they use anti-inflamatories

[ illeitis, collitis,ect] So why not use anti -inflamitories and

forego the invasive meltdown?My take is they are doing research and

want documents that indicate nothing was found wrong,

genetically,neurologically,and cardiologically.To substanciate thier

research. I do not believe there is no risk to the children during

sedation for these invasive services. My son was sedated at age 3

VERY carefully by genetics whom claimed that mitochondrial folks need

to be sedated carefully or they do not wake up- I feel again we are

being exploited for research that we are expected to pay

financially,and pay personally[so what if kid regresses or dies if

they have thier research]I would do the vit-a for measles and anti

inflamitories, if you feel gut is inflamed rather than put the child

through more hell.

I definately felt I was Bamboozled,

Dot

In EOHarm , Vera <sircarlito@...> wrote:

>

> Hi

>

> You can contact Dr. Kartzinel through Thoughtful House. The

nuber is

> 512-732-8400. Ask for Marnie or Barbara they can help you.

>

> Vera

> Herman Fudenberg <nitrf@...> wrote:

> Ackerman,

>

> How do I contact Dr. Kurtzinel??

>

>

>

>

> Sincerely,

>

> H.H. Fudenberg, M.D., D.D.G., I.O.M.

> 226 Edgewater Road

> Inman, SC 29349

> 864-592-8076

> nitrf@hotmailcom

>

> ---------------------------------

> From: " Ackerman " <tacanow@...>

> Reply-EOHarm

> <EOHarm >

> Subject: Kirby & Dr Jerry Kartzinel are coming to

Southern California

> Date: Tue, 21 Mar 2006 11:40:27 -0800

>

> p.MsoNormal, li.MsoNormal, div.MsoNormal {margin:0in;margin-

bottom:.0001pt;font-size:12.0pt;font-family:Tahoma;} p.MsoAutoSig,

li.MsoAutoSig, div.MsoAutoSig {margin:0in;margin-bottom:.0001pt;font-

size:12.0pt;font-family:'Times New Roman';} p {margin-

right:0in;margin-left:0in;font-size:12.0pt;font-family:'Times New

Roman';} span.EmailStyle17 {font-family:Tahoma;color:#333399;}

@page Section1 {size:8.5in 11.0in;margin:.75in 63.35pt 45.35pt

1.25in;} div.Section1 {page:Section1;}

>

> TACA is pleased to welcome back

> Dr. Jerry Kartzinel & Kirby

> Autism & Medical Breakthroughs

> Dr Jerry Kartzinel �

> Dr Kartzinel�s practice is solely devoted to the research and

treatment of Autism and other neurodegenerative disorders. His

approach includes a comprehensive history and physical exam, and

laboratory investigations that seek to find what is biologically

different in a child. Once found, he implements therapeutic

interventions and monitors closely how they affect restoration of

health and behaviors. His current research interests include quelling

chronic inflammation and the augmentation of the methylation

pathway. More info www.thougthfulhouse.org

> Dr Kartzinel will outline COMMON MEDICAL PROBLEMS & TREATMENT

OPTIONS FOR CHILDREN WITH AUTISM.

> Kirby

> Author of the groundbreaking book �Evidence of Harm�.

Kirby has been a professional journalist for over 15 years, and has

written for The New York Times for the past eight years. Kirby was a

contracted writer with the weekly City Section at The Times, where he

covered public health, local politics, art and culture, film and

theater, architecture, zoning and land use, among many other

subjects.

> More info: www.evidenceofharm.com

> will present the findings from his book and the latest

news.

> Important information and guidelines from this seminar are

for both PARENTS and Physicians- More special guests will be

announced in the next week

> Date: Saturday April 29, 2006 Time: 9:30am �

4:30pm (lunch on your own)

> Location: Vineyard Newport Church � 102 East Baker St, Costa

Mesa, CALIFORNIA

> REGISTRATION before April 20th: Parents: $35 per person /

Professionals $50 per person

> After April 20th and On-Site: $45 per person - PARENTS / $70 per

person PROFESSIONALS -

>

> Registration: Please make your check out to TACA

> Mail to: TACA � Medical Seminar PO Box 12409 Newport Beach, CA

92658-2409

> Or register online at : http://www.tacanow.com/shop.htm

>

> If you are MAILING YOUR REGISTRATION: BE SURE TO INCLUDE YOUR

INFORMATION:

> Name of each attendee Email address (confirmation will be

sent via EMAIL ONLY)

> Mailing Address, City, State, ZIP Code and Phone Number

>

> Exhibitors: This important seminar will also offer exhibiting

opportunities for vendors. Please contact Ackerman at 949-640-

4401 for more information.

>

> Babysitting: Unfortunately no babysitting is available for this

event

> Please note: This seminar is filling up rapidly. Please be sure

to send in your registration

>

> Seminar funding and assistance is provided by TACA (Talk About

Curing Autism) � Families helping Families.

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Dot, that's too bad. It sucks when we are having to prove what we know

to the point of screwing over our kids yet again.

Sorry for the harsh use of words, just fed up with it all right now,

Debi

Link to comment
Share on other sites

Guest guest

--Deb, My whole interpretation was that Dr. K was doing a study and

wanted to fit my son into it despite my, or my sons wishes. My son

does not wish to be sedated and I feel he has a right to chose and

have input regarding his body. I am not saying the guy is a boob or

anything like that .I was told by reception they did pill cam, I was

clear I ONLY wanted that. If they had been up front with me I

wouldn't have bothered. I suppose its no risk to them to dangle pill

cam and then when you say no to colonoscopy, It is after your phone

consult. Which is $415.00 per hour.More exploitation of the children.-

In EOHarm , " Debi " <fightingautism@...> wrote:

>

> Dot, that's too bad. It sucks when we are having to prove what we

know

> to the point of screwing over our kids yet again.

>

> Sorry for the harsh use of words, just fed up with it all right now,

> Debi

>

Link to comment
Share on other sites

Guest guest

>I would do the vit-a for measles and anti inflamitories, if you feel gut is inflamed rather than put the child through more hell.<

Vit-a? What is that and where can we get it? I appreciate your sharing your experience and opinion. I also know children who have been treated by doctors from the Thoughtful House who have responded well. I am giving credence to your statements about the danger of the procedure they perform on our kids with GI problems like my grandson has.

C.

Link to comment
Share on other sites

Guest guest

--Vitamin A was used for measles long ago. There is a protocol on

Autism_mercury. Megson has done some work on this.I am sure lots of

folks have great success with any clinic willing to use biomed

treatments with these kids. I have had lots of luck with biomed

[especially chelation]I just didn't appreciate the bait and switch,

Or the fact that my son's input regarding his body was not a

concideration[since he is verbal,capable of functioning in reg. ed

class unassisted]It was explained to me that if colonoscopy with

biopsy showed nothing than they would use pill cam. Why not just do

that in the First place as it is non-invasive[especially when I was

very clear in the first place that I would only accept that at this

time,and told I would be recieving that. Bait and switch.

- In EOHarm , " Carlson " <cathykay@...> wrote:

>

> >I would do the vit-a for measles and anti

> inflamitories, if you feel gut is inflamed rather than put the

child

> through more hell.<

>

> Vit-a? What is that and where can we get it? I appreciate your

sharing your experience and opinion. I also know children who have

been treated by doctors from the Thoughtful House who have responded

well. I am giving credence to your statements about the danger of the

procedure they perform on our kids with GI problems like my grandson

has.

>

> C.

>

Link to comment
Share on other sites

Guest guest

In a message dated 3/22/2006 5:14:43 PM Central Standard Time, robbiev911@... writes:

Or the fact that my son's input regarding his body was not a concideration[since he is verbal,capable of functioning in reg. ed class unassisted]It was explained to me that if colonoscopy with biopsy showed nothing than they would use pill cam. Why not just do that in the First place as it is non-invasive[especially when I was very clear in the first place that I would only accept that at this time,and told I would be recieving that. Bait and switch.

I am also wondering why we can't do the capsule endoscopy instead of having to go thru the colon/endoscopy. My son is due for a re-scope and the first scope showed no inflammation, just the ileal LNH. My son's symptoms are worse now and colitis meds and prednisone are not helping. Dr. K. is thinking that we're dealing with small bowel disease, so I guess I'm wondering why bother with the colonoscopy and just do pill cam so we can see what is going on in the small bowel.

Becky

Link to comment
Share on other sites

Guest guest

Arguments can be made both ways. If there

are any restrictions in the GI tract, the pillcam can get stuck and it has to

removed surgically. That is a big deal. On another related note,

the crazy insurance reimbursement policy for many insurers is that they will

only pay for the pillcam after the traditional tests are done.

Marty

From: EOHarm

[mailto:EOHarm ] On Behalf Of rlchristoffer@...

Sent: Friday, March 24, 2006 4:39

PM

EOHarm

Subject: Re: Re: EOHarm]

Thoughtful House not so thoughtful

In a message dated 3/22/2006 5:14:43 PM Central Standard

Time, robbiev911@... writes:

Or the fact that my son's input

regarding his body was not a

concideration[since he is verbal,capable of functioning in reg. ed

class unassisted]It was explained to me that if colonoscopy with

biopsy showed nothing than they would use pill cam. Why not just do

that in the First place as it is non-invasive[especially when I was

very clear in the first place that I would only accept that at this

time,and told I would be recieving that. Bait and switch.

I am also wondering why we

can't do the capsule endoscopy instead of having to go thru the

colon/endoscopy. My son is due for a re-scope and the first scope showed

no inflammation, just the ileal LNH. My son's symptoms are worse

now and colitis meds and prednisone are not helping. Dr. K. is thinking

that we're dealing with small bowel disease, so I guess I'm wondering why

bother with the colonoscopy and just do pill cam so we can see what is going on

in the small bowel.

Becky

Link to comment
Share on other sites

Guest guest

>

I do NOT

> believe for one minute that sedation posses no risk to these kids. A

> genetics doc. in Boston told me specifically that they should be

> sedated in a very careful way or they may not wake up.>

>

I know for a fact that if you have a child with the MTHFR mutation that

there are serious

risks involved with anesthesia.

Link to comment
Share on other sites

Guest guest

Regarding the pill cam. If there isn't enough motility then it might not move the pill along and achieve what you want to achieve. Martha

Re: Re: EOHarm] Thoughtful House not so thoughtful

In a message dated 3/22/2006 5:14:43 PM Central Standard Time, robbiev911@... writes:

Or the fact that my son's input regarding his body was not a concideration[since he is verbal,capable of functioning in reg. ed class unassisted]It was explained to me that if colonoscopy with biopsy showed nothing than they would use pill cam. Why not just do that in the First place as it is non-invasive[especially when I was very clear in the first place that I would only accept that at this time,and told I would be recieving that. Bait and switch. I am also wondering why we can't do the capsule endoscopy instead of having to go thru the colon/endoscopy. My son is due for a re-scope and the first scope showed no inflammation, just the ileal LNH. My son's symptoms are worse now and colitis meds and prednisone are not helping. Dr. K. is thinking that we're dealing with small bowel disease, so I guess I'm wondering why bother with the colonoscopy and just do pill cam so we can see what is going on in the small bowel. Becky

Internal Virus Database is out-of-date.Checked by AVG Free Edition.Version: 7.1.385 / Virus Database: 268.2.5/284 - Release Date: 3/17/2006

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.385 / Virus Database: 268.3.1/292 - Release Date: 3/24/2006

Link to comment
Share on other sites

Guest guest

Ummm, $200 or $400? I paid almost $10,000 for the standard scope set in

boston. I'd be thrilled to pay $400.

Re: Re: EOHarm] Thoughtful House not so

thoughtful

> >

> >

> >

> > In a message dated 3/22/2006 5:14:43 PM Central Standard Time,

> > robbiev911@ writes:

> >

> >

> >

> >

> >

> > Or the fact that my son's input regarding his body was not a

> > concideration[since he is verbal,capable of functioning in reg.

ed

> > class unassisted]It was explained to me that if colonoscopy with

> > biopsy showed nothing than they would use pill cam. Why not just

do

> > that in the First place as it is non-invasive[especially when I

was

> > very clear in the first place that I would only accept that at

this

> > time,and told I would be recieving that. Bait and switch.

> >

> >

> >

> >

> >

> > I am also wondering why we can't do the capsule endoscopy instead

> of having

> > to go thru the colon/endoscopy. My son is due for a re-scope and

> the first

> > scope showed no inflammation, just the ileal LNH. My son's

> symptoms are

> > worse now and colitis meds and prednisone are not helping. Dr.

K.

> is

> > thinking that we're dealing with small bowel disease, so I guess

I'm

> > wondering why bother with the colonoscopy and just do pill cam so

> we can see

> > what is going on in the small bowel.

> >

> > Becky

> >

> > _____

> >

> > ! GROUPS LINKS

> >

> >

> >

> > * Visit your group " EOHarm

> <EOHarm> "

> > on the web.

> >

> > *

Link to comment
Share on other sites

Guest guest

-

Unfortunately they know we need the help so some are gowdging every

dime they can get.

-- In EOHarm , " Holly Bortfeld " <maximom@...> wrote:

>

> Ummm, $200 or $400? I paid almost $10,000 for the standard scope

set in

> boston. I'd be thrilled to pay $400.

>

> Re: Re: EOHarm] Thoughtful House not so

> thoughtful

> > >

> > >

> > >

> > > In a message dated 3/22/2006 5:14:43 PM Central Standard Time,

> > > robbiev911@ writes:

> > >

> > >

> > >

> > >

> > >

> > > Or the fact that my son's input regarding his body was not a

> > > concideration[since he is verbal,capable of functioning in reg.

> ed

> > > class unassisted]It was explained to me that if colonoscopy

with

> > > biopsy showed nothing than they would use pill cam. Why not

just

> do

> > > that in the First place as it is non-invasive[especially when I

> was

> > > very clear in the first place that I would only accept that at

> this

> > > time,and told I would be recieving that. Bait and switch.

> > >

> > >

> > >

> > >

> > >

> > > I am also wondering why we can't do the capsule endoscopy

instead

> > of having

> > > to go thru the colon/endoscopy. My son is due for a re-scope

and

> > the first

> > > scope showed no inflammation, just the ileal LNH. My son's

> > symptoms are

> > > worse now and colitis meds and prednisone are not helping. Dr.

> K.

> > is

> > > thinking that we're dealing with small bowel disease, so I

guess

> I'm

> > > wondering why bother with the colonoscopy and just do pill cam

so

> > we can see

> > > what is going on in the small bowel.

> > >

> > > Becky

> > >

> > > _____

> > >

> > > ! GROUPS LINKS

> > >

> > >

> > >

> > > * Visit your group " EOHarm

> > <EOHarm> "

> > > on the web.

> > >

> > > *

Link to comment
Share on other sites

Guest guest

Oh, there are lots of those kinds of doctors out there unfortunately. And I

swear that they train the new docs how to bill the most possible, start

their own supplements brand, food line, or some kind of " charity " that are

just shell corporations run out of foreign places, like the tax-free

Caymans. Having said that, I still think the $200 pillcam is a bargain.

Re: EOHarm] Thoughtful House not so thoughtful

-

Unfortunately they know we need the help so some are gowdging every

dime they can get.

-- In EOHarm , " Holly Bortfeld " <maximom@...> wrote:

>

> Ummm, $200 or $400? I paid almost $10,000 for the standard scope

set in

> boston. I'd be thrilled to pay $400.

>

Link to comment
Share on other sites

Guest guest

Holly,

Out of that 10,000 how much did insurance cover?

Were the IDC codes " friendly " ?

I think it would make most of us parents feel better if they would

publish where the money goes...

Marisha

Ummm, $200 or $400? I paid almost $10,000 for the standard scope set

in boston. I'd be thrilled to pay $400.

Link to comment
Share on other sites

Guest guest

Hi, I paid my $10 copay out of that $10K. :)

Re: EOHarm] Thoughtful House not so thoughtful

Holly,

Out of that 10,000 how much did insurance cover?

Were the IDC codes " friendly " ?

I think it would make most of us parents feel better if they would

publish where the money goes...

Marisha

Ummm, $200 or $400? I paid almost $10,000 for the standard scope set

in boston. I'd be thrilled to pay $400.

Link to comment
Share on other sites

Guest guest

Plus of course the airfare, hotel room for a week, car rental, wicked

parking fees in boston, food, etc.........

Re: EOHarm] Thoughtful House not so thoughtful

Holly,

Out of that 10,000 how much did insurance cover?

Were the IDC codes " friendly " ?

I think it would make most of us parents feel better if they would

publish where the money goes...

Marisha

Ummm, $200 or $400? I paid almost $10,000 for the standard scope set

in boston. I'd be thrilled to pay $400.

Link to comment
Share on other sites

Guest guest

Who did you use?

What do you think about who you used?

Why did you pick?

If you need to e-mail me off list that's fine

marishataylor@...

I have a lot of parents asking/having scope questions

& it can further help me to help them.

Marisha

> Plus of course the airfare, hotel room for a week, car rental,

wicked

> parking fees in boston, food, etc.........

>

> Re: EOHarm] Thoughtful House not so thoughtful

>

> Holly,

>

> Out of that 10,000 how much did insurance cover?

> Were the IDC codes " friendly " ?

>

> I think it would make most of us parents feel better if they would

> publish where the money goes...

>

> Marisha

>

>

> Ummm, $200 or $400? I paid almost $10,000 for the standard scope

set

> in boston. I'd be thrilled to pay $400.

>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

We used Buie at MGH. We LOVED him, and his staff, while we were there.

After we left, it took MONTHS to get the staff to cough up the records.

They sucked big time with paperwork follow through. Buie however always

meets with me whenever we are at a conference together to discuss my son.

My advice would be, if you use Buie, make a 2nd appt to physically go back

to get the tests reports etc. if you can't do that, choose someone else.

Re: EOHarm] Thoughtful House not so thoughtful

>

> Holly,

>

> Out of that 10,000 how much did insurance cover?

> Were the IDC codes " friendly " ?

>

> I think it would make most of us parents feel better if they would

> publish where the money goes...

>

> Marisha

>

>

> Ummm, $200 or $400? I paid almost $10,000 for the standard scope

set

> in boston. I'd be thrilled to pay $400.

>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

In a message dated 3/25/2006 5:44:05 PM Central Standard Time, robbiev911@... writes:

I think it is best to just try the leukotrine inhibitors ,and forget sedating these kids.The fact that your son is worse after Kringsman and up for a second colonoscopy tells me things are not going in a positive direction.Why keep up with the invasiveness when you can drop what is not working and try something else? After rescoping the kid he's only gonna try another rx. So just try another Rx. If he doesn't want to do it without another scope then drop him and find another doc.I hope it all works out for you.

We tried Singulair to no avail. I saw no improvements in allergy symptoms or gut issues. Could that mean something else is going on? How do we know if it's viral? My DAN doc mentioned a trial of Valtrex. I get so frustrated with the whole trial thing, esp. since even if we do see improvements in symptoms, they usually do not last.

Becky

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...