Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 -- 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. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 --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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 >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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 --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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 > 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 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. > > > > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 - 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. > > > > > > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 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. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 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. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 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 Quote Link to comment Share on other sites More sharing options...
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