Re: Dear Cheryl - DAN doctors and therapy

[Guest guest]

Thanks folks for highlighting few things I either missed or didn't know.To be very honest, in the beginning I had a hard time believing that this stuff really works, until I read a book by Bock - Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders. Its not that this book only changed my mind but a very close friend of mine is treating her daughter with this stuff and told me that there is a positive change in her daughter. The reasoning and explanation given by Dr Bock in his book is also pretty convincing. Still a corner my mind remained suspicious about this stuff (because of the statistics he offered in the book, Yes I know every person is different hence the statistics is not stellar and I am used to seeing >90%+ positive response rate.)

Ignoring suspicion, I started looking for DAN doctors in NYC and nearby counties. I searched on DAN website and contacted almost everyone of them. Guess what, none of them take insurance. Another suspicion popped into my mind, why these folks don't take insurance? They claim that it increases their workload and cost, which I see as a load of crap. My wife works in a medical setting, I visit doctors where I have to wait for at least a month for an appointment and they take insurance, then why these folks do not take insurance? For some reason, my suspicious mind connects this issue with the efficacy of the treatment and/or overall approval of this treatment. Hence, I started googling each and every doctor and I found positive as well as negative info, some of them have charged to the sum of $11K in 3 months, with average consulting fee of $1K. I have no idea why they charge so much and that leads to more confusion and suspicion in my mind about this treatment.. Probably, I should accept what Cheryl said, its a fringe medicine..

In nutshell, current status of DAN! in my mind is suspicion, added more with confusion. I truly intend to try out this stuff on my son, until I get some convincing answers to my suspicion and/or confusion.Regards,

Noel(P.S. - I changed subject line because I felt like I am hijacking the thread, Apologies to OP.)

 

Here's a bookmarked page I have from Dr. Rossignol and it says a lot, IMO:http://www.icdrc.org/documents/Rossignol%20simplified%20biomed%20autism%20file%202009.pdf

Please be aware, Noel, that DAN doctors are targets for a lot of people. They get sued for ridiculous reasons. If you follow this particular case, you'll  see that he's getting sued by a dad that is divorcing his wife and trying to wreak havoc in his wife's life at his son's expense. It's a sick custody battle. And it's disgusting but not uncommon. My own DAN is terrified that this will happen to her and she told me this years ago, well before this case.

DAN, no matter what we like to think, is still considered fringe medicine. My son isn't looked at as being mostly recovered, he's what they call " misdiagnosed " because don't you know that there is no cure for autism and the only thing you can do is give them behavioral therapy and drugs and then they *might* not need a group home when they are adults?

It's fringe medicine. You have to accept that. And you have to accept that there are many, many people that feel like this doesn't work, harms our kids and we should all go to jail for caring so damn much.

I know you were doing what you know is right - researching doctors. I think that's fabulous. But if you intend to do biomed, you'll have to learn that most of the big names in biomed have been or are getting sued. You're better off asking us parents and discussing your concerns. This is suit is not news to us. We discussed it when it first happened and the discussion didn't last long because there's nothing to discuss.

There are doctors that rightfully, should be sued, so I'm not trying to suggest that you disregard that. I'm only saying that if you have a concern, ask us. None of us here will lie to you. If something sounds fishy, we'll tell you. I know of several DANs I can't stand - but most (and I do mean most, *not all*) don't deserve to be sued and are caught up in frivolous lawsuits. When there are doctors that are sued with good cause, it generally becomes a huge tadoo and scandal and we gossip about it to no end.

But in response to your concern about Rossignol, he's done a great job as a very prominent DAN and has published a lot of research. He's treated many kids and many of those parents are on this list if you'd like to ask them any questions. The lawsuit makes claims it can't support because the dad is trying to get custody of his kid and make his mother look very bad in court. He's not right for everyone - you have to find the right fit for you, but he has an excellent reputation and is a driving force behind DAN research.

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~

~ @Gryffins_Tail ~

 

@ Toni,I am not too sure if you know but I googled Dr. Rossignol (as you mentioned East Coast) and found http://articles.chicagotribune.com/2010-03-04/news/ct-met-autism-therapy-lawsuit-20100304_1_autism-treatment-chelation-metal.

Thought of letting you know.Best,

Noel

 

Alisabeth,I never got back to you! :-OWe see Dr. Berger in Tampa. I have also used Dr. Woeller via skype and currently considering going to see Dr. Rossignol on the east coast.

 

Can you guys recommend any kind of DAN in the central florida region? We are in Lakeland but can drive if we know of a good one. Just don't know where to start. Thanks all,

 Alisabeth

To: mb12valtrex Sent: Tuesday, September 6, 2011 6:54 PM

Subject: Re: Dear CherylWe do AC chelation. When I'm feeling up to it. Lol!

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~

~ @Gryffins_Tail ~

 

Hi,       We visited Dr. West. I like her so much. We will be starting withValtrex/antifungal/metronidazole soon. I 'd like to know if you did chelationto your child, too. She is highly recommending it to my daughter. No problem.

I just wanted to know if you did same thing.        Thank you very much...she is so knowledgeable....better that theprevious DAN. God bless you and your family.                                                          

Sincerely,                                                               mhel

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.