[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[J.Graham]

Thanks Dave for sending the article. It's nice to know that some research on this is being done in Canada too. It's been long overdue.

take good care,

Jen

[Dave Collyer]

Hi,

For JC Travers and Todd and Lisa Dea,

One of the ASD bloggers I read posted this today. I thought you might find it interesting.

http://www.cbc.ca/health/story/2007/09/27/autism-study.html

Dave.

[Trudy Parisien]

Hi We are looking into CBI Consulting for our 4 year old son with High Functioning Autism, Auberge's and a is Visually Impaired, Does anyone have any feed back on this consulting group, they can share.

Thanks, Trudy

[Louise Taylor]

Forgot to mention the time that Jean Lewis and David Marley will be on Bill Good's show. Please tune in at 1130 AM on Tuesday, Oct. 2nd.

[Louise Taylor]

The offial "FEAT of BC goes Coastal" campaign will be launched this week with a fundraiser at Capone's Restaurant in Yaletown this Satureday night. It is already a sell-out crowd!

In addition, This Tuesday, October 2nd, Jean Lewis and David Marely will once again be guests on the Bill Good show on CKNW (980 on the AM dial).

Please read the press realease below for more details:

September 25, 2007

For Immediate Release

Vancouver, B.C. – A sold out crowd of parents of autistic children and supporters will be meeting at CAPONES Restaurant and Live Jazz Club, in Yaletown, on the evening of Saturday, September 29th. Dozens of FEAT of BC parents and supporters will be enjoying BC wines, tapas and entertainment by BC jazz performer, Murray Porter.

FEAT of BC (Families for Early Autism Treatment of BC) is a not-for-profit volunteer organization of parents and professionals working towards universal access to effective, science-based treatment for all Canadians diagnosed with autism.

Jean Lewis, founding director of FEAT of BC, states, “The intense interest in this event mirrors the situation in Ontario, where the Conservative Opposition in the current provincial general election has, presumably based on polling data, chosen to highlight in its television ads the Liberal government’s failure to keep a promise that costs for the treatment of autism would be covered by Medicare.”

FEAT of BC will participate aggressively in the next federal general election campaign, in a dozen or more electoral districts in which the margin of victory last time was less than two percent of the vote.

-30 –

For more information, contact Jean Lewis at 604-925-4401 or 604-290-5737 or jean.lewis@telus.net

September 25, 2007

For Immediate Release

Vancouver, B.C. – A sold out crowd of parents of autistic children and supporters will be meeting at CAPONES Restaurant and Live Jazz Club, in Yaletown, on the evening of Saturday, September 29th. Dozens of FEAT of BC parents and supporters will be enjoying BC wines, tapas and entertainment by BC jazz performer, Murray Porter.

FEAT of BC (Families for Early Autism Treatment of BC) is a not-for-profit volunteer organization of parents and professionals working towards universal access to effective, science-based treatment for all Canadians diagnosed with autism.

Jean Lewis, founding director of FEAT of BC, states, “The intense interest in this event mirrors the situation in Ontario, where the Conservative Opposition in the current provincial general election has, presumably based on polling data, chosen to highlight in its television ads the Liberal government’s failure to keep a promise that costs for the treatment of autism would be covered by Medicare.”

FEAT of BC will participate aggressively in the next federal general election campaign, in a dozen or more electoral districts in which the margin of victory last time was less than two percent of the vote.

-30 –

For more information, contact Jean Lewis at 604-925-4401 or 604-290-5737 or jean.lewis@telus.net

[Monika Lange]

I was told by MCF that my son needed to have a psycho-educational assessment done that establishes an IQ of below 70 for full service after age 18 (i.e., group home funding, disability pension). I requested this through the school so it was free. The inital diagnosis from SunnyHill when he was 3 years old did not establish IQ.

[J.Graham]

Hi Dave,

Upset, not at all. I respect your opinion and I know you have done your research – by the many informative posts I've read of yours. Thank you for them.
As I have said before, NOT every child is mercury toxic and so chelation should not be performed. That decision is based on extensive testing by a "qualified" MD who KNOWS what to look for. Unfortunately, not a one in BC (big gripe of mine). Even then, there are many tests to pass first.
I would love to send you the literature you are looking for, and will. My computer crashed a couple of months ago and most info was lost.
I will dig it up.
For now though, I have a sick child to tend to and school/home progams to get rolling.
Stay tuned.

take good care,

Jen

[Dave Collyer]

Hi JC,

I seem to have stepped into it! I may as well jump all the way in. As parents we all do what we do with the best interests of our children at heart. My apologies if I have upset anyone as that was not my intent. I am always open to discussion of options. I think we (all parents of children on the spectrum) all try to find the most effective way to help our own children… and to try to help others.

Thanks for the prompt to google …With regard to this topic I have actually done so many times. However, I feel that it is important to read the primary sources with regard to these sorts of issues and have also spent many hours in the “stacks” at the university reading such primary materials. Could you do me a favor and cite any references you may have on hand that are published in peer reviewed journals (medical or otherwise) supporting this process. I'll add them to my library. After reviewing as much related research as I could find (over 140 published articles) we elected to not utilize chelation as an option for our son (and I am speaking just of our process with regard to only our son… ). We did so for a number of reasons which include:
1. It very well may be that the death of this specific child is the result of a single Dr. making a single mistake (even though there are other reported deaths associated with chelation intervention). It might also be interesting to look at some of the primary sources such as the statement of cause ( http://www.casewatch.org/board/med/kerry/complaint.shtml ) . I found points 70 onwards to be interesting as they seem to suggest that the physician involved not only used the wrong drug (Ignoring warnings on the label) but he also seems to have never stocked the correct drug, never used the correct drug in practice, deployed a rapid "push" contrary to product warnings etc etc… you are correct the drug in question was di-sodium EDTA. Rather then a single mistake of selecting the wrong drug from the shelf it seems that a series of errors of judgment occurred that resulted in death. Interesting that, although more mainstream practitioners would be very cautious with this drug, its use seems to be part of the protocol published by the American College for Advancement in Medicine (which was, at the time, active in the promotion of chelation). The physician in this tragic case has been reported to be a member of this organization, and it seems likely to have been aware of the protocol given the statement. I also found it odd that the product warnings were apparently ignored and the protocol was followed. ( http://www.circare.org/foia2/endrate_ppi.pdf ). I worry that the protocol used by Dr.s who deliver this intervention remains confusing.
2. Off label drug usage (use of a drug or process for other then what it has been researched for): Given the apparent issues associated with physicians using products for "off label" interventions we had "red flags" with regard to chelation. This intervention is not supported in many articles in the mainstream medical journals as a treatment for ASD… yes there are testimonials, animal studies, and some case studies as well as a few semi rigorous larger studies published in this area… but not sufficient to convince me that it is a valid intervention that is worth the risks and costs as they suffer significant design flaws. Recent papers (ie the meta analysis by Ng, Chan, Soo, & Lee 2007 and another by Doja and Roberts 2007) suggest that there are issues with the claims made ( Ng et al (2007)“Mercury poisoning should be diagnosed only with validated methods. There is no evidence to support the association between mercury poisoning and autism.” And Dojo et al 2007 “… no convincing evidence was found to support this claim nor for the use of chelation therapy in autism”)… there are many other articles that influenced our choices.

Like many many other parents we (my wife and I) continue to review the research base on an ongoing basis. We are not closed minded and actively seek out answers that fall outside of the ABA realm… but we also critically review strategies and interventions (including those published in the realm of ABA) and, we go to the primary research articles in the process (not summaries and not semi- scientific journals or articles written by reporters and journalists) to examine experimental design for flaws and over stated conclusions, poor use of statistics, self serving interests held by researchers (some of our ABA researchers would be well advised to declare such interests in my opinion) etc etc… although we try to remain current we do miss things. Please do pass on any and all references to well designed and controlled research articles in this realm ( drcollyer123@mac.com ). I will read them.

All the best.

Dave.

[Monika Lange]

I still think Laurie had a valid point. That being the unreliableness of "instincts". Judging from my romantic life, the reliability of instincts decreases in direct proportion to the degree of desperation. And we're ALL desperate to help our kids. I don't think Laurie was slamming people who pursue alternatives; rather, I think she was slamming the evaluation of those alternatives when it is based largely on subjective "instincts". People, let's be hard on the argument, not the arguer. I love it that the Director of ASBC adamantly supports ABA and has the courage to say what she thinks. FEAT veterans know it was not always that way, and that ASBC used to be a HUGE impediment. I find it refreshing. On that note, I also think it's great Jenny McCarthy is willing to put her lucrative sex kitten image on the back burner. Although she appears to be more popular than ever with the guys here! Maybe she's making us autism Moms sexy by association… Go Jenny Go!

[J.Graham]

Wow…

I just got back from taking my son to the ER again for that darn virus that's been coming back every 2 months since his diagnosis 5 years ago… the one that most Dr.'s (lost count) roll their eyes at as if I was nuts. 'Gotta be that autism' they would say. Well, Thank God for my 'mommy instincts', love and determination and my very caring DAN! Dr. of 5 years down south because they finally found a name for it and we'll be on the antivirals within the week.
ROLL THAT! WOO HOO!!
Ahh… then I came across Laurie's post.

Thanks Todd for saving me from having to write one of those drawn out posts talking about all the great research going on outside of BC and updating those that should probably be doing their own homework/research, (late into the night, like we do) anyways. If they did, then they would understand what Jenny's trying to do and that it may even benefit your child someday.

I remember what JB said…"if a mouse farts in the basement…"

If autism is a medical condition then where the hecks the Doctor??
Hmmm…

As the 'Director of the ASBC' do really think that post was necessary on an ABA ONLY board. Come on Laurie, you have just shown how much you don't know and your one of the places new parents are supposed to go for help? Yikes.
This is exactly what Jenny is trying to get across. Have you been to http://www.tacanow.org?
Wouldn't that be great to have something like that here in BC? Alan…?
Well of course it would. Parents of kids with autism need that support. They need to know EVERYTHING and MAKE THEIR OWN CHOICES.

Actually, I have read Jenny's book (preordered it) and it's actually about what it's like to be a parent of an autistic child and how alone it can feel, relationships lost, etc. Light reading, but one we all can relate too.
Jenny's a spokesperson for NAA too, of which I am a member and I know first hand that she did all of the ABA,OT,VB, speech etc., too.
She is now doing RDI with Evan. She mentions all of this in her book.

Dave, the death of that little boy last year doing chelation was Dr. error for the gazillionth time. He was given Sodium EDTA instead of Calcium EDTA. Pharma made the bottles look the same. Google it. By the way, Evan didn't chelate because he wasn't metal toxic. He was an immune compromised kid.
Come on people, do your research. Not all kids with autism are mercury toxic! Some have viral, bacteria, immune, candia and the list goes on.

For those interested in watching Jenny go… she is also on:
20/20 on the 21st
Good Morning America on the 24th
The View on the 25th
Larry King Live on the 26th

Thanks Jenny.

Enough said,
off to bed knowing I have found another piece of my sons little puzzle and liking it.

Jen

ps… go jenny go

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