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Dave Collyer
MemberHi 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.
MemberHi again Todd,
I forgot to mention that some of the biomed interventions may be dangerous. For example, there have been some reports that chelation therapy (intended to remove mercury and lead) has resulted in death.
Dave.
MemberHi Todd,
Welcome.
It seems like you can take care of yourself. In the world of ASD sometimes full contact debate is the name of the game and a thick skin is a prerequisite. It seems, at times, to be a bit of a "blood sport".
Like your GP all of our son's physicians have dismissed dietary interventions as fraudulent so I am afraid that I cannot help you with your primary question.
I applaud your efforts to research all options and your willingness to look at the state of the science. As you know testimonials are not the same as well designed research (those that incorporate random assignment to treatment/non-treatment groups, blind assessors, consistent use of measures, declared interests ($$$), etc etc) and if you continue to look at the various options as you have been, with an open and critical perspective, I know your son will be well served.
It is good to keep in mind that the state of the science is ever changing and to keep researching options as you are doing (critically). Recently I came across several research papers that detail well controlled studies that fall into the "not ABA" realm (ie work in the realm of parent mediated reciprocity and responsiveness training… IMO there are behavioral principles at play within these interventions that are not articulated and there are limitations and assumptions inherent that need close attention…if folks are interested let me know and I will pass on the references). I am, however, still waiting for research with regard to dietary interventions and ASD that is well designed. If you find anything feel free to email me!
TTYL
Dave
MemberPart 2.
Private schools only receive half of the Basic allocation ($5851) but are entitled to the full amount of the l2 funding ($16000). The funding matrix assumes full time attendance…
MemberHi Veronica,
In BC a child with a diagnosis of any of the ASDs generates the basic student grant($5851.00) and L2 funding (16,000.00). The district and the local school admin has the discretion as to how to allocate this funding so as to, in their opinion, best meet the learning needs of the children. The 16000.00 is not "tied" directly to any specific child. It could be used, for example, to assist with a program for another child who has more intensive support needs (if child "A" is doing "well" his/her funding could be used to support child "b" even though child "a" would continue to benefit from more intensive supports)… the simple fact of the mater is that the funding is in no way sufficient to meet the support needs of many children "on the spectrum".
Dave.
http://www.bced.gov.bc.ca/k12funding/funding/07-08/estimates/ operating-grants-manual.pdf – 212.9k (TABLE 1).
http://www.bced.gov.bc.ca/specialed/ppandg/13_summary_funding.htmMemberMemberHappy Canada Day everyone!
Dave.
MemberHi Adrienne
1. Melatonin is not banned in Canada to the best of my knowledge. It is available over the counter at my local LondonDrugs and Pharmasave. There are cautions associated with its use. read the label, talk the Pharmacist and consult your pediatric Dr.
2. Respite… there are some options which are dependent on your location. For example here in Vic our VSCA can offer some limited supoprt and, after a four year wait you can access Community Options respite services. It is possible that the @Home program may also assist… your "Facilitator" (aka Social Worker) should be able to assist with application otherwise you can find the @ Home app here: http://www.mcf.gov.bc.ca/at_home/pdf/cf2158int_jul06.pdf (the @ home program also has "medical services" which I am told some use to access OT and SLP supports). Beyond these resources there may be local options so check in with your social worker (Facilitator). In some instances I know of people who have accessed repite supports when stressors reached a point that family breakdown was likely (and the child's safety was a concern). Chat with your SW (facilitator) about how to access supports like this if your family is in this situation.
MemberMemberHi Allie,
Start now!!! TODAY! Actually it would have been better to have started the conversation with SD admin a couple of months ago but such is life. I know a number of internal CUPE postings have just closed & I suspect that staffing disbursment is about to firm up. If you are moving into VIctoria proper you need to be in touch with the folks @ SD61 (there are two other districts… Sooke (62)and Saanich (63)) NOW!!! Drop me an email and I will pass on some info re contact names, process, CUPE job description etc… I have a few good contacts for SD62 and SD63 as well as SD61.
drcollyer123 (at) mac (dott) com
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