Whack a Mole

[Chris Haynes]

I participate in a listserv that deals with my son's severe speech disability. I am getting very frustrated with it lately.

It seems many of the subscribers are parents of kids with autism. Which is not bad in itself, since the disability does occur in autistic children also (my son had a history of seizures). What is bad are the folks who play the vaccine blame game and who get sucked into supposed "cures".

Things like going to a "DAN" doctor (many are naturapathic doctors who have never been inside a medical school), sending hair in for "analysis", and trying chelation.

One parent recently wrote that her child's DAN doctor did tests and now her child needs B-12 injections and a whole bunch of supplements.

I wrote in saying that this was suspicious, and if push comes to shove to spend money on private speech therapy. Private speech therapy costs about $100/hour, and is often not covered health insurance. I also included a link to http://www.autism-watch.org/.

No response to that. I was suspecting one of the alt-med types telling me that anything associated with Quackwatch was in the pocket of Big Pharma.

But today, a parent is now asking about chelation for her child. Aargh.

I am beginning to wonder if I just un-subscribe and let them all give their money to the scam artists and pump their kids full of chelating agents.

Anyway... this is what I sent today in response:

Quote:

Sending this again... though it is shortened.

I got a few nasty-grams, but I think it is important to take a stand against
putting kids in harm's way, and to keep desparate parents from putting money
into the pockets of scam artists. Especially those who give bogus results
for dubious lab tests so they can put chelation agents into kids.

Spend money on good speech therapy... even that is at least $100/hour.

Oh, and there is some additional stuff on Edelson. He can no longer
practice medicine, so here is what he is doing now:
http://www.ssr.com/cgi-bin/ezmlm-cgi...ndlflhfbponoej

----- Original Message -----
.Sent: Friday, January 09, 2004 11:02 AM
Subject: Bad Idea...


>
> ----- Original Message -----
> ...> Appropriate help for some kids is medical help,dietary help,
> chelation,
> in
> ...
>
> I know that this may be unpopular... but the ONLY thing chelation is
> medically useful for is for lead and mercury poisoning that is verified
> with
> a BLOOD test. (Hair analysis is not enough, my favorite goofy result I
> heard of was that the hair showed levels of bismuth... uh, that is the
> active ingredient in Pepto Bismol -- perhaps they dipped the hair in the
> pink stuff).
>
> The reason I say this is that pumping chemicals into a kid for very little
> reason can be dangerous, and it may not really work:
> http://www.fda.gov/cber/vaccine/thimfaq.htm#q23
>
> Some clinics have been disciplined for this:
> http://www.ftc.gov/opa/1998/12/acam.htm
>
> One clinic is being sued over the effect of "detoxificaton" had on kids...
> by two families:
> http://www.quackwatch.org/11Ind/edelson.html
>
> And a couple of other related disciplinary actions for other "doctors":
> http://w3.health.state.ny.us/opmc/fa...56a4a0047ca82/$FILE/lc096113.pdf
>
> http://www.osca.state.mo.us/Courts/P...e?OpenDocument
>
> Fortunately, promotion of chelation for kids is a fairly recent
> phenomenon... not many kids have been adversely affected (one person did
> comment that it made her child feel miserable) --- but it would be best if
> none of our kids became statistics to a bad idea (like the attachment
> "therapy" that had caused lots of grief:
> http://www.cnn.com/US/9610/24/rage.reduction.therapy/ and
> http://www.amazon.com/exec/obidos/tg.../-/0275976750/ )
>
> The absolutely BEST treatment for speech and language disorder is good
> consistent neurodevelopmental therapy (this cover occupational, physical,
> speech, language, behavior) and a good supportive educational situation
> (either public, private, or homeschooling).
>
> Good speech therapy is expensive and often not covered by insurance (I
> know,
> we had to wait for our son to 'graduate' in the 6th grade before we could
> afford to buy a van... it was not fun stuffing 3 growing kids into the
> back
> of a compact car). BUT there are ways to make it more affordable... group
> therapy with other kids (it can be useful for socialization), university
> based clinics (student therapists, but child should be able to deal with
> new
> therapist every few months, but it is supervised by a well qualified
> professor), and some charities like this:
> http://www.srmason-sj.org/council/te...oklet/cldp.htm
>
> It is also helpful to get a consultation with a good pediatric
> neurologist... the ones that have studied child development and neurology
> (there is a local "DAN doctor" here who advertises as an expert, but he is
> not... he was also the guy whose care a friend's cousin was under... her
> cousin died from melanoma: I'm suspicious of any guy who goes from being
> a
> "cancer" expert to an "autism" expert). Check out the doctor just as well
> has you would check out a speech therapist.
>
> Also, a good child neurologist can help prescribe neurodevelopmental
> therapy
> for insurance coverage... ours did, and it helped when our son was under age
> 7.
>
>...> Absolutely no added ingredients... no supplements other than a kid
>vitamin
> from Costco, no oils, no other medications. There is no magic cure nor
> nostrum... just lots of hard work (mostly by the kid).
>
> Good luck

[epepke]

From the title, I thought that this thread would be about 1inChrist's popping back up repeatedly.

But seriously. You're dealing with people who are 1) deeply troubled, and 2) have little idea of what is going on, and they are dealing with people who only have a meagre idea of what is going on.

One of the basic heuristics of medicine is if there are a lot of treatments, none of them work worth a dam. If you are old enough, consider the number of erectile treatments that existed before Viagra. Yohimbine was the most promising, but there were scores of others. Then they all went away. The succeeding drugs are all based on Viagra.

[Benguin]

Good luck to you, I think your evangelising (if that is the correct term) is likely to have more benefits there than it could have here. Even if you are likely to hit some stiff resistance.

Keep up the good work.

[Chris Haynes]

Thanks... well, as of this morning I have received two "Nice-grams". A couple of subscribers who are also tired of seeing the quacky stuff posted all the times.

One was from a mom who questioned "applied kinesiology" --- only to have one of the "true believers" try to explain that AK was [b]scientific[/] (the same true believer who tried to get me kicked off the listserv for explaining that the MMR vaccine did not have thimerosal).

Last time I did receive one email from a member who we "non-alt-med" believers made feel better. She was thinking she was remiss in trying all the essential oils, supplements and odd therapies (like applied kinesiology and cranalsacral).

[flume]

Quote:

Originally posted by Hydrogen Cyanide: One was from a mom who questioned "applied kinesiology" --- only to have one of the "true believers" try to explain that AK was scientific.

::shudder::

[Zombified]

HCN, it's sounds like your efforts are really on behalf of fence-sitters or people who just aren't sure rather than the hard-core believers... just think of all those lurkers who are a bit better equipped to make better decisions, but you never hear from...

[Chris Haynes]

With true believers you get replies like the following (paraphrased so as to not violate rules here or there):

"If there is"true" mercury poisoning, then it is worth while to trying chelation."

She claims her son had huge amounts of mercury AND alluminium leaving his body during chelation --- and then made great gains. She claims it is not a scam, and that some kids have totally recovered.

R.I.G.H.T --- and for all those kids who made great recoveries, you would think their case reports would have been listed somewhere, oh, like here:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

Nope, checked... not there.

Anyway, from the postings this true believer leaves --- if any of her children have cognitive, social or communication problems it would seem that it is true that the "apple does not fall far from the tree".

[Zombified]

Quote:

Originally posted by Hydrogen Cyanide
She claims her son had huge amounts of mercury AND alluminium leaving his body during chelation --- and then made great gains.

How did she know there was mercury and aluminum coming out? Or was this just a bare-faced assertion?

[Chris Haynes]

Quote:

Originally posted by Zombified
...Or was this just a bare-faced assertion?

More than likely. I'm sure it come from the same people who analyzed the kid's hair.

Oh... last count on response:

Yea!! 4

Nea!! 1 (the one I described)

[Deetee]

Well done HC - keep up the fight. If you even help one child that will be reward enough.

PS - I thought this thread was going to be about some avocado mush....

[Dr Adequate]

Quote:

Originally posted by Deetee
PS - I thought this thread was going to be about some avocado mush....

I hate you now.

[Chris Haynes]

Thanks all...

Sorry about the title... It came from a Healthfraud posing (the link is in the first message here).

Trying to battle the quacks is like playing "Whack a Mole". Which is even more evident when you read Martin Gardner's book:
Fads and Fallacies in the Name of Science . The 2nd edition was published (slightly) before I was born -- and it is still relevant!

[Eos of the Eons]

Here to cheer you on as well. It's a tough fight trying to bash the moles and their anectdotal misinformation. Hang in there, I admire how you are helping the fence sitters. The believers be damned, one can only refute the garbage they post, and it's a tough job so I am glad somebody is doing it.

Your own sound advice and encouragement to take the "tougher" but effective route will help others. A quick fix is not reality. Showing people why is difficult, but you're doing it!

Keep in there! Take a break whenever, but please don't throw in the towel. We need more sane and sound voices out there! Good information, I'm learning from you too. Thank you!

[Chris Haynes]

Thank you all...

I have been encouraged with the support I got on the listserv. This includes one member elsewhere who was frustrated with another parent of an autistic kid. Instead of going through all the ABA exercises she was going to fly to New York City so her child could go to some "doctor" who promised some injections and supplements would cure her child. sigh