Tuesday, February 21, 2006

BC on Autism Episode 7: Loopy Lupron, a Horrible Mistake or Something Worse?

Watch the video (pops)

A quick look at Kathleen's post on Lupron and some of the characters she describes in the recent effort by some extremists to tie the reduction of testosterone to improving chelation for mercury. It's a huge pile of IFs and sadly, this drug, Lupron, is nothing with which to be experimenting.


At 2/22/2006 12:49 AM, Blogger Do'C said...

Great overview look at this potentially dangerous,and inappropriate nonsense BC. My only concern is that if Erik over Flair Autism Media listens to this, all he'll hear is blah blah blah autism blah blah lupron blah. Conversely the Geiers' conversation must be intelligible to him.

P.S. Can you make a recommendation between Harp or Sex therapy? I've encountered a lot of stress this week and it's only Tuesday.

At 2/22/2006 3:55 AM, Anonymous Anonymous said...

I am sure you know this but Lupron is a gonadotropin-releasing hormone (GnRH) agonist. It does not work directly to reduce testosterone. It works by reducing the levels of GnRH in the brain. GnRH controls the release of hormones for sexual development and reproduction. For girls this is estrogen not testosterone.

So the parents trying to enrol their daughters on this programme who do not suffer from precocious puberty should think about the side effects of estrogen reduction in menopausal women and ask themaselves is that what they want for their pre-pubescent daughters.

At 2/22/2006 6:03 AM, Blogger Bartholomew Cubbins said...

Hi Mike, Yes, I try to strike a balance between overview and rigor and the sloppiness because this balance tipping toward overview is the fault of my laziness. If I had more time, or wanted to spend more time, I would redo the audio repeatedly until I nailed it. Hopefully these videos are enough to provide those interested a map to do their own research.

Hi DoC, I don't play the harp, but I can probably whistle the tune to Deliverance and email you the wav file if you want. :)

At 2/22/2006 9:10 AM, Blogger Kathleen Seidel said...

Thanks for the plug, BC. Honestly, I read the Monitor's profile of the family, started digging around, and couldn't believe that people would be willing to take such risks with their children's development on such flimsy, speculative grounds. Note that right after the mention of "regulating testosterone," the narrative segues to the mother's concern with some of her son's recent behavior -- "He wasn't drinking all of the digestive enzymes he takes each morning and had had some bad days at school." Wouldn't any kid rebel at one point or another if their every meal was accompanied by a spread of pills and potions from a "cabinet full of dietary supplements and remedies"?

BTW, Dr. Jacquelyn McCandless (who reportedly spoke of the Geiers' Lupron "hypothesis" as if it were proven scientific fact) has a website advertising her "mature couples" workshop business. And here's a tidbit from her bio in the Heroes section at Moms on a Misson for Autism:

You and your children have been chosen to play a primary role in an evolutionary shift in human consciousness that is nothing less than essential for species survival.

"Species survival"??? Ain't gonna be much species survival for ASD folks rendered infertile by parents and doctors so eager to "free up the mercury" and so oblivious to the possibility that their kids might grow up to want to have kids of their own that they don't consider the potential long-term effects of messing with their children's reproductive hormones.

At 2/23/2006 1:39 AM, Anonymous Anonymous said...

I also think "TheProbe" is great.

He posts often on Usenet... usually in misc.kids.health, misc.health.alternative and some ADHD newsgroups, and perhaps on cerebral palsy newsgroups.

I usually just post on the first two, and not so much. I usually just enjoy reading (which anyone can do through Google Groups).

At 2/23/2006 4:47 PM, Blogger Alyric said...

Been doing a heck of a lot of reading lately and it came to me that Jim Sinclair's line about parents wanting some other child than the autistic one they got is driving this engine because every bogus therapy out there promises to give them a different child to the one they've got. of course ABA is the most seductive since the underlying philosophy is that basically you are the product of your environment and can therefore be manipulated into being someone else altogether.

Nice going BC and kudos as usual to Kathleen. keep plugging because you must have noticed by now that when Kathleen writes letters to the editor, they publish and that says quite a lot about building up credibility.

At 2/23/2006 6:08 PM, Blogger Bartholomew Cubbins said...

"Jim Sinclair's line about parents wanting some other child than the autistic one they got"

Hi Alyric, so that's the first time I've heard that quote and there's a lot in those few, very powerful words. I think that people really ought to sit down and think about it.

At 2/24/2006 1:08 PM, Blogger not my blg said...

This comment has been removed by a blog administrator.

At 2/24/2006 5:13 PM, Anonymous Anonymous said...

I have been observing this whole thing for 8 years+, since pre-DAN...be ready to get on the treatment train. I know folks who not only have gone through dozens of treatments with their child, but in some cases the advice has extended over time to the entire family. My observation after a couple of years was that if these treatments were "the cure" (and they always are)...why does it not end?

The list at this point is almost mind-boggling and unending. The number of children I have seen who have been "cured" or "recovered" by any of this, and I know dozens....is approaching zero.

And now this Lupron thing. The cynicism and and recklessness of this is stunning.

To Alexander's Daddy:
About these "tests", etc. I would scrutinize very closely what lab is doing the analysis of what---since there is a pet list, that tends to work almost exclusively with DAN! practitioners.
See what the response is if you ask for the sample to go a lab that would be used by an ordinary MD in the area. Statements that regular labs "can't do it", etc. is hooey. The analogy I use is the home inspector recommended by the selling realtor. The logic still applies.

There is an interesting paper out of Taiwan, which I unfortunately can't find the link to, that described some interesting disparities in analyses of identical samples sent to standard medical labs, the autism-focussed labs, and their own analyses. Guess which ones had widely variable and elevated level reports?

Thank you to Kathleen, BC, autismdiva, Orac, NotMercury and all the other bloggers who are saying "hold your horses a minute" on this whole thing. It might not halt this juggernaut, but at least someone might pause to think.

Apologies for anonymity. I've taken 2 years of hate mail and argument about my opinions, and that is enough for now. You guys are heroes for being able to take the heat.

Regards and respect.

At 2/24/2006 6:22 PM, Blogger not my blg said...

Anonymous said: About these "tests", etc. I would scrutinize very closely what lab is doing the analysis of what---since there is a pet list, that tends to work almost exclusively with DAN! practitioners.
See what the response is if you ask for the sample to go a lab that would be used by an ordinary MD in the area. Statements that regular labs "can't do it", etc. is hooey. The analogy I use is the home inspector recommended by the selling realtor. The logic still applies.

I agree with you. I looked up the lab and it is currently having it's liscensed scrutinized. The DAN doctor said it would be fine to have any lab do it which may me feel a little more comfortable. We are waiting to see if the lab at UNC-Chapel Hill will do the tests as this is where my son is having his blood drawn for their NIH study.

I hope Bart will look at the test requests to see if he can shed some light. The only thing I absolutely agree with is a check of his immunoglobulins. When I was growing up, my mother would tell me how sick I was and that I almost ended up as a "bubble boy" as she described it. She told me they gave me gamma globulin injections (1969) and that soon afterward, I was able to "go out" again in the public.

At 2/24/2006 9:46 PM, Blogger Bartholomew Cubbins said...

Alexander's Daddy: You are NOT ALONE. You have a ton of people who you cannot see thinking about you, your child, and your situation. So I emailed you and let me know what I can do. Anything I can't answer, the good people at Yahoo! Autism Immune can. Let me know.

PS - When I was young I had bronchitis, and pneumonia, and bronchitis, and pneumonia (keep repeating a few times). Allergic to animals with hair and many pollens. Guess what our guy's allergic too? Yep, same stuff and same respritory issues. Genetics can be a bear.

PPS - @mac.com is cool

At 2/24/2006 10:54 PM, Anonymous Anonymous said...

Anonymous said: "I have been observing this whole thing for 8 years+, since pre-DAN...be ready to get on the treatment train....Apologies for anonymity. I've taken 2 years of hate mail and argument about my opinions, and that is enough for now."

Hi there!!

I don't think we've run into each other (I was on an apraxia-kids listserv)... but I have gone through the exact same thing! I got a nasty-gram for just posting that the MMR vaccine never contained thimerosal (I posted some of that on the JREF Forum.

I unsubsribed after getting a slick email about the "benefits" of chelation from a "member" who turned out to be employed by Bradstreet. This was after I posted that I thought chelation was a "Bad Idea". (a couple of months after I unsubscribed an autistic boy was killed by IV-EDTA, coincidently in the same area that the list owner and moderator lived! I was tempted, but I have not resubscribed).

Anyway, I think you would be very interested in this blog posting (Note who inspired it! I won't let that go to my head.)

Collective Amnesia...

At 2/24/2006 10:56 PM, Blogger The Probe said...

My wife and I were talking the other night while riding home from a NY Knicks Disaster, where they pulled Shaq early so the game was even more boring....

We were wondering about two things...

How many parents went for some form of counseling when they learned about their special child?

How many parents had another child after they learned of their special child?

We have two...we knew going in that there was a possibility that we could have a second child with AD/HD, or something else. However, we had planned on two, and two it was to be...

When we realized the degree of physical disability of our younger son, we were angry for a while...went to family counseling as part of the overall treatment for older son..and this helped immensely with turning anger into love, acceptance and joy.

I just cannot picture what I call the "fixer parents" being anything other than incredibly angry all the time. The only time we tried to "fix" our kids was to help them function better with what they had. Of course, this meant several surgeries for our younger son, and medication/counselling/special ed for our older son. However, both boys understood the reasons, as best they could at their ages, and today both do not regret our choices.

At 2/24/2006 11:47 PM, Anonymous Anonymous said...

This comment has been removed by a blog administrator.

At 2/25/2006 12:45 AM, Anonymous Anonymous said...

To "The Probe"...

Excellent thoughts!

I was pregnant with child #3 when we were told that there might be a genetic disorder that caused Child #1's severe speech disorder and subsequent learning disorder and Child #2's language disorder.


We never got family counseling. We did get an amnio on pregnancy #3 because I was old... and I really was dealing enough with Child #1.

As it turns out Child #2 and Child #3 are fairly normal. Child #2 had some language issues that were resolved before he entered kindergarten. He is now on the high school Honor Roll, and our biggest issues with him is how much he plays daily on World of Warcraft online. Child #3 was born female, and therefore exempt from most of the genetic disorders... she has no academic problems (just those with being a preteenager, that is enough).

Actually, Child #1 has suffered with the "Why me?" syndrome (especially after being diagnosed with a genetic heart condition). Enough that he decided not to do homework. We DID get him (and us) some psychological counseling. It seems to have helped.

At 2/25/2006 1:02 AM, Blogger Interverbal said...

Hi Bart,

Ahhh thank you for this. I was coming off a very long day and your commentary on this was not only well put, but it made me laugh pretty loud too.

At 2/25/2006 10:50 AM, Blogger Bartholomew Cubbins said...

Hi TheProbe and HCN,

Thanks for sharing these thoughts and experiences. It always helps me to be reminded that childhood is a stage and that the majority of life is as an adult.

The pressure by some to do this or that quickly or else it'll be too late is a scare tactic that has worked on me in the past but now I see it as both a manipulative and morally depraved action.

Interverbal - glad you got a laugh. We can all use more of that.

At 2/25/2006 7:17 PM, Anonymous Anonymous said...

Dear hcn--
thanks for the link to the article, it was good to reread it; thanks for being the muse for it :-).
We've never met up close and personal, but I bet that we are kindred spirits in similar circumstances...I suspect that questioners and skeptics are sharing similar reactions and feedback...or at least so I've heard.

Dear Alexander's Daddy,
Best wishes and good luck to you and your son. I apologizing for sounding so cynical--but I had the "only our labs" thing spelled out to me more than once. Your doc seems to be more open---great :-).

My husband pointed out a recent Scientific American article explaining the very human tendency to persist in initial faulty personal beliefs and composing many elaborations supporting those even (esp.?) in the face of clearly contradicting evidence. Seems relevant.

Just in general---and to folks who are relatively new to much of the CAM/Alt movement in ASD treatment; I would like to share some papers that I think sum up on a more empirical basis what I have seen anecdotally and personally.

Alternative/Complementary Approaches to Treatment of Children with Autistic Spectrum Disorders,Levy, Susan E. MD; Hyman, Susan L. MD,
Infants & Young Children. 14(3):33-42, January 2002.; (C)2002Aspen Publishers, Inc.

Mental Retardation & Developmental Disabilities Research Reviews, 2005, Vol. 11 Issue 2
Entire Issue devoted to discussion of complementary and alternative therapies for developmental disabilities and learning disorders.

Introduction: Novel Therapies in Developmental Disabilities--Hope, Reason and Evidence, S.L. Hyman and S.E. Levy; Mental Retardation and Developmental Disabilities Research Reviews; 2005, Vol. 11 Issue 2, p107-109, 3p; DOI: 10.1002/mrdd.20060; (AN 17483953)

Novel treatments for autistic spectrum disorders. By: Levy, Susan E.; Hyman, Susan L.. Mental Retardation & Developmental Disabilities Research Reviews, 2005, Vol. 11 Issue 2, p131-142, 12p; (AN 17483951)

Placebo effects in developmental disabilities: Implications for research and practice. By: Sandler, Adrian. Mental Retardation & Developmental Disabilities Research Reviews, 2005, Vol. 11 Issue 2, p164-170, 7p; DOI: 10.1002/mrdd.20065; (AN 17483948)

Best to all, and thanks BC for the great blog!

Apologies for drifting away from the Lupron topic :/

(formerly Anonymous)

At 2/27/2006 2:16 AM, Anonymous Anonymous said...

Dear Regan,

It is nice to know that sometimes we are not alone in questioning the cries of some of the parents who have listened to those who wish to take advantage of the disabled...

Oh, dear... that was long and confused. I hope you know what I mean. We've not drunk from the "cause of the year" vat of kool-aid, and for that we've been told we are "evil".

Yet, our kids improve.

At 2/27/2006 8:47 PM, Blogger notmercury said...

Hi Regan,
Thanks for speaking up and please don't stop. I, for one, appreciate your comments.

At 2/27/2006 8:58 PM, Blogger Bartholomew Cubbins said...

Thanks to everyone for the great comments. I'm constantly reminded that there is a network of experiences and people out there that, when tapped into, can be key to cutting through self pity, confusion, feelings of ineptitude, and callousness (all negatives that I battle all too often).

I'll try to get another episode out this weekend.


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