It was only a matter of time before the big papers caught on to some of the quack treatments being pedalled by certain (in)famous autism doctors.
The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” (said Professor Simon Baron-Cohen)
“It has become a cottage industry of false hope, and false hope is no gift to parents,” said Autism Science Foundation President Alison Singer, whose daughter has autism. “A lot of these therapies have no science behind them. You are using your child as a guinea pig.”
I blogged earlier this month about the Geier’s at a conference and their totally unsubstantiated claims at this conference:
they are also claiming that they have ‘found that testosterone blocks the body’s ability to make glutathione’. Searching PubMed for ‘lupron glutathione’ returns no hits at all. So where have they found this? Under the stairs? Why aren’t they publishing this science if they’re so sure?
The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development, in 80 percent of the autistic children in their clinic.
Which is yet another unverifiable statistic. A search of PubMed reveals just one study relating to precocious puberty and autism and that showed _no_ link.
Mark Geier said laboratory tests at his clinic show that after just three months on Lupron, autistic children improved in dozens of cognitive and behavioral ways. This just seems another figure pulled out of thin air. Theres nothing anywhere to support such an idea and if they’re so sure why haven’t the Geier’s published?
“In terms of science, there is nothing suggesting the most basic elements of what they are talking about,” said Tom Owley, director of the Neurodevelopmental Pharmacology Clinic at the University of Illinois at Chicago and a specialist in the treatment of autistic children with medicine. “That there are high levels of mercury in autism — not proven! That they have precocious puberty — not proven!”
Hilariously…
Mark Geier responded that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment. David Geier said prominent scientists support their work and gave as an example Baron-Cohen, the autism expert who told the Tribune that the Geiers’ Lupron treatment filled him with horror.
So Mark Geier is either a liar or badly informed. I know what my opinion is.
AutismOne – the huge Chicago based autism woo fest kicks off today and the Geier’s are scheduled to talk about their miracle drug. They’ll be talking largely to people already sold on the idea that screwing with their kids bone density and hormonal growth is a good thing as long as it helps with their kids autism. Trouble is, it doesn’t.
Left Brain Right Brain 
My opinion is that he is both (a liar and badly informed).
Kudos to the Chicago Tribune for having the courage to expose the Geiers.
This “lupron protocol” is based on nonsense science and is dangerous. People like the Geiers shouldn’t be able to hide behind the exterior of “helping autistic kids”.
It is tough to challenge people like the Geiers because of this, but it must be done.
Again, Kudos to the Chicago Tribune.
I don’t know about anyone else but one of the things I found very disturbing was the way Geier described the kids he was experimenting on. There was no warmth or description of any of them – he might as well have been talking about a piece of furniture.
How about this part:
Eisenstein throws the Geiers under the bus at the end of the article, though.
Yeah:
“It reminded me…”
Nice.
DO ANY OF YOU HAVE AN AUTISTIC CHILD?? I do. His name is James, age 10 now, and the Geier’s lupron protocol gave him his life back. Just ask his teachers, therapists and anyone else who knew him before the treatments. Ask James! After 3 weeks of daily shots and one in the rear he said, “I think I’ll stay on this lupron medicine.” When I asked him why, he replied, “It makes me feel better.”
And don’t attempt to attribute the drastic change in his behavior and mental clarity/focus which occurred within a week, to any other newly introduced therapy or supplement or drug. There wasn’t any. I watched his labs improve month to month. And oh, by the way. All the labs? I am grateful for how thorough the Geiers were prior to accepting my son into their protocol. I kept wondering why none of his other doctors (all those “experts” who only follow their individual specialty and do not treat the child as a whole,) never bothered to check all these markers out. So many were so out of whack (labs and experts both.)
And the Geiers not truly caring about these kids? Baloney! Everytime I needed them, they were on the phone within 24 hrs and most times within 8 hours. And then, they’d talk to me for 45 minutes explaining things and adjusting doses and always asking how James was doing. Marc Geier would say at the end of every conversation, “Just call us anytime.” Hmmmm…when did any of my son’s other doctors say that? And don’t think the Geiers aren’t aware of the effect of this treatment on puberty. We’ve already discussed how dosages/medications will be adjusted to later allow for him to ease into puberty.
And the expense of the all this? DON’T BLAME THE GEIERS FOR THE COST OF THE LABS OR THE MEDICATION. Talk to your insurance companies and the pharmaceutical companies. The Geiers ALWAYS gave me tips on how to fight my insurance company to get coverage for this and any other treatment: “They will deny everything. Be ready to appeal, appeal, appeal.” And how true that is. But the Geiers’ bill? Just “regular” doctor fees and all covered by insurance. My DAN doctors don’t care about any of this. And the DAN doctors, the “experts” charge anywhere from $225 to $450 and hour. And they don’t take insurance!
From my experience, I wouldn’t trust “leading experts” in any field unless they had treated ASD kids and had results. How many of your reknowned experts calling this junk science truly have results with ASD kids? Be careful here! Just because the arrogant and supposedly learned leaders of science can’t explain something doesn’t mean it ain’t so. They just can’t explain it YET. History has proven this. I don’t care how many years or where someone went to med school. I don’t care about all their papers. We parents network as to what works and what doesn’t. This lupron protocol worked beautifully for my son. It may not work for other ASD children. But instead of condemning the Geiers they should be researching why this stuff works on the 300+ kids being successfully treated. But the experts trip over their bloated egos. Could it be that this is the reason there is no corroboration in any of the medical literature??
SO NOW ALL OF YOU WHO HAVE NO EXPERIENCE IN ANY OF THIS SIT AND TIPPY TAP ALL THESE TRAGICALLY INCORRECT MESSAGES AND BLAST THEM OUT TO THE UNIVERSE. Shame on all of you. I speak for the one child and all the children whose families will now avoid lupron like the plague when it could have been the one thing in their life which truly released them from their hellish prion. Thank God I was blessed to have “blindly and foolishly” started this protocol before I had the time to peruse all this gibberish on the internet.
We’re pretty much all parents of autistic kids Mary. Or autistic.
I have a few questions Mary.
1) How long has/was James on Lupron?
2) Is he now no longer autistic?
3) Does he have a diagnosis of precocious puberty?
4) Aside from other meds, was James on any other kind of therapy? Is he now?
5) How much money in how much time have you spent on this Lupron protocol?
Well done Mary. You clearly love James very much.
The main concern is that James may not have responded to testosterone lowering treatment but that his thoughts and feelings may have responded to his belief and your belief of the treatment including injections i.e. the placebo effect.
Many people think that the placebo effect is underused in Medicine. About 1 in 3 people respond to something which is pharmacologically inactive such as water or salt water injections.
However, Lupron is pharmacologically active and testosterone does reduce dendritic spine density i.e. it is not exactly a placebo.
http://cat.inist.fr/?aModele=afficheN&cpsidt=1132894
Unfortunately the proponents of Lupron treatment do not provide a critical analysis of their results of many autisitic children and speculation continues.
In fact some conventional treatments such as risperidone do not stand up to critical analysis but are used by conventional doctors.
Such is the current ignorance of the medical profession regarding autism. Maybe things will improve if the doctors caring for patients with autism get their act together and coordinate their proposed treatments.
Meanwhile, good luck with your approach and dont be too annoyed with other people who dont have the answer either.
James started the labs for the protocol in March 2008. We agreed to start the protocol after a thorough review of all the labs by the end of April 2008 but had to fight with the insurance company (Anthem Blue Cross) for coverage. James was on the injections from May 2008 until the end of January 2009. The way we finally got coverage was that the insurance agreed to cover it under major medical after our max-out-pocket was met — that was $5,000. After that insurance paid 100% through December. Then in January 2009 we had to come up with another $5,000. We couldn’t do that so the Geiers, working within our budget constraints, switched James to a drug called Androcur (pill) which we get from Canada. Not as effective (as evidenced by labs) but still does the job.
As far as James no longer being autistic….there are therapists who feel that if I were to get him assessed by a psychologist who knew nothing of his history he would no longer be considered on the spectrum. I am going for full recovery and we are definitely headed there.
James was never diagnosed with precocious puberty by any of his other doctors (and there have been many.) James has always been small (25 percentile) but very hairy (hirsutism). We had lots of problems when he discovered his “maleness” — he really enjoyed being a boy. When he was about 7 his aggression level became more elevated. He never hit anyone, but he would throw things and was often defiant. He was called a bully by the kids at school (all 60 pounds of him.) He was actually suspended from school at the age of 9 for throwing an object down the stairs in anger and then making rude remarks to the instructional aides. I never considered the possibility of James having high testosterone until I heard the Geiers speak. In March 2008 his labs showed that he had a testosterone level of 47…that of an adult male. It should have been 25 or less. So the issue with the insurance company then was not whether or not a trial of lupron was appropriate, but that my coverage only allowed for $30 per injection. This was impossible when the lupron cost (for his dailies and the bi-weekly) ran $5,600/month (at least this is what the pharmacy billed the insurance company.) Hence I fought for coverage another way – the major medical route as opposed to the prescription coverage.
James has had years of behavior therapy, OT, speech, vision therapy, etc. But when you ask about “therapies” I am assuming you are meaning “biomedical.” Prior to lupron last March 2008 James just took lots of supplements (standard vitamins, omegas, calcium, etc.) and was on the GFCF diet which didn’t seem to help that much. We did do HBOT for a couple months, but that really didn’t seem to help James that much either. James has had huge gut issues all his life. For over 5 years, he was under the care of a pediatric gastroenerologist at Childrens Hospital who specialized in kids on the spectrum. His treatment plan was Miralax. And when things got worse it was just more Miralax. In December 2008 James was scoped by Dr. Krigsman (works with Wakefield) and he was diagnosed with autistic enterocolitis which explained alot. Rather than take the heavy steroids prescibed by Krigsman we have switched to the specific carbohydrate diet(SCD) and really focused on yeast issues. James also is only drinking kangen water exclusively now — no juice or sodas. This has helped tremedously. We also started valtrex in March. Just today we started with OSR for chelation.
How much time and money have we spent on this lupron protocol? Time mostly in the beginning going to the lab for blood draws and then at home collecting and sending urine/stool samples, consults with the Geiers, arguing with the insurance company and now calls to the Geiers to clarify or adjust dosages. We do labs every other month now. Money – the $5,000 out-of-pocket for the lupron last year and now the cost of the androcur we have to pay ourselves (about $280 for a 3 month supply.) Plus the labs which are covered by insurance except for about $60 each visit.
I am a parent of a 2 year old who has been diagnosed with PDD-NOS. Can I just share how very exhausted I am from trying to understand all this crap? I am not an unintelligent person. For God’s sake I graduated #1 in my class at an ABA-accredited law school and am a licensed practicing attorney whose major client is a fortune 100 company, and I cannot figure this sh*t out. To be honest with you, all my standard ways to gauge whether people are credible or not are just not working. Sure most of these parents are obviously uneducated. Like Mary said, that doesn’t mean they are wrong. Sure a lot of these practitioners don’t have randomized, controlled, double-blind studies, or whatever the he** you call them, but come on, people, but again that doesn’t mean that what they are saying isn’t right. Over 95% of the decisions each of makes every single day are not supported by the scientific method, that doesn’t mean all of our decisions are stupid or wrong. I am trying VERY hard to actually get to the bottom of these issues myself, but it doesn’t help that the critics of the “fringe” practitioners, for lack of a better term, the so-called conventional doctors, never seem to have anything better to offer but to say that the fringe treatments like lupron have not been proven. As an attorney, I can’t help but noticing that in every debate, each party has tacitly shifted the burden of proof to the other party. “you haven’t proven that vaccines aren’t safe” “well you haven’t proven that they are” “well you haven’t proven that Lupron is safe” — the issues have become so polarized that as far as I can tell everyone who has ever written on this issue cannot resist doing so without accusing parties on the other side of being stupid or dangerous or greedy or incompetent some other variant of what I consider to be ad homimen attacks. You know, even if you are right that the person you are talking about is stupid or what-have-you, it really detracts from your credibility to strangers like me who, not knowing you or being able to understand the science, can only sigh and say, “G*dd*m it, there’s another person with some sort of axe to grind, I guess I can’t just believe what this guy says either.” You cannot imagine how deeply I want to believe the white-coats. By the way, I should point out that my mother is a physician, and so is my best friend since childhood. I have never even been to a chiropractor. But when your child has problems, and the conventional doctors make it obvious that they don’t know what they are talking about … and believe you me, if there is one thing I am quite certain of, it is that most of the conventional doctors have their heads up their ****** but their egos will never in a million years let them admit it … and you get emails from friends of friends, intelligent, successul, um, I hate to say it, but you know — normal, conventional people, and they all say they same thing (you had better explore what DAN! and others have to say and judge for yourself), I can’t just ignore that. I can’t just ignore the possibility that my son has some sort of immune disorder that will worsen every time he catches a cold, cumulating ultimately in the possibility of a lifetime of anxiety and mysterious, annoying physical ailments, and who knows what sort of difficulties that might make it difficult or painful for him to do something as simple as order a hamburger at Wendy’s. I can’t ignore the possibility that somewhere, out of all these disparate crazy or not-so-crazy groups, some person actually knows what they’re talking about, and can help me help my son. My son who of course has empathy and of course loves and laughs and communicates, but can’t pass a normal bowel movement and periodically, for no reason whatsoever, stares off into space and becomes totally unresponsive, or simply refuses to acknowledge his mother when she comes into the room. I am just desperately seeking someone to explain all of these theories, to discuss all these people, all these controversies, in a neutral, balanced way, with no agenda. Where is that person?
I apologize that my recent comment was way too long, a bit too emotional and filled with many typos. I tried to edit it for the benefit of later readers but sadly was denied the rights to edit it for some reason. Sorry about that everybody.
It can be hard for none-scientists to understand scientists.
““you haven’t proven that vaccines aren’t safe” “well you haven’t proven that they are” “well you haven’t proven that Lupron is safe”
The fact is science can’t prove anything is safe for absolute certain – all it can do is say there is no evidence it is un safe, or its definately unsafe – just like a ciminal prosecution where by not guilty doesn’t mean definately did not do it – just that there is no evidence.
The important thing is when new or experimental treatments come up that before being tried on people there should be sound theory behind it – most scientists appear to reject the lupron theory there is no science to back it up. There should also be some indication of possible harmful side affects – has this been done, and then a rigorous study to show it works.
In the absence of science on these points its a big risk to take with a lot of unknowns – when if people really beleived in it or really wanted to help autistic children they would be doing all they good to test it out first.
Mary – of course the Geiers have helped you with you insurance company – otherwise they wouldn’t get paid, they don’t care where the money come from just that it comes.
To the Yahoo commenter,
First of all sorry about you not being able to edit your comment. I’ll look into why you couldn’t do that.
You raise points that I think every parent new to diagnosis feels. I know I did, 6 years ago when I started this blog.
But there are times when you have to be coldly logical and times you can make an emotional choice. Its very true that your parent and your friend won’t be able to offer you any ‘cure’ for autism or any fixed reason as to why autism occurs. Thats because no one knows. But the fact science/medicine don;t know doesn’t mean another bunch of people do.
The fact is that everything that we _do_ empiricaly know about autism has come from science. And nothing in that has come from the DAN organisation or people like the Geiers who rely on emotionally laden parent testimony as from Mary above.
Lupron is a horribly dangerous thing to give a developing body for no good reason. And Mary may well believe she sees improvement but she wouldn’t be the first (or last) to make associations she really _wants_ to see other than ones that are actually there.
‘What causes autism’ is a scientific question. As is ‘what may cure autism’.
Lupron works by binding to and activating the receptor that regulates the production of hormones by the gonads, it activates and blocks the gonadatropin hormone releasing hormone receptor. When it does this, there is a transient increase in testosterone for up to a few weeks. As seen in this package insert from the manufacturer.
Click to access Lupron%20Package%20Insert%20(4%20month%2030%20mg).pdf
The package insert cited above has a graph of testosterone levels that very clearly shows this. It says:
”Initially, LUPRON DEPOT, like other LH-RH agonists, causes increases in serum levels of testosterone to approximately 50% above baseline during the first week of treatment. Transient worsening of symptoms, or the occurrence of additional signs and symptoms of prostate cancer, may occasionally develop during the first few weeks of LUPRON DEPOT treatment.”
The immediate response to Lupron is an increase in testosterone. If there are changes to behavior that occur promptly (i.e. in less than 2-3 weeks), then those changes cannot be due to reductions in testosterone because testosterone doesn’t decrease during that time.
This is an important property of Lupron and the other LH-RH agonists; a property that any endocrinologist would know. If children are experiencing immediate behavioral changes, those changes cannot be due to decreased testosterone. Figuring out what those behavioral changes are due to would be important in achieveing a therapeutic effect (which is not due to reduced testosterone) from the side effects of chemical castration.
Hi Yahoo Commentator –
Your frustration is rational and well understood by many.
If your child continues to experience persistent gastro intestintal problems, you might consider dietary restriction / changes. There are many options in this area.
Have you given your child an EEG?
I would be happy to discuss any biomedical treatments or research that I know about. passionlessDrone@yahoo.com I know very little, or nothing, about Lupron.
– pD
Response to the last post: I mentioned that many, many of my sons biomarkers were out of whack. You incorrectly assume that the change in his behavior within the first few weeks (one or two — geeze shoot me. It was soon after the start of the protocol) was from reduced testosterone levels. His glutathione was very low, his estrogens and estradiol were way low, his hemoglobin and hematocrit were high, his androstenedione, dihydrotestosterone and testosterone were way high, his growth hormone was way low (this partially explained his limited growth over the prior 2 years), his DHEA was way high and his ammonia levels were so high they had an “alert” status on them. This protocol started helping him within weeks. Why? I don’t know…once again, maybe if more scientists would focus on us 300+ families whose kids have so dramatically seen improvement instead of bashing the Geiers…. Why are you so damn vehement to destroy this all in print? Agenda please? The way it usually works in these circles (at least from my 10+ years of experience) is that I share my son had great improvement on this “ABC treatment” and you say, “wow! fantastic! tell me more about it…” Could it be that this is all attached to the Geiers?…the doctors whom it seems so many love to hate? Or is this threatening in some way to prominent others? (“Shucks, I should have thought of that – now my theory/paper is worthless?) Was a child reported so terribly harmed by this? You have parents IV dripping toxic substances weekly for months at great cost into their kid’s veins to reduce metals with no results and no ones screams about that…
To the dad who wrote that long post (it wasn’t too long or emotional) — don’t give up! The journey may be the most arduous challenge of your life. Trust your instincts. You are your child’s very best advocate! But the blessings are many. I strongly urge you to check out the specific carbohydrate diet for GI issues (wish I’d known about this sooner), get any fungal/yeast issues under control and check out http://www.stankurtz.com for some ideas. Stan is a dad who recovered his son and now is the president of Generation Rescue, Jenny McCarthy’s group. You can get mentors from TACA (I am one) and “rescue angels” from the Generation Rescue site. I have always found other parents and the conferences to be the most valuable. Stay plugged in.
What causes autism is definitely from science and what will cure it will also be from science but this all swirls within our universe of human thought and action. Be careful not to assume you are so very wise…the truths of science exist regardless of human knowledge or explanation.
To Kev: James was on lupron from May 2008 through January 2009. Due to financial constaints he is now on a pill called androcur that I get from Canada (still with the Geiers.) Doesn’t work as well as evidenced by labs, but good enough. Despite all the signs and doctors, James was never diagnosed with precocious puberty. James was never on any other type of biomedical therapy until the lupron. Now we are doing lots more (anti-viral, anti-fungal, OSRs for chelation, changed to the specific carbohydrate diet.) He has had years of OT, speech, vision therapy, ABA, etc. The cost of the lupron for us given our insurance plan (had to fight) was $5,000 max out of pocket and then they covered 100%. James is very close to recovery. I can honestly say that I do believe if we stay on track he will be a functioning, happy, independent adult. He’s an amazing kid. I love him!
And to respond to the post about the Geiers “of course” helping me with insurance so they can get paid. Cheap shot. Believe me, I know many doctors who get paid very well for very little. That’s not the Geiers. Do you not believe in any decency in humanity? I for one could not go through life without believing in the good of people. Lots of bad to be found for sure….but I tend to focus on the good. My days go much better.
Am I some emotional sop? A rose is a rose. (And by the way, I received a degree in biochemistry from UCLA and still attribute so much of my son’s progress to lupron!) But I know that I am forever grateful for the day I happened upon the Geier’s lecture. I say my prayers every night for direction in recovering my son. James was God’s plan (he was a “woopsie” when I was 43…there goes the retirement!) and God has been good and faithful.
The difference between the mainstream doctors and DAN! doctors, is that the former generally admit they don’t know what autism is. The DAN! doctors also don’t know what autism is, but they claim or pretend they do. If they actually did know, it would not be difficult to demonstrate. But they haven’t.
So who do you trust? The logical answer seems straightforward.
There is ongoing research into the effects of sex steroids and other steroids on dendritic spine shapes/numbers.
http://www.jneurosci.org/cgi/content/abstract/10/4/1286
Did the estrogens,estradiol and DHEA normalise with treatment?
I really appreciate everyone’s replies to my post. I’m kind of embarrassed about my late night profanity. {sheepish grin} It’s obvious that EVERYONE here cares a lot about helping these kids, and that really is important. I am behind on work, thanks to being unable to tear away from endless web surfing about autism, but I wanted to say that it has not been my (admittedly limited) experience thus far that mainstream doctors generally admit they don’t know what autism is. If they did, they could not be so quick to offer a one-size-fits-all approach, which it seems they do. They would not diagnose so quickly, based on so little, which they do. As demonstrated, I am no scientist and never have been. However, it seems to me that if you do not know what autism is — ie, if you cannot define the group of people who have it and say, those people all have the same thing rong ith them, and that thing shall be called “autism” — then you could not possibly ever design any valid study. The problem lies in the fact that doctors (quite logically, from their perspective) deal in probabilities. This is human nature. If you give something to 1,000,000 people and only 2 of them get hives, do you decide that it’s not statistically significant or do you try to figure out what might be different or special about those 2 people that caused them to get hives? I have read medical textbooks on vaccines, and while I didn’t understand most of it, it was clear that it is a concern for children with autoimmune disorders to have vaccines, and there are at least a couple of extremely rare disorders that can be triggered by certain kinds of vaccines. I then read elsewhere that a Harvard researcher thinks that autism is in at least some children a part of some sort of autoimmune disorder. So how exactly is it far-fetched for a parent with an autistic child to be concerned that some vaccines might have a detrimental effect on their child? For myself, I have, for the most part, decided that the risk of infection is more harmful than the vacccine, but I am very unhappy about the nature of the rhetoric out there on this topic. I was also quite unsure what to make of the recent news that some study has shockingly uncovered that flu vaccines actually triple the probability that the child receiving the vaccine will be hospitalized for the flu. Since I was pressured into accepting this vaccine by being regaled with horror stories of children who died in the hospital with the flu, I am, to say the least, extremely angry about this. I have seen little sign that conventional medicine can be depended upon to be appropriately rigorous or to avoid undue influence from big pharma and other high-level players. I have enough experience as a corporate lawyer to know how those games are played. I also know from personal experience that conventional doctors are just as human as everyone else, and that no matter how smart they are or how well educated, they each have their own unique rather unscientific biases of which they have a marked tendency to be utterly unaware. If you have ever laid in a hospital bed and listened to your mother tell you all the reasons why your obstetrician is committing malpractice or that your pediatrician obviously never fully understood how vaccines work, or listened to your best friend gripe about some idiot attending physician who clearly knows nothing about infectious disease and therefore caused the death of some poor little old lady who shouldn’t have died, but whose poor family will never have ANY CLUE that that is why she died … or told your best friend after the fact about some ER visit only to have her go off in a rage about the fact that the ER doc failed to put your son on IV antibiotics when any one should have known that … well, let’s just say, when you have these experiences, you can never, ever look at an M.D. the same way. A degree and a license does not make someone wise, objective, caring or right. Sad but true. But when your child is ill, you have to be right. You have to be just as right as you possibly can be. There is no way on God’s green earth I will ever just take somebody’s word for anything about my son’s treatment. That says, I highly value each and every word that EVERY ONE of you has shared, because your opinions have been hard-won, I know, and somewhere in between all of this stuff is the truth. If there is one thing I have already figured out, it is that there is absolutely nothing black and white about autism, and as soon as anyone begins to sound like they are thinking in a black-and-white manner about it, that is the very moment that I discount everything they else have to say. How in the world I’m ever going to earn an MD I don’t know, but it’s becoming increasingy apparent that it’s time for me to learn something about biology. I sure wish I had paid better attention in my science classes in college. It’s hard to learn new things when you’re 40. Well, for me, anyway. Thanks, everybody, especially for being so understanding.
So what Yahoo commentator is struggling with is the fact that everyone has biases and agendas, so everyone could be wrong and anyone could be right. How can you tell who’s being honest and so on?
You can never be sure, but I’ve been involved in these debates for a long time, and in my view, there’s no equivalence in the positions, in several areas.
– There’s no equivalence in intellectual honesty. I can provide some examples.
– There’s no equivalence in the quality of the science. This can be objectively compared and constrasted. (Or see the Omnibus rulings.)
– There’s no equivalence in the “true believer” status of the parties. For example, the anti-vaxers, as a rule, could never be convinced by any evidence that their position is incorrect. Scientists, on the other hand, tend to have evolving views, by the very nature of science. Also, no anti-vaxer will probably ever admit, as I have, that everyone has biases and agendas. Anti-vaxers speak with certainty about things they cannot be certain about. Scientists use words like “probably”, “likely”, “no convicing evidence”, etc.
For that matter, there’s not even equivalence in conflicts of interest. A lot is made of Big Pharma COI, but I bet you can’t name a single mainstream scientist who was paid a million dollars to produce an autism-vaccine study. Not a single one.
Not all opinions are equally valid, and science is not just one more “way of knowing” out of several out there.
Everything you say may very well be true (certainly you have put your finger exactly on my problem), and I appreciate your thoughts, but:
(A) where do I go as a newcomer to discover for myself these examples about intellectual honesty? I would love to see evidence that, shall we say, goes to the credibility of the source. But many of the sources of the unconventional information are not so obviously not credible. The local DAN! doctor where I live IS conventional doctor. She is a developmental pediatrician who has an MD, did a residency and more. She is, as far as I can tell, a very well educated and very smart lady. So how do I decide that she is somehow wrong but the other developmental pediatrician who has not ever gone to a DAN! conference, but who, by the way, spent about 5 minutes with my son and made no effort to test him for anything whatsoever or help me actually treat any of his GI symptoms or sleep disorder, nor could he explain what autism has to do with these other things … how am I supposed to just conclude that this other doctor is more trustworthy just because he is NOT affiliated with DAN!? My own pediatrician, a lovely, pretty conventional and very smart lady, has told me that personally she thinks there really could be something to the oxygen thing. My son has had episodes of documented low oxygen when he was hospitalized. So is she nutty too, now?
(B) OK, again, I am new. I have no idea what the “omnibus hearings” are. Would love to hear more. My complaint, which is not your fault, but I suppose like Job I am crying out to God here, is when in the world am I supposed to go do all this exhaustive research to learn for myself that the science is not equivalent without taking the word of some total stranger on teh internet for it? No offense, I think you’re probably a smart guy and probably even right, but I can’t just take your word for it.
(C) True believer status … that may be true of the people in the press, but I have spoken with many, many parents who are not “true believers,” they just want to do what’s best for their children … and what they believe, based on having a lot more experience and research than I have (done), is that vaccines have aggravated their children’s conditions. Not caused, but aggravated.
(D) as for conflicts of interest, I think that you are probably referring to something in particular that I again frustratingly know nothing about. I’m not sure who you are saying was paid a million dollars to produce an autism-vaccine study? I would love to know more if you care to share the information. Who was paid the million dollars and what did they do with it?
(E) Of course all opinions are not equally valid, which is the very source of my problem.
There are many examples, I’m sure. Let me just give you a recent one. See this post by Dr. Steven Novella in response to JB Handley. Specifically, this part:
Very straightforward. Do you think JB Handley ever admitted his mistake publicly? Not that I can find.
Another obvious example is the Geiers’ plagiarism of a early paper draft.
Crap like this goes on all the time in autism, and there’s a pattern as to who the players are.
Hi Yahoo Commentator –
Please, please do not believe that in order to take your child to a DAN doctor that you must automatically believe that autism is caused by vaccines. You can treat your child’s medical problems without taking any stance on vaccination and autism.
So how do I decide that she is somehow wrong but the other developmental pediatrician who has not ever gone to a DAN! conference, but who, by the way, spent about 5 minutes with my son and made no effort to test him for anything whatsoever or help me actually treat any of his GI symptoms or sleep disorder, nor could he explain what autism has to do with these other things … how am I supposed to just conclude that this other doctor is more trustworthy just because he is NOT affiliated with DAN!?
The need not both be wrong. In all likelyhood, however, the doctor who has decided to specialize in treating children with autism simply knows much more about autism than your ‘regular’ pediatrician. I’d make a million dollar bet that your DAN doctor knows well enough the depth of the research into immune system differences in autism, while your regular pediatrician doesn’t. Your regular pediatrician is seeing kids all day long; not reading up on very recent research that affects a small percentage of his patients. Likewise, your DAN doctor has probably seen dozens or hundreds of children like yours with persistent gut problems, while your regular pediatrician has seen probably only one.
Have you tried melatonin for sleep problems? It has been tested well in the autism population.
– pD
After reading the specific material referenced here about Lupron, I do wonder whether the information from the clinical trials that is cited in the packet from the information is necessarily indicative of what a child with autism (or whatever) would experience? Does anyone know? I do not understand all of these theories yet, but it does strike me that if a child has something weird going on with his or her hormones, he or she is not necessarily going to respond to the drug the same way that the presumably neurotypical population did. Did that population actually start with higher-than-normal levels? Is it an all or nothing proposition, then? If your child has been clinically proven to have higher-than-normal levels of testosterone, is it not pretty easy to find out? Is it really better not know? Is it really better not to do anything about it? Are your only choices to either leave him be with elevated testosterone or totally castrate him? Surely that is not true. And wouldn’t you continue to monitor his testosterone levels with repeat testing to make sure they don’t in fact become too low? I must be missing something here, please someone explain this to me. I am especially stunned to read about a potential connection between autism and testosterone because I have twins, and my neurotypical son’s private parts are MUCH smaller than my autistic sons. Before I had any idea that my autistic son was autistic, I used to worry about it, because I was afraid that there was something wrong with my other son and that his private parts wouldn’t be big enough. I know that probably sounds silly to you, but that is motherhood. The pediatrician laughed and says that just happens when you have twins, they are all different, and that my sons are just different. She said the same thing when my husband and I asked her — again way before anyone ever suspected my son had austism — why my son (who later proved autistic) has erections all the time, which we were unprepared for and seemed kind of weird. Say what you like, that it is a pretty durned striking coincidence. Or does testosterone not have anything to do with the size of reproductive organs and frequency of erections? My son is only 2 years old … Conventional science people, help me out here, tell me again that these DAN! people don’t know what they are talking about. I really AM listening. I am listening very, very hard.
What interventions do you currently have in place for your son? What labs have been run and what were the results. Are you at least on the basic multi-vitamin, cod liver oil (omegas), and GFCF diet? Are you plugged in to local support? Too much info can be paralyzing.
You are so right about the too-much-info thing, and I already have a life-long problem with analysis paralysis, lots of laughs! I had to learn the hard way that for some reason busy corporate executives do NOT like 20-page memos, hee hee. Anyhow, was already doing basic multi-vitamin and doing a lot of omega-3s, Salmon 3x per week, lots of olive oil and canola oil, but at diagnosis I went ahead and added 1/2 Tbsp per day of a Spectrum formulation of Flax oil plus DHA, which has a balance of many times what a normal child might need, but was also very similar in composition to some supplements that have proven successful among children with communication disorders according to a NY developmental pediatrician who happens to also be a certified speech and language pathoologist. We were already CF because my other son is allergic to dairy as it happens and I am breastfeeding anyway. When I researched gluten I learned that gluten allergy underlies celiac disease, which I hadn’t known before, and that it is highly genetic. I also learned, according to the national institute of health, by the way, that celiac disease is associated with epilepsy, lupus, lymphoma, thyroid problems and a bunch of other stuff. Since my grandmother died from complications from late-diagnosed celiac disease, her brother died in an institution due to epilepsy, my dad died of lymphoma, I (and an aunt, a cousin, and my grandmother) have thyroid problems and my dad’s sister has lupus, yeah, I pretty much went gluten free right away because at that point it seemed kind of obvious that my family is allergic to gluten. I also later discovered that I probably have dermatitis herpatiformis, a weird itchy annoying thing involving bumps on my elbows and knees that is apparently also caused by gluten allergy. I saw 4 different doctors about it when it first happened 5 years ago and when no one could help me I decided they were wasting my time and just started living with it. The bumps started to clear up when we went gluten free. Well, here’s the thing. gluten free sucks majorly. I mean, it turns out I REALLY love gluten. a lot. It was very, very painful to be gluten-free. It’s true that my son seemed to be doing much, much better. It was kind of amazing actually. When he was diagnosed at 24 months, he wasn’t talking at all, but within a month he said: “food.” I said, “what about food?” he said: “I eat food.” I said, “what kind of food do you want?” he said: “Broccoli!” I cooked him some broccoli and he ate it. But there are so many confounded variables here. I also was giving him intensive my-version-of-home-provided Floortime therapy. Plus there was the oil, which there is a lot of anecdoctal evidence for, etc. So … I decided to get him tested for gluten allergy, because if he tested negative for the antibodies, by God I wanted my pasta back!! Well, he tested negative and I was overjoyed and MUCH yummy pasta was then eaten. It’s true that my rash is back and I need to get tested myself because I no have a benign tumor on my thyroid so even if my son is not actually allergic to gluten I need to face the reality that I probably am, but I am not happy about it. Anyway, eventually I found out that going on a gluten-free diet for 3 months before you get tested kind of invalidates the test results. {sigh} So … since we have been gluten gluttons (sorry, I couldn’t resist) for the last several weeks, I am going to have my son re-tested soon. They are going to run some genetic tests at the same time, and possibly a RAST test as well. I am still in the process of trying to decide whether or not to visit a DAN! doctor, and if so, which one (since they are obviously not all the same, at all). I love to get really well educated about things before I act. I have been heavily influenced thus far by a blog called A Little Bit Autistic, which I really enjoy. Smart and funny “lady lawyer” as a colleague of mine says writes it, and she has a son who is uncannily similar to mine. They say there are several subcategories of PDD-NOS and her son and mine seem to fit into the same one, whatever that is, except that her son is almost exactly 1 year older than mine. She’s kind of my crystal ball, so you can imagine why I really like her blog. So far, I have read The Mislabeled Child by Drs. Eide, Engaging Autism by Stanley Greenspan, How Children Learn to Learn Language by someone I forget, and a whole bunch of books on communication that I checked out from the local university library. I’m planning to read Thinking in Pictures soon. I’ve read some stuff about ABA but I still don’t really understand what that is either. yeah, I’m paralyzed.
ps — well, I should have read the full article before I started posting, because now I see that several people have stated that after looking at the sort of labs that the doctors in the article are doing, that they are not actually doing appropriate tests in order to make sure that the children they are giving the lupron to actually do have elevated testosterone levels. I think it goes without saying that nobody should give a child artificial hormones or something that artificially depresses hormones without being as certain as possible about the child’s actual current levels. But doesn’t that beg the question of what to do with a child who has been demonstrated to have excessive testosterone? And while it’s all well and good for researchers who are tring to solve Autism for everyone to claim there is no clear link perhaps between Autism and testosterone, isn’t there enough of a link for an individual parent to make sure that HIS child or HER child doesn’t have excess levels? Given all that seems to be out there about how off the metabolic processes are of autistic children, how come so many conventional doctors do not run these kinds of tests? Our developmental pediatrician made no effort to test for ANYTHING, until after reading about the epilepsy risk I requested an EEG. A related issue I am struggling (ALONE) to try to figure out is melatonin. Again, I got no help here from the physician, except to say, yeah, kids on the spectrum don’t sleep well. I had to find out for myself that studies suggest that kids on the spectrum have below-average melatonin levels. So, should I give my son melatonin? Animal studies show regular melatonin supplementation could long term shrink the gonads (because it reduces testosterone? is this stuff related? beats me.) Gosh it would be nice if I had some idea whether my son’s melatonin levels were too low. Who is going to help me figure that out? Nobody, I guess.
You would lose that bet hands down for the local DAN! doctor here vs. my pediatrician.
If only I could cash that check.
The simplest answer–take the kid to a qualified, certified endocrinologist.
Much of the DAN! lore seems to go: “your pediatrician doesn’t know about these things. Come to us”. Well, if my pediatrician doesn’t know about, say, hormones, I go to a specialist in hormones (endocrinologist). Just like if I suspected heavy metal poisoning, I would seek out a qualified, experienced toxicologist. “I saw a talk at a DAN! conference on this” doesn’t compare to “I did my residency and spent the last 10 years treating this”. Not in my book.
But then you won’t get the “right results.”
My point here is that it is a major shame that I have to do 30 hours worth of research on the internet to even come up with the notion that I need to see an endocrinologist. And when it comes to judging the credibility of my current developmental pediatrician vs. the other developmental pediatrician who has gone to DAN! conferences, gosh, why didn’t my current developmental pediatrician refer me to an endocrinologist? Note I have not gone to the DAN! doctor [yet] because I am still trying to judge all this crap. However, again, the DAN! doctor in my city did not only a residency in Pediatrics, but also a fellowship after that, in developmental neurology. She has spent many more than 30 years treating children with developmental disorders. She not only has admission privileges at area hospitals, she sits on boards at those hospitals and on national organizations. She authored a chapter in an AAP-published book — for doctors — on ADHD. What has me baffled is why I am supposed to decide that she is a quack just because she is affiliated with DAN! Do you get my drift here? I am trying to find myself a qualified doctor to make my child to. A friend recommends DAN! I start researching and I open up this giant can of worms in which all these people on the internet start suggesting that every doctor out there in the DAN! organization is some sort of quack. I’m trying to get to the bottom of it, but I am not having an easy time of it. This doctor looks just as qualified as the one I’m seeing now, with the exception that she spends A LOT more time with her patients, doing individual testing and analysis, whereas the non-DAN! doctor does not. Again, I didn’t suspect hormone problems, I didn’t suspect heavy metal problems, because the non-DAN! doctor never even mentioned them. He never mentioned anything except that no one had any idea what caused autism or what anyone could do about it, except Floortime and occupational therapy. The idea that there was something biological that could be happening I stumbled upon all on my on. For all I know, the DAN! doctor would have referred me to an endocrinologist. Again, tell me how exactly I am supposed to conclude that the DAN! doctor with impeccable credentials is a quack and the non-DAN! doctor who has been incredibly unhelpful from start to finish is the one I should be listening to? I am not interested in trying to be my child’s primary care physician. I want a primary care physician who actually knows what he or she is doing and who actually cares enough to take the time. Maybe there just isn’t one. But am I supposed to take my child to every specialist under the sun? To have what tested? How do I know what tests to run without doing a bujillion hours of research myself? I’m not saying the DAN! organization is not quackery, I still honestly have no idea. I’m also saying that they have been allowed to fill a vacuum that conventional medicine has created.
If the vacuum you are talking about is the business of autism treatment–sure, DAN! has filled a vacuum.
If the vacuum is the actual treatment of autism, is there any evidence that DAN! has filled anything?
There is no vacuum of knowledge “created” by anyone. The fact is there isn’t a very good understanding of how to treat autism. But, I’ll take an honest “I don’t know” over a fake “we have the answers” any day.
Lots of people swore that mercury was the cause and chelation the answer. They were “filling the vacuum”. They were wrong.
Hi Yahoo –
My point here is that it is a major shame that I have to do 30 hours worth of research on the internet to even come up with the notion that I need to see an endocrinologist. And when it comes to judging the credibility of my current developmental pediatrician vs. the other developmental pediatrician who has gone to DAN! conferences, gosh, why didn’t my current developmental pediatrician refer me to an endocrinologist?
Hehe. Indeed. The reason is, they don’t know anything about autism; excepting apparently, Sullivan’s pediatrician.
The idea that there was something biological that could be happening I stumbled upon all on my on.
There is still considerable resistance to this fact, and you have stumbled into a hotbed of it at this location. The reality is, all but the youngest of pediatricians simply received no training in autism, considering it was virtually unknown when they were in medical school.
But am I supposed to take my child to every specialist under the sun? To have what tested? How do I know what tests to run without doing a bujillion hours of research myself?
The only way to do this is to see a doctor who has experience treating autism as a medical condition. Most DAN! doctors will ask you to allocate two or three hours for an initial appointment in order to try to generate a history of your child and his or her behaviors/symptoms.
Unfortunately, you aren’t likely to find anyone who has all of the answers you are looking for. You are in for some research; but lucky for your child, you appear to have the desire to do so and the willingness to look for help. Some people advertising as DAN doctors are quacks, no doubt; but this does nothing to change the biological nature of autism. There are many other boards where you can post the name of the local DAN doctor and get feedback from parents; this can be a valuable guide in determining if you are a good match.
You’ve reached all of the right conclusions already. Get on the waiting list for the DAN doctor you have mentioned.
– pD
You can paypal the $1M to Kev’s account. I’m sure he will split it with me 😉
pD–why aren’t you suggesting that this person seek out actual specialists in the areas you think are important? Why not a specialist in immunology rather than a pediatrician who has taken a, what 8 hour?, class at some DAN! conference?
Why doesn’t that make sense to you?
As to whether something biological could be happening–er, we are people, right? I guess if I don’t buy my kid mB12 lollypops, I don’t believe that my kid is biological?
yahoo poster, if you are a lawyer, reading the decisions in the omnibus hearing will be very informative.
http://www.uscfc.uscourts.gov/node/5026
The special masters minced no words in laying out the basis for their decsions. It is not a close call. Respondents had world-class experts.
Then look at who the various biomedical and anti-vax organizations hold up as their “heroes”. They are pushing treatments to “cure” autistic children based on ideas of autism which were dismissed by the special masters. If those autism advocacy organizations are interested in helping children, why do they censor all opposing viewpoints?
The problem is that physiology is really really really complicated. Physiology is so complicated that it is extremely difficult to monkey around with it. Anyone who thinks they know how it works well enough to go monkeying around with it (without real testing) is completely full of themselves. It is a case of fools rushing in where angels fear to tread.
There are many failed treatments for autism, treatments that were tried, received positive anecdotes, were given to lots of children, then clinical trials were done which showed them to be no better than placebo. Treatments that there was never any real basis for other than a “feeling” by the quack pushing it.
Steroid physiology is very complicated. There are many compounds produced by many different tissue compartments which are consumed and turned into other things in multiple tissue compartments. Most of the regulation by steroids is local, within the tissue compartment it is generated in.
The “normal” range of testosterone in the blood is about an order of magnitude. The quantity of testosterone in the blood increases by about a factor of 100 when boys go through puberty.
If the Geiers were on to something with Lupron, where is their data? Where are their controlled trials? Where is the biological basis for what they are proposing to do? Not too long ago they were chelating the bejesus out of children to remove mercury that couldn’t be found. They made up all sorts of non-physical rationales why the mercury was undetectable, while ignoring the most obvious one, that they couldn’t detect mercury because there was no mercury present.
Well, here are a couple simple tests:
Does she chelate autistic kids? Does she believe that mercury is a cause of autism? If so, she has demonstrated that she believes in failed science.
If she tests for “mercury toxicity” using a “challenge” test, she has shown that she is willing to use false testing methods.
I wouldn’t care if she was the ex head of the National Institutes of Health. My kid would never set foot in her practice.
Just my opinion.
Hi Sullivan –
pD – why aren’t you suggesting that this person seek out actual specialists in the areas you think are important? Why not a specialist in immunology rather than a pediatrician who has taken a, what 8 hour?, class at some DAN! conference?
This is also a great idea, but the salient point here, already made by our Yahoo guest, is that a regular pediatrician will not ever think to refer you to an immunologist, or indeed, run preliminary tests that might give you a reason to think such an appointment might be necessary. Or any other specialist for that matter. At least that has been my experience, the experience of the Yahoo poster, and the experience of a great number of other parents I have met. If your pediatrician has referred you to an immunologist, or a mitochondria specialist, or a gatroenterologist, or an endocrinologist, or anywhere other than the local center that runs workshops on setting up trusts and behavioral therapy, you should consider yourself very lucky.
Why doesn’t that make sense to you?
You seem to believe that someone who has worked with hundreds of children with autism has no more pertinent knowledge, nothing more to offer, than someone who spent a Saturday afternoon in a hotel seminar room. That doesn’t make sense to me.
– pD
I really do appreciate everyone trying to help me here. I hear you saying, Sullivan, that science has actually proven that there is no link between mercury exposure and autism. Is that really true? Can you help me chase that down? Part of my difficulty here is that long before anyone thought my child had autism, my pediatrician recommended that if I was worried about plastics, lotions, etc., that I should get all of my information from the Environmental Working Group, because she told me that unlike a lot of the quack groups out there, they were (as far as she could tell) completely evidence-based. So I dutifully go there to see what they say about mercury? Guess what? They think there is a link. So now in addition to the DAN! doctors, my regular pediatrician is unreliable too? You understand why I’m depressed here? I can’t find anybody to trust. I here you about the DAN! doctors. I do know enough about chelation to be incredibly afraid of it, and it would take more than some flimsy piece of paper before I would let anyone chelate my son. But I need to know for sure what I’m doing, I can’t just ignore all of these other parents either. Btw, I have no idea if this doctor does challenge tests or not. Meanwhile, I gather than DAN! doctors do a whole lot more than test for mercury. It was a DAN! doctor who figured out that a friend of mine’s child had some sort of genetic mutation that has given him extremely high levels of homocysteine, which is correleated with fatal heart disease, stroke and seizures, among other things. The treatment is just folic acid therapy and B12, which is totally standard. There’s nothing quackish about that, I know because I checked. But her regular pediatrician didn’t figure that out. So … look, I have never even been to a chiropractor, so I’ll be honest: if anyone ever says someone is a quack, I am scared to go there. But on the other hand, the more I research the more it appears that a lot of children are receiving at least some medical treatments from these DAN! doctors that really are completely appropriate (like the folic acid therapy), that they would not have gotten anywhere else. If it hadn’t been for the DAN! people, I wouldn’t have figured out that *I* probably have celiac disease, and yes, I am going to see a gastroenterologist to have it properly tested. And I’m having my regular pediatrician test my son for the antibodies. But in the meantime, I cannot ignore the possibility that these DAN! doctors — or at least SOME of them (they do not at all all seem to be the same — are at least trying harder than anyone else, even if they are not always smart or right. I really value everyone’s input here, because I know that you all love your children and have worked hard to come to the right decisions, just like me. All we can do is the best we can do, right? You have all really given me a lot to think about. Daedalus2, you have reminded me that I need to get back to work, LOL. I will take a look, I appreciate the link. Sadly, though, I am pretty jaded when it comes to reading opinions of judges and justices. They are all extremely smart. If you’ve ever read an opinion of the Supreme Court, then 5 different concurrent and dissenting opinions, you rapidly figure out that although they don’t want to admit it, first they make up their mind, then they use their prodigious intellectual powers (and those of their clerks) to write the most compelling justification they can. And they (and their clerks) are very good at it. It’s what we all do. It was very demoralizing to go to law school when I learned that. And when you practice law and you work on a lot of cases, you rapidly learn that most court opinions do not reference most of the evidence or happenings. If something doesn’t fit well into the opinion, the court just ignores it. I have more than once been outraged to read an opinion that completely ignored what at the time seemed like the most compelling argument in a case. So, I need to read that opinion of course, but I don’t really put a whole lot of stock any more in court opinions.
I am reading all this and am so very overwhelmed. And I’ve been in this game for over 10 years. I can’t imagine what a newcomer must think. When I need help or direction or a job accomplished I go to someone who is successful and has results – regardless of all the papers published, degrees, titles, etc. I surround myself with positive open-minded, non-judgemental people (this does NOT mean people who don’t evaluate and form their own opinions.) I run 2 successful businesses and have almost fully recovered my son incorporating this philosophy into my life.
This is what I know:
My son’s levels of testosterone were 47 when his hormones were finally tested at age 9. He was hairy from the start, always small for his age. He became obsessively interested in his private parts and those of others when he was about 5. No doctor ever, ever thought to test for hormones before the Geiers. So I am grateful for the Geiers and their protocol. The Geiers are very accessible and provide in-depth phone consultations prior to ever recommending labs as a first step for their protocol. Monthly labs are required to monitor the success/required adjustments of the treatment. Phone consultations are easily scheduled at any time.
My son’s levels of mercury/metals are still very,very high per porphyrin testing from the lab Phillipe Augustine in Paris, France (for those new to all this porphyrin testing of first morning urine is the way many are going to test for metals.) I am just now starting chelation because from what I’ve read all these metals in my son are not good. I suppose you could argue that these labs or testing indirectly for metals is faulty…but I know I am trusting them. I have done blood testing, challenge tests…I’m sticking with France and porphoryn testing for now to monitor chelation progress. I do not argue that mercury caused my son’s autism…I know that mercury is one of the most toxic substances on earth and I want it out.
My son’s endoscopy, pillcam of the small bowel, and colonoscopy last December 2008 revealed he apthos ulcers, hyperplasia, lymphoid nodules in his intestinal tract. I waited too long to focus on healing his gut….but he is making fabulous progress on the Specific Carbohydrate Diet, enzymes, probiotics, anti-fungals.
I received more help/direction/successful treatment plan ideas from parents than from doctors. I then went to my DAN doctors (that is doctors with an “s”) to discuss and implement. I was told “you know you need more than one DAN doctor.” I found that to be true. My son has an endocrinologist, a pediatric DAN doctor whose son is autistic, and a GI doctor who specializes in treating ASD kids.
I received more useful and practical information from established websites than I ever did from internet blogs….this back and forth exchange is the first I’ve ever ventured into — quite an adventure for me….truly amazed at all I’m reading. Websites that really helped me are
http://www.tacanow.org
http://www.stankurtz.com
http://www.breakingtheviciouscycle.com
http://www.pecanbread.com
These are communities of successful people helping others along in the journey.
Conferences are always great.
With the rule that you are your child’s best advocate and only you can decide what comes next…
It is interesting to hear that the Geiers may have treated someone with true high levels of testosterone..
It is unfortunate that you don’t have testosterone tests from a younger age. He was tested at age 9–when it is reasonable for puverty to start:
http://www.mayoclinic.com/health/precocious-puberty/ds00883
“Puberty normally begins in girls between ages 8 and 12 and in boys between ages 9 and 14. Precocious puberty is puberty that begins before age 8 for girls and before age 9 for boys. ”
If you suspect mercury poisoning–why not use an actual medical toxicologist? They are trained and experienced in treating exactly this.
Of course, they wouldn’t do a challenge test or a porphyrin test. Those aren’t real tests for mercury intoxication. Sorry, I know you’ve bought into it, but the facts are the facts. Those are not real tests.
“So now in addition to the DAN! doctors, my regular pediatrician is unreliable too? You understand why I’m depressed here?”
Yes, your pediatrician has made a very unscientific and inaccurate statement.
I’d be depressed to. I’d be looking for a new pediatrician.
Thanks for the opportunity to clarify your misunderstanding.
I am saying (quite clearly) that if you suspect problems like immunological issues, see someone who specializes in immunology.
But, if you think that an 8 hour DAN seminar is OK for a pediatrician to get “on the job training” in immunology with your kid, that is your choice.
Given DAN’s track record of using fake testing (e.g. challenge chelation, porphyrin) or just plain guessing (e.g. antivirals) in place of the methodology that actual specialists would use, yes, I am very suspicious of the DAN approach to immunology.
I do consider myself very lucky. My pediatrician really knows his stuff. So do the other doctors we have seen.
If you are motivated enough to seek help in immunology/gestroenterology/endocrinology/metabolic disorders, why not be motivated enough to seek out the best?
pD–
tell me, if a DAN doctor finds immunological problems, GI problems or any other problems, does he/she try to treat it him/her self? It sounds like that is the case.
Why don’t they refer patients to specialists?
It has been my experience that most “specialists” don’t treat the child as a whole — all my doctors know that my son sees each of them and I share all labs and current treatment. Autism effects the entire body and a specialist see through tunnel vision. They’re work can be very helpful but limited. Do you know that the United States ranks 38th in longevity behind such countries as Cuba? Did you read the Dec08 Time Magazine cover article on the sorry state of our health? For all our vast knowledge and research we sure are a rather ill population and getting sicker. Do you know who lives the longest? The Japanese…. they treat the whole body and use all kinds of treatments we call “alternative”, having a very different approach to health (and vaccines.) We for a large part dismiss this eastern medicine because we just can’t explain it all.
Also, like everything else out there such as cars, stovetops, restaurants, dentists, hair dressers, not all doctors are the best at what they do. And what might be considered best for some would be considered unacceptable for another. Depends on the situation/kid/budget/etc. Also, “best” is a relative term (you can site data or polls but truly we all know data/polls can be tainted and manipulated and the source must always be taken into consideration. You know the phrase, “The best according to…” and then you either listen or dismiss the results.)….to me the Geirs are very good at what they have done for my son and to me at this point are the “best.” I speak from first hand experience and from where my son is now compared to where he was when we first started with the protocol. Why the protocol worked, placebo effect, the solution in which the drug was administered, the effect of the drug itself, I cannot answer. But my son it seems was a fit for their protocol. Not all kids are. You, I believe, do not in any way come close to my opinion of the Geiers and their abilities. But then, you have no first hand experience. And there may be those who tried the lupron protocol who are very disatisfied and think little of the Geiers, but was was their treatment actually directly with the Geiers or with someone just trying lupron on a patient? I know doctors who are experimenting with lupron. So you see my point. And my opinion is just as valid as your opinion. And they’re all just opinions.
I’m still sticking to what works for us. And I just keep going. When something doesn’t work (say like HBOT after $3000) I don’t trash it or the doctor who recommended it because I know it has had great results for other families. I just say it didn’t work for us and move on.
Also: yahoo groups are a great resource. Like minded people focused on sharing info specific to one issue in support of the greater good.
And this sums up many of the problems nicely.
Lupron has real, approved uses. That’s why it is a readily available drug.
BUT–I don’t see why doctors should be “experimenting” with lupron. Who exactly are they experimenting on? Why are autistic kids allowed to be experimental test subjects in uncontrolled experiments?
1) the logic behind the Geiers’ experiments with lupron was ridiculous.
2) the doses they are giving are 10x the standard dose.
This isn’t just “off label” use. Or, “let’s try this, it seems to work with other people”. This is an experiment. A poorly conceived, poorly executed experiment.