Parents using Lupron/chemical castration on autistic kids

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Parents using Lupron/chemical castration on autistic kids

Post by Cairber »

How can this be considered ethical? How in the world does it get covered by insurance?

http://www.chicagotribune.com/health/ch ... ory?page=1

It's 5 pages long but here are the first few:
Desperate to help their autistic children, hundreds of parents nationwide are turning to an unproven and potentially damaging treatment: multiple high doses of a drug sometimes used to chemically castrate sex offenders.

The therapy is based on a theory, unsupported by mainstream medicine, that autism is caused by a harmful link between mercury and testosterone. Children with autism have too much of the hormone, according to the theory, and a drug called Lupron can fix that.

"Lupron is the miracle drug," Dr. Mark Geier of Maryland said after meeting with an autistic patient in suburban Chicago.

Geier and his son developed the "Lupron protocol" for autism and are marketing it across the country, opening clinics in states from Washington to New Jersey. In the Chicago area, the treatment is available through Dr. Mayer Eisenstein, a family practitioner in Rolling Meadows.

But experts say the idea that Lupron can work miracles for children with autism is not grounded in scientific evidence.

Four of the world's top pediatric endocrinologists told the Tribune that the Lupron protocol is baseless, supported only by junk science. More than two dozen prominent endocrinologists dismissed the treatment earlier this year in a paper published online by the journal Pediatrics.

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

"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," he said.

Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children's heart and bones at risk. The treatment also means subjecting children to daily injections, including painful shots deep into muscle every other week.

This weekend, Eisenstein, Geier and his son, David, are scheduled to speak at the Autism One conference at the Westin O'Hare in Rosemont. The five-day conference, featuring a keynote speech by actress-turned-activist Jenny McCarthy, steps in where modern medicine has yet to succeed, offering answers for what causes autism and treatments with allegedly dramatic results.

All three men plan to talk about the link they see between autism and vaccines; the Geiers will also discuss hormones and autism.

Mark Geier and Eisenstein are physicians, but neither is board-certified in any specialty relevant to autism and the use of Lupron, including pediatrics, endocrinology, psychiatry and neurology. Geier is a geneticist; his son has a bachelor's degree in biology. Eisenstein, a family doctor who preaches a message of home birth, vitamins and vaccine safety, said he treated "virtually no" autistic children in the past.

Eisenstein said he met the Geiers last summer at the Health Freedom Expo in Chicago and that he began offering Lupron in his office because parents of autistic children were pleading with him for help.

Since his Autism Recovery Clinic opened in late January, Eisenstein said he has seen about 75 autistic children, with about 35 undergoing extensive lab testing. On May 11 he told the Tribune that four or five children were on Lupron, and 15 to 20 could start treatment within weeks.

The Geiers say they have probably treated 300 autistic children and a handful of adults with Lupron, and an additional 200 people are being tested.

In February, when the Geiers visited his office, Eisenstein was effusively enthusiastic about Lupron. "It is awesome, just awesome," he told doctors in his practice after the Geiers spoke about their therapy.

But three days after his May interview with the Tribune, Eisenstein called to say he was having second thoughts about the autism clinic, citing issues with insurance companies and less-than-spectacular results.

"It's highly unlikely that we're going to be part of the autism program much longer," Eisenstein said. "I'm not pleased enough with it. It's not where I want to put my energy."


Several parents whose children are on Lupron told the Tribune that it works, saying their children are better-behaved and show cognitive improvement. "It was an obvious, undeniable result," said Julie Duffield of Carpentersville, whose 11-year-old son has autism. "I wish you could see what he was like before."

Experts said such beliefs are common among parents who try alternative autism treatments. It's easy, they say, to attribute normal developmental leaps to whatever treatment is being tried at the time.

"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."

Doctor: 'I am going to treat as many as I can'Mainstream science has yet to explain or solve autism, a developmental disorder that impairs the ability to communicate and interact. About 1 in 150 children in the U.S. are diagnosed with an autism spectrum disorder, from mild to severe. There is no cure, but experts often recommend sessions with therapists who work on communication and social interaction.

In the absence of definitive answers, unproven treatments have proliferated, including diets that eliminate wheat and dairy, chelation drugs that leach metals out of the body, and treatment in hyperbaric oxygen chambers similar to those used to treat scuba divers with "the bends."

A vocal minority of people believe vaccines are to blame for autism, though numerous studies have failed to support any of those theories. One of the most persistent puts the blame on thimerosal, a mercury-based preservative once found in some childhood vaccines but now included only in some flu shots or in trace amounts.

The Lupron protocol adds a new twist to the thimerosal theory. According to the Geiers, who filed for at least one patent on their therapy, many autistic children have not only toxic mercury in their system, but also high testosterone that causes early, or "precocious," puberty.

The U.S. Food and Drug Administration has approved Lupron to treat precocious puberty, an extremely rare disorder that involves finding signs of puberty in very young girls and boys.

Lupron is also used to treat prostate cancer in men, to treat endometriosis in women, and to chemically castrate sex offenders.

To treat an autistic child, the Geiers order $12,000 in lab tests, more than 50 in all. Some measure hormone levels. If at least one testosterone-related level falls outside the lab's reference range, the Geiers consider beginning injections of Lupron. The daily dose is 10 times the amount American doctors use to treat precocious puberty.

By lowering testosterone, the Geiers said, the drug eliminates unwanted testosterone-related behaviors, such as aggression and masturbation. They recommend starting kids on Lupron as young as possible and say some may need the drug through the age of puberty and into adulthood.

The cost of the Lupron therapy is $5,000 to $6,000 a month, which health plans cover, Mark Geier said. However, two families told the Tribune that they had trouble getting insurance to pay for the treatment.

Mary Dean of Rockford, whose 19-year-old daughter is on Lupron, said her insurance company paid for a year of the therapy, then stopped. Eventually the family filed for disability Medicare insurance, which is picking up costs again, Dean said.


The Geiers' first Lupron patient, a Virginia boy with severe autism who is now 13, started the treatment about four years ago. Since then, the Geiers have opened eight clinics in six states, including one in Springfield and their arrangement with Eisenstein, which he described as a "franchise" of sorts.

"We plan to open everywhere," Mark Geier said in February at Eisenstein's office. "I am going to treat as many as I can."

Some of the Geiers' clinics are headed by doctors; a psychiatrist runs the Springfield clinic. But that is not always the case. The clinic in Indianapolis is run by an X-ray technologist who has an autistic child.

In Washington state, the head is a health advocate and documentary filmmaker.

Geiers stand firm despite criticismSpecialists in autism, hormones and pharmacology who are familiar with the Geiers' protocol said it cannot work as they suggest.

"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!"

To support their theory that a link exists between testosterone, mercury and autism, the Geiers often cite their own paper published in the journal Hormone Research. Their report describes symptoms and lab results for 16 autistic children ages 3 to 10 and finds nearly all have high testosterone.

Experts who read the paper said it is deeply flawed and its conclusions are baseless.

The blood tests the Geiers use as proof of excessive testosterone don't show that at all, and other data they cite mean nothing, said Paul Kaplowitz, chief of endocrinology at Children's National Medical Center in Washington, D.C., and an expert on precocious puberty. They also leave out test results that could help show whether the children are in early puberty, he added.

Looking at the tests, Kaplowitz said he asks himself: "Is Dr. Geier just misinformed and he hasn't studied endocrinology, or is he trying to mislead?"

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.

The Geiers also say mainstream medicine condemns them because of their vocal stance that pediatricians, health officials and drug companies are covering up the link between vaccines and autism. "Nobody likes a whistle-blower," Mark Geier said in an interview.

The Geiers challenge critics not to dismiss their regimen without trying it. "Now that we have done hundreds and hundreds of kids, I can say ... the kids are much, much better," Mark Geier said.

In their presentations, the Geiers focus on issues most likely to disturb parents, such as aggressive behavior and excessive masturbation.

"With masturbating there is a degree of normal, and then there is autism. Parents will say: 'He will hump pillows, he will hump your leg,' " David Geier told doctors at Eisenstein's office. He made similar statements on the same visit to about 60 parents of autistic children.

In an autistic teenager, high testosterone will lead to dangerous aggression, Mark Geier said, mentioning an autistic Ohio teen accused of killing his mother. "They are incredibly strong. They can hurt you," he said. "You have to respect that these kids are on massive testosterone."

Autistic children with high testosterone are heading down an ominous path, the Geiers said, and likely will end up hooked on psychiatric drugs, institutionalized or jailed.

In an interview, Eisenstein described going to the home of a young child to administer a Lupron shot that is injected into the buttocks with a long needle. "His dad is a big guy like myself, [and] it took both of us to hold him down to give him the first injection," he said. "It reminded me of ... a really wild dog or a cat."

Critics say it is wrong to assume that a child with autism is destined for a future of violence and drastic interventions, and that treating a young child with Lupron for that reason would be a mistake.

Boy's father asks: 'Will it affect his masculinity?'Recently at the Rolling Meadows clinic, Curt Linderman of Galesburg, Ill., said he was torn about giving Lupron to his 7-year-old son.

The boy was on the no-dairy, no-wheat diet and was doing pretty well, attending school in a regular 1st-grade classroom with the help of a special aide. He had some issues with socialization but wasn't aggressive.

If blood tests showed the boy had high testosterone, the family planned to consider Lupron. Still, Linderman worried about the long-term implications of suppressing his son's hormones.

"Will it affect his masculinity?" he said quietly. "I want him to be normal. I want him to have what every other child will have -- a family, kids, a marriage."

Pediatric endocrinologists said Linderman is right to be concerned. While Lupron might not have a significant impact on very young children -- beyond the discomfort of daily injections -- they said continuing treatment into the teen years is another matter. Lupron would put puberty on hold for those children.

A teenage boy "becomes a kid again," said Dr. Alan Rogol, a pediatric endocrinologist at Riley Hospital for Children in Indianapolis. "He stops making testosterone. They don't grow as well. It is not good for their bones. They would come to a dead stop."

Said Kaplowitz: "You can lower sex drive, yes, but are you going to do that for every autistic [teenage] boy, do a medical castration? ... For a year? For their lives?"

Neither Eisenstein nor the Geiers dispute that what they are doing amounts to chemical castration.

Speaking about one teen he put on the drug, Mark Geier said: "I wasn't worried about whether he would have children when he is 25 years old. If you want to call it a nasty name, call it chemical castration. If you want to call it something nice, say you are lowering testosterone."
Emphasis all mine.

The first emphasized part: I love how one of the doctors doing this therapy suddenly had a change of heart when the article was about to come out in a major newspaper.

Second: It boggles my mind that insurance is covering this, especially the part about medicare covering it.

third: That part made me laugh a bit; at least their stupidity come out quite blatantly.

fourth: :x :shock:
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Re: Parents using Lupron/chemical castration on autistic kids

Post by Mayabird »

It's not a theory, it's a guess. It's not even a hypothesis. [/Teodor]

Why do all these autism "cures" sound like someone making random shit up? Is it because they're able to get away with it because these parents are so desperate to have a "normal" child that they'll throw tens of thousands of dollars at every snake oil dealer that comes around, even when they could spend less money on effective help so the kids can actually cope with society?
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Re: Parents using Lupron/chemical castration on autistic kids

Post by The Grim Squeaker »

Mayabird wrote:It's not a theory, it's a guess. It's not even a hypothesis. [/Teodor]

Why do all these autism "cures" sound like someone making random shit up? Is it because they're able to get away with it because these parents are so desperate to have a "normal" child that they'll throw tens of thousands of dollars at every snake oil dealer that comes around,
Yes. Duh :P.
even when they could spend less money on effective help so the kids can actually cope with society?
'Severely affected kids won't be helped by aid, when you need someone to shave you then lessons about "When people's lips move up then they're smiling=happy" won't be of any use. (Though it would be to a high functioning autist, obviously).

Yeah, it's a bunch of crok, and desperate people take any exit they might see.
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Re: Parents using Lupron/chemical castration on autistic kids

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Cairber wrote:How can this be considered ethical?
I don't think it is ethical - that's way many people in the article, outside of the promoters of this "therapy", are questioning it.
How in the world does it get covered by insurance?
Remember, what insurance does and doesn't cover varies widely. Also, clearly it doesn't always, note the family that got their kid onto disability when their insurance cut off treatment.

Because it does have legitimate uses Lupron could slip by the usual gatekeepers on medical coverage. Precocious puberty does hit kids as young as 5 or 6, teenagers do have reproductive issues sometimes, and so forth. If a doctor uses the diagnosis "autism" when prescribing it, it might well get kicked back as denied. If the doctor uses "precocious puberty" it will probably be accepted. Remember, insurance companies don't actually see the patient, they're relying on honest reporting by medical providers.
Mayabird wrote: Why do all these autism "cures" sound like someone making random shit up?
Because that's what it is.
Is it because they're able to get away with it because these parents are so desperate to have a "normal" child that they'll throw tens of thousands of dollars at every snake oil dealer that comes around, even when they could spend less money on effective help so the kids can actually cope with society?
Exactly. Many of these parents want "perfect" children and can't cope with the fact that their kids aren't. Therefore, somebody - or at least something - must be at fault. There must be something "wrong" that's fixable because, well, our science/medicine is that good and if we don't have something it's a conspiracy or something.

Rather than accept that the kid isn't perfect and concentrate on maximizing the kid's coping abilities and chances of happiness they'll subject their offspring to all sorts of unproven bullshit, ranging from harmless to annoying to actually dangerous or life-threatening. They'll ignore or throw out the good they have in an all-consuming chase of the Perfect (Cured) Child.
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Re: Parents using Lupron/chemical castration on autistic kids

Post by CaptainChewbacca »

Forcibly sterilizing 'mental defectives'? I thought we got rid of eugenics.
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Re: Parents using Lupron/chemical castration on autistic kids

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CaptainChewbacca wrote:Forcibly sterilizing 'mental defectives'? I thought we got rid of eugenics.
I guess you didn’t read anything past the article title, good job. This isn't fucking about eugenics at all and that drug doesn't work for eugenics either.
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Re: Parents using Lupron/chemical castration on autistic kids

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Never mind that calling it "forced" when the parents seek the treatment for their children is... curious terminology, unless you also think that any other treatment sought by parents for their children is "forced".
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Re: Parents using Lupron/chemical castration on autistic kids

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The five-day conference, featuring a keynote speech by actress-turned-activist Jenny McCarthy, steps in where modern medicine has yet to succeed, offering answers for what causes autism and treatments with allegedly dramatic results.
Christ, Jenny McCarthy again.
Speaking about one teen he put on the drug, Mark Geier said: "I wasn't worried about whether he would have children when he is 25 years old. If you want to call it a nasty name, call it chemical castration. If you want to call it something nice, say you are lowering testosterone."
This sounds like a recipe for some major lawsuits in the next ten years.
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Re: Parents using Lupron/chemical castration on autistic kids

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How in the world does it get covered by insurance?
Screech loudly and in a high pitched tone. Maintain for multiple months. Recruit a movement with many other parents, snake oil salesmen, frauds, and conmen to duplicate your nonsensical pie-hole white noise.

Victory.

ABA/IBI in the 'Treat Autistics and Gays with electroshock and violence' school is covered. And I remind you, this movement is so well entrenched they can intimidate researchers into not classifying restraints heavy enough to cause death as a 'heavy aversive' in studies of it's effectiveness.
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Re: Parents using Lupron/chemical castration on autistic kids

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erik_t wrote:Never mind that calling it "forced" when the parents seek the treatment for their children is... curious terminology, unless you also think that any other treatment sought by parents for their children is "forced".
Parents are supposed to act in the best interests of their minor children. Is this treatment in the best interests of the children being treated? How many adults would consent to Lupron treatment as a means of controlling their behavior as opposed to treating a medical disorder? This, to me, seems to be more about the convenience and the comfort of the parents than actually helping the children.
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Re: Parents using Lupron/chemical castration on autistic kids

Post by Uraniun235 »

Cairber wrote:How can this be considered ethical? How in the world does it get covered by insurance?
Maybe there's some insurance executive who has an autistic kid and buys into this shit.
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Re: Parents using Lupron/chemical castration on autistic kids

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Is it because they're able to get away with it because these parents are so desperate to have a "normal" child that they'll throw tens of thousands of dollars at every snake oil dealer that comes around, even when they could spend less money on effective help so the kids can actually cope with society?
I think I may have to challenge the underlying assumption here. That these parents WANT normal children.

This is a recent thought, so permit me being a bit stream of consciousness and so forth as I build the logical argument. The 'cures' that last(Unlike the FDA warning-violating 'Oxygen + Hypobaric chamber' one) are the ones which literally terrify or medicate the children into a state where they are very quiet and very obedient. These are not 'normal' children. Normal children are loud, mischevious, and run around alot. They ask silly questions and they are often disobedient. A good parent deals with this and molds them into something resembling a decent human being by the end of their puberty.
Speaking about one teen he put on the drug, Mark Geier said: "I wasn't worried about whether he would have children when he is 25 years old.
I find this VERY telling. Because it lines up with the fact that.. Autistic adults are basically see-no-evil, hear-no-evil subjects. How many discussions on the subject talk about even a college-aged Autistic, as opposed to little rugrats? The thoughts are not on them 'coping', but in the parents and the difficulty involved. This is backed up by the 'cures' that last often producing a total meltdown in adulthood.

No surprise, though. 'I can't be bothered to RAISE my kids! YOU! CHANGE THE WORLD INSTEAD!'.
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Re: Parents using Lupron/chemical castration on autistic kids

Post by CaptainChewbacca »

There are ways to cope with/raise autistic children WITHOUT destroying their future happiness. Parents need to realize their child isn't broken, it just needs loved.
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