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75 Year Olds with Cancer Get Treatment. Autistic Toddlers Doomed To Diagnosis For Life?

Apron By Kim Stagliano

Yesterday, I saw a Tweet that talked about a new treatment for the elderly with leukemia (article below the jump) and thought, "Wow, there's a breakthrough to add months to the life of an elderly person and yet there are folks saying our children should not be treated." Thus is born a post on Age of Autism, friends.

Help me understand why it's good to prolong the life of a 75 year old with cancer by several months, but it's not good to change the entire life path of a three year old who is diagnosed with autism?  Aren't both desireable?

There appears to be a concerted effort to make sure autism is seen as untreatable, and to paint those of us who dare treat our kids as fools.  Look at the Chicago Tribune article that featured a supplement so obscure (sorry Dr. Haley) that if you asked 100 parents in the biomed autism world, "What is OSR#1"  99 would give you a blank stare and the hundredth would answer, "The follow up song to Mambo #5? (A little bit of Monica in my life..)".  

I'd like to ask Ari Ne'eman myself.

Sir, I have three beautiful girls who can not cross the street safely. Do you stand behind my desire, as their mother, to find effective and safe treatments outside of psychiatric medications that can be transformed into chemical straight jackets in the adult autism population?  Do you respect my needs for my autistic children or do you only advocate for the highest functioning individuals who have stated that they themselves do not want a cure or treatment?  I respect the desire to self-advocate for my adult friends with Asperger's. I'm in favor of employer education, post secondary school support, better awarenss and training for law enforcement and a lifetime of support as needed for adults on the spectrum. I pray my girls may one day be able to self-advocate. Until then, I am their voice.

I can't imagine a world where people with terminal illnesses advocated only for employment rights, pain management and hospice, and not treatment or cure. Or diabetics advocating for better glucose meters, sugar counts on menus and improved limbs for amputees, but not for research into cause or cure. Why should autism be any different, when the diagnosis can be life altering and even life threatening?

Do you respect my wishes for my kids?

Here's the article on the drug for the elderly. I love my Dad. He's 87 years old. I'd want an extra 7 months with him, I sure would. Someday, I may be 87 years old and need to slive a few more months to care for my adult children.

Results of a multicenter phase two clinical trial suggest that the drug decitabine may be useful in treating elderly patients with acute myeloid leukemia (AML), a disease that usually proves fatal within two months of detection.

Decitabine, or 5-aza-2'-deoxycytidine, is a cytosine analog. It is a hypomethylating agent that reduces labeling of DNA with methyl groups by inhibiting DNA methyltransferase. Excess methyl labeling of DNA that silences tumor suppressing genes has been linked to cancer development.

Investigators at the Washington University School of Medicine (St. Louis, MO, USA) treated fifty-five patients (mean age, 74 years) with decitabine intravenously for five consecutive days of a four-week cycle. Response to the drug was assessed by weekly CBC (complete blood count) and bone marrow biopsy after cycle two and after each subsequent cycle. Patients continued to receive decitabine until disease progression or an unacceptable adverse event occurred.

Results published in the December 21, 2009, online edition of the Journal of Clinical Oncology revealed that in 24% of the patients, blood counts and bone marrow returned to normal. An average of 4.5 cycles of decitabine treatment was required to attain this complete response. In those with a complete response, average survival time was 14 months. For all study participants, average survival time was 7.7 months.

Read the full article at BioTech Daily

Kim Stagliano is Managing Editor of Age of Autism. Her memoir, All I Can Handle. I'm No Mother Teresa. debuts this Fall from Skyhorse Publishing in New York.

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OK crew - we've let this thread veer off the course - that autism doesn't get the same respect for treatment as other diseases - for long enough. It's not a vaccines thread or an OSR thread.

Todd, I'll invite you again to contact CTI Science for further info - and I do question your interest in this story, considering the number of comments you've made on it as a newcomer to AoA. But thanks for politely engaging our regular readers.

Kim

@Garbo

"There is no double standard."

To boil it down, the arguments, as I see them, go something like this: "There's no evidence that vaccines are safe! Do more studies or stop giving vaccines!...Wow, OSR is great! It doesn't have any studies to show it is either safe or effective, but that's just fine, because it's sold by Boyd Haley, not some money-grubbing evil pharmaceutical company."

Is the double-standard clear, now?

@A Friend

"I don't necessarily disagree with this... Having said that, you strike me as a person who believes strongly in the vaccination policies of today."

In general, I think that the current vaccination policies are reasonably sound. There are still risks involved, particularly for those with allergies. The overall risk-benefit ratio is in favor of vaccination (i.e., the risks of injury from the disease prevented are much higher than the risks of injury from the vaccine, the public health impact argues in favor of mass vaccination, etc.). Individuals should have the right to refuse vaccination, I think, to a degree, but I feel that such refusal should be based on sound medical and logical reasoning.

"At least acknowledge that vaccinations are experimental."

All drugs, ultimately, are experimental, even after market, simply because there is always the potential for new and unforeseen effects to turn up. There are still aspects that we may not know or understand yet. That said, though, based on the knowledge we have, vaccines are one of the safest and most effective medical products we have (with exceptions, of course, like the first rotavirus vaccine, which was unsafe, BCG, which is safe but not particularly effective, etc.).

"Sure there may be some 'safety studies' out there.... but do these studies take into consideration ALL the different vaccines given at once?"

I don't recall off-hand what studies have been done on older vaccines, but all new vaccines are strongly recommended by FDA and ICH to include in the clinical trial design the effects (both on efficacy and safety) of use of the new vaccine if given at the same time as other vaccines that are likely to be given at or around the same time. While not rising to the level of law, the manufacturer generally needs to provide a really good reason why a guideline is not being followed.

"Do they have studies between vaccinated and unvaccinated children, etc.."

A prospective, randomized controlled trial like this would violate ethics guidelines. Retrospective studies, however, could be done. New vaccines generally have trial arms that compare use of the new vaccine vs. either a placebo, no treatment or active control (e.g., NV + approved products vs. approved vaccines only, NV vs. similar approved vaccine). Newer vaccines will generally include information about these studies in their labeling.

"If you are going to be in the 'evidence of safety' group, it needs to work on the vaccine side as well...."

Agreed. Which is largely why I'm calling out OSR#1.

There is no double standard. There are only people who are trying to help autistic children and their families, and people who aren't, and a great many parents who know the difference. If you're so concerned about product safety and liability laws, if you think you are on the side of helping autistic children, then maybe you should start investigating vaccines and antipsychotics. The first step in stemming the epidemic and ensuring the safety of children is to do away with the dangerous products that are causing the medical problems in the first place. Then there will be less austistic children with gastro/seizure/autoimmune/mitochondrial issues, so less people will need the supplements you so readily question. It will mean less children will be prescribed dangerous antipsychotics with known side effects like obesity and boys growing breasts and lactating. 1 in 110 children. 1 in 58 boys. Enough is enough, don't you think? If you're not part of the solution, you're part of the problem. I fail to see how mau-mau-ing Dr. Haley or his product is part of the solution. Go do something good for autistic children, something meaningful, do something to show that you actually understand the medical issues of autism and how the crisis has been epically mismanaged, and then your "noble" critique of OSR might be taken more seriously.


"Shouldn't the onus be on the maker to provide evidence that the product is safe before they are allowed to sell it?

Again, why the double-standard?"

I don't necessarily disagree with this... Having said that, you strike me as a person who believes strongly in the vaccination policies of today. At least acknowledge that vaccinations are experimental. Sure there may be some 'safety studies' out there.... but do these studies take into consideration ALL the different vaccines given at once? Do they have studies between vaccinated and unvaccinated children, etc... If you are going to be in the 'evidence of safety' group, it needs to work on the vaccine side as well....

My response to bensmyson appears not to have made it through, so here it is again:

@bensmyson

"First of all based on Merck's reckless track record I doubt Id trust anything they put out with or without a clinical trial.

Secondly, OSR is not required to enter the public school system or to enter into this country.

And third, OSR is not a FDA approved pharmaceutical drug, it is not marketed as a drug. It is a supplemental aid to enhance the child's diet."

Fine. Instead of Merck, let's say it was AstraZeneca. Or Pfizer. Or Millennium Pharmaceuticals. Or any other pharmaceutical company.

Second, you ignored my comparison to a new cancer drug.

Third, OSR#1 hasn't even been approved as a deitary supplement. Haley hasn't provided evidence to the FDA that a) it's safe when used as a dietary supplement or b) that it even meets the definition of a dietary supplement or dietary ingredient. It just seems to me that he is trying to get around regulations by using DSHEA. All he has to do is avoid claiming any specific health benefits in the labeling or marketing materials, assert that it's a dietary supplement and include the boilerplate warning that the product is not intended to treat, diagnose, mitigate or cure any disease or condition and, voila, FDA can't do a thing about it until they build a legal case against it. It's exactly the way drugs were regulated back in the first few decades of the 20th century. Back then, a manufacturer would produce and sell a product without any approval. Then, FDA had to build a legal case to bring any action. If the product was particularly bad or dangerous, that could be very bad, indeed, for the consumers, because the maker could keep on selling the product until FDA proved, in court, that it was not safe.

Shouldn't the onus be on the maker to provide evidence that the product is safe before they are allowed to sell it?

Again, why the double-standard?

@ben(notmyson)

from the CTI website:

OSR#1® is a toxicity free, lipid soluble antioxidant dietary supplement that helps maintain a healthy glutathione level. OSR#1® does so by scavenging ROS (free radicals) thereby salvaging the naturally produced glutathione. Both OSR#1® and glutathione scavenge free radicals, allowing the body to maintain its own natural detoxifying capacity.

Free radicals are unstable oxygen-containing molecules that negatively interact with other molecules in the body, in a process called oxidation. High levels of free radicals and oxidation can lead to oxidative stress. The body naturally fights oxidation by producing glutathione. However, when sufficiently stressed, the body's glutathione may not be able to keep up with the production of free radicals. OSR#1® assists glutathione in its job of scavenging free radicals and may help the body maintain a healthy glutathione level.

Glutathione is the body's natural defense to free radicals. However, once glutathione stabilizes a free radical, it becomes oxidized and is usually excreted from the body. This lowers the body's level of glutathione, and high levels of oxidative stress can prevent the body from recovering its normal functioning.

OSR#1®, unlike other antioxidants, is lipid or fat-soluble. This allows OSR#1® to penetrate cell walls to scavenge free radicals within cells. Water-soluble antioxidants cannot access cells in this way and are limited in their capacity to scavenge free radicals.

The ORAC (Oxygen Radical Absorbance Capacity) score, developed by Brunswick Laboratories, which measures the effectiveness of antioxidants. For OSR#1® is 192,400 µmoleTE per 100 grams, one of the highest recorded for a lipid soluble antioxidant. The HORAC (Hydroxyl Radical Absorbance Capacity) for OSR#1® is even higher at 299,000 µmoleTE per 100 grams.

Just curious what happened to my comment responding to pchaiken?

@Craig

"Todd, my point is that until you can show us data, not anecdote, that says that OSR is less safe than Pharmaceutical garbage, you won't convince anyone."

So, you're suggesting that just because pharmaceutical products are "garbage", we don't need to do studies on OSR#1 before it's marketed?

"There are thousands of drugs out there that have gone through the rigorous testing process and were STILL shit."

Agreed, there are drugs out there that have gone through testing and are still crap. How does that excuse OSR#1? With testing, we have a chance of detecting potential risks. Without testing, we don't have anything.

"I respect that you want more safety studies done on it"

I want safety studies done on it, period. Your use of "more" suggests that there have been studies done, yet where are they? Please point me to them. That's what I've been asking since the beginning.

"But until you and those like you who are criticizing these parents for trying to help their kids can show us what you are doing to help our kids and that it is more effective, then I hate to tell ya, but you really don't have a leg to stand on."

My criticism isn't really with the parents trying to help their kids. I know they are desperate and want something, anything, that will help. It's not their efforts that I've got a problem with. It's the double-standard. They should be bringing the same demands for evidence to bear on people like Boyd Haley and CTI as they do on pharma companies. And my real beef isn't even with the parents. As I said, I understand the desire and frustration, so they can't really bear 100% of the blame. People like Mr. Haley, who try to do an end-run around the laws, need to be held accountable just as much as pharma companies.

Vioxx was a debacle and Merck suffered for it. Fen phen was terrible, as well, and it was a Wyeth employee who first expressed concerns about it. Both products were pulled and the companies punished.

If OSR#1 turns out to have risks of serious adverse events, shouldn't they be caught before it is marketed, rather than afterward? Don't autistic children and their families deserve that?

@bensmyson first of all ben is my real name so please take no offense, I am not trying to mock your son.

Second, if you say OSR is supposed to supplement a child's diet, what nutrients does OSR contain that a child's diet might be lacking?

Todd, my point is that until you can show us data, not anecdote, that says that OSR is less safe than Pharmaceutical garbage, you won't convince anyone. There are thousands of drugs out there that have gone through the rigorous testing process and were STILL shit. Is OSR any less safe than Thimerosal? Vioxx? Phen Phen? And the list goes on....

And I'm sure if I asked for a show of hands of the people here on how many of them can name 10 Pharma products off the top of their head that were tested and later recalled because the Pharma companies lied about the safety of the product. You know, that whole informed consent thing? You criticize Dr. Haley for not giving informed consent (which he has), but you don't criticize Pharma for their numerous lies.

I respect that you want more safety studies done on it; I agree. But until you and those like you who are criticizing these parents for trying to help their kids can show us what you are doing to help our kids and that it is more effective, then I hate to tell ya, but you really don't have a leg to stand on.

Todd said: "if OSR#1 were produced by, say, Merck instead of Boyd Haley, would you just accept it as safe and effective? Or would you demand that they put it through clinical trials?"

First of all based on Merck's reckless track record I doubt Id trust anything they put out with or without a clinical trial.

Secondly, OSR is not required to enter the public school system or to enter into this country.

And third, OSR is not a FDA approved pharmaceutical drug, it is not marketed as a drug. It is a supplemental aid to enhance the child's diet.

I have a distant relative (a doctor) whose son has a mysterious brain disorder that has caused a partial paralysis that has escalated to the extremities (right after a series of vaccines). The parents have taken this child everywhere over the past 6-8 months, to every major hospital seeking a cause and to engage in various treatments. The latest treatment that they are pursuing is chemo, the experts wanted to "try" chemo to see how that works. This child is not even three years old yet.

Now would I do that to attempt to save my son? Who knows but one thing I won't do is question their judgment.

I suggest that parents have the right to make their own decisions regarding what is best for their child and I wholeheartedly respect that right. Whether it is giving them Tylenol or a vaccine, it's their decision. Likewise I expect others to recognize my parental rights.

I've heard of a clinical, non-pharmaceutical therapy for moderate to severe autistics. It involves the mother and child spending time with each other 24/7. The aim is to accustom the child to look at the mother's face and eyes. It appears that the visual interaction is key to normalizing emotive states. I heard of the therapy on public radio.

@concerned mom

First off, acetaminophen overdose is a real issue due to the number of drugs that contain it and are regularly taken concomitantly. IIRC, FDA has issued new guidelines to manufacturers that they need to include in their product labeling warnings about dose levels. The issue is not that acetaminophen is horrendous when used below a certain amount, but that the combination of many different drugs containing it build the level up past the therapeutic level and into the toxic range. Personally, I think that products that use acetaminophen should find some alternative, and that any new product, whether it contains acetaminophen or some other pain reliever, should take into account other drugs that are likely to be used along with it. The dose and labeling should reflect that.

As to Boyd Haley, we have drug regulations for a reason, and, whether you believe it or not, it isn't to make money for the drug companies. Take a look at the history of the FDA, and you'll find that the regulations came about as a means to protect the populace of the U.S. Every major revision of the laws have followed some activity that put lots of people's health at risk. Right now, Mr. Haley appears to be taking advantage of loopholes created by DSHEA to avoid doing clinical trials.

Although I'm not connected to any pharmaceutical company, I have studied the laws governing drugs and medical devices. My motivation was to hold companies accountable when they produce crap products and to ensure that the products that do make it to market are safe (as compared to the risks). There is no black-and-white, easy line to make that determination, because everything carries risks. The challenge is to balance those risks against the benefits derived. In the case of OSR#1, we can't do that, because there's not enough data to determine the risks or benefits.

@bensmyson

"Is OSR required prior to admission in the public school system? Is it required to enter into this Country? Are billions being spent every year by the government to convince the public that OSR is safe and effective? Anyone hurt from it? Nope? Then what's the big deal?"

Is a new cancer drug that hasn't gone through any testing required prior to admission in the public school system? Is it required to enter into this country? Are billions being spent every year by the government to convince the public that the new cancer drug is safe and effective? Anyone hurt from it? Nope? Then what's the big deal? It doesn't need testing, right?

Ask yourself this: if OSR#1 were produced by, say, Merck instead of Boyd Haley, would you just accept it as safe and effective? Or would you demand that they put it through clinical trials?

@rileysmom

Quick note on Clinical Trials vs. parents experimenting on their kids. First, clinical trials only happen after animal testing in at least two animals, one of them non-rodent. Then, the clinical trial protocol goes through ethics review, to ensure that proper safeguards are in place for study participants, to ensure their safety and rights are protected. See the Nuremburg Code and the Declaration of Helsinki, as well as the info from the Office of Human Research Protections. Only if the study is deemed ethically sound does it then go forward in humans, usually starting with healthy volunteers, to determine the safety profile in humans. From there it expands to gathering more safety data and efficacy data in larger and larger study populations. Once all that is done, and we have a good understanding of the risk-benefit ratio of the product, does the product get approved.

Contrast that to parents experimenting on their kids. You trust the maker (CTI/Boyd Haley), yet his product has not gone through safety studies to see what adverse effects it might have. You're not getting full information on it, so neither you nor your child are really informed, voluntary participants. Mr. Haley is operating in a grossly unethical manner. He should be getting funding for clinical trials. He should be putting the study protocol through an IRB review. What I'm asking is why he's not doing that? It is incredibly hypocritical to demand clinical trials showing that, say, vaccines are 100% without risk, but then not demand the same level of evidence for something like OSR#1.

I realize and understand the desire to do something to help your child. I, myself, would really love it if it came out that OSR#1 really did work with minimal side effects. It would be a huge leap forward! But with any endeavor in finding new medical treatments, the hard work needs to be done, and the promoters need to be held accountable.

Unlike what Craig suggests I'm claiming, I really don't know whether OSR#1 is safe or unsafe. Why? Because there are no studies to look at! Without even a modicum of evidence, it's not a good idea to be using it in humans.

Vaccines are not perfect. They can definitely stand to be improved, to be made safer. The difference between them and OSR#1, though, is that we actually have evidence showing what kinds of things happen, both good and bad, with vaccines. It may not be a complete knowledge, but we at least know a pretty good deal about them. We don't have that with OSR#1. All we have are some claims without any supporting studies on a web site designed to sell the product.

pcchalken cancer is what I call a "casserole disease" the kind of socially approved disease that gives you community support and casseroles. Autism definitely not a casserole disease. My older son also had another definite NOT casserole disease. Drug addiction which i think was a prelude to autism. he didn't methylate had anxiety he was just trying to self medicate. luckily born in 1988.
Luckily we have each other. Lets start are own GFCF casserole brigade. And sorround the new mom with weeks a freshly prepared GFCF meals while she is trying to figure this out. just a thought.
Unfortunately there are going to be more of us then less. many are among of us just in denial the new normal.

There Todd,
500 deaths from Tylenol in a year! If your so concerned about toxic products thats a great one for you to go after. Oh wait. Thats a big pharma company. You rather go after Dr. Haley because you can push him around. There is a very special place in my heart for men like Dr. Haley who are willing to do the right thing and stare down evil when it is trying to destroy everything he has worked his whole life for. Its called integrity and its rarely seen today.

http://www.medicine.org/profiles/blogs/acetaminophen-overdoses

I knew he shouldn't have done that interview.
I worked in the ICU for many years nothing I mean nothing is worse then a tylenol overdose. I don't know how many young girls i saw who thought they would get some attention and make a suicide gesture and take what they thought was the most benign thing in their homes medicine cabinet "tylenol" only to end up dead yes dead or on the liver transplant list. Todd if your really concerned about anything look at what tylenol does every year.

I never heard one chicago tribune reporter or doc concerned about it. business as usual. teenager girls dead from tylenol overdose yawn... 1 out of seven boys autistic yawn... dr boyd haley develops OSR OMG he must be stopped what if all those autistic boys get better and become independent and get jobs and have families and pay taxes... omg it must be stopped......what if it just helps them be less anxious which is one of the known side effects of mercury. Todd is okay with you if my son is less anxious so he can actually talk to his peers and maybe have a girlfriend some day or is that not allowed?


First they won't let Dr Boyd Haley speak the truth so he decides since he can't stop the damage at least he can help heal it.
Now they won't even let him do that... i never have to go thru a MD to get a nutritional supplement EVER,,,, thanks Todd... really appreciate your help....your concern for my childs health is amazing actually i think its more of a CONTROL issue...I really am so frustrated obviously a personality issue with ND is CONTROL, CONTROL, CONTROL.... could you go control something that doesn't effect my family personally thanks...

My friend's wife is dying of cancer. It is devastatingly sad. They have a beautiful, healthy son. My friend's place of work has given him leave from many of his responsibilities. His co-workers and friends are providing him with food and support beyond imagination. Friends have held benefits for his family raising tens of thousands of dollars. OTs, PTs, Nurses, respite workers and more come to their house daily. Hospice has even supplied massage therapists for free -- for the wife and my friend.

I don't begrudge my friend any of these luxuries -- necessities at a time like this -- but I do wonder why parents of children with autism -- instead of being embraced and supported by the community with help in the form of babysitting, dinners, insurance funded in -home OTs and PTs, benefits and the like, are shunned from the community.

Why is there this marked difference in attitude between cancer and autism?

Ok Ben, I was just on a Autism board where mom's discuss what their doc's are recommending for their children. This mom stated that her Ped doesn't know how to "calm" her ASD child down because he is so hyper. The Peds suggestion...a nicotine patch. This is medical mainstream and this is not a clinical trial but yet this doctor is "testing" the THEORY that it may work. Just like our old Ped "tested" the THEORY that Prevnar 7 works well with MMR and Verivax on the same day. This WAS NOT a clinical trial. He was trying to find out which vaccines work in what combination. Guess which vaccines don't work in that combination?
Another mom on the same board took her son to a "big name" mainstream neuro doc. She said that she told the doctor that the school psychologist and his ABA instructor suspect seizures. She asked if they could run an EEG. The doctor told her it was a waste of time. but for any other child it would have been done.
We don't use OSR but I sure as hell will stand behind the parents that do. They have too try something because, much like me, the mainstream isn't beating down our doors looking to help.
Parents need to take the bull by the horns because our children with severe ASD are 3rd class citizens in the mainstream medical. They've created a monster (autism) and have washed their hands of it. Swept these children under the gurney.

Is OSR required prior to admission in the public school system? Is it required to enter into this Country? Are billions being spent every year by the government to convince the public that OSR is safe and effective? Anyone hurt from it? Nope? Then what's the big deal?

Craig, I think your point is reasonable, it is getting there that I take issue with. That we have not seen any OSR related injuries is a happy bit of chance that should not have been taken. That is my point and also Todd's.

At Rileysmom, clinical trials are done in phases to ensure the safety of people involved. If OSR was involved in a clinical trial, children with autism would be the last people to get the drug tested on, not the first. The first stage of clinical trials is dose testing after extensive research on animals.

ben,
I made no such admission. I am merely asking you for proof that it is unsafe. You know, like you and the rest of the Oraccolytes do when we say that Vaccines are unsafe? So, show me that proof, will ya?

Jen:
Your account sounds anecdotal. Anecdote does not equal data.

Todd:
If OSR is as unsafe as you and the Oraccolytes claim it is, then we would have heard about it by now. If OSR is so unsafe, then there would be a flood of reports to the FDA (who would gain jurisdiction if there are injuries involved). The rest of my comment is mockery of the tendency of those who claim to be "skeptics" saying that we all believe in some conspiracy or other because we have reason to think that vaccines caused injury to our children. What, you don't recognize your own rhetoric and tactics being used against you?

I have no opinion on OSR one way or the other; I do not give it to my child. I am merely holding you and the Oraccolytes to the same burden of proof that you hold us to when it comes to vaccines. You want to convince us that it is a bad and horrible supplement? Well, then show us how unsafe it is. Is it more dangerous than, say, thimerosal? Well, here's your chance to convince us.

"If the National Council on Disabilities intends on appointing a 21 college student with aspergers than they also need to appoint a parent of a sick and nonverbal child and not leave the silent majority of ASD kids without a voice- again."

Amen.

Ben, what do you think Clinical Trials are then? If no one else is going to do it then someone must. That and parents of children with autism and medical issues are forced to be pioneers whether we want to or not. Maybe if the medical mainstream would even acknowledge that our children have REAL issues on a cellular level, we wouldn't have people like you condemning us for trying anything we can so our children aren't in pain anymore. It's ignorant that it's ok for my child to live with pain everyday, death row inmates get better pain management then my son does.

@craig, thank you for admitting you people using OSR are experimenting with their children. Even if it is safe, surely this is not the best way to test it?

Kim, why don't you think behavioral therapy is considered treatment for Autism. It's been pretty conclusive that this helps.

just found Mass Gen study funded largely by Iaccoca Foundation; using BCG vaccine...

Just a reminder of Dan Olmsted's past articles, since the Mass Gen diabetes studies were brought up, that Richard Insel, MD (lucky brother of the NIH's coverup pro Tom Insel) is now the exec vp of the Juvenile Diabetes Research Foundation research department. It would appear from their website that they have some funding connection to work at Mass Gen, though whether this particular clinical study is part of that funding is unclear. This would be the same Richard Insel responsible for developing (and profiting from) the thimerosal-containing Hib vaccine that some have linked to... juvenile diabetes.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116914/

Funny how in mid career R. Insel switched from infectious disease to autoimmune disease. Ha.


"Perhaps further research will discover physical symptoms in the way that diabetes has been figured out to be autoimmune. That might be a potential avenue for investigation".

Oh my..... People have been discussing this for years... and you are now saying that it 'might be a potential avenue for investigation'... Are you kidding me?

@Craig

"Todd, I'm sure that if so many children are using it"

How many? Do you have some reliable numbers?

"we would have heard by now from someone, even one person, if there had been any reactions to it."

Not necessarily. Where would we hear it? On what sites?

"Since it isn't officially a drug, there are other avenues to look up to see if there have been any reactions. Consumer Advocacy groups, etc. would be the best place to look."

Okay, such as? Point me to the groups. Who is doing the reporting? Reports to VAERS under-represents potential vaccine injuries, and that's even with laws requiring manufacturers to report AEs they become aware of. There is no regulation requiring reporting of AEs from something marketed as a dietary supplement.

"Oh, I get it! You think that it's a grand conspiracy of the people using OSR."

No, I don't. Where did I suggest any such thing?

So, are you going to answer my questions, or continue evading? Why does CTI get a pass? Why do they not have to provide evidence of safety and efficacy?

Todd, I'm sure that if so many children are using it, we would have heard by now from someone, even one person, if there had been any reactions to it. Since it isn't officially a drug, there are other avenues to look up to see if there have been any reactions. Consumer Advocacy groups, etc. would be the best place to look.

Oh, I get it! You think that it's a grand conspiracy of the people using OSR. They are repressing reports of adverse reactions! Wow...that's a pretty big conspiracy! How many people would have to be involved?

Regarding autism research, there is also some of that going on at Mass General, as I understand. I'm not sure exactly which aspects they're looking at, but there is a full department dedicated to autism research and treatment, as well as support for the family. So, there is research being done. Is it slow? Yes. Is it frustratingly slow? Yes. Unfortunately, there is no fast-track, quick and easy answer.

@Kim

The primary reason that autism is categorized as a psychological illness, I think, is because it manifests primarily as behavioral symptoms. That's the current state of things. Perhaps further research will discover physical symptoms in the way that diabetes has been figured out to be autoimmune. That might be a potential avenue for investigation.

@Craig

"Todd, do you have any reports of adverse reactions to OSR? Any reports of anyone being injured, having a bad reaction to it, or being hospitalized? Any at all?"

Where would you propose that I find this? CTI certainly doesn't inform about it. There is no database that I can search. Show me where to look to find this info, and I'll look.

How many people are actually using it? Is it enough to properly determine the benefit-risk ratio? Is everyone using the exact same amount each time they use it? Is each family using the same amount as other families? What other factors might cause variability?

There, I've answered your question. Now how about mine? Where are the studies showing that it is safe? Where are the studies showing that it is effective? If those questions are demanded of pharmaceutical companies, why is it not demanded of CTI? Why does CTI get a free pass on this? Point me to the research.

Thank you Kim! I wish in our lifetimes for the day when large hospitals or clinics have entire areas and staff dedicated to the treatment of Autism Spectrum Disorders. If you have Cancer, eye problems, hearing issues, or diabetes (or even a broken elbow like I had this year) there are entire areas of hospitals set up just to treat you. Umass in Worcester has an entire department set up just for arm, hand or upper extremity injuries. We need something like this for our kids!

Anne:
So nice to see you in this discussion.
You are so right about the complacency that we have developed regarding our children's health. There is no longer any such thing as "neurotypical" and this generation of children is likely to have the dubious distinction of being the first in many decades to have shorter lifespans than their parents. Their immune systems are whacked out and they frequently chronically ill long before they receive the ultimate blow that sends them into regression.

Children with Autism (and ADHD and other Neurodevelopmental disorder diagnoses) are far more likely to have had multiple ear infections and upper respiratory infections, and to have had chronic GI problems than their undiagnosed peers. They are also more likely to have first-degree relatives diagnosed with autoimmune disease, and they are more likely to live in areas of the country where the rates of environmental toxins are the highest. (See Steven Higgs' most recent article about Educating Southwestern Indiana's Special Kids in The Bloomington Alternative.)

Todd, you are off base. There is plenty of information out there about the factors that contribute to the medical problems which eventually lead to the behavioral and cognitive diagnosis of "autism." The problem is, that as long as people keep thinking of the label as applying to a homogeneous population of "other people's children" there will be no research into the multitude of causes.

The silver lining in this, if there is one, is that the cancer research cited in this article may actually have some benefit towards children who are diagnosed with autism in the long run, since the same factors that ultimately result in cancer are at work in the medical issues from which our children suffer. They are medically ill and do not deserve to be ignored.
Marcella Piper-Terry, M.S.

Todd, do you have any reports of adverse reactions to OSR? Any reports of anyone being injured, having a bad reaction to it, or being hospitalized? Any at all?

I'm guessing by your refusal to answer that question that you do not. And, considering that there are so many children taking it and not a single report of a bad reaction is being heard of, then it is safe to say that the product is not as dangerous as you and the Oraccolytes are painting it out to be. Until you can come up with a single one of those reports, then I will continue to say that you and the Oraccolytes are making mountains out of molehills.

To Todd W. - Many of us would like to move to the planet on which you live- I mean the one where scientists are staying up late at night striving and yearning to figure out the cause of autism.
Here on planet Earth, we are getting really really frustrated at the course autism research takes. Dr. Mady Hornig gave mercury to baby mice and they showed autistic symptoms. Her work ignored. Dr. Boyd Haley showed that mercury is the only toxin we know of that can explain why more boys get autism as compared to girls. The powers that be wont discuss that minor point. I could go on and on but people at A OA have heard it all so often that they just feel more tired than they already feel after taking care of their autistic kids that medical science doesnt seem to care about. No Todd, on this planet things arent going so well for the science of autism and parents are left to try their best to alleviate their child's suffering in the best ways they can manage

I'm always amazed at the discussion of autism. There's never any sense of urgency, no need to end the suffering of countless children. So often TV coverage shows a verbal child happily interacting with adults. One percent of children now have a label of ASD and no one has any answers, but strangely we all just accept this situation. Rather than demand we honestly and thoroughly address what's happening to our kids, we're mostly calling for awareness. Awareness? What's wrong with our thinking?

What's the incentive to stop all this? We seem content to send a generation of highly medicated kids to school everyday. We're seemingly not alarmed over millions of kids with learning and behavior problems. There are of course benefits derived from all this. The pharmaceutical and medical industries are right there to reap the profits from so many disabled children. They would hardly be in a hurry to see this all end.

It is now so acceptable to have children with problems that we pretend that it's always been this way. I think we'll suddenly be waking up to reality however and it'll hit us like Pearl Harbor and 9-11. How many adults with disabilities can we support? What kind of workforce will we have in this country in five or ten years? What will our crime rate be? What will unemployment levels be like? How much will we have to pay to provide for young adults who need so much help? I work with so many kids, some labeled autistic, some not, and I have no idea what they'll be able to do as adults. I've never found any expert or official who could put my fears to rest. Maybe when the autism crisis becomes an economical crisis, maybe then we'll start to act.

Anne Dachel
Media

Actually, at the very top levels of most of the large disease charities, they don't actually want a cure. They are extremely dismissive of any treatments or preventions that don't involve a lifetime of pharmaceuticals. Where's the profit in that?

Todd- I'm glad there are trials at MGH for Type 1 diabetes.I'm sure there are trials nationwide as diabetes is deemed worthy of treatment and cure, unlike autism. I just heard from another autism Mom her child now also has Type 1 diabetes and that it is striking kids with autism at an increasing rate. Autoimmune disorder. Autism and Diabetes? If so, why do we continue to have medical experts lumping autism with mental illness - can you see our frustration? Thanks.

Because it takes actual effort and an open mind to find a cure. It takes wanting ti cure it instead of make money off it. I understand that things take time, I really do! But my grandpa had a saying. I can't fix what I don't know is broken. And as long as the cause or causes are unknown, and people are becoming too narrow minded to look at ALL possible causes to find an answer, we will never have one.

But if minds do begin to open, and open minded research can begin, perhaps we will be able to find the cause. Then we will be able to get to and treat the root of the problem instead of placating the symptoms.

It's all about nailing down the cause. If I know what's wrong, then I can go about the process of how to fix it. Right now doctors don't even know what exactly they are trying to fix!

It's a guessing game amongst the best of doctors, and short of throwing everything but the kitchen sink at you to try, all they can do for now is treat the symptoms. If we can put enough pressure on the medical community to consider ALL causes however, we'll finally be able to have at that root!

@Kim

The straw man you set up was that there was an either-or question between cancer and autism: treat cancer in elderly patients or treat autism. Sorry if I misread, but that's the impression I got.

As to safety studies for OTC drugs, you can usually find those by searching the FDA web site, pubmed or clinicaltrials.gov.

@Craig

You're asking me to prove that OSR doesn't work? Why? Did I say it doesn't work? No. But, while we're on the subject, any efficacy studies from CTI would be welcome, too. Let's put it this way, if a pharmaceutical company came out with a new drug that they claim could cure someone's cancer, we'd demand that they show evidence that it is safe and effective, right? You wouldn't just take their word for it and assume that it is safe or that it actually works, would you? So, why the double-standard for CTI? Shouldn't they also prove that their product is safe and effective?

And on a side note about type 1 diabetes, there are clinical trials ongoing at Mass General Hospital trying to find a potential cure. They're currently in Phase I and about to start Phase II.

Todd W.

I'd settle for a single report that shows that OSR is not safe. Something along the lines of a report of an adverse reaction, hospitalization, or a report of some type of injury as proof of your claims that it is unsafe.

Do you think that perhaps, while you are at it, you can come up with a study or two that shows it doesn't work? Kthx...

If you'd like, I can provide you with enough information on Pharmaceuticals that proves that the crap that the PharmaScum (tm) is shitting out is unsafe. It would keep you occupied for months, if not years.

There's talk of renaming alzheimers to type 3 diabetes. And we all know how alzheimers, autism and diabetes are closely related so I think you guys are not that far off.

I'll bet this new treatment for the elderly leukemia patients ensures that big pharma is making money off of them for an extra seven months as well...

"We need another term - like Type 1 and Type 2 diabetes, perhaps"

YES that is it! I keep saying that autism needs to be taken out of DSM and into the medical diagnoses. Including your type 1 and type 2 could maybe finally get rid of the degrading "low-functioning" vs "high-functioning".

Since we know that the kids who are historically low-functioning (lf) have more medical issues ie seizures, GI issues etc...in reality, lf really means more ill, more damaged systems.


Brilliant! Now let's make this happen...

To Todd-

" but figuring this crap out takes time "

Sounds like you have experience----lengthy research-hundreds of gene candidates-PHRMA salivating-

Why would you then want OSR to help? That would mess up all the plans.....

Kim - that's what I said - "though it should" (cancer/pharma).

Not to mention, once cancer is diagnosed it is tends to create alot of profit via the treatments.

It reminds me of diabetes - we have two Type-1 diabetics in my extended family. We do not think we will see a cure anytime soon simply because diabetes is way too profitable.

I thought your article was excellent. And no, it was not a "straw man" argument imho.

Katie, he's likely a terrific young man. And I envy his abilities - and want to help my daughters gain skills so that they too can advocate for themselves. My Gianna has a damn good shot at it - If she said to me in 5 years, "Mom I am autistic, deal with it," as she was leaving the house for her job, I'd leap with joy. I don't care if my kids ever lose the diagnosis - I just want to them to live safely, happily and productively. We need another term - like Type 1 and Type 2 diabetes, perhaps.

Parent, I have a different opinion: cancer is implicated in lots of industries including pharma - look at Hormone Replacement Therapy and breast cancer. Docs no longer prescribe HRT in the same way as when it was the miracle to prevent women from undergoing menopause.

Kim

Excellent point Kim

Ari sounds like a very intelligent and highly articulate young man. But can such an exceptionally high functioning HEALTHY person who is not a parent and has never seen a regression, never cleaned feces off all the walls in his home because his child has incessant diarrhea, never watched a baby have febrile seizures after multiple vaccines have any understanding what life is like for those severely affected by autism?

There is a crazy misconception that parents in this movement are overbearing presences who expect their children to be perfect and need to get out of the way and allow those affected by autism advocate for themselves. The reason why parents need to be a major force in autism advocacy is because OUR kids can no longer SPEAK or communicate effectively.

My son is still trying to advocate effectively for a snack. He cannot go to DC and testify before Congress like Ari.

There are far more children like mine than there are ASD people like Ari. I would never, ever expect Ari to be able to understand how sick my child is/ how much he lost - most of my old friends still cannot understand! If the National Council on Disabilities intends on appointing a 21 college student with aspergers than they also need to appoint a parent of a sick and nonverbal child and not leave the silent majority of ASD kids without a voice- again.

Simple - cancer doesn't implicate pharma (though it should imho), food, or the warehousing of children in daycare at ever earlier ages (need those shots!).

It's all about $$$ in this country, unfortunately.

Todd, I'm not setting up a straw man argument, but your use of that tired phrase is telling. I made an observation - medicine is fighting to add months to the lives of the elderly - and yet, my kids, with severe autism, have had little in the way of mainstream medical attention for over 13 years. It's not right. As far as OSR - you'd have to talk to CTI Science. I'm sure you have a copy of the safety studies of every OTC product in your own medicine cabinet or in the med cab at work?

Unfortunately Kim some people interpret the letters ASD as DNR. No thought is given to the laws of the land that ensure the disabled to the same goods and services everyone else enjoys.It is the most blatant form of discrimination,and I dare say, an attempt to eliminate them by denying them proper medical treatment.You can bet your boots if any of these folks against treating these children were having ED issues they'd be advocating for Viagra.The only way parents will get proper treatment will be to hold folks whom deny treatment responsible under the law.

@Kim

Help me understand why it's good to prolong the life of a 75 year old with cancer by several months, but it's not good to change the entire life path of a three year old who is diagnosed with autism? Aren't both desireable?

You're setting up a straw man. Of course both are desirable. The problem is that so much more is already known about various cancers, but the actual causes (and thus real treatments) for autism are yet to be puzzled out. Lots of prospective candidates, but nothing solid yet. It's frustrating as hell, but figuring this crap out takes time.

As to OSR#1, I'm still trying to find the studies showing it's safe.

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