1. Health

Discuss in my forum

Hyperbaric Oxygen as a Treatment for Autism: Let the Buyer Beware

By March 14, 2009

Last week, Dr. Daniel Rossignol released results of a short-term controlled study on the use of hyperbaric oxygen therapy (HBOT) to treat symptoms of autism. HBOT involves placing patients in an oxygen chamber which is then pressurized; it's been found to be helpful for "the bends" and carbon monoxide poisoning, though rare side effects can involve injury to ear drums and even seizures.

According to Rossignol, the outcomes of the study suggest that the treatment is effective in reducing problems with speech, behavior and eye contact. Headlines suggest that HBOT could be a major new breakthrough in the field of autism treatment - and ads for home HBOT systems (costing thousands of dollars) are everywhere.

Before rushing out and demanding HBOT from your doctor or buying your own HBOT system, be aware that this is ONE short term, unreplicated research study conducted by a person who has staked much of his reputation on the effectiveness of HBOT. Consider:

  • Dr. Rossignol is "the" proponent of HBOT, and has been speaking at conferences all over the world in support of the treatment. Clearly, he has a personal and professional stake in seeing that the outcomes of a research study are positive.
  • The present study was funded by the International Hyperbarics Association, a trade group of private hyperbaric therapy centers. Clearly, they have a similar stake in seeing positive outcomes.
  • The present study lasted for only four weeks, while HBOT treatments usually last much longer. It's not clear whether there are consistent or long term gains at all.
  • Granted that HBOT is surely safer than some alternative treatments, it is not without risk.
  • It is unclear why and how HBOT would make a difference for children with autism. The theory is that the system reduces inflammation in the brain - but that theory is controversial and unproven.
  • Home HBOT systems are not the same as hospital systems, and using such a system outside of a medical setting may be useless or even potentially dangerous.
  • No insurance company will cover the very high cost of HBOT for autism, as it is considered an experimental and unproven therapy.
Could HBOT actually be a useful tool for treating autism? It's absolutely possible. But until Dr. Rossignol's work has been replicated by researchers with no personal stake, with funding that comes from a neutral source, I'd recommend extreme care in getting involved with the treatment. Certainly, if you're choosing between funding a well-researched therapy versus trying out HBOT, I'd stick with the tried and true.

Follow me on Twitter!

Find me on Facebook!

Comments
March 14, 2009 at 10:21 am
(1) Mel says:

I can only give my own experiences with mHBOT, but for us it was a mixed bag. Our 2 boys (4 1/2 and 3) did 10 dives last year. Our oldest, who is the higher functioning of the 2, didn’t show much result from our 10 sessions, however, our middle child (the 3 yo) made a HUGE stride in speech after his second session. He was oxygen deprived/injured at birth (had to be resuscitated) and at the time that we started mHBOT he was non-verbal (3 scripted words) and by the end of the second session we got 2 new words that week, and that trend continued through his sessions. After the 10 dives, his learning did stall, but he did not regress.
For us, that in of itself made mHBOT worth it, and when we save up the money to do more dives, we won’t hesitate at all.

March 14, 2009 at 11:17 am
(2) AnneS says:

Hard chamber worked very well for us. Soft chamber didn’t do much. Both are worth trying if you can afford it, in my opinion.

March 14, 2009 at 11:50 am
(3) Harold L Doherty says:

“Certainly, if you’re choosing between funding a well-researched therapy versus trying out HBOT, I’d stick with the tried and true.”

Yes, ABA is well researched, tried and true.

March 14, 2009 at 12:10 pm
(4) Bill says:

One must always keep in mind with ANY treatment which is uncomfortable, invasive, restraining, upsetting to routine or even painful, that “improvement” might possibly be related to a desire to avoid further treatment. If a child is told that they have a problem which needs to be cured, and the child does not like the mechanism of the cure, the child may alter behavior to assert that the unpleasant “cure” is no longer necessary. This learned response to discomfort is similar to the effect of the ubiquitous and highly successful treatment for aberrant behavior which was popular before the 1950′s; it was called “spanking the brat”.

March 14, 2009 at 12:21 pm
(5) Bill says:

Another point on hyperbaric treatments; autopsies on the brains of professional divers have often shown brain lesions presumably from the air bubbles blocking capillaries in the brain and causing minuscule strokes. It’s called cerebral air embolism.

It’s not your gamble, it’s your child’s gamble.

March 14, 2009 at 12:36 pm
(6) Fielding j hurst says:

I am reading your post from inside our chamber as we speak. My daughter loves being in it. Mixed results. We do 4 weeks on then 3 weeks off. One fringe benefit is that it seems like a vacation for the parent not in the chamber with her. Mom likes to do work with her in the chamber. Dad prefers playing computer and watching movies. I really have no clue on long term benefits, but the short term seems real during the periods when we are doing the chamber. Teachers, ana folks, slp , and of folks all report super great results during this time and don’t know we are doing it.

I love the chamber, but it could all be in my head but I always feel fabulous after being in it. I confess to using a lot without the kid. You have not lived until you have taken a nap in the chamber. :-)

Fjh

March 14, 2009 at 12:49 pm
(7) Bill says:

If hyperbaric treatment really works (I am open to the possibility), how will we make certain the operators do not cut corners?
Right now hyperbaric chambers mostly sit idle as emergency treatment for carbon monoxide victims and divers. What happens when there suddenly is demand for the units, when there are appointments, and people waiting in line for treatment, and an economic incentive to move as many patients a day through a machine? Speed is the enemy of a patient in hyperbaric treatment. There is also a problem with cost; there will be no economy of scale, thus no savings as more people require hyperbaric treatment.

And of course there is the problem with making sure there are no sparks, like doomed the astronauts who died in Apollo 1 fire.

March 14, 2009 at 2:04 pm
(8) Sandy says:

HBOT is suppose to be regulated by the federal government and the chambers suppose to be only used under a doctors care. The soft chambers are FDA approved only for the treatment of altitude sickness. They can explode and what’s scary is people who actually buy these for their home use. many different things can cause a spark. Happens all the time in any old house, let alone one with a chamber. HBOT has about 9 plus things it says it can help. There’s studies out there that found with brains that suffered a lack of oxygen, the use of HBOT actually caused cell death. And of course there is the cost. Like any other alternative therapy, it’s about impossible to afford.
Offit had some very good coments in the ABC article on this topic.

June 29, 2011 at 6:46 pm
(9) Steve says:

Sandy is one of those people that needs to never open their mouth, she is simply ignorant. Soft chambers can’t explode. Shut your mouth if you haven’t done any research and it shows.

March 14, 2009 at 2:22 pm
(10) MJ says:

You may be being a little hard on the study. It was a multicenter, randomized, double-blind, controlled study. It is true the the authors may have a vested interest in results and that it was on the smaller/shorter side.

BUT this is the type of style of study that needs to be done to prove that treatments work. This is not some small uncontrolled study – this style of study is (from what I understand) the golden standard for proving treatments.

What we need now is for these results to be confirmed and replicated by other researchers. If they are then this could be a powerful treatment option.

April 25, 2011 at 4:20 am
(11) sherryAnna says:

Yes, I do agree we need more studies. UCD Davis /Mind Institute. Pilot study of the effect of Hyperbaric Oxygen treatment on Behavioral and Biomarker Measures in Children with Autism (HBOT)In this current trial, significant improvements were observed in several domains with the use of hyperbaric treatment at 1.3 atm and 24%
oxygen compared to slightly pressurized room air, including overall functioning, receptive language, social interaction, eye contact, and sensory/cognitive awareness. The reason for these different areas of improvement is not clear. The mechanism of action of hyperbaric treatment in
autism is not entirely known. Given the positive findings of this study, and the shortage of proven treatments for
individuals with autism, parents who pursue hyperbaric treatment for their child with autism can
be assured that it is a safe treatment modality at the pressure used in this study (1.3 atm), and that
it may improve certain autistic behaviors. Further studies are needed by other investigators to
confirm these findings; we are aware of several other planned or ongoing studies of hyperbaric
treatment in children with autism. However, in light of the positive results of this study and
those of several previous studies ], the use of hyperbaric treatment appears to be a promising treatment for children with autism.
Principal Investigator was Dr Robert Hendren with UCD

There is hope for these kids.
SherryAnna Levatino

March 14, 2009 at 2:53 pm
(12) autism says:

MJ- I absolutely agree that this was a randomized study. The problem with this particular study (IMHO) is that it’s conducted and funded by folks with a vested interest in a particular outcome.

The truth is that many such studies are conducted, and many are then substantiated – and I hope this will be the case with HBOT. I have to say, though, that I’m a little skeptical…

Guess only time and additional research will tell.

Re HBOT and Bill’s concerns: if HBOT does become a standard treatment for autism, and it’s approved for use, I would assume that there would be standards in place for its use. Like any medical device, it would obviously need to be used correctly.

Lisa (autism guide)

March 14, 2009 at 6:01 pm
(13) David M. says:

All you ever hear from the “vaccine happy talk” and “autism is genetic” groups are show us the studies. Anecdotal evidence is not enough. Everything is a coincidence.
Autism exploded in the 90s when the vaccine schedule was changed – sorry, a coincidence.
Autism appears around 18 month right about the same type as some heavy vaccines – sorry a coincidence.
I could go on and on.
Now there is a study with controls and all that Star Trek lab stuff that those groups want and it shows – wait for it – HBOT is effective. This has been known for years by many people.
Why don’t you and the rest of the negative crowd read this for what it is. Proof that there is something to what parents have been saying for years.
And by the way, Dr. Rossignol is an honorable man.
And please, the CDC and vaccine makers don’t fund studies. Don’t be naive. The only reason there aren’t more studies like this one is that autism groups and parents are busy paying for treatment like HBOT that insurers and the mainstream “experts” laugh at.
Last week the New York Times called HBOT treatment for autism “quackery.” I am not holding my breath for that follow-up story. Don’t fall into that same group. Accept this news and get the word out. Maybe more news like this will help a lot of people.

March 14, 2009 at 7:26 pm
(14) Michael Boll says:

Lisa I always appreciate your balanced and rational approach to the various treatments out there. I too like to side with tried and true research and avoid experimental treatments. You have to spend your time somewhere if you are helping a child/adult with autism, so it might as well follow the path of the best researched therapies.

March 14, 2009 at 7:59 pm
(15) autism says:

David M. – as is often the case, people read into what I’ve written, and believe I’ve said something I haven’t.

I did NOT say that Dr. Rossignol is less than honorable.

What I DID say is that Dr. Rossignol has a strong personal and professional stake in the outcome of this trial. Indeed, he does. So do ALL the researchers who espouse a particular innovative treatment – Dr. Greenspan, Dr. Gutstein, Dr. Lovaas, and all the rest. Rossignol’s dedication isn’t a bad or a wrong thing – but it does put him in a unique position relative to findings re HBOT (as does the funder with whom he’s working).

I did NOT say that vaccine makers don’t fund studies. Of course they do! And in prior blogs I’ve written at length about how hard it is to locate a wholly “unbiased” study.

I DID say that additional studies that replicate Rossignol’s findings will be important in determining the effectiveness of HBOT. And I stand by that.

Bottom line: this is not a witch hunt. Rossignol is not being persecuted here. He’s completed an interesting study – but there’s more work yet to be done. Meanwhile, as I said in the blog, I personally recommend that parents not get involved with HBOT unless they have the funds to do both HBOT AND traditional therapies.

More importantly, parents should not be purchasing systems that pump pure oxygen under pressure into their homes, and then turning on electrical appliances next to or in them. THAT is most certainly asking for trouble.

Lisa (autism guide)

March 14, 2009 at 9:00 pm
(16) Sandy says:

David M~ Not sure why you have to divide people in to groups, but since you have autism often appears at different ages. For my child it was apparent at birth. Not a coincidence.

With the price tag of HBOT, which often is not ever covered by insurance when related to autism, parents should research this prior to considering it. Like anything, ABA included, if it worked that well for every one we’d all be doing it. If, for some with autism it is genetic, or even if it’s vaccine related, wouldn’t you still want more studies as to what HBOT does to the brain? Evidence of why it works? HBOT is about so out of reach of being affordable, I wouldn’t spread the word about it at all unless it was to show more research and the price tag lowered.

March 14, 2009 at 11:55 pm
(17) David M. says:

Sandy and Autism author – St. Paul Offit railed against desperate parents trying “wacky” and costly treatments like HBOT in his less than best selling book. Now a study comes out – which had nothing to do with vaccines and autism – which says that a treatment has shown to be effective against Autism and he and his ilk are caught with their pants down and instead of applauding this study, Dr. Profit shows his lack of class by saying negative things against the study. (He is Dr. Profit because his vaccine was bought for $182 Million. That kind of moola tends to blur your objectivity. Doubt Dr. Rossignol is looking at that kind of payday down the road. Might be nice to cite this dollar figure every time the Good Doctor is cited by the media.)
If it can be shown and it was in the study the HBOT works against Autism, maybe some of those other “wacky” ideas that Offit rallied against will be shown to have merit. This is why St. Paul is not supporting this study.
And anyone (hello Sandy) who uses St. Paul to support anything relating to autism shows they have ZERO understanding of anything. (Ask St. Paul Offit what the studies comparing vaccinated vs. unvaccinated reveal. Oh wait, they have never been done. My bad. Ask him about what it’s like to treat autistic children. Oh wait, he has never treated even one. My bad again.)
Anyway, I would think anyone who wants to see autistic children get better would be PUMPED by this news that a study confirms that a course of treatment actually works and is backed by a valid study.
What am I missing here?
Are you all against Oxygen? Are you aware that when there is trauma in the body – sprains, strains, viruses, etc. – oxygen is one of the most effective means for the body to repair itself. That’s Biology 101. Did you miss those classes or were you smoking in the girls room in high school?
And the argument that people should not do HBOT in their house because the oxygen might blow up or something, is that what I read above from the author? Oh boy.
Do you know every time you drive in your car you are driving around with gallons of flammable liquid right underneath you. A spark, a crash and BOOM – big explosion.
Does that stop you from driving your car?
Now with this study, the insurance companies will be under pressure to add HBOT as part of their coverage as it is shown to work and when kids are healthier and less dependent upon special services, school systems and state government will not have to pay as much to care for them. So there will be a huge push for this as ultimately, it will save money. Sure it is expensive – right now. But so are Hybrid Cars but if there is a need for them (and HBOT) and they are mass produced – we live in a capitalistic society by the way – then their costs will go down as the market increases for them. (Hey, I have a great business idea. Someone should start producing HBOT systems. I know that at least 1 in 150 children could use them. That is a pretty good market size for a new company.)
Lastly, I know Dr. Rossignol and all the great work he is doing, especially with his own children. I would put his ethics and care for children up against anyone including St. Paul Offit and his $182 Million Bucks.
Say goodnight Lisa and Sandy…

March 15, 2009 at 12:33 am
(18) Harold L Doherty says:

Lisa not to digress from your principle subject but I have to question your reference to Lovaas as espousing a particular innovative treatment. ABA, as you know, has been studied for decades and its effectiveness in helping autistic children make gains has been endorsed by a number of serious, credible agencies including the US Surgeon General, the NY State Department of Health, the MADSEC (Maine) Autism Task Force, the American Academy of Pediatrics and the Association for Science in Autism Treatment to name the most prominent.

March 15, 2009 at 9:44 am
(19) Lisa says:

Harold – my understanding is that, while behavioral therapy is very old indeed, Lovaas is really the person who spearheaded the work on ABA as it relates to autism.

Lovaas has a particular take on the therapy – and some of his earlier ideas (regarding “consequences” for “wrong” behaviors) have been pretty thorougly discredited. There are also a lot of questions about studies conducted by Lovaas (relative to whether the samples were appropriate, whether they were really replicated, etc.).

Of course, it’s widely known that ABA is an effective tool for improving symptoms of autism. But Lovaas remains a fairly controversial figure.

Lisa

March 15, 2009 at 10:24 am
(20) Sandy says:

David M.~ did you read what Offit wrote? Do you happen to know which part of what he said I was referring to? You’re absolutely rude and disrespectful in most of your comments in #15.

“Another problem some doctors had with the study was the theory behind why, exactly, treatment in a bariatric chamber might help. Since the cause of autism remains unknown, there are doubts whether any one specific therapy could help.
Researchers speculate in the paper that the oxygen flow to the brain is reduced in autistic children, a condition known as cerebral hypoperfusion, and the hyperbaric chamber is able to reverse that.

Offit added that he, too, is skeptical of that idea because autism has been shown to affect specific areas of the brain, but if cerebral hypoperfusion was the problem it should be affecting the entire brain rather than specific regions.

Ultimately, more study will be needed to make any recommendations on hyperbaric therapy for autism. In the meantime, any parents seeking to try it may not have to worry about its effect on their child’s health but will need to worry about their finances.

“The way we work in this country … when a paper comes out, we tend to take it as fact,” he said. “We should wait until we see if this is reproduced.”

In the study, they received 40 treatments- costs range from $100 to $900 so if we take the low end, 100 X 40 = 40K per child. The cost of ABA has never dropped so assuming this would is just that, assuming. They also suggest to use HBOT along with other therapies, so add the price of HBOT to ABA and to me that equals bankruptcy.

Anyone who was ‘smoking in the bathroom’ could still understand that. No insurance company is going to be pressured into covering that cost. Many insurance companies would pay for DAN doc expenses, or part of it but many of those doctors refuse to submit claims and only accept cash. I can see that very same thing happening with HBOT. And by the way, generally only in the movies does cars explode upon spark or impact. In reality, it rarely happens. As for ‘Biology 101′, the body is naturally suppose to heal itself without HBOT.

That’s something to be excited about? The only ones who’ll be excited is those providing this spendy alterative.

March 15, 2009 at 10:54 am
(21) Patti says:

I rented a soft-sided HBOT chamber (1.3 atms) for one month, which was all I could afford. My son got 80 hours in the chamber, and showed dramatic improvement. His language skills improved, his reasoning skills improved, his overall mood improved, and his OCD issues lessened.

I have never understood why some parents of children with autism choose to question treatments that thousands of parents say helped their children! Yes, not every therapy helps every child, but if it could help your child to be the best person they can be – why wouldn’t you consider it?

The parents that are working to heal their children’s vaccine injuries have learned that we can’t wait around for the “studies” to validate treatments that we see helping our children with our own eyes. I choose to do my own research, and follow what my son’s trusted autism specialist recommends. I have never regretted it. HBOT, chelation, treatment of my son’s gut issues, ABA, etc. have all helped bring my son back from severe autism to the delightful boy he is today.

HBOT has been proven to increase blood flow in the brain. Bacteria can’t thrive in an oxygen-rich environment. If you choose not to believe the anecdotal reports of parents, at least consider these two facts.

And seriously, people – you can bank on the fact that if Paul Offit says something is bad for our kids – you should run out and try it immediately!

March 15, 2009 at 11:38 am
(22) Sandy says:

There is bacteria in the body normally, some bacteria in the body has known beneficial tasks while other bacteria’s found normally in the body have no known benefit or known harm. If Bacteria cant thrive in an oxygen-rich environment, you may be killing off the good stuff. Bacterial infections is another story, like flesh eating bacteria, or bacterial pneumonia or the bacteria in ones mouth. Most times, HBOT is not used for treatment of these things but extensive use of antibiotics. Having low oxygen levels can promote anaerobic pathogens, bacteria, viruses, fungi, parasites, and mutated cells, but a compromised immune system can cause this too however there is no evidence that adding oxygen will ever prevent those things when exposed. Your immune system is suppose to be working when exposed to those things to begin with and if you have a compromised immune system, I’m not sure HBOT will help at all.

As for Paul Offit, many have his same opinions. Many requests for interviews for the ABC article was out right declined by many experts yet Offit risked giving his opinion and the after-math slams. I bet he’s used to it by now.

March 15, 2009 at 12:05 pm
(23) lisa says:

Patti – you say “seriously, people – you can bank on the fact that if Paul Offit says something is bad for our kids – you should run out and try it immediately!”

Clearly, the implication is that Paul Offit (and any mainstream physician who agrees with him) intends to deliberately injure children by misleading parents.

Whatever Dr. Offit’s personal plusses and minuses – and whatever the plusses and minuses of mainstream medicine – I am absolutely certain that neither he nor anyone else (at least, no one who is sane) is intending your children harm.

Of course, he and others could be wrong. But in this world, no one can claim an absolute hold on what is true. Meanwhile, I stand by my statement that it is wise to look carefully at evidence and costs before leaping into therapies for autism.

Lisa

March 15, 2009 at 12:32 pm
(24) Sandy says:

“The parents that are working to heal their children’s vaccine injuries have learned that we cant wait around for the “studies” to validate treatments”

This is a dangerous statement which of course goes with the ‘False Prophets’ and one should consider that statement wisely above all else. Many children can be harmed without valid studies and subjected to treatments that end up not working. I’m not sure thousands of parents can afford HBOT, however what ever their claims are for their own child does not at all depict it would work the same for another child, vaccine injured or otherwise. and while that child is exposed to other therapies, one doesn’t then know if it was the HBOT, or a combination of HBOT, ABA and chelation and just plain developmental progress.

March 15, 2009 at 12:39 pm
(25) Patti says:

No, Lisa –
You may attempt to manipulate my words, but the implication is NOT that Paul Offit or any mainstream physician who agrees with him intends to “deliberately injure” children by misleading parents. Did I say that??

And I never said that he or anyone else is “intending our children harm”.

Please – attempting to minimize my opinion by spinning my words is extremely transparent and not at all constructive to this discussion.

Most parents of vaccine-injured children have a negative opinion of Paul Offit because he makes and sells vaccines, admits that he is not an autism expert (and does not treat children with autism), yet he can always be counted on to dismiss any treatment that works to heal vaccine injuries.

So I stand by my statement, because the very treatments this man disregards are the very treatments that have helped my son.

March 15, 2009 at 1:03 pm
(26) Lisa says:

I’m not sure what is meant by “attempting to minimize my opinion by spinning my words is extremely transparent.”

I’m not attempting to obscure anything whatsoever.

I am not attempting to smear Dr. Rossignol.

I am not attempting to tell you how to treat your child.

I am TRANSPARENTLY saying that it is a good idea to choose treatments wisely.

And I am TRANSPARENTLY saying that a single unreplicated study is a good start – but that there is more work to be done on HBOT before it can be considered a “proven treatment for autism.”

This blog post was simply meant to be a piece of information for the autism community regarding a study. It was not my intention to start a major battle.

Perhaps this site should avoid mentioning any actual studies or findings, and focus only on non-controversial issues like “how to teach your child with autism to brush his hair.”

But quite honestly, I would rather not have to go that route – particularly since findings like Dr. Rossignol’s DO have the potential to lead toward real progress.

Lisa (autism guide)

March 15, 2009 at 1:47 pm
(27) Sandy says:

Comments like “And seriously, people – you can bank on the fact that if Paul Offit says something is bad for our kids – you should run out and try it immediately!” also do not add constructiveness to the discussion and vaccines or injury has really nothing to do with the use of HBOT, either. The negative opinion stood right out.

HBOT does not advertise healing for vaccine injuries. It also states “greatly increased functioning” without stating exactly what that functioning was that was improved. The article given on this site states “hyperactivity and anger”.

The study gave 40 treatments an hour each- yet the article given on this site states 2 times a day for 4 weeks = 56 treatments which is even more than the study actually provided. Or one could look at it as 2 times a day which equals the hour given in the study per 40 treatments- which means an hour a day for 4 weeks is really 28 treatments.

Regardless of Offit’s own opinion’s, why just pick at him? Rossignol himself agree’s with Offit that more studies need to be done.

Tell me, just who is the expert on autism?? Tell me, just who is the expert who treats those with autism??

March 15, 2009 at 2:22 pm
(28) Patti says:

I thought I was clear in stating that when you said -
“Clearly, the implication is that Paul Offit (and any mainstream physician who agrees with him) intends to deliberately injure children by misleading parents.” – you were wrong.

That was not the implication. It was something YOU said I implied, when I did nothing of the sort. That’s what I mean by transparently trying to spin my words – saying I said something completely different than what I said.

As to the rest of your latest post – I never said you were attempting to obscure anything. I never said you were attempting to smear Dr. Rossignol. I never said you were attempting to tell me how to treat my child. Again, these comments have nothing to do with either of my posts.

It was not my intention to start a major battle, either. I assumed that when you invite comments after a story on a particular treatment, you might want to hear from parents who have actually tried that treatment. So I gave you my opinion, and told the story of how HBOT helped my child.

The battle began when you attempted to spin my words to make YOUR point. I don’t like that, and I’m sure you don’t like it when someone does that to you, either.

March 15, 2009 at 2:59 pm
(29) passionlessDrone says:

Sandy says:

In the study, they received 40 treatments- costs range from $100 to $900 so if we take the low end, 100 X 40 = 40K per child.

You are off by a factor of ten. Startlingly, it is among your most cogent on this thread.

Tell me, just who is the expert on autism?? Tell me, just who is the expert who treats those with autism??

Dr. Rossignol is a quite well known DAN doctor who has seen hundreds, and perhaps thousands of children with autism. That makes him the expert who treats those with autism, doesn’t it?

Perhaps you know of someone with more expertise in treating children with autism?

- pD

March 15, 2009 at 4:57 pm
(30) Sandy says:

I know who the man is, him and another DAN doc has done other studies- and the K slipped into the figure but that was the low end anyway. It still equals spendy no matter how you do the math.

Everyone keeps yapping about who isn’t the autism expert- I’d like to know who IS consider then the ‘expert’. Rossignol may then be an expert pertainng to DAN doc type stuff, but that would be it.

March 15, 2009 at 5:10 pm
(31) ANB says:

St. Paul Offit railed against desperate parents trying “wacky” and costly treatments like HBOT in his less than best selling book.

Lisa: Does this mean I can make up disparaging nicknames for David M?

March 15, 2009 at 5:18 pm
(32) AutismNewsBeat says:

Perhaps this site should avoid mentioning any actual studies or findings, and focus only on non-controversial issues like “how to teach your child with autism to brush his hair.”

Seriously, that’s a good idea. Studies need to be put into perspective, and I’m not sure this site is the proper forum for that kind of analysis. Rossignol’s DAN!! study is hardly dispositive.

March 15, 2009 at 5:48 pm
(33) Lisa says:

ANB: you say “Studies need to be put into perspective, and I’m not sure this site is the proper forum for that kind of analysis. Rossignol’s DAN!! study is hardly dispositive.”

In fact, Rossignol’s study is news. That’s why I wrote about it.

I know that there are many sites in which studies are broken down, analyzed, debated and discussed at length. And I absolutely recommend that readers with a real interest in and understanding of biological studies visit with folks like Orac and Prometheus to get their perspective (and join the debate).

Meanwhile, as you know – I do feel that this is the right place for letting readers know of breaking news, significant studies, new books, etc. It’s also the right place for discussing issues like hair brushing, toilet training, etc.

In short, this is a a general interest autism site. My personal role, as I see it, is to bring a voice of moderation and common sense to the conversation.

Lisa

March 15, 2009 at 7:33 pm
(34) MJ says:

Lisa you said -

“visit with folks like Orac and Prometheus to get their perspective (and join the debate)”

So what you are saying is that if I wanted to clear, unbiased discussion of research about autism those are the sites to visit?

That is like telling an atheist to go visit the pope to have a discussion about religion or telling someone who is interested in evolution to visit their local priest.

Sandy you wrote -
“Rossignol may then be an expert pertaining to DAN doc type stuff, but that would be it.”

What exactly would be “Dan doc type stuff” and how does it differ from “autism type stuff”?

March 15, 2009 at 7:34 pm
(35) AutismNewsBeat says:

What you call “news” is a self fulfilling prophecy. Even a quack study becomes “news” when it’s written about on a NY Times blog. If you can’t provide the context and understanding found on the science blogs, then how can you possibly bring “moderation and common sense” to the conversation?

That said, the DAN!!! HBOT study has three main problems, according to those who provide context:

1) Statistically it doesn’t look like Rossignol can claim an effect because there are multiple measures. This is especially the case if you only look at the ABC and ATEC evaluations, without the more subjective global impressions (“highly improved”, etc.)

2) It’s unclear the study could be properly blinded if the parents are experienced with HBOT. According to the study, parents were allowed into the chambers with the children.

3) The variables are not necessarily independent. For example, the intake variable values are unusual for a random study. There’s an ~12% chance for that large of a male:female ratio discrepancy. There are non-trivial discrepancies in two other variables. It would be interesting to have the individual-level data to see if it’s statistically possible for the trial to have had all of those discrepancies simultaneously.

March 15, 2009 at 8:16 pm
(36) autism says:

ANB: you say “What you call “news” is a self fulfilling prophecy. Even a quack study becomes “news” when it’s written about on a NY Times blog. If you can’t provide the context and understanding found on the science blogs, then how can you possibly bring “moderation and common sense” to the conversation?”

First of all, as I keep telling my father, About.com IS NOT the New York Times! It is a part of the company, but the NYT runs its own health channel. I have NO contact with the NYT – period.

Second, I am not making the news, I am reflecting it. Rossignol’s HBOT study is stop of the fold news on major health sites and many major non-health sites. The fact of my writing about it doesn’t make it significant.

Third, my point in writing on this blog is NOT to offer a dissection of every study that comes along – and yes, EVERY study could be dissected as many dissect this one. Rather, it is put the news of the day into some kind of context relative to what the study IS, who conducted it, what it found, and what additional work needs to be done.

I understand that you feel anyone with a DAN! connection is suspect – but here is a legitimate controlled study, published in a peer reviewed publication, conducted by a legitimate and credentialed investigator. I am open to the possibility that it is a first step along the path of validating a useful new therapy.

Lisa (autism guide)

March 15, 2009 at 8:18 pm
(37) autism says:

MJ – the reason I mention Orac and Prometheus is simply that their sites spend a vast amount of time dissecting scientific studies. By all means, feel free to list other sites that do the same from a different perspective!

Lisa

March 15, 2009 at 8:31 pm
(38) Sandy says:

There is a difference between a DAN doctor being an expert on autism. For one, there’s zillions of these doctors and they’re all not experts, are they??

There is certainly more to autism than a DAN doctor.

So we know Offit at least according to some, is no expert. Who is? Is Rossignol the expert because of this study and working at International Child Development Resource Center? Or is it because Rossignol is anti vaccine?? Or is it related to Rossignol and Bradstreet’s study relating to HBOT and Mitochondral Dysfunction and autism? That 2008 paper suggests that Mitochondral Dysfunction has symptom’s as follows: cognitive impairment, language deficits, abnormal energy metabolism, chronic GI issues, and to make it even more interesting, Rossignol states Mitochondral Dysfunction has a higher ratio in males than females.

So, is Rossignol an expert on autism, or Mitochondral Dysfunction which very much appears like autism??

March 15, 2009 at 8:57 pm
(39) mamacate says:

I’m not an epidemiologist, but I’ve worked with a handful of them, and I think the biggest problem with this study seems to be that there is no hypothesis about what the biological mechanism of the effect is. It’s a sad commentary (and recent events at Mass General and elsewhere reinforce this), but if you rejected every study that was funded by those with a vested interest, you’d write off most pharmacological research.

Because of the lack of clarity about how or why this (supposedly) works, I would want to see it replicated at least once or twice by other researchers, before I even began to believe it. I have to admit that if it was a psych drug with the research coming out of a mainstream health system, I would probably be less skeptical. That’s not logical, I realize.

March 15, 2009 at 9:12 pm
(40) MJ says:

“There is a difference between a DAN doctor being an expert on autism. For one, there’s zillions of these doctors and they’re all not experts, are they??”

I think a majority of them would be experts about autism, yes. Just as I am equally sure that there are some DAN docs who are snake oil salesmen.

The entire point of the DAN protocol is treating autism – Defeat Autism Now. Chances are if you have taken the time to become a DAN doc that you treat autism and deal with it everyday.

I would take a good doctor who deals with autism as their specialty over a GP who sees it occasionally or someone like Offit who has no real day to day experience in treating autism but likes to play an expert on TV.

March 15, 2009 at 10:08 pm
(41) AutismNewsBeat says:

Taking the time to become a DANite involves attending a grueling 8-hour conference. Or, if you don’t have time, you can listen to a conference on your tape deck. One in 10 DAN MDs and DOs have been disciplined by their state medical boards.

And yes I have sources for everything I’ve written here.

March 15, 2009 at 10:18 pm
(42) Sandy says:

Rossignol seems to have a lot of research on Mitochondral Dysfunction and HBOT and since autism is so close in symptom’s to Mitochondral Dysfunction, well maybe the treatments for both may help. Seems according to Rossignol, supplements also help Mitochondral Dysfunction. The idea of HBOT and autism is cerebral hypoperfusion, which is seen with Mitochondral Dysfunction and effects the whole brain. However previous findings suggests autism effects specific parts of the brain. So which is Rossignol an expert of?

The idea was presented that a certain doctor wasn’t an expert or treated any with autism, so their opinion of HBOT and this article would then have no bearing. None of us are autism experts, are we? And since there is no known causes for autism, I’d venture to say there really cant be an expert since causes may be so different between those who have autism. If any one actually read what Offit said, it wasn’t that bad and made some very good points, and Rossignol agreed with him that more studies should be done.
I believe Rossignol is an MD.

March 16, 2009 at 11:20 am
(43) MJ says:

“And yes I have sources for everything I’ve written here.”

And the source would be?

March 20, 2009 at 12:16 pm
(44) AutismNewsBeat says:

Sandy, Rossignol has no board certification in Developmental-Behavioral Pediatrics, Child Neurology, Neurodevelopmental Disabilities or
Undersea & Hyperbaric Medicine. His study partner, Dr. Bradstreet, has reportedly counseled parents that autism can be driven from a child’s body with exorcism.

MJ, I know that nothing I could possibly write will persuade those who have already made up their minds, but here are the cites:

1 in 10 DAN MDs and DOs discplined
http://leftbrainrightbrain.co.uk/dan-doctors-us.html

Please don’t just assume this list is correct. Click on the links – they will take you to the state medical board documents that go into more detail about the professional misconduct of each of these doctors. One of the DANites is Roy Kerry, who killed a young boy with chelation. Kerry wasn’t a DAN doc at the time, but he applied afterwards and was accepted. Another DAN doc, Anju Usman, sent the boy to Kerry.

Requirements for DAN membership

From the Autism Research Institute disclaimer:

As before, the Autism Research Institute disclaims and does not endorse or support any individual or entity listed; makes no representations, warranties, guarantees or promises on behalf of or for those listed, and assumes no liability nor responsibility for any service or product provided. ARI does not “certify” practitioners or guarantee competence, skill, knowledge, or experience.
Defeat Autism Now!® conferences are held each Spring and Fall to further advance the treatment of autism. The conferences have produced a base of physicians who wish to employ rational, scientifically sound approaches to the diagnosis and treatment of autism, and who regard psychoactive drugs as their last choice, not their first.
The Defeat Autism Now!® Executive Council (DEC) agreed upon ARI’s policy regarding the Clinician Registry. The policy is as follows:
• The clinician is a licensed healthcare provider.
• The clinician must attend a Defeat Autism Now!® Clinician Seminar at least once every two years.
• Starting in 2010, clinicians must attend a level I and a level II seminar to be listed on ARI’s clinician registry.
• ARI reserves the right at their sole discretion to not include, or to remove, a practitioner from the Clinician Registry.

http://www.autismwebsite.com/practitioners/us_lc.htm

March 20, 2009 at 8:41 pm
(45) Navi says:

I have to say, for once Harold’s first comment is one of the most coherent on this thread.

Thank you Harold.

March 22, 2009 at 7:43 pm
(46) MJ says:

“MJ, I know that nothing I could possibly write will persuade those who have already made up their minds, but here are the cites”

I checked the list you referenced against the current DAN list here:

http://www.autismwebsite.com/practitioners/us_lc.htm

What I found was that 9 out of 32 names on the list from LBRB were on the list of DAN doctors.

So based on 282 doctors on the DAN list that puts your figure closer to 3 out of 100 rather than 10 out of 100.

That is assuming of course that all of the information about actions against the doctors is perfectly accurate. Since it includes non-medical infractions (DUI) and cases that did not result in any action (Dr Kerry) I think that is a large stretch.

I would hazard to say that your information is out of date at best.

So would you care to modify your statement or are you someone who has “already made up their minds”?

March 23, 2009 at 10:06 am
(47) Sandy says:

The charges dropped against Roy E. Kerry was a shame. A child died in the hands of that man and if anything, it says alot about the medical field and ‘trusting’ doctors that so many parents complain about when it comes to vaccines. In the court papers, the heavy metal levels in that child wasn’t even high enough to use or need chelation. That’s the scary part about chelation to begin with, is who is reading the test results and are they chelating for no reason, plus your adding agents into your child’s body which is sulfur based (DMSA). Even using high doses of suppliments can over work the organs of the body with prolonged use. There’s also not one set of DAN protocol’s, there’s a few. Then you have people like Ms. McCarthy who after stating her child was recovered after diet change, announced she was going to try chelation last summer without even first stating there was heavy metals present.

In the case of the 5 year old boy who died, he shouldn’t had been given chelaton therapy to begin with, and I truly hope that family wins their civil suit.

As for DAN doctors, I can say for one of them in my state, who is a chiropractor, told me we’d have my child come in and have his back cracked which insurance would pay for and we’d then at that same time assess for other things related to DAN. But I couldn’t just come in and not have my child’s back cracked, otherwise there could be no billing to insurance. Any tests for heavy metals I’d have to pay for that lab work since of course he had no lab rights nor could submit to the insurance for that, and I’d have to purchase products directly from him. The whole thing sounded to me like insurance fraud and a product scam. If you talk to enough people, some of these DAN docs to the labs in their basements.

No one needs a DAN doc. I had a GI Doc do heavy metal tests, which my insurance wasn’t scammed into covering and in which was an unbiased person reading the test results.

March 23, 2009 at 11:56 pm
(48) AutismNewsBeat says:

MJ, the list of disciplined DANites is nearly two years old. I only counted 170 MDs and DOs on the ARI list – a 5.3% rate of discipline, if your research is right, and only nine disciplined MDs and DOs are still hanging the DAN shingle. You were probably counting NMDs and chiropractors. The full list also includes dentist, RNs, naturopaths and even some names without any initials.

So it appears that ARI has culled its stable of witch doctors. That’s a good start. There’s still room for improvement, and will be until ARI takes responsibility for the competence of its DAN practitioners.

My beliefs are subject to change as new evidence presents itself. The fact that only 5.3 percent of DAN practitioners have been disciplined for writing phone prescriptions, covering up drunk driving violations, practicing without a license, illegally experimenting on chidren, innappropriate sexual contact with patients, and other sundry activities hardly constitutes a ringing endorsement of a movement that has jettisoned evidence-based medicine in favor of voodoo and guerrilla marketing.

DAN accepted Roy Kerry to its hallowed ranks after he killed a child. Anju Usman of Naperville, IL, has never been disciplined for sending Tariq to his death in the summer of 2005. And DAN docs continue to chelate children for autism, despite a complete lack of evidence for its efficacy.

So which of my views would you like me to modify? I’m open to real evidence.

March 24, 2009 at 1:24 am
(49) kudra says:

Who do you think funds the research for pharmaceutical companies? And this is partly why the research on HBOT is sparse, who is really going to benefit financially from this therapy? It is more cost effective to amputate a leg than to staff a HBOT center for the dozens of treatments the patient will need. Oxygen cannot be patented, while perhaps someone might benefit from the sale of chambers, it is not comparable to the interests of the pharmaceutical industry.

Aetna has a good overview of the mechanics of HBOT:

Numerous studies of autistic individuals have revealed evidence of cerebral hypoperfusion, neuro-inflammation and gastrointestinal inflammation, immune dysregulation, oxidative stress, relative mitochondrial dysfunction, neurotransmitter abnormalities, impaired detoxification of toxins, dysbiosis, and impaired production of porphyrins. Many of these findings have been correlated with core autistic symptoms. For example, cerebral hypoperfusion in autistic children has been correlated with repetitive, self-stimulatory and stereotypical behaviors, and impairments in communication, sensory perception, and social interaction. Hyperbaric oxygen therapy might be able to improve each of these problems in autistic persons. Specifically HBOT has been used with clinical success in several cerebral hypoperfusion conditions and can compensate for decreased blood flow by increasing the oxygen content of plasma and body tissues. Hyperbaric oxygen therapy has been reported to possess strong anti-inflammatory properties and has been shown to improve immune function. There is evidence that oxidative stress can be reduced with HBOT through the upregulation of antioxidant enzymes. Hyperbaric oxygen therapy can also increase the function and production of mitochondria and improve neurotransmitter abnormalities. In addition, HBOT upregulates enzymes that can help with detoxification problems specifically found in autistic children. Dysbiosis is common in autistic children and HBOT can improve this. Impaired production of porphyrins in autistic children might affect the production of heme, and HBOT might help overcome the effects of this problem.

Finally, HBOT has been shown to mobilize stem cells from the bone marrow to the systemic circulation.

Recent studies in humans have shown that stem cells can enter the brain and form new neurons, astrocytes, and microglia. It is expected that amelioration of these underlying pathophysiological problems through the use of HBOT will lead to improvements in autistic symptoms. Several studies on the use of HBOT in autistic children are currently underway and early results are promising.

March 24, 2009 at 7:28 am
(50) autism says:

Kudra – seems to me that we spend a ton of healthcare money on therapies that are not directly helpful to big pharma. Painkillers make more money for pharma than do physical therapists – yet physical therapy is funded through insurance. And so forth.

IMHO, Rossignol has completed a first, promising study on HBOT. If it turns out to be an effective treatment, my guess is that plenty of people will make plenty of $ on it. At the same time, though, they’ll save plenty on educating and caring for people with autism whose symptoms have been alleviated.

Seems like a win-win, assuming it’s validated.

Lisa

March 26, 2009 at 7:01 pm
(51) ANB says:

Rossignol’s study is “promising”? Please elaborate.

March 26, 2009 at 8:04 pm
(52) autism says:

ANB – The guy did a blinded study, and came out with a positive finding. How is that not promising??

Lisa

March 27, 2009 at 12:43 pm
(53) m says:

I am encouraged by the study, but a long-term study is desperately needed to ensure that the results are not temporary. Let’s hope one is forthcoming quickly so parents can make very informed decisions on whether to spend the money on this.

BTW, the protocol that was found effective was a high pressure environment for 40 DAYS, everyday. If you have done anything less, then you haven’t done the full protocol and can’t say whether it worked or didn’t for your child.

April 10, 2009 at 1:41 pm
(54) One NJ Mom says:

Dr. Rossignol — This doctor is a wonderful person. When you’ve met him in person and talked to him about his two autistic children, you can really understand his drive to help children with autism. I believe that his motives are noble and humanitarian. We (as a country and society) should be giving him a medal and awards – - and real research dollars funded by uncontroversial sources.

August 29, 2009 at 8:07 am
(55) doctor victim says:

40 x 100 =4k not 40k

Maybe calculated by the same people who say that >1 out of 93 males will by brain injured by vaccines is an acceptable loss. Practice herd immunity on adults, not innocent children. Utilize an adaptive vaccination schedule based on epidememoligic statistics.

April 6, 2010 at 2:13 am
(56) eric says:

I am the technical service manager for the for the largest manufacturer of hyperbaric chambers in the U.S. (non- portable, 3 atmospheres potential). My company has over 4 thousand chambers installed in hospitals worldwide and I have been in hundreds of hospitals over the past 25 years. My wife is a speech pathologist with over 30 years experience working with autistic children. We have heard it all… and as much as I would like to sell you all a hyperbaric chamber ($80,000 to start), take it with a large grain of salt… the affects of HBO on autistic children..and most other “unapproved-off label”..are dubious. One of the posters here is happy that her child learned 2 new words after god knows how many hyperbaric treatments. Is it not possible to learn 2 new words without HBO? And just a tip….if you are worried about fire, don’t put flamable material (tv controllers, static producing fabric, chemicals) into your do-it-yourself garage chamber.
The intent of HBO is to disolve greater amounts of oxygen into your tissue, but it will not turn beef jerkey into filet mignon. I know parents will do anything for their children with autism, but there are MANY hyperbaric practioners who will gladly lighten your wallet and not blink a malpractice eye.

Leave a Comment

Line and paragraph breaks are automatic. Some HTML allowed: <a href="" title="">, <b>, <i>, <strike>

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.