Archive for the ‘HBOT for ASD’ Category

Medical Academy of Pediatric Special Needs – Fall 2016

Sunday, September 11th, 2016

This week, the Medical Academy of Pediatric Special Needs held its semiannual conference in downtown Atlanta, GA. This is ‘Ground 0’ for practitioners, researchers and professors from all over the world to meet, learn, explore and discuss a myriad of relevant topics.

Members who have been returning for 100’s of lecture hours generally choose the advanced courses. For some, the conference has become a group of ~50 experienced and knowledgeable practitioners who meet to discuss ‘workups’, basic science, relevant research and treatment protocols for those who are most affected with ASD.

Notes and Observations
Day 1 – Tough Cases
I really enjoyed our lectures by the plain-speaking Dr. John Green, of Portland, OR. Dr. Green not only reviewed those who improved because of his medical expertise, but those who got better in spite of him, those who haven’t gotten better, those who got better but he can’t figure out why, and the most frustrating – patients who improve only to suffer frequent relapses.

Dr. Sid Baker, a pioneer of the biomedical movement, described his early medical experiences in Africa that morphed into his lifelong dedication to treating patients with ASD. He expressed his disappointment that so many conventional colleagues disagree with our practice.

Dr. Baker elucidated how he initiates care with new patients. He discussed increasingly resistant cases, covering topics from severe speech apraxia to the approach to children with injurious behaviors.

The first day was filled with the most frustrating and difficult cases you can imagine. Eminent practitioners Drs. James Neuenshwander, Michael Elice, and Julie Buckley challenged our diagnostic and therapeutic knowledge, attempting to navigate the complicated courses of those who improved and those who didn’t.

Day 2
Dr. Daniel Amen‘s morning lecture was entitled “3D Brain SPECT Imaging”. The takeaway message was that SPECT scans – technology – could/should/will become a mainstay for a multitude of CNS disorders. His manner and stories of research, technical evaluation, and clinical practice, were positively spellbinding and inspirational.

Dr. Theoharides presented his research and extensive knowledge about the important role of allergy in ASD. Dr. Theo continues to publish a mountain of monumental works, not only on the topics of autism and the role of mast cells, but treatments, as well.

Toxins were the subject of the afternoon’s lectures. We learned about the identification of substances in the environment that are dangerous, how they are measured, how damage is done, and the means to control and treat. For the skeptical reader, there was a plethora of supporting scientific evidence of the relationships to autism (and many other modern conditions).

As has become customary, Dr. Dan Rossignol rounded up the day with a roundup of all of the latest scientific research. Rapidly.

Day 3 – Advanced Clinical Cases
Severe behaviors and speech apraxia. For patients who are most resistant to conventional and alternative treatments, essential oils, acupuncture, and even worms were explored as possible solutions.

Throughout the afternoon, cases got even tougher! Lyme, Persistent Lyme, Non-Lyme Lyme, PANDAS, PANS, parasites… an increasing number of reasons to have signs and symptoms that are called autism. Such information extends our knowledge and leads to better diagnoses for our patients, and possibilities for treatment.

Dr. Green discussed biomarkers. Though these ‘labs’ are not specific to ASD, per se, this will become a necessary next step to document level of involvement and response to treatments.

A brand new treatment, repetitive Transcranial Magnetic Stimulation was presented by Dr. Arun Mukherjee. The jury is still out on this expensive intervention.

Conclusions
One important reason that I return to this meeting, is simply that I feel at home among like-thinking practitioners. Members don’t agree on every subject, but we are respectful and actually enjoy our practices.

In traditional medicine, conferences are basically show-and-tell affairs, where researchers report their data, previously published in medical journals. When doctors think outside the box, practitioners with diverse skills, who are scattered over the globe, discover improved results by networking in this fashion.

Patients, parents, and families can feel confident that progress is being made (slowly), as serious, dedicated doctors continue to try to unravel this modern mystery.

Finally, I am proud to report that, at this meeting, I was awarded Fellowship status in the Medical Academy of Pediatric Special Needs.

Medical Academy of Pediatric Special Needs 2016 Spring Conference

Sunday, May 1st, 2016

Practitioners, such as myself, find that it is necessary to attend the bi-annual Medical Academy of Pediatric Special Needs conference for two important reasons. First, to listen to experts from all over the world present their knowledge and latest research. Second, to network with, and learn from, other like-minded practitioners.

What I Liked Best
This year, I chose the ADHD path. The workups that were presented tended to be somewhat complex, and perhaps unattainable for many patients. The bottom line was to get a medical evaluation. The differential diagnosis ranges from thyroid to PANDAS. Mostly all agreed that stimulant and psychotropic meds should not be the first line in treatment. One professor spent some time questioning the diagnosis, itself, and how the modern world has contributed to the epidemic.

What I Liked Least
Traveling all the way to Costa Mesa, CA. Course work is 8 hours per day, so no time for Disneyland, etc.

This Year’s Major Focus
Mitochondrial function continued to play a big role in the presentations. The advanced courses involved lots of methylation, detoxification, and energy production diagrams. The newest twist has been the addition of genetic testing to better determine the cause(s) of inadequately functioning biologic pathways. Single nucleotide polymorphisms (SNPs) and ‘epigenetics’ were the buzzwords – how individual genes interact with the environment and within the individual leading to dysfunction and downstream signs and symptoms.

Topics That Were Discussed in Passing
Microarray genetic testing, covering multiple genes, did not play a big part in this year’s talks. Discussions about childhood immunizations underlie a great deal of the members’ conversations; specifically the lack of solid scientific evidence for safety in high risk populations. Attendees are not against vaccinations, by the way. Lyme disease was discussed in general, and as that inflammatory process relates to other infectious-metabolic conditions.

Subjects Not Formally Presented
GcMAF and nagalase levels. Some patients have indicated that a useful, safe supply may become available, so that will help determine future use. As well, chlorine dioxide, hyperbaric oxygen treatment, helminths, medical marijuana, and stem cell therapy were not offered by this year’s presenters.

Conclusion
It is disappointing to return from such conferences without that ‘magic bullet’. Just standing around, listening to Sid Baker speak about how he got interested in autism, or asking him how the ‘ion cleaning’ footpath worked, is worth the price of admission, however. This science started with Dr. Baker, and he continues to be an inquisitive, gentle force for hope, 40 years later.

In the absence of a sufficient population of scientists who are willing and available to address this modern epidemic of childhood developmental problems, this meeting stands as a bastion against the current state of ignorance.

Where Have All Those Autism Treatments Gone?

Sunday, March 8th, 2015

Secretin, OSR, Namenda (memantine), Bumex (bumetanide), Actos, Spironolactone, and more, have all been prescribed to improve the signs and symptoms that ASD individuals experience and display. Some are only used in rare circumstances, others are no longer even available. Now, it’s GcMAF.

The Situation:
For several years, that macrophage-boosting blood product has been used to improve immune functioning in various conditions, including ASD. There have been reports of successful amelioration of negative behaviors and facilitating communication.

At The Child Development Center, there have been 25 patients who received the product, either by subcutaneous or sublingual route. As reported here, ten of the children improved enough for the parent to re-order a ~$1000US solution. Improvements were reported in cognition, communication, and even toilet training.

Without any explanation regarding why the company no longer produces, GcMAF.eu now redirects the user to GcMAF.se (France to Switzerland). The site has the following disclaimer:”… it is not possible to purchase GcMAF here… A dozen companies have claimed to make GcMAF. Most of them failed…”

The website offers alternatives that are less than reassuring. “Immunobiotech.eu, … the most professional company in this field.” “An Israeli company was offering GcMAF at $1,000 a shot, but many of the people using it did not believe it worked. It was probably inactive.” Or, they plainly disparaged the product. “Saisei Mirai – a Japanese company… Somewhat risky to inject in our opinion, and their research papers don’t seem to show good results”.

The Outcome:
Presently, when one door closes on the medical treatment of autism, there are few remaining ones to explore. Conventional prescriptions gain a stronger foothold, no matter how limited they perform, or how serious are their side effects.

Professionals feel compelled to assist in ameliorating aggressive behaviors with strong CNS medications, such as Abilify, Risperidone, or even Zoloft, Prozac, and Klonopin. No medication promises to assist the acquisition of speech and language.

Alternative treatments, which may carry reduced evidence of usefulness or safety take a stronger hold, as well. Parents who are seeking improvements are neither foolish nor ignorant – they are desperate. Families are left to evaluate anecdotal reports and Internet stories.

The Conclusion:

A great deal can be learned by the experience of those treatments
that have become less popular, or even extinct.

With an ever-increasing incidence of ASD, more therapies are bound to be invented and evaluated. Parents are not going to give up their fight simply because they are admonished about being ‘unscientific’ or ‘over-‘ emotional.

As more professionals experience affected patients, newer trials are bound to take place. When pharmaceutical companies see an improved return on their investments, they are more likely to join the effort. Increased prevalence boosts enrollment in scientific research.

There is a common theme of gut improvement and addressing immune function. Mostly, what the storage locker of trial treatments contains, are some important keys to understanding, treatment and prevention.

Hyperbaric Treatment Revisited

Sunday, September 28th, 2014

hbotx2The use of HBOT for various neurologic conditions was a central focus at the most recent Medical Academy of Pediatric Needs conference. This is an update to the extensive review presented here nearly 4 years ago.

How HBOT is supposed to work:
It’s not rocket science. Because human blood is already 98% saturated in room air (21% O2), simply breathing higher concentrations provides very little improvement, and might even be detrimental. Adding pressure to the air that we breath helps dissolve some gases into the bloodstream. Therefore, in addition to the oxygen that is already attached to (and released from) our hemoglobin, more ‘nourishment’ can become available for the tissues.

‘Hard’ vs. ‘Soft’ Chambers:
Discussed here. More oxygen, more pressure, more danger, more expense, more schlepping. More effect? Suffice it to say, most people will not have the former in their own home.

Conditions with documented improvement:
There are 14 FDA Approved conditions for the use of HBOT, with supporting evidence of varying persuasiveness.
Decompression sickness.
Whether returning from too much or too little ambient pressure, there is improvement from ‘letting the cap off’ more slowly.

Non-healing wounds and those in diabetic patients.
The scientific literature showing improvement refers to high O2 (100%), as well as pressure (> 1.5 ATM); therefore, a ‘Hard’ chamber.

Cerebral palsy, stroke, and traumatic brain injury. Controversy about efficacy is unresolved.
For CP, improvement was demonstrated with the ‘High’ pressure type. A recent paper did not reproduce those results. Another study showed no significant difference when patents were exposed to the ‘Soft’ version. Parents, therapists and physicians, myself included, have observed positive results in many severely affected children.

Depression.
There is evidence of improvement after exposure to the ‘Hard’ chamber in one patient with post-traumatic stress disorder, plus other anecdotal reporting. That was also the finding in a group of patients suffering from depression after a stroke.

Hyperbaric Treatment and Autism Spectrum Disorder:
That’s the $2,000 –  $100,000+ dollar question. For the uninitiated, that represents the cost to try, or buy, the various forms of this treatment modality.

A few years ago, respected autism expert, Dr. Dan Rossignol documented improvement in a significant number of children. That was dampened shortly thereafter, when Dr. Granpeesheh, et. al. reported, “… that HBOT delivered at 24% oxygen at 1.3 atmospheric pressure does not result in a clinically significant improvement of the symptoms of Autistic Disorder.” A controversy has ensued, no doubt inflamed by the latter study authors’ statement that, “the results of this study corroborate the findings of the only other published study on HBOT… not the study authors’ interpretations of their findings.”

Yikes, what is a clinician to do? Or, the parents? At our scientific meetings, I have pressed some of the authors about the conflict. One doctor explained that, defending the ‘good’ outcome paper appears too proprietary. In the absence of stronger scientific proof, it shouldn’t appear that they are selling HBOT chambers. A different expert questioned whether there was a CARD (Centers For Autism and Related Disorders) conspiracy, with a bias against this intervention. We have enough of those controversies in autism.

Conclusions:
Depending on the family’s resources, parents who have “tried everything else” with few results may wish to explore HBOT. Adverse events are rare and mild. The FDA has issued a statement of caution against off-label use. I wish that they were as worried about antibiotics in our food.

When systemic health is restored, many of the signs and symptoms of the conditions included in the diagnosis of ASD abate. To the extent that extra pressure addresses the sensory patient, HBOT can be a valuable (albeit expensive) therapy. Anaerobic bacteria and yeast would tend to shun the oxygen rich, higher pressure environment of a chamber. And, on a percentage basis, even +1.3ATM added pressure enriches plasma. The latest buzz involves ‘dormant’, not dead, neuronal cells, which are waiting to be invigorated.

However, sustained results are often achieved with therapies, sensory diets, probiotics, appropriate supplements and medications, when indicated. One of our data-crunching tech professionals recently asked me, “Why can’t you guys figure out if one is better than the other? Or, if they complement each other?”

He’s right. We need to figure it out.

Extreme Autism Treatments

Sunday, September 29th, 2013

Autism is a diagnosis that sometimes leads to signs and symptoms so severe in affected children that it drives parents to risk significant resources in the hope of getting relief. Investment in money, time, and energy needs to be balanced with other proven treatments such as ABA and S&L, which should be included in any present protocol.

It is to be expected that, when consistent, reproducible improvements come along, they will get attention, there will be further patient trials and funding, and superior medical treatment for ASD. Absent that, we see a mix of treatment protocols, including:

1. Treatment regimens that seemed helpful, but have been disproven (secretin)
2. Technologies that need to be better proven (HBOT)
3. Chemical treatments that remain unproven (chelation)
4. Really expensive and as-yet unproven (stem cell therapy)
5. Transient improvements, and, you can’t-afford-them-anyway (IVIG)

Then, there are the really hard-to-digest (if you will) interventions, such as Fecal Transplantation (1, 2, 3, 4, 5 ) and Parasitic Worms (A, B, C, D ).

Worms. Yep. The idea is to get a parasite into the patient’s intestines in order to establish a short term relationship (so the child has to get ‘dosed’ with the little buggers) that helps foster a healthier immune system. More like in the good ol’ days, when we lived on the farm, and we worked around pig whipworms (which only hurts pigs) and autism didn’t exist.

Actually, the therapy has been around for a couple of years. Which, is the point of this story. If it really worked miracles, we would have heard about it. It may have appeared miraculous for some patient(s), but cause and effect have yet to be established, so perhaps it is just chance that led to any observed improvement. That’s why there is science.

There are, admittedly, families who have observed real improvement in their autistic offspring when they take such drastic measures. That begs the question of research. That is why patients need care from concerned professionals who really scrutinize articles and papers. Beware of unproven testimonials on the Internet, advertised as ‘research’. Parents need to read alternative opinions, as well.

Moreover, there is general agreement with the less-than-proven therapies’ basic assumptions about immune regulation. That is why only rigorous testing will decide what holds true. To date, I have been able to improve more behaviors by removing parasitic infections that the number of patients who have been reported to have been helped by introducing worms. There will need to be additional investigation and proof in order for either Fecal Transplantation or Worm Therapy to gain a clinical foothold.

In the meantime, we need to advise families about theories that work and therapies that improve most of the patients by practitioners who are willing to have our protocols tested.

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