Posts Tagged ‘HBOT’

A(nother) Laboratory Test(s) for Autism

Sunday, March 19th, 2017

A key piece of the autism puzzle appears to have been confirmed in an article published this week in the Public Library of Science Open Access Journal, Computational Biology. The title of the article is Classification and adaptive behavior prediction of children with autism spectrum disorder based upon multivariate data analysis of markers of oxidative stress and DNA methylation.

The news has already been reported in popular media as “A Blood Test for Autism“. Here is my clinical interpretation.

The Study
The data was collected from patients in previous studies, and included 83 children, aged 3-10 years, with ASD. Utilizing very dense, complicated statistics that were based on biochemical laboratory data, researchers identified neurotypical vs. autistic individuals, who already had the diagnosis, based on conventional developmental testing.

The chosen pathways evaluated abnormalities in methylation, an epigenetic function, and detoxification.

Specificity and sensitivity were very reliable, “96.1% of all neurotypical participants being correctly identified as such while still correctly identifying 97.6% of the ASD cohort.”

Discussion
Contrary to what the headlines proclaim, this is not a single test; it’s research material that is based on a number of not-yet-readily-available laboratory findings.

The biomarkers represent a final common pathway, not necessarily a cause. Although the data correlated with autism ‘scores’, it really wasn’t meant to discriminate for the various kinds of developmental challenges, such as those children who are mostly aggressive, immune, apraxic, or suffer gastrointestinal abnormalities.

Such an analysis begs the question, “Can it be used for prospective improvement – to follow course of the condition?”

Conclusion
The modern epidemic of childhood autism is extremely complicated and difficult to pin down for research purposes. This study renders a modern means to evaluate a myriad of variables. The metabolic pathways under scrutiny represent a confirmation of the roles of genes and toxins.

As with other ‘earliest diagnosis’ studies, this paper serves to solidify the concept that earlier diagnosis should lead to earlier interventions, with improved outcomes.

For those of us who are practicing ‘alternative’ medicine, it is comforting to rediscover that the treatments included in our modern arsenal of biomedical protocols are consistent with these findings.

Recess is Important for Special Needs Students, Too

Sunday, September 25th, 2016

An Open Letter to School Officials

There are developmental states between having autism and having had it. It’s analogous to the ‘pins-and-needles’ feeling following a limb injury, for example, but preceding a more complete recovery.

During that healing phase, there may be muscle weakness and nervous incoordination; dysfunction about which little can be done, other than being patient. So it appears to be with children who have achieved useful speech and a degree of socialization that enables them to join the general student body.

Leftover signs and symptoms may include immaturity (difficulty transitioning to non-preferred work, impatience, non-compliance, etc.), ADHD conduct, and aggression. It is not uncommon for pupils affected with residual ASD, therefore, to display unacceptable behavior. In a Gen-Ed setting, meltdowns may tax and even infuriate staff.

When asked about their favorite activity at school, most children answer, “Lunch,” or “Recess.” Since students can’t be denied the former, personnel may turn to withholding the latter from those who misbehave, in order to instill respect and compliance. That may be a big mistake.

Indoor activities and distractions have become the norm and consume large chunks of time. iStuff, therapies, homework, tutoring, etc. all keep youngsters out of the sun and fresh air. Physical isolation with limited calorie-burning is the last thing that children with language delay and difficulty sitting still need. Who gains from such punishment? Some kids prefer to avoid the anxiety of outside play. Perhaps, bullying is precipitating a breakdown? Others do not appear to object, at all, by such censure.

Techniques to instill self control that may have been successful in previous centuries no longer apply to a neuro-diverse student body. Parents and professionals must collaborate to make sure that a proper and appropriate plan of action follows a display of maladaptive behaviors. Strategies that are more likely to be successful – and less detrimental – can be developed. Methods should be individualized, with the help of appropriate staff. Such an approach helps assure a more productive academic season.

Access to recess should be as important as lunch; maybe even more so, since so many children with challenging behaviors are on special diets and picky eaters, anyway. Just kidding, of course (but not really).just-kidding-jpeg

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 HBOTAdverse 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.

Miracle Mineral Solution Treatment for Autism

Saturday, May 24th, 2014

I hadn’t really expected MMS to gain any traction as a viable autism treatment. It seems complicated and scary, and the FDA first issued a warning about it four years ago. Perhaps there is no measurable re-emergence, but it seemed so when I attended the Autism Today Second Conference in Miami this week.

I sat among eighty mostly-bewildered parents, representing children who are so affected that they are attracted to outlier theories and treatments. This is largely because the information supplied by the conventional medical community is so woefully inaccurate, incomplete, and unproductive for many patients.

Due to some scheduling glitches, this conference ended up focusing on the very controversial topic of MMS. The treatment was explained by Ms. Kerri Rivera, “a biomedical consultant for an autism clinic in Puerto Vallarta,” and mother of recovered child. Her experience was then authenticated by Dr. Andreas Ludwig Kalcker, inventor of “The Parasite Protocol,” which is an essential element in the therapy.

The Chlorine Dioxide Protocol is not about bleaching your kid. That was the first message. Well, it’s not about making your intestines white, but the word does mean “to sterilize.” Anyway, that refers to sodium hypochlorite, according to Ms. Rivera, not the chemical that MMS is utilizing. In that sense, it’s not about dipping your child in Clorox. Except that Chlorine dioxide is used in “stripping textiles and industrial water treatment,” and it does involve purging and cleaning the “excess of pathogens.”

  • The diet – organic vegetables and meats. GF/CF/SF/sugar free (especially fruits).
  • Supplements – Stay away from all anti-oxidants.
  • Main Ingredient – Ocean water and acid (lemon juice, e.g.), to make a dilute solution of Chlorine Dioxide.
  • How it is administered – Doses and administration depending on a pre-established protocol, plus alterations depending on symptoms and response to treatment. In the gut, it is supposed to remove the biofilm and so expose organisms that get flushed through the G-I tract. Breathed into the lungs, it addresses asthma and bronchitis. The cutaneous route helps eliminate bad skin cooties and detoxify. Enemas and rectal suppositories to directly address lower intestinal issues. There is also and Eye and Ear spray form.
  • What happens – The elimination of bad bacteria (and, admittedly some good ones – but they have a product to fix that), viruses, fungi, and worms. Lots of worms. Plenty of worm pics. Worms that no laboratory in the world, apparently, can document.
  • Acceptable additional treatments listed as HBOT, chemical chelation and GcMAF, probiotics, l-carnosine, carnitine, plant fatty acids, GABA, digestive enzymes, tryptophan, DMG and TMG (the last 2 are anti-oxidant precursors).
  • She claims to have helped over 6000 families, and 131 cases of patients losing the diagnosis.

The ‘Parasite protocol’ was presented by Dr. Andreas Ludwig Kalcker, who recommends Chlorine Dioxide treatment.  He lists his credentials as, “… first licensed in economics and later in biophysics and alternative health (Ph.D).” Addendum – I found other evidence that he received a Doctor of Philosophy in Alternative Medicine and Natural biophysics from the Open University of Advanced Sciences Inc., which is a fake diploma mill based in Florida, but lists Spain as the main address.
Although his German accent is compelling, the science that he presented was not. He listed the symptoms of parasites and noted similarities to many autistic behaviors (?cause and effect?). He claims that his key discovery was that regressive autism is due to “Parasitological Vaccinosis“. That term describes toxins that are later released by parasites in susceptible children who become vaccinated.
“Dr.” K made many grand overstatements, using real research papers that only prove the one point, frequently mixing apples and oranges. Slides such as “Larval migraines induced by vaccine,” not only lack a scientific citation, I couldn’t find any match over the entire Internet.

In the Q&A session, I asked a simple question, “131 ‘cured’ is the numerator, what is the denominator?” This resulted in Ms. Rivera and Dr. Kalcker blustering about how that number couldn’t be documented, and how it wasn’t really important. That begs the comment, “Well, if you don’t know how many have been treated in this manner, you also wouldn’t really know how many have experienced significant negative reactions.”

As expressed by top autism researcher, Dr. Martha Herbert, I do not believe that parents who attend these conferences are “gullible, dangerous, and/or don’t love their children, and the people who pass them off are snake oil salesmen.” I was there to learn about new ways to approach our most resistant patients, not to criticize. Advertising MMS in this manner is not the way to go about proposing innovative and controversial treatments. It promotes The Wakefield Effect.

Dismissing conventional medicine as being completely ignorant and challenging treatments from all sides takes strong scientific proof. Proof of concept in animal models and proof of efficacy and safety in appropriate human treatment trials. To be specific: no, I would not recommend this treatment for my patients. There is too much missing information. A few pictures of recovered children and parental testimonials should not sway a prudent professional.

At The Child Development Center, we have improved the lives of many of our patients by addressing and treating G-I health with a proven, safe, well-tolerated protocol. Nutritional status must be evaluated, treated and monitored. With appropriate behavioral therapies, child development gets on the right track.

For successful autism treatment, each piece in the puzzle has to fit into the bigger picture.

The Polarized World of Autism Diagnosis and Treatments

Monday, November 4th, 2013

Last week, Forbes’ science writer, Emily Willingham, decided to spice up Halloween with one of her usual autism-themed stories. How timely. The 5 Scariest Autism ‘Treatments’ warned readers that there are money hungry snake oil salespeople posing as caring practitioners, who are scheming to steal your money without a shred of scientific proof that their protocol is either safe or effective.

The story might have actually been newsworthy had she been more up-to-date by including such controversial protocols as Fecal Transplantation or Worm Therapy. Anyway, I felt the need to write that we can’t merely dismiss families with overwhelming problems as misguided idiots who can’t figure out that dipping a kid in chlorine is probably not a good idea. Don’t worry Emily (and the other “pro-science commenters”), MMS never had any real traction.

I replied that her ‘Scary Story’ was missing the point. Autism leads to desperation, born of mis- and missing information, about everything ASD; from diagnosis, to incidence and prevalence, to DSM IV vs. DSM-5, to… What the hell, when are you doctors gonna get your act together and help us?

The re-replies displayed a surprising degree of vitriol. All or none, black or white. Do I support Dr. W’s position or not? TheAutismDoctor.com is an entire website consisting of hundreds of pages of hyperlink-supported information about all of my experience over a 36-year medical career. I address as many of the controversial and cutting-edge protocols as I can research. I figure that castrating your child is going to be pretty extreme to any parent, so I don’t cover it unless queried.

I wrote that the conventional medications are not only ineffective for correcting core signs and symptoms, they may be harmful and even deadly. That leaves families concerned about believing the ‘regular’ doctors who suggest giving potent CNS drugs to their young child. Many feel that exploring alternative treatments is their only alternative.

How many patients have I listened to, who have complained that, “We have been doing ABA, S&L, PT, OT, etc., and we hoped to see more progress”? That’s it? No fighting for your kid. No trying to figure out why your beautiful child isn’t keeping up. That’s what one of the commenters commented. “As a doctor you should know that conventional, evidence based medicine has no interventions that address the core symptoms of autism. Parents do not “turn to unconventional therapies.” They are persuaded that conventional medicine is wrong about autism by purveyors of therapies.” Even if he actually believes what he wrote, if he had an affected child, his spouse (or vice versa) would seek further information.

Shortly, the comments turned to a discussion about vaccinations. I was accused of “pandering to my base” and “shamelessly trying to steal readers” from the Forbes blog. Parents of special-needs children will continue to search for answers and help. Pedantic warnings from non-practitioners and ESPECIALLY the non-involved are not welcomed advice. Working with a trusted professional is their best hope.

I thought that my reply was completely noncontroversial. Who could argue with the dilemma faced by today’s affected families? The Home page of this website states “I hope that my essays and our discussions breathe a breath of fresh air into the polarized world of autism diagnosis and treatment.”

It seems that there is still more work to be done in order to bring all interested parties toward a more reasonable and compassionate position.

MAPS Spring 2013 Conference

Sunday, March 24th, 2013

This past weekend marked the third Medical Academy of Pediatric Special Needs Conference, which was held in Costa Mesa, CA. I have made sure to attend every one. This time, I had the added challenge of traveling on my damaged and recently repaired left foot. But, thanks to the help of my beautiful and patient wife, Jackie, I managed to fly, hop, crutch and wheel across the country.

What started out as the “Defeat Autism Now!”(DAN!) movement, then morphed into the Autism Research Institute (which continues to support autism research and provide needed information and support for families and individuals with autism spectrum disorders), has finally become a full-fledged medical society “for the treatment of children with autism spectrum disorders and chronic special needs.”

These courses provide the required CME credits to attain a MAPS fellowship certification. This educational experience prepares practitioners from all over the world to deliver state-of-the-art care. Qualified and experienced doctors and other professionals offer detailed scientific evidence and clinical information in order to further understanding and treatment. We review older therapies, some of which may still have value, the most common protocols that the participants presently utilize, and the emerging technologies that could lead to better treatment.

The advanced courses that I attended included the following discussions:
(Day 1): Hormones & Neurodevelopmental Disorders, led by Dr. Anju Usman. Covered subjects included the CNS, HBOT and treatments such as galantamine, phosphatidyl serene, propanolol, cortisol, oxytocin, secretin, the endocrine system, calcium, the adrenals, and hormones. We also learned about remedies from plants, foods and other cultures.
Evaluation & Treatment of Older Children was presented by Dr. Dan Rossignol, who gave one of his stellar presentations thoroughly reviewing the scientific literature that helps support our various treatment protocols. Case presentations with enthusiastic audience participation rounded out the afternoon.

(Day 2): Gastrointestinal & Nutrition. Dana Laake (Dietician-Nutritionist) reviewed Advanced Nutritional Assessment including labs, signs and symptoms, and special diets (all of them, I think). Dr. Elizabeth Mumper immersed us in G-I testing and discussed “clinical pearls” – what practitioners should look for to help patients with symptoms due to an unhealthy gut. Dr. Rossignol reviewed the pertinent literature and more clinical cases. Dr. Jeffrey Bradstreet taught us about testing and treatment options for autistic gastrointestinal disturbances. He concluded his talk with a thorough discourse about fecal transplants. No shit.

(Day 3): Cutting Edge & Novel Treatments. There were lots of experts, lots of treatment possibilities, and lots of opinions. Need I write more?

The MAPS conferences are no boondoggle. Classes go from 8-to-6 for three days, with formal testing at the end of those long sessions. The most important functions include networking with doctors from all over and discussing cases – just like your children – from the youngest, to the most challenging and complicated. This information adds immeasurably to our individual clinical experience.

What’s new is that your children – young and old, disruptive or spaced, apraxia or echolalic, unfocused and anxious, suffering from seizures or repeated infections – are being discussed, reviewed and considered as patients who deserve appropriate medical attention.

MAPS participation grew by a third this meeting, but that is still not enough personnel to address the burgeoning patient load. It’s a great feeling to know that each year we are getting closer to the causes and cures for this ever-increasing epidemic.

Autism Diagnosis and Workup

Tuesday, October 16th, 2012

I spend so much time convincing other medical professionals that autism is an epidemic – and that something can be done about it – that I rarely get to offer exactly what it is that I do to help affected individuals. ASD is a complicated and mysterious set of medical conditions that appears to have several different etiologies. Therefore the work-up – from the History and Physical Examination (H&P), to the laboratory investigations, to the medical intervention – starts out in a general way. Subsequent examinations and labs will depend on the outcomes of the previous findings; and most importantly, on the patients’ responses to initial treatments. The general evaluation includes the following (with the caveat that variations arise depending on age, sex, presenting symptoms, findings on previous labs, and other factors affecting the art of medicine):

H&P – 10 minutes with the pediatrician is just not enough. The interview should include medications that were taken during pregnancy, plus a thorough feeding and family history. Careful attention to vital statistics will help, especially an accurate head circumference determination with follow-up charting. A Denver Developmental Evaluation is simply not sufficient. Nowadays, some type of autism checklist should be documented.

Audiology – I actually had a patient from Canada who never received audiology testing. The child was deaf, not autistic.

MRI – Although there is some evidence that changes may take place as early as 6 months, the value of this 3D brain picture needs to be weighed against the risk of general anesthesia (movement affects the quality of the scan). I haven’t found this test to be of great value. However, the family does get assurance that the brain, at least, looks OK.

EEG – Even if there is no history of visible seizure activity (loss of consciousness or jerking of the muscles), Drs. Rossignol and Frye are well-known autism doctors who are teaching us that a 23 – 72 hour brain-wave test (especially including a period of sleep) may be helpful in ascertaining electrical spikes which could have detrimental effects upon the child. Now, getting the kid to cooperate is another matter. Then, there is getting a qualified pediatric neurologist to read it. Then, there is a controversy about whether to treat electrical short-circuits. Then, there is the risk of medications for treating brain convulsions. Very complicated.

CBC – It seems that the only patients who get out of a doctor’s office without a Complete Blood Count are children. Forget about HBOT; if you want to get increased oxygen to the brain, why not make sure that the child isn’t anemic?

Blood Lead and Mercury levels – There is a great deal of controversy over heavy metals that may be ‘locked’ in the brain and other tissues. When evaluating patients, however, at least assuring parents that the child is not actively heavy-metal poisoned is helpful. There are many practitioners who also check hair and urine for multiple metal intoxications. I object to the use of a provocative agent (EDTA, DMPS, DMSA) to induce metal excretion without first checking the baseline levels. Little else in medicine is approached in such a manner.

Other metals – Magnesium, calcium and zinc are important in many biological reactions, and children who are generally picky eaters may not be getting enough essential nutrients. Deficiencies could cause symptoms that present as G-I or skin conditions.

Thyroid evaluation – Let’s see. The patient displays symptoms that include over- or under-activity. How do we know that this is not a thyroid problem, if this organ doesn’t get checked? We don’t.

Chromosomes – for Rett’s syndrome (females), Fragile X and microarray. Parents get told all the time that, “Autism is genetic, there’s nothing that can be done other than therapies.” Well then, why not check the chromosomes? If everything is OK in that department, the condition should be more amenable to medical intervention than previously (conventionally) believed.

G-I Health – I prefer a comprehensive stool examination that includes the types of bacteria, presence or absence of yeast, and the state of digestion of fats, carbohydrates and proteins. Toilet training can be much more effective when gut health is restored. If a person acts like they have ‘ants in their pants’, sometimes they actually do!

Food Allergies – Call it reactivity, food sensitivity or allergy. When the body reacts to an environmental agent by producing an immunoglobulin, inflammation results. Reducing overall energy-depleting reactions in my young patients often results in significant improvement in fog, eye contact and communication. A gluten-free, casein-free diet will generally not work if: 1) The patient is not allergic to gluten and/or casein or 2) The child continues to ingest something else that  is very reactive. So, I test for multiple substances and ‘The Diet’ is the The Patient’s Diet. Additionally, I often evaluate G-I health with levels of morphine coming from gluten and casein (‘leaky gut‘).

Vitamin levels – Vitamin A and D levels are a good way to assess the patient’s state of nutrition. The low Vitamin D levels here in Florida are surprising. Is it sunscreen or lack of going outside to play? With evidence that autism may be due to vitamin deficiency, this is easy to check and address.

Comprehensive metabolic profile – Liver and kidney function can not only be documented, but serve as a baseline for future interventions, such as tolerating other medications that may be required.

Lipid panel – Both high and low cholesterol may cause health problems. If the levels are elevated, it can engender a discussion about what diet would be preferable. Very low levels are amenable to medical intervention which is often helpful with eye contact and communication improvements.

The list serves as a general guideline, at this point in time, with the technology that we now have, and the state of our knowledge. Therefore, frequent changes are to be expected.

That said, this can be a place to start in order to evaluate the cause, symptom complex, and treatment of a patient with ASD. Most of the laboratory tests are usually covered by some sort of insurance and the more exotic testing may be reserved for later dates, as the patient goes through treatment. Although there may be some controversy over which specific test(s) are more or less helpful, there can be no argument that such a framework is in the patients’ best interests and has a better chance to lead to successful treatment than merely stating, “The child has autism, and that explains everything.”

Stem Cell Therapy for Autism 2

Monday, April 23rd, 2012

Previously, I discussed the potential that stem cells can exhibit to differentiate into useful tissue. Families interested in curing, reversing or overcoming symptoms of their child’s autism with this technology ought to be knowledgeable about whether the process works for other medical conditions. Unarguably, even by those who perform the procedure for autism, the evidence is in it’s earliest stages.

Current Stem Cell treatment that is medically utilized (United States):

Stem cells are useful when bone marrow requires rejuvenation after chemotherapy or radiation to wipe out cancer cells.

Pretty close to acceptance:

Heart attacks with cardiac damage

Ongoing investigations include:

Bladder repair / replacement

Retina repair

Cornea replacement

Strokes

Spinal cord repair. FDA approval for a study. A recent citation entitled, Human Umbilical Cord Blood Stem Cells Infusion in Spinal Cord Injury: Engraftment and Beneficial Influence on Behavior actually refers to rodent recipients.

Central Nervous System Conditions such as Multiple sclerosis or Parkinson’s Disease

Evidence (not necessarily experience) lacking:

Autism Spectrum

Cerebral palsy

Brain injury

Other Central Nervous System Conditions (e.g., Alzheimer’s)

The information will advance at a rapid rate, so my advice is to discuss the information as it pertains to your child, with a knowledgeable, independent and trusted practitioner.

1. Only consider human trials. We’re talking about a loved one here. A recent Cancer Research article was entitled, Human Neural Stem Cell Transplantation Ameliorates Radiation-Induced Cognitive Dysfunction. Although it looks very promising, the procedure was performed on rats. I can’t help thinking how easily someone with a vested interest in influencing a particular outcome might use that headline in order to justify or provide evidence of stem cells’ efficacy.

2. Surf wisely. Do your own research. Since much of that involves the ‘net, you are observing edited presentations of patients who are only like your child in their families’ desire to help heal their child. Are the images you watch of male or female children? What are their ages, and other co-morbid medical conditions? Did they present after vaccination (as always, an impossibility according to the AAP), like your kids, or were the children atypical since birth? Did they have GERD, or frequent antibiotic usage, or abnormal stooling since they came home from the hospital? What other treatments, such as antibiotics or steroids, were given with the transplant? Anecdotal evidence is very difficult to evaluate from youtube.com or parental testimonials. Editing is the whipped cream that can convince hopeful parents to take the plunge (and often, music is the cherry-on-top).

3. Learn when Stem Cell Treatment didn’t work. The first questions I ask when presented with any autism protocol are, “Who didn’t get better?”, and of course, “Who got worse?” These procedures are being performed in foreign countries. Even if, as is the usual contention, the criteria for certification or cleanliness are as stringent as they are in the US, the reporting agencies may not be. Centers should provide well documented outcomes and transparent (and reproducible) statistics. Follow up studies are scant. Since I know that many parents have grave concerns over administering oral melatonin to assist sleep, I can’t imagine how those families deal with this level of investigation.

I am always interested to learn from patients who have had the procedure performed on their children, some multiple times, and some who are looking to do it again. In the limited population that I have examined, the children appear to respond the same as with most biomedical treatments in that the more affected the child, the more treatment(s) is required. I have not yet noted more improvement than in those children who were treated with less complicated biomedical interventions.

Next up: Choosing a Stem Cell Center

Stem Cell Therapy for Autism – Part 1

Stem Cell Therapy for Autism – Conclusions

Stem Cell Therapy for Autism

Tuesday, April 17th, 2012

Stem Cells Microscopic View

Parents search the world for answers when their child has a complicated medical condition. The more exotic, enigmatic, or frankly, hopeless the situation seems, the farther that journey takes them. When families consider a medical procedure as complicated as Stem Cell Therapy, they need to be well informed from an independent – but not necessarily adversarial – source, in order to decide a) a whether to proceed with such a therapy and b) the optimal center for the treatment. Imparting that knowledge in a few concise posts is the goal of these next few blogs.

It took me 5 posts to fully explain and give advice about Hyperbaric Oxygen Treatment; my point being, if someone tried to explain such a complicated topic to you with LESS than that amount of information and thought, you didn’t get enough information, or think about it enough.

Stem cells have the potential to differentiate into other cells; to become skin cells to repair a severe burn, bladder cells if that organ is diseased or removed, or neurons in the case of spinal cord injuries. In the earlier years of this research, there was a controversy because this particular type of tissue could only be harvested from embryos (very young fetuses), since that would be the greatest source of this type of material. However, the cells can now be extracted from bone marrow, fat, blood (from another person, from yourself, and the umbilical cord at birth), and amniotic fluid and then kept alive and grown in the laboratory. With the appropriate stimulation factors, the desired type of cell can then be ‘born’.

That background information is particularly paramount when considering this type of procedure for autism because the GOAL of this therapy is to stimulate neural pathways which have not developed or developed incorrectly in your child’s brain. So, when choosing a person’s own stem cells, two essential issues are, “Won’t those cells have the same problem as the child?” or “if something is going on with the child’s system, won’t it also affect the new population of cells?”

I have spoken to practitioners of this therapy who answered, “No, the damage may have really occurred at some other time, so these cells will do the trick.” I guess if you are talking about a child who regressed after a vaccination (though that’s impossible, according to AAP), and you have frozen the child’s cord blood cells, you could argue that pre-damaged cells could perform the new tasks – as long as there is no ongoing systemic problem (with the immune system, for example).

If you choose abdominal adipose tissue from the patient (belly fat – a popular new development), you are assuming that those multi-potent stem cells do NOT contain the same “error” in transcription (making a protein from the DNA, pictured), in order that the new cells will overcome the poorly functioning ones. By choosing the cells of other people, the patient is risking tissue acceptance by the their own immune system.

This discussion has only scratched the surface of such a complicated treatment. In addition to considering the desired source of the stem cells, the follow up questions include:

Where to put the cells

How the cells are gonna get to where you want them to go

Who you can trust to perform it

The cost, including opportunity costs

Efficacy, best provided by anecdotal experience at this time

The risks, mostly unknown at this time

Research, experience and recommendations

So far, my advice on the procedure is to find a good Special Needs Pediatrician. Work on exploring sources of reducing inflammation and addressing cellular energy which has been disrupted by this condition. Unless I uncover some fantastic information in my research, there are many other worthy treatments to be considered when the child is first diagnosed. For severe developmental delays which remain resistant to present protocols (conventional and alternative), “stem cell therapy” will often  surface as an option for the concerned parent and should be considered with a trusted clinician.

This background information will serve as the introduction to my next blog, (Part 2) about the present state-of-the-art of this controversial ASD treatment.

Stem Cell Therapy for Autism – Part 3

Stem Cell Therapy for Autism – Conclusions

National Autism Association Fall 2011 Conference

Monday, November 14th, 2011

By reporting the highlights of the various conferences that I attend, I have found that 1) it helps me to recall and imprint the information and 2) it helps families who weren’t at the conference to gain knowledge which might be of value for their child. Although this is in no way equal to having attended, this summary will also guide readers about where to look on the Internet to read more about these topics, and/or to attend future seminars.

Dr. Dan Rossignol was a major presenter this year. He spoke about Folate Receptor Autoimmunity in Autism Spectrum Disorders. The resulting relative folate deficiency could be a significant contributing factor to many cases of autism because of reduced brain metabolism and energy production. In his inimitable style, Dr. Rossignol presented about a thousand scientific papers discussing his position, and it certainly seemed to make sense from where I sat. Suffice it to say that a) cow’s milk might contribute to the problem, b) giving folic acid to pregnant moms may not be the correct form of the vitamin, c) there are both blocking and binding antibodies and so autoimmunity plays a large part and d) folinic acid (the active form of folate) may ameliorate the situation.

Dr. Rossignol’s other lecture was Mitochondrial Dysfunction in Seizures and ASD. First, I love seeing the cartoon of the electron transport chain that produces cellular energy (can’t get enough of that one) and Dr. R has perfected this in his presentation. The point of his lecture is that, although ASD patients don’t necessarily have full-blown mitochondrial disease, there appears to be a great deal of dysfunction in the cell’s ability to make and store energy and so there are downstream symptoms that appear very much like autism. Again, lots of supporting evidence was presented as well as treatments – many of which are the same energy enhancing therapies that we already utilize in the biomedical protocols. Speaking ever faster, then Dr. R gave an hour lecture – in 15 minutes – about the occurrence of seizure-like activity (if not actual seizures) which may contribute to many autistic symptoms.

Also, along with Drs. Usman and Berger, Dr. Rossignol directed a very thorough ‘question and answer’ session. The topic of hyperbaric oxygen was covered in some detail, especially the research experience that showed positive responses to this controversial therapy. I was a bit disappointed that Dr. R did NOT cover the CARD HBOT study which was not able to conclude the same positive results as his research, which was funded by the makers of the chamber. However, for the parents who attended this session, they got to ask really specific questions about their children and the physicians were quite forthcoming with their advice.

Scott Smith, a physician’s assistant and one-time colleague of Drs. Rossignol and Bradstreet, presented a very informative lecture about P.A.N.D.A.S., which is an autoimmune syndrome whose symptoms closely overlap those of autism. His point was that testing, diagnosis and treatment are similarly related in the two entities, and that we can learn a lot about ASD from studying patients who suffer from the debilitating symptoms of P.A.N.D.A.S., including severe OCDs, tics, behavioral disturbances and regressions in cognition and language.

Dr. William Shaw, the Director of Great Plains Laboratory gave a very enlightening presentation about cholesterol deficiencies which may occur in ASD patients, resulting in decreased brain structure and function. He discussed  the importance of the Sonic Hedgehog protein (yep, it’s named after a game character), a major signaling protein which could be altered in the presence of low cholesterol and therefore lead to symptoms, including autism. Cholesterol is also important in the binding of serotonin and oxytocin, which have also been implicated in ASD symptomatology. Oxytocin was discussed a lot during the conference – not much to report other than anecdotal improvements.

Dr. Anju Usman’s lecture was Autism and the Autonomic Nervous System. There was more evidence about the benefits of oxytocin, especially when combined with secretin (which was a popular ASD therapy several years ago). The importance of cortisol and a normal biorhythm was presented, especially when disturbances occur and the autonomic nervous system (sympathetic and parasympathetic) becomes unbalanced, resulting in many symptoms which autistic individuals experience. Just hearing Dr. Usman calms the listener – I’m sure that her families appreciate her wonderful demeanor.

Dr. Elizabeth Mumper of the Rimland Center gave a wonderful talk about starting therapy for the autistic child. I mention this because any parent (or professional) who is new to the ASD puzzle will gain a great deal of knowledge by attending one of her lectures.

Dr. Andrew Wakefield gave a presentation about his upcoming book, Waging War on the Autistic Child. Look, I love hearing Andy speak (that British accent is so compelling) and he got a really raw deal from the medical community. But, I’m not sure if perhaps he has jumped the shark?? You know, gone overboard with a presentation about how one family got screwed by the government, school system and complicit, ignorant, unyielding doctors who didn’t agree with how one set of parents were raising their children. What else is new? I would like to see Dr. Wakefield focus more on what we CAN DO about it – the science and the research that will force change through knowledge.

The most illuminating presentation, I found, was by Raun Kaufman, a recovered autism patient. His dad, Barry Neil Kaufman, wrote the book, Son-Rise, which documented the journey. Raun was dynamic, entertaining and informative. His organization, The Autism Treatment Center of America, provides expertise and education so that parents can actually help their kids out of their autistic world by entering it and enhancing interactions which can then be generalized to other areas in their lives.

But the best thing about this weekend’s conference? It was the sound of laughter coming from parents and squealing of kids in the swimming pool. I couldn’t stay to hear Dr. Julie Buckley’s lecture about Caring for the Caregiver, but I bet relaxing and having fun must be part of her prescription.

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