Archive for the ‘HBOT for ASD’ Category

The Perils of Home Treatment for Autism

Sunday, November 5th, 2017

Were it not for a lack of knowledge or, frankly, interest on the part of most of the medical community, parents of children with autism would be happy to relinquish their quest for appropriate treatment.

Too often, I listen to stories about pediatricians who have declared, “Well, I don’t know much about that ‘spectrum’ diagnosis. Let’s wait 3 to 6 months and see what develops.” Or neurologists who, after observing a patient for less than 5 minutes arrive at what they think is an accurate diagnosis, followed by little in the way of explanation, and even less effort to provide relief, other that a ticket to, “find a good therapist.” Then, there is the peanut gallery of mildly interested observers who implicate over-diagnosis and link the epidemic to anti-vaccination conspiracies.

That being said, the families who are left to fend for themselves in this void must navigate a sea of dangerous waters in order to find safe, reliable and effective protocols for children affected with ASD. These are some of the issues that frequently arise for those warrior-parents.

No matter how ‘benign’ the intervention, what works for one child might actually make another child worse. There are many different kinds of autism, including boys (aggressive) vs. girls, early vs. late (language regression), immune (rashes, constantly sick and antibiotics), gastrointestinal (reflux, bowel problems), and genetic variations. Furthermore, at any one point in time, speech apraxia, social isolation, sensory issues, or aggression might define a child’s autism. So, Dr. Google’s therapy du jour may not even apply to the present status of your offspring.

Will Junior actually take a supplement that was suggested on the Internet? Compliance issues are a major challenge among our patients at The Child Development Center. Children are usually very picky eaters, sometimes refusing to chew, or preferring to smell everything, and not likely to ingest another yucky concoction. The ‘best’ fish oil won’t work if your child won’t take it, so a better tasting, less expensive, well-tolerated version may be the better choice.

Costs can spiral out of control. Each affected child may take between 5 to 10 supplements/medications per day, often exceeding $300 per month. And, of course, it is not covered by health insurance. Can you really afford to give another remedy on the advice of a friend-of-a-friend-of-a-person-whose-kid-has-autism?

Complicated, expensive therapies are compelling. Parents who seek experimental, untested, and/or potentially dangerous regimens are not foolish or ignorant, they are frustrated and desperate. For the most part, unless your family has unlimited resources, your money is better spent on proven, conventional behavioral interventions.

Parents may not be aware whether item #2 on the list of supplements is actually amplifying item # 7, or nullifying. For example, notwithstanding manufacturers’ claims, digestive enzymes digest stuff. Probiotics, proteins, etc. work best when they reach their intended destination in the natural state, so some products must be given individually.

Home therapies do not take the place of a thorough medical workup by an experienced practitioner who demonstrates reproducible results. Vitamin D, e.g., is great, but high doses could be harmful. The child’s blood count, liver, kidneys, thyroid, and other metabolic functioning should be documented and followed when a fragile toddler is the recipient of pharmaceuticals of any kind, with potentially serious effects.

Conclusion
Rather than eschewing novel treatments, I am eager to become educated about patients’ reactions – positive and negative – so that my advice applies to each individual child, at a particular point in their recovery, targeted at the therapies that will take the patient to the next level toward independent function.

I have learned useful techniques from naturopathic, holistic, Ayurvedic, and just plain Mom-medicine. Epsom salt baths, attention to nutrition, probiotics, essential oils, and the like, can be quite helpful. However if you are experiencing a 2 year-old who is not making eye contact, a 3 year-old who doesn’t speak, or a 4 year-old who is banging her head, sooner or later you will get the most tangible results from a practitioner who can accurately identify, and treat, such serious challenges.

About regimens and treatments that some might say, “How can it hurt?” the most important lost resource may be time.

Fundraising for Autism Research

Monday, October 23rd, 2017

(Too) many years ago, our Regional Intensive Care Unit had the honor of hosting Audrey Hepburn. At that time, we were knee-deep in cocaine exposed babies, and the entourage stopped at the incubator of a 1 pound infant who was barely visible among the wires and tubes.

I asked the famous actress, 1992 recipient of The Presidential Medal of Freedom, and tireless worker for UNICEF, if she minded that the costs of this single child’s care were expected to exceed $1 million. “Wouldn’t you be able to feed an entire village somewhere?” Her surprising answer was, “There’s enough money for both, if we care to spend it that way.”

Fast forward to a recent NYC fundraiser for Columbia Presbyterian’s Transplant Initiative. I complained to my beautiful and patient wife, Jackie, that autism doesn’t receive the same kind of attention as other medical condtions. Frankly, I was jealous. There is enough money for both, if we choose to spend it that way.

There are presently ~117,000 people requiring an organ transplant of some type. There are over 5 million people with autism. In the past several years, I have attended, and been struck by, similar begrudging feelings at benefits for the Michael J Fox Foundation for Parkinson’s Disease. Sure, it’s important to give people a ‘second chance’ at life. But, have the children who are most affected with ASD, and their families, had any real first opportunity at normalcy?

Look, I’m not trying to compare apples to oranges, but it seems that ASD should be appropriately considered as THE childhood epidemic of OUR time. A great deal more is needed by way of funding for useful investigations. I am honored to serve as a Board Member in our local Autism Society of America – Broward County, but research and medical issues are for other institutions.

Increased collaboration among national organizations, including Autism Speaks, Generation Rescue, Talk About Curing Autism Now, Autism Research Institute, The National Autism Association, and local CARD groups, can only strengthen awareness and support.

Autism is stuck in a century-old paradigm of psychological causation. Lately, parents are offered a genetic etiology that leaves them with little hope. Disparate theories and alternate interventions require evidence-based research. That includes adequate vaccine studies – among other ubiquitous toxins – to identify those infants at possible increased risk for untoward consequences.

Acknowledgement of the successes that doctors, such as myself, are experiencing every day, needs to be appropriately studied and documented. It seems that more funding might be directed toward our work, were it not for all of the controversies surrounding an autism label. Unity among the various interested parties to support ‘N of One‘ treatments may help us attain that goal. That way, more toddlers would have access to earlier medical interventions, as well as conventional therapy.

Columbia’s Transplant organization’s motto is “We don’t just practice medicine. We change it.” Practitioners who are at the forefront of effective autism diagnosis and treatment feel that way, as well.

When Mom and Dad Disagree About Autism Intervention

Sunday, October 15th, 2017

Undoubtedly, the most stressful challenge that any family might face is illness in their child. Even in cases where treatment is established, e.g. acute leukemia, there are bound to be differences of opinion about which doctor, or hospital will do the best job.

When it comes to ASD however, even the diagnosis can remain in doubt. One parent, or a sibling, may have experienced “the same” symptoms, such as late speech or inattentiveness. So, the ‘watchful waiting’ advice from the pediatrician appears most prudent. A neurologist who observed your toddler for 70 seconds may have declared a normal – or dire – outcome. Who to believe? Then, there is the conventional medical community that continues to debate the condition and the ability of earlier recognition to alter the course.

Differences about the diagnosis
 Take an online questionnaire, such as the Autism Treatment Evaluation Checklist or Modified Autism Checklist for Toddlers. Although ‘experts’ may deem such surveying as ineffective, it is certainly a start. And, parents shouldn’t bother quibbling over whether Junior should get a “1” or “2” for any single answer. Observing suspicious tendencies may help convince a spouse, or doctor, that there could be real reason for concern.

 Listen to the advice of grandma or grandpa. They have raised other children, even if it was a different century. Try not to listen to advisors who have no responsibility for their opinions.

 If a therapist is already involved, ask what signs and symptoms they view as worrisome. It’s not their labels that you seek, but another professional opinion regarding suspect behavior.

 Don’t be afraid to ask the child’s teacher, or the school personnel, what they think might be different about your child. Academic staff are frequently the first to postulate a problem.

 Take videos of unusual behaviors. One parent may simply not have gotten to spend enough time to have observed a ‘stim’, or recognize activity as repetitive.

 Have the child evaluated by a trained professional. Then, insist on a precise diagnosis. Children with sensory processing, executive functioning disorder, and speech apraxia have autism.

Discrepancies about the next steps
So much inertia must be overcome to establish that first step, simply embracing traditional treatments can offer parents glimpses of improved development. OT (occupational therapy), PT (physical therapy), S&L (speech and language therapy), and ABA (behavioral therapies), must be given the time to reveal results.

At the very least, however, ask your pediatrician to make sure to perform some basic laboratory testing. Even if there is disagreement, how could it hurt to obtain a complete blood count, evaluation of nutritional status (calcium, magnesium, vitamin D, iron), and thyroid screening?

Opposition about biomedical interventions
Although the pull of the Internet is great, children are best served by contacting a physician who is involved in The Medical Academy of Pediatric Special Needs. Unfortunately, there are too few to adequately staff the burgeoning number of affected children, but, we practice state-of-the-art, evidence-based medical intervention.

By continuing our education within such a medical fellowship, and achieving a thorough knowledge of the science that appears in peer-reviewed journals, doctors have developed protocols that have been proven safe and effective. Although the costs are rarely adequately covered by medical insurance, the investment will last a lifetime. Literally.

Conclusion
Denial and delay are not in your child’s best interests. Doctors who are satisfied with the status quo will achieve that end. Modern thinking is that earlier intervention results in improved outcomes.

At The Child Development Center, our experienced and knowledgeable Practice Manager, Karen, has observed that families who seem to have the most success, “May not be on the same page, but are at least in the same book!”

Early Experience with Helminth Therapy in Autism Treatment

Sunday, September 3rd, 2017

Gastrointestinal issues are one of the most common co-morbidities in patients who experience signs and symptoms of ASD. Treatments have included prebiotics, probiotics, antioxidants, cathartics, detoxifying agents, antibiotics, antifungals, human fecal materials, and others. Singly, and in combination, they have resulted in sometimes limited success and frequent relapses.

Furthermore, patients with ASD suffer a variety of allergic and autoimmune conditions, including rheumatoid arthritis, food sensitivities, asthma, and eczema.

Filling that therapeutic void is the coming world of helminths. It is a unique form of gastrointestinal/allergy treatment, now being popularized by a highly respected pediatrician, Dr. Sidney Baker. At The Child Development Center and other Developmental Clinics, treatment with HDC is becoming an additional strategy for patients with autism.

What is helminth therapy?
According to the NCBI, it is “The treatment of immune system diseases by deliberate infestation with helminths. This therapy is partly based on the HYGIENE HYPOTHESIS which states that the absence of parasites increases immune dysregulation because of the lack of stimulation of REGULATORY T-CELLS.”

As researched and reported early in this century in Science, “The induction of a robust anti-inflammatory regulatory network by persistent immune challenge offers a unifying explanation for the observed inverse association of many infections with allergic disorders.”

As unappealing as it may seem, the rat tapeworm, Hymenolepis diminuta cysticerci (HDC), is considered a mutualist, providing benefit to the host without causing longterm harm. Out-of-the-box thinking by a few functional medicine doctors has taken the following course:

Chronic illness is an expression of autoimmunity
Gut problems and allergy in autism are a form of chronic illness and autoimmunity
HDC interferes with autoimmunity
Provide HDC for chronic illness, including autism

The Protocol
In our practice, an email is sent with the parent order form, directions explaining how to administer and store the HDC upon arrival, as well as some background information. I send a request and a summary of the medical history. After reading all of the information provided, the parents contact Dr. Baker, and the product is sent to the home.

How to take the product?
Patients take them by swallowing the supplied liquid (the organisms are barely visible), or adding it to another drink. The Primobiotics dose is 1-60 HDCs, given every 1-4 weeks. The usual plan is to start with a dose of five HDCs – fewer in young children. It may take up to 6 weeks to see positive indicators and six months to fully determine that it hasn’t helped. When found helpful, the length of treatment has yet to be determined.

What are the costs?
The costs (directly from the company) are $100 for 1–10, and an additional $25 for each additional 10. The maximum charge is $175 for 40 HDC. Above that there is no additional increase in charge. Shipping is usually $35-65 but for Western US and Canada, it may be $80-100.

What are the downsides?
Constipation should be taken care of before initiating the use of HDCs. There may be some digestive upset with mild abdominal discomfort and some changes in bowel movements. Hyperactivity or insomnia lasting for a day or two are experienced by less than half of recipients.

If, after the first dose there are no positive or negative effects, the dose is increased as the optimal dose is established. Some individuals may show indications that a dose is ‘too much’ – with a more robust digestive discomfort or hyperactivity/insomnia than is usually felt as part of the initial response, in which case the dose is reduced to the minimal number.

What if a worm doesn’t pass?
According to Dr. Baker, a worm ‘sticking’ is a rare and benign event that can be treated with a dose or two of appropriate medicine.

Discussion
Note that HDC is not an autism ‘cure’. Rather, it can be useful as a treatment for the myriad of co-morbid conditions that can cause signs and symptoms related to ASD. Perhaps that is why Dr. Baker reports a ~50% success rate, after recommending this therapy to nearly all of his chronically ill patients. “What’s the alternative?” he would ask.

Though he eschews fearlessness about his willingness to offer advice, Dr. Baker has assumed a significant amount of responsibility in this endeavor; from cultivating the critters, to teaching others how to breed them, to sending out his own ‘farm-fresh little dudes’. He has personally answered emails, and he even called one of our parents who had concerns.

Interested practitioners are working together to educate and gather experience, in order to optimize this intervention. Specific probiotics are indicated, as well as evaluating progress, and even examining  unusual stools that document the gut ‘reset’. For many, the question will be, “What to discontinue first?”

Conclusion
Doctors who have assumed the challenge of treating patients with autism must remain open to all treatments, and recognize that it is the PATIENT who we are treating, not a specific disease. Some interventions, like GcMAF, were helpful, but are no longer available. Others, like antifungals and antioxidants, have taken time, and we’ve gotten pretty good.

Our patients have been satisfied with the service. Within a couple of months, two of five children have already shown positive responses, with improved behavior and communication. Treatment appears to be a safe, effective and reasonably priced way to assist patients with significant GI and / or allergic challenges.

Published recently in the New York Times:
Too Clean for Our Children’s Good?

For those who wish to read more and utilize another HDC source, here is BiomeRestoration.com

Return of the Yeast Issue

Sunday, August 6th, 2017

It has become a ‘given’ lately, in the ASD-alternative-medicine world, that successful treatment protocols often involve antifungal medications. So, when the Child Development Center offers our advice, too often we assume that parents have a thorough knowledge of this common complication in patients with autism.

What is the evidence for this form of medical intervention for ASD?
TheAutismDoctor.com has presented a variety of stories about how overgrowth of yeast can interfere with typical development:

In a two part series, A Yeast Story, 6 years ago, The Autism Yeast Connection highlighted the mechanism by which the critters take over the intestinal flora. The symptoms appear to start with increased ‘fog’ (not attending), then progress to include increase in ‘stimming’, sensory processing disorders, silly behaviors, regression in speech, disturbed sleep, increased ‘OCDs’, and reduced gastrointestinal health.

In the second part of that piece, I offered my view that, the major cause of fungal overgrowth appears to be more of a poorly digested food problem than simple sugars (not to be confused with the observation that too much sugar heightens hyperactive behaviors). However, the overuse and ubiquitous use of antibiotics must be an overwhelming contributor to this phenomenon.

Get Your Child Off the Couch and Out of the House pointed out how constipation leads to slowing down the entire body ecosystem, making outdoor play a chore. Less activity can further deteriorate the situation. Warm, wet, dark, stationary places (a non-motile gut) make an excellent home for yeast, which robs nutrition, alters the immune system, and creates toxic byproducts. In addition to probiotics, healthier foods, and anti fungal preparations, adequate muscle activity will push the food along.

Poor motility in the smooth muscles in the gut that could lead to reflux, or constipation, and possible yeast overgrowth, was discussed in A Brief Discussion of Mitochondrial Function and Autism.

I have written about complicated treatments, such as Stem Cell infusions, Fecal Transplants or Hyperbaric Oxygen chambers, where patients can still benefit from the recognition and treatment of recurring signs and symptoms of yeast – the extreme therapy notwithstanding.

Even standard protocols, such as B12 ‘shots’ can go awry when fungus has overtaken the gastrointestinal tract, as discussed in When Methyl B12 Doesn’t Work for Autism.

Earlier this year, in The Challenge of Challenging Behaviors, I warned that disruptive, aggressive, or self-injurious behaviors first needed to be evaluated from a GI point of view, lest the patient end up on multiple anti-psychotic medications that merely mask the underlying problem.

‘Die-Off’ in Autism Treatment detailed the journey that ensues when pharmaceutical medications are administered to deter the fungus. Complications can be addressed with the judicious use of activated charcoal. Furthermore, the use of nystatin and saccharomyces boulardii may be considered, or needed, if liver function is not optimal. Plus, natural antifungals, probiotics, and probiotics can be of value for prevention.

The Chronicity of Autism, presented documentation of one family’s journey to a successful outcome, by paying very close attention to GI health, and treating yeast when the symptoms suggested.

My 2014 holiday salute to the condition concluded with, “Yeast in the G-I system is one of the few causes of the signs and symptoms of autism that CAN be successfully treated with safe and effective supplements, diet and medication. This is a great time to provide natural anti-fungals, such as apple cider vinegar, garlic oil, olive leaf, etc., to the extent that products are palatable and well tolerated.”

Our experience with antifungal treatment was documented in Anti-fungal Treatment for Autism? The conclusion was that medications can have serious side effects and drug interactions. Present practitioners should follow a written, rigorous protocol and document progress. Appropriate followup laboratory testing should be performed. Other sources of inflammation should be explored and addressed, as well. Under a physician’s care, with the parents’ full understanding and consent, within 2 or 3 short courses, a simple, oral, antifungal medication was well-tolerated, and effective in reducing many symptoms that are generally assumed to be ‘autistic’.

Conclusion
This list is provided to document our experience with thousands of patients. There is solid scientific and clinical evidence for those who are new to the diagnosis, or parents who wish to explore the possibilities that yeast may be affecting your child’s development,

The hyperlinks (and hyperlinks to hyperlinks) should help convince even the most skeptical of professionals that this is a safe, effective treatment for signs and symptoms associated with ASD.

Rerun: Autism Apraxia and the Oboe

Sunday, July 16th, 2017

Shortly after starting speech therapy, it is not uncommon for our parents to be informed by the professional that their child has speech apraxia. Here’s the thing, the child does not have autism AND an inability to produce words. In the vast majority of cases, it’s part of that child’s presentation of autism, not a separate diagnosis.

This story is my analogy for how this mysterious condition can be best understood:

I can’t play the oboe. I probably never will. But, if I wanted to, it would probably take, like, 6 months just to be able to produce a single note. Then, maybe after 1 year – if I practiced every day – I might be able to play Three Blind Mice. Poorly.

My brain did not come preprogrammed with instructions about the correct embouchure to play a double-reed instrument (or any wind instrument, for that matter). So, I would have to practice that movement of my lips. My lungs were never used to delivering short blasts to fine-tune output. I would have to practice that, also. Then, I would have to figure out some way to combine a number of physical feats at the same time in order to deliver that first squeak.

It wouldn’t matter how many times my teacher told me to play a song. It wouldn’t matter if she raised her voice and implored me to do a better job. Perhaps a different teacher would get me more motivated? I might get frustrated with my lack of ability and stop trying for a while. I could start making horrible sounds just to make something come out, and then the teacher would say that I’m not trying or I’m doing it wrong. Instructors would become very disappointed if I started to bang on surfaces with the oboe – just to make any sound come out.

That is exactly how it must feel for children with ASD who cannot speak. When a neuro-typical infant starts to babble and imitate words, it is because they already have human speech hard-wired into their cerebral cortex. Toddlers don’t think about, or really even practice speaking. It just comes.

Think how much more work it takes for a young child to let the caretaker know that they want juice, if they cannot speak. Infants simply cry and the parent offers a variety of choices until they hit on the correct one. Later, certain cries indicate a desire for food, not a toy. Without speech, a toddler pulls the adult to the refrigerator or opens it himself in order to communicate his wishes.

The child is not simply being lazy. It would be much easier to do it the way the typically-developing sibling does… “JUICE” or “Juice, please” or “Mommy, I want juice!” The parent who says “I know he can speak ’cause he does it when he wants to,” is missing the point. That is what makes the child normal – we all do what we can when we want to, to the extent that our abilities allow. The ASD child speaks when he absolutely must, and then only when every circuit is working correctly.

Likewise, for language to increase, pathways need to be laid down so that the activity can take place as part of a much more complex social environment and therefore more often and (hopefully) appropriately. Then, the electricity has to flow so that the circuit is completed and results in the correct sequence of events. It takes practice, desire, and an ideal set of circumstances. Many times, parents report that their child said some complex combination of words and ask, “Where did he/she learn that?” Well, they are apraxic, not deaf.

By getting a patient in the best physical condition, the routes can be laid down. By supplying enough cellular energy, the circuits fire. By supplying S&L, OT and ABA, the child gets to practice. Parent’s love and encouragement supplies the desire to try. That takes a great deal of work by all parties involved.

I will never play the oboe, but, thankfully, the majority of ASD patients eventually speak (in practice, the number is even higher because of the younger age of diagnosis and appropriate interventions). Of course, that is just one part of their complex story. The goal is not to play solo, but to be part of a symphony.

Screen Addiction Disorder?

Sunday, July 9th, 2017

Health professionals have coined a number of new-century terms in order to describe signs and symptoms that were previously unspecified. These have included, Sensory processing, Visual processing, Auditory processing, Executive functioning, Social anxiety, Oppositional Defiance, and Attention deficit – Hyperactivity disorders.

How About Screen Addiction Disorder?
It’s SAD.

Everyone, it seems, is glued to their gadget. We seek instant gratification about the latest Facebook post, email updates while at dinner, or even read and write texts while driving. These, and many more self-absorbed behaviors are magnified in autism.

The Child Development Center has treated a stream of youngsters who come in, balancing as many as 3 screens at the same time, in order to maintain self-control. In patients with ASD, repetitive behaviors and restricted interests are part of the fabric of their developmental disabilities. Why provide them with a tool that preys on their most serious weaknesses?

The two most common answers are 1) “It makes them happy,” and 2) “They are incredible with technology.”
1)  Kids don’t know what’s good for them, and 2) The software is great with the user, not the other way ’round. Even the youngest toddler can navigate a You Tube video or play Angry Birds.

Discussion 
Two recent NY Times op-ed stories got this discourse started. They were, First, Relax and Let Your Kids Indulge in TV, and Why Some Men Don’t Work: Video Games Have Gotten Really Good. Surely there is irony in these two stories appearing the same day?

The former opinion was written by an Australian mental health doctor and mother, who waxed nostalgic about the ‘good old days’, sitting around the TV with the fam. She wrote, “I find myself passing on to my children the addiction, at a time when this topic has become a focus of parental guilt and judgment.”

Wrong century, wrong technology.
“Family Ties” ≠ “Mortal Combat!” And, Phil Donahue ≠ Twitter.

The latter story was based on a publication in The National Bureau of Economic Research entitled, Leisure Luxuries and the Labor Supply of Young Men. The authors concluded that, “… innovations to gaming/recreational computing since 2004 explain on the order of half the increase in leisure for younger men, and predict a decline in market hours of 1.5 to 3.0 percent…”

The Times article quoted, “Adam Alter, a professor of marketing and psychology at New York University who studies digital addiction, highlighted the fact that, unlike TV shows or concerts, today’s video games don’t end.”

“Most forms of entertainment have some form of a stopping cue — signals that remind you that a certain act or episode is ending, like a commercial or a timer. Many video games don’t have them… They’re built to be endless or have long-range goals that we don’t like to abandon.” If this phenomenon is true for able-bodied young men, then this ought to be a cautionary tale for those who are even more susceptible.

I warned about this addiction previously. Repetitive viewing of videos and games does not promote imagination or socialization, which are core skills especially lacking in autism. Modern children spend little enough time outdoors, so a burning desire to get back to the iPad leaves athletic skills and exercise sorely neglected. Sound sleep suffers, as well.

Conclusion
If your child is neurotypical, the condition is problematic. The usual approaches to achieve balance can be successful (as long as the family isn’t experiencing the same syndrome). The author of the ‘TV is good’ piece claims to have found that ability to get her kids on nature walks and back home to watch informative documentaries.

Parents of children with ASD know this digital dilemma well. Reasoning, bribery, even physical punishment is fruitless. It takes hours of ABA to extinguish this seemingly obsessive-compulsive behavior.

This advice is offered to alert new parents, who may simply wish to entertain, or offer an early academic background. If the concern is that your child may suffer a ‘digital gap’, there will plenty of new iStuff coming out all of the time. It’s best to wait until there is a level of discipline and restraint.

We see evidence of Screen Addiction Disorder in all kinds of individuals, but it’s worse in patients with autism. It’s SAD. Treatment is difficult, prevention is the best strategy.

Sleeping Sickness Medicine for Autism?

Tuesday, June 6th, 2017

‘Game-changer for autism’:
100-year-old drug reverses symptoms, study finds

Recent headlines, such as those, have stimulated the submission of a fair number of emails that went something like this…

Dear Dr. Udell,
I saw this study on the internet.
I would like to try this medicine for my child. What do you think?

Dear Parents,
After further consideration, here are my observations about this serious pharmaceutical intervention:

1. What is suramin?
It is a chemical that was invented to cure parasitic diseases. The dosage used for autism has been significantly reduced.

2. What was the actual paper?
This treatment is based on a unique approach to autism, and it represents a preliminary test of whether this drug might be safe and effective for common signs and symptoms of this emerging epidemic.

There were 5 patients in each group of 4-17 year-old boys, who were either given a single dose of the medication, or placebo. Outcomes were measured in the first week, and 6 weeks later. There were generalized improvements in many areas. As blood levels decreased over time, so did some advances. Surprisingly, progress was seen in speech apraxia, even in 2 older children.

The drug was well-tolerated, except for “a short-lived, self-limiting rash.”

3. How does the drug work?
The authors explained, “One approach to addressing the challenge of many etiologies of ASD is to define a common pathophysiology that can contribute to the core diagnostic symptoms, regardless of the initiating genetic and environmental triggers. We hypothesized that there is a conserved cellular response to metabolic perturbation or danger that is shared by all children with ASD… in mice produced a treatable metabolic syndrome…” The administration of a medicine that adjusts for an alteration in RNA and DNA manufacture, and energy production, “…corrected both the behavioral and metabolic features of these genetic and environmental mouse models of ASD.”

4.  How is it administered?
INTRAVENOUS PUSH. From the results of this research, it would appear that doses may be required every ? 1-2 months for ?? months? This is not for the faint of heart.

5. How much would it cost?
The drug, alone, appears to cost less than $50, depending on the source. If it is found to be successful, let’s see how the powers-that-be jack up the price. Plus, there would be additional charges of IV administration and followup testing.

6. What labs must be followed?
That remains to be discovered with increasing experience and research.

7. What are the long term effects?
Ditto #6.

Conclusion
This medicine may simply share many of the same properties as the myriad of other gut-altering treatments. Positive results require frequent administration, and ‘tolerance’ to therapy sometimes makes them less effective.

However, the use of suramin is based on a different paradigm (how cells respond to stress) that takes into account the diversity of possible causes of autism, both environmental and genetic. That such a new direction in research is being explored is exciting and hopeful.

For now, families need to continue to be patient. Especially in children, interventions that are so invasive and potentially harmful require more study and followup, in order for parents to make a truly informed decision.

Parents Helping Other Parents Battling Autism and ADHD

Sunday, May 21st, 2017

The First Warrior Parent
More than 5 decades ago, Dr. Bernard Rimland observed his son’s unusual development, and was determined to understand the cause and treatment of a rare condition called autism. So began a more modern view of the condition, which addressed the tide of children who began appearing with similar challenges. His work started a movement that has ultimately morphed into The Medical Academy of Pediatric Special Needs.

At that time, the predominant cause of autism, promulgated by self-taught psychologist and media darling, Bruno Bettleheim, was the ‘refrigeratory mom’ theory. His experiences in Nazi concentration camps led him to believe that a lack of love in their environment could cause a child to turn off the road to typical human development. Dr. Rimland said, “No way,” and along with other like-minded professionals created biomedical workups with useful interventions.

It took another three decades until Jenny McCarthy popularized that viewpoint, with her outspoken experiences, fighting the medical profession to get proper care for her son. What progress has science made since that battle? Only a few brave professional parent practitioners, such as Drs. Dan Rossignol, Julie Buckley, Anju Usman and Nancy O’Hara, have taken up the slack.

Advancing the Combat
So, in that vacuum has arisen a number of other parent warriors. These are intelligent, dedicated, caring individuals, who have researched the data and applied various treatments to their children, often, trying it out on themselves first. They have observed various amounts of success, depending on their child’s specific difficulties. Some achieve remarkable results, and wish to pay it forward.

One day recently, I got into an interesting email discussion about Transcranial, Red/Near-Infrared Light-Emitting Diode Therapy. That determined Dad found a difference in his own clarity by moving the light from front to back. Wasn’t that OK to try on his child?

Just a few hours later, I had a conversation with a Mom who has been witnessing positive results using Ionized water. Her child was making significant progress, and this generous lady wanted to offer the product – for free – to other parents. “We can help so many more!”

One father has observed improvement with a particular form of Acai berry. Other parents have found good results with MMS, CBD, THC+CBD, Sauna, and Essential Oils, among other treatments.

Few Victors, So Far
I was telling this story to an experienced Mom, and she declared, “See how desperate we are!” Those who vilify Dr. Andrew Wakefield’s heresy over the possible danger of some childhood vaccination protocols ought to consider Dr. Leo Kanner’s role 80 years ago, which established a misguided psychological point of view.

Modern medicine has implicated genetic problems, but doctors fail to order appropriate testing; brain abnormalities, without getting diagnostic labs; and environmental factors, yet there exists little research to establish therapeutic strategies.

New Strategies
The reality is that, both professionals and parents, are experimenting on the children. Without proper studies we cannot know eventual outcomes, of even the most ‘benign’ interventions. We are now learning about conditions that are not only carried from one generation to the next, but 2 generations away. Real science takes time.

A common factor among many of the treatments that I encounter is some form of gut adjustment. Many of the specific supplements help while they are being administered and do not appear to be toxic. However, much of the research has been documented only in other species or conditions, and requires additional scrutiny.

Advice to Medics
Parents, who see progress in their own child, then in others, simply want to guide more families in the same boat. But, you are all NOT in the same boat. Some kids are older or younger, some girls or boys, others with metabolic, genetic, immunologic, gut conditions and various combinations that are different from child to child. SAFE is not SAFE for all, as we have learned from the vaccination dogma.

Even those strategies that work may require additional patient evaluation and testing. If a parent sees untoward effects, watch closely for such important signs, such as dehydration or an extensive rash. By discussing these interventions with a functional doctor, a child stands the best chance for advancement.

‘Alternative medicine’ strives to be inclusive, but the response by professionals to adopt non-conventional strategies may take a bit longer to take hold, as evidence becomes more clear. We are fighting on the same side.

An Autism Doctor’s Earliest Signs

Sunday, April 30th, 2017

In spite of an ever-increasing number of atypically developing children, and in the face of a plethora of evidence demonstrating that early intervention results in quicker resolution of problems, pediatricians continue to appear to be more concerned about whether the vaccination schedule is current.

Every day, parents relate stories about a doctor who said, “The child is NOT autistic. He has sensory processing disorder and speech apraxia.””Give it some time,” seems to be a common mantra. Are universities teaching this wait-and-see strategy?

What other medical condition is dealt with in such a fashion? No abnormal mole is considered too tiny to dissect. A small amount of blood coming from any orifice warrants the swiftest investigation. Furthermore, it is generally espoused that early identification and treatment is the best remedial policy, stimulating the appearance of screening programs for cancer and heart disease, for example.

I have examined thousands of high-risk infants, and the younger siblings of many ASD patients over the years. This is my top ten list of physical signs in the first 18 months that should raise suspicion, and demand answers, rather than a dismissive pat on the head, accompanied by a professional’s proclamation, “I wouldn’t worry!”

Your mother thinks that the baby, “… isn’t doing alright.”

There is an inability to successfully breastfeed, especially in highly motived or experienced women. La Leche League has promoted and instructed us all in better ways to get the milk flowing, but a new era of poor suck on the side of the infant has emerged. This could either be the initial sign of a problem, and/or part of a vicious cycle leading to unusual behaviors.

A child who exhibits gastro-esophageal reflux (heartburn), persistent colic, inconsolable crying, and/or severely interrupted sleep patterns may be displaying a red flag. Of course, mild cases could be due to individuality, parental indulgence or ‘milk intolerance’. In this century, think: a condition that deserves investigation, and thoughtful intervention. Prescribing Prevacid is not a workup.

Signs of poor core tone may include a twisted neck, flat head, or delays in motor milestones. In the previous century, doctors were worried about cerebral palsy. Now, it should be considered as a possible earliest sign of autism.

Likewise, the absence of crawling, or persistent ‘army crawl’ has been a documented occurrence in infants who later show ASD.

A breast-fed infant who poops less than twice per day, or a formula fed child who ‘goes’ more than 4 times should raise concern. Unusual stooling often indicates abnormal gut flora, causing direct inflammation and/or additional bacterial changes, and possibly further alters nutrition.

A very early ear infection, or any recurrent medical condition is notable. At the beginning of my 40-year experience with at-risk children, antibiotic use in the first year of life was only a fraction of the exposure that occurs in this century. Investigation of immune competence has everything to do with the modern epidemic, I am certain.

The likelihood of ‘food allergy’ in the first year of life is actually very low. When a pediatrician assigns noisy breathing or fussiness to this presumed ‘diagnosis’, beware that they are not practicing real evidence-based medicine.

After the first few months, infants will look at faces, follow, and later, begin to imitate. If social interactions, such as rolling a ball back-and-forth, do not emerge – and certainly if they disappear – the child needs to have a thorough medical evaluation.

Speech that begins, but does not progress is a worry. When language fades, it is never normal. Period.

Conclusion
Any of these signs could just be a benign variation of normal development. A few are reason for real concern, exploration, and early intervention.

I have presented similar information in previous posts. In addition to these physical signs, I have written about other high-risk situations, and associated factors that assist a physician in ascertaining a specific diagnosis. It sometimes helps to provide regular updates for parents to show their child’s doctor, in order to get things moving on the right track.

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Brian D. Udell MD
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