Posts Tagged ‘ASD advise’

Ten Must-Have Back-to-School Autism Supplies

Friday, August 15th, 2014

Forget pencils and notebooks. Here is my take on the most important items that children who exhibit signs and symptoms of ASD and ADHD really need to make it through the coming season:

10. A weighted vest, and other such functional products. Neural systems are on overload, so any/all sensory reducing strategies need to be dusted off and utilized. My son, a Special Ed teacher, reports that one of his favorites is Chewelry.

9. A special request for an IEP meeting to review everything agreed upon in the last IEP, and how the child has progressed.

8. A written, visible schedule. The previous school year’s busy agenda needs a re-boot. With non-preferred activities about to consume more time, acceptance and self-control become paramount, so clear expectations are a good start.

7. Sleep. Likewise, the body’s internal rhythms have gone on a summer vacation. Warm epsom salt baths are great to pave the way at bedtime. Chamomile is fine, and more difficult problems may be ameliorated with the administration of melatonin.

6. Supplements and medications. Children with ADHD are often given drug ‘vacations’ during the break. Appropriate dosing and timing may have changed as the summer progressed, so try getting things started a week or so early.

5. Healthy food. Unfortunately, schools do not often assist in this endeavor. If junior has been slipping off the diet, or eating too much junk, get back to basics.

4. An app to disable the iPhone. Really. The time spent on iPads, computers and video games needs to become severely limited.

3. Playtime. It is very difficult to transition from a season of freedom to one of academic drudgery and endless therapy sessions. Going to the park, ballgames, and other outdoor athletic activities is a basic part of being any kid. Even though physical activity is not as preferable as that smartphone, try to make it happen.

2. Soap. Stress cleanliness and get the child into the habit of washing their hands. To the extent that the school will cooperate, tissue dispensers, hand sanitizers and bathroom etiquette could provide some barrier to the onslaught of cooties.

1. A big dose of time and patience. As students fit into the new school year, so do teachers, administrators and other professionals need time to understand each child’s strengths and weaknesses.

Everyone remembers that first day back at school; anxiety, fear, excitation, and dread. The assault on the senses, social stresses and academic expectations are an even more tremendous hurdle for students with challenges in those very areas.

Most of all, parents’ love and understanding gets us all through those first inglorious days and weeks.

Beating Autism?

Saturday, August 9th, 2014

When the New York Times publishes stories about autism, my world is usually alerted. A recent series included, “Kids Who Beat Autism, Kids Who Don’t…, Behind the Scenes…, Questions…,” and Videos; so people want to know, “What do you think, Dr. Udell?”

In short, it is my opinion that the series misses the point, on many levels.

Do we really ‘beat’ illness or injury? Appropriate evaluation and intervention is the accepted scientific approach. According to this article, ASD does not require any medical treatment. “It’s genetic… can’t be fixed… over- or mis- diagnosed…, brain disorder…” and can only be affected by the traditional person-to-person therapies.

The lead article introduces two similar, affected young children who go through Behavioral Analysis. “Jackie did everything for him,” L. told me, her voice filled with angst. “Everything. She tried just as hard as I did. She hired the same people, did the same work. . . . ” Her voice trailed off. She was sure that the behavioral therapy had allowed her to reclaim her son, but she could not understand why it had not done the same for Matthew.”

The non-improving child had “chronic ear infections… threw up daily for a year… but the doctor assured them that there wasn’t anything physically wrong with him.” Even if the cause of the vomiting was ‘benign’ (ridiculous), the resulting nutritional abnormalities could most certainly have profound downstream behavioral effects. Furthermore, the medical consequences of frequent antibiotic administration probably won’t respond to simpler treatments, such as “… sensory integration, megadose vitamins, therapeutic horseback riding, a vile-tasting powder,” as was acerbically offered as autism treatment.
Nutritional status and ill-health are not even a consideration and recovery is basically presented as a enigmatic rarity.

Even when significant improvement ensues, “Fein’s study found that formerly autistic people often have residual symptoms, at least initially; these include social awkwardness, attention deficit hyperactivity disorder, repetitive movement, mild perseverative interests and subtle difficulties in explaining cause and effect.” Most parents would be quite satisfied with the minor challenges that many of today’s neuro-typical individuals suffer.

Finally, before falling into simplistic anecdotes about those who ‘beat’ ASD, the story takes a wild turn to discuss patients who don’t consider their condition an illness, or that it requires intervention. Their situation, some feel, is comparable to how homosexuality was previously viewed. Notwithstanding their present opinion, when such individuals were toddlers, their parents probably sought medical assistance.

The Kids Who Don’t story begins, “The other day a stranger called our house, out of the blue, to discuss my son… he wanted to know if I’d heard about a treatment that was getting remarkable results. Something to do with ocean water, he explained.”
Other examples in the text included, HBOT and GF/CF diet. They all get lumped together. The Wakefield Effect.

The studies cited in the cover story make it clear the reasons some children recover and others don’t are not only inexplicable, they’re inexplicably random, an incalculable mix of early intervention, hard work and luck of the draw. There was no mention of an addressable medical disorder.

Bottom line:
Do readers really become enlightened by this collection, or more confused? Autism Spectrum Disorder represents a variety of developmental abnormalities, presenting in the first few years, from which children may recover completely, partially, functionally, or very little. People don’t ‘beat’ a car accident, diabetes, or asthma.

It is great that the epidemic is getting additional attention that will hopefully lead to increased funding for research that will lead to successful treatment(s). Scientifically addressing system disorders, such as nutritional deficiencies, G-I health and allergic inflammation, and combining them with traditional therapies mentioned in the article, will demonstrate that recovery is not a miracle, just a mystery because of our present level of (mis-) understanding.

In the meantime, let’s worry about treating, not beating, this devastating problem.

The Law, Antibiotics and Autism

Sunday, August 3rd, 2014

The Case:
A U.S. court ruled that the FDA is correct to continue to allow the administration of antibiotics to feed animals – even if they aren’t sick.
Argued: February 8, 2013 Decided: July 24, 2014

The Judges:
Robert Katzmann, Chief Judge, (has top notch credentials, and wrote the minority opinion.)
Gerard Lynch, Circuit Judge, (wrote 2-1 majority opinion). More about him later.
Katherine Forrest, District Judge, (a really rich, “celebrated litigatrix“).

The plaintiffs:
Natural Resources Defense Council - “One of the nation’s most powerful environmental groups… A credible and forceful advocate for stringent environmental protection.”
Center for Science in the Public Interest - Founded by 3 “scientists, CSPI carved out a niche as the organized voice… on nutrition, food safety, health and other issues… to educate the public, advocate government policies that are consistent with scientific evidence on health and environmental issues, and counter industry’s powerful influence on public opinion and public policies.”
Food Animal Concerns Trust – “Mission… is to improve the welfare of farm animals; address public health problems such as the safety of meat, milk, and eggs; broaden opportunities for family farmers; and reduce environmental pollution.”
Public Citizen, Inc. - “… serves as the people’s voice in the nation’s capital… To ensure that all citizens are represented in the halls of power.”
Union of Concerned Scientists – “puts rigorous, independent science to work to solve our planet’s most pressing problems. Joining with citizens across the country, we combine technical analysis and effective advocacy to create innovative, practical solutions for a healthy, safe, and sustainable future.”

The defendants:
Margaret Hamburg, commissioner of FDA. She is a Harvard-trained medical doctor, and appears to be a strong consumer advocate.
Bernadette Dunham, Director - Center for Veterinary Medicine. She was a clinician, professor, and has served as an advisor to several veterinary panels.
Kathleen Sebelius, Secretary of HHS, who took heat for the Obamacare Website debacle.

The Issue:
A lower court had decided that the FDA should have hearings about antibiotic use in animal feed. This challenge, brought by the FDA, was that they didn’t need to review the issue.

The Ruling:
The FDA won.
Rather than considering antibiotics in the feed as a public health hazard, Judge Lynch (good name) focused his ruling on “… a syntactically awkward variation that leaves the intended sequence ambiguous.” The Catch 22 is whether the drug can be withdrawn if it is thought to be unsafe, but it can’t be declared so until there is a hearing, which the FDA is not required to do.
The explanation contains 10 pages that document scientists’ concern about antibiotics in the animal feed. It is followed by 55 pages that explain why the ruling by the previous court was incorrect. “In an ideal world, Congress would have written a statute that clearly selects between one of these two possible readings. But as the statutory language is ambiguous, we must do our best to determine which of these two meanings Congress intended to convey.”

Discussion:
I asked former Florida Assistant Attorney General, Mr. Hugh Keough , about this case. “The dissent was by the Chief Judge of the District… Interesting discussion about antibiotics especially after all I’ve read from you about over prescription of antibiotics…”

“Indeed, the FDA has consistently reaffirmed that using low doses of antibiotics on healthy livestock to promote growth could accelerate the development of antibiotic‐resistant bacteria, causing “a mounting public health problem of global significance.”

The “decision allows the FDA to openly declare that a particular animal drug is unsafe, but then refuse to withdraw approval of that drug. It also gives the agency discretion to effectively ignore a public petition asking it to withdraw approval from an unsafe drug.” (Dissent).
Mr. Keough exclaimed, “17 Years ago the World Health Organization recommended ceasing! Uh, is it time to go vegetarian?”

Conclusions:
The plaintiff’s issue was the emergence of resistant strains of bacteria. However, there may be profound, as-yet undiscovered effects. Somehow, can’t the FDA see it’s way to erring on the side of caution?

In 1999, the Journal of Pediatrics, published a study documenting, “Unrecognized gastrointestinal disorders, especially reflux esophagitis and disaccharide malabsorption, may contribute to the behavioral problems of the non-verbal autistic patients.” If you don’t think that autism is an epidemic, and you don’t consider that childhood development could be affected by the overuse of antibiotics, then you wouldn’t ever know whether antibiotics in our food is a threat.

 Given this decision, it’s going to be a while until any change is made in this area.

 Don’t allow your doctor to prescribe antibiotics for every little illness, and don’t beg for them, either.

 Take strong probiotics – lots of colonies, with varied strains.

 Try to eat as ‘organic’ as possible (given that they are telling us the truth about ‘organic’).

 If we want better oversight, we should let our government know.

Smartphone Rules for Autism

Sunday, July 27th, 2014

There are a multitude of programs designed to engage, and hopefully enlighten communication-challenged youngsters. A great place to start is Autism Speaks’ Autism Apps webpage. That site contains a preferences filter, research ratings, and nearly 600 choices, as of this story.

The most affected and youngest patients with ASD seem to easily learn to navigate to their favorite game or YouTube video. Their facility in this arena frequently exceeds neuro-typical peers.

Since the landscape changes so quickly, specific programs are really not the issue. We have observed a new phenomenon of persistent play in developmentally delayed children who have easy access to their parents’ iPads, iPhones, etc.

Here are some of the issues that parents might consider when the child grabs for that partially broken, heavily armored, totally smeared and nearly unreadable device:

Even 1-year-olds are able to navigate the system. Parents should make sure that children are not merely doing visual-auditory stimming. What appears so cute, at first, can become a major annoyance. For some, just the credits of a favorite video or a certain song may seem quite fascinating. That is just a digital version of watching wheels, or a ceiling fan, spin. It’s not really play, and the time spent with this entertainment should be kept to a minimum.

Metabolic abnormalities found in our patients include a number of nutritional deficiencies. Vitamin D activation comes from the sun, not an iPad screen. Children must go outdoors and exercise. As old-fashioned and paternalistic as that aphorism sounds, it should be heeded, if parents have a sincere desire to help their children enjoy good health.

Try to avoid allowing such a compelling device to become the babysitter. With all of the variety, every child can find one or more apps that tickles their fancy. Busy parents may see the activity as a short break in their day – time to cook, take care of the other kids, or just relax. Unless the child is moved to another endeavor, the pattern could become a preferred, fixed, repetitive action that is difficult to manage.

Watching a small variety of videos, or various games on a device is still playing on the ‘pad. A core deficiency in autism is the existence of a narrow range of interests, so therapies should be targeted at promoting a diversity of experiences.

Apps that encourage learning basic concepts, such as number, color, letter and word recognition, can be a great educational aid. Once those skills are mastered, communication, starting with pointing, and skills that lead to sharing would be ideal.

The ultimate goal as toddlers mature is to be able to learn in a classroom with human teachers and classmates. Electronic programs can help prepare kids for the academic environment, but do the stated gains of any app promote the skills needed to succeed in school; such as, attending to the teacher, following verbal directions, and playing with other children?

Take advantage of this learning opportunity. Help your youngsters to get some socialization out of their digital experience. Join them as they master the games, and try to work on understanding how the app is somehow connecting to your children’s brains.

A final word of advice, then… don’t let the smartphone rule.

Probiotics for Autism

Sunday, July 20th, 2014

One of the most effective treatments that MAPS doctors utilize to address the signs and symptoms of autism is probiotic supplementation.

What they are
Fermented foods, such as cheese, yogurt and kefir, for example, contain microbes. Over 100 years ago, researchers at the Pasteur Institute discovered the role of gut bacteria and demonstrated their importance to proper immune system functioning, as well as digestion.

In the second half of the 20th century, as antibiotics became popular, the simpler, more natural probiotics took a back seat. The overuse of prescription medication and routine use of genetically modified foods has altered a symbiotic relationship that existed since the earliest humans.

The term is now used to describe proprietary microorganisms (bacteria, fungus) that are ingested to help create a healthy mix of G-I flora.

What they do
The bacteria inside our gut outnumber the cells in the rest of our body. The modern term “microbiome” describes the complicated interplay between those microorganisms and the various cells in our digestive environment. There are profound effects on the functioning of our immune and nervous system.

Altering this delicate relationship has downstream effects, such as chronic infections, auto-immunity (?self vs. non-self), nutritional deficiencies, food allergy, and digestion.

Probiotics offer the potential to re-invigorate a depleted microbiome and alter the downward spiral, resulting in better stool patterns, fewer infections, improved nutrition, less distraction and disrupted behavior.

What About Autism
Patients with ASD appear to represent a percentage of the population who are susceptible to interruptions in the microbiome. The association of the core signs and symptoms of autism with immune irregularities, abnormal digestion, chronic infections, antibiotic over-prescribing, nutritional deficiencies, distractibility, poor tone and developmental delay is conspicuous.

Probiotics have been a mainstay of biomedical treatment because they are reasonably priced, safe and effective.

Side effects
After initiating appropriate probiotic therapy the clinical course is variable. Some children have no apparent change, at first. Other patients seem to have 3 to 5 to 7 days of die-off, as healthier organisms vie for the food supply and toxins are released.

Diarrhea, constipation, flatulence, silly behavior, rashes, poor sleep, aggression and regression are possible symptoms in the earliest phase. When behaviors become too intense, (oral doses of ) activated charcoal can sometimes temporize, as the healthier bacteria take hold and survive.

After a variable amount of time (depending on the age of the child and the presence of G-I symptoms), most parents report a lifting of their child’s ‘fog’, improved eye contact, and the initiation of communication.

Which is the best one
There is a general belief that probiotics are ineffective because the microorganisms do not survive the trip all the way down the digestive system where they need to take up residence. The best way around this issue is to pick products with a very high density of cells. There are trillions of bacteria in the body, and it appears that many billions are required to do their job.

Likewise, the body contains a variety of bacterial types. Look for products that contain an assortment of healthy organisms. Biomedical protocols often include the use of Saccromyces, which are supposedly ‘healthy’ yeast. At The Child Development Center, there are many children who demonstrate anti-yeast antibodies, so that is only utilized in a pinch.

Conclusion
Addressing the HIV-AIDS epidemic improved medicine’s abilities to understand viruses and the immune system. So, too, is our increasing understanding about the mysteries of autism assisting in a better understanding of a variety of gastrointestinal and allergic disorders.

Autism – The Money Issue

Sunday, July 13th, 2014

While ‘expertscontinue to debate about the autism epidemic, parents are paying the price.

This week, the Journal of the American Medical Association published a study from the US and UK that documented a cost of (US$)1.4 million over a lifetime, if there was no intellectual disability. That’s seventeen thousand extra per child per year - 1/2  of the US median income. Add another 1 million dollars if mental problems persisted (46% in one study).’

Of course, I’m preaching to the choir here. Families are well aware of the financial burdens. The problem seems to be that the medical profession is clueless. Parents are told to get therapies that are very expensive, and even if they are ‘covered’ by insurance, the co-pays can be prohibitive. And, if the child fails to meet intellectual milestones? More therapy.

In 1987, Dr. Louvaas reported, “Follow-up data from an intensive, long-term experimental treatment group (n = 19) showed that 47% achieved normal intellectual and educational functioning, with normal-range IQ scores and successful first grade performance in public schools. Another 40% were mildly retarded and assigned to special classes for the language delayed, and only 10% were profoundly retarded and assigned to classes for the autistic/retarded. In contrast, only 2% of the control-group children (n = 40) achieved normal educational and intellectual functioning; 45% were mildly retarded and placed in language-delayed classes, and 53% were severely retarded and placed in autistic/retarded classes.

In 2010, Dr. Grenpeesheh, “… completed a study which found that 6 out of 14 severely autistic children who obtained treatment by CARD had fully recovered.That’s 43%. 

Regardless of the exact diagnosis, the reasons for increasing numbers, and questions about ‘recovery’, the lifetime costs of caring for more than half of the patients with ASD are considerable.

The commentary in that aforementioned issue of JAMA was entitled Autism – Moving Toward an Innovation and Investment Mindset. The Drexel University professors wrote, “…We wish to reflect further on the conceptual and measurement advances needed to reach a point where we can meaningfully link investments in services to life course outcomes…”

This is an indication that conventional medicine will be forced into evaluating the epidemic from the financial side, even as science fails to provide data supporting flawed theories. “… This accomplishment is especially remarkable given the challenge presented by a profound lack of infrastructure for routinely monitoring costs and outcomes in people with autism spectrum disorders.”

An important finding in the study was that the second highest cost of autism was lost productivity to family members who must care for an affected patient. That means that earlier diagnosis, with prevention of long-term disability, and the amelioration of intellectual disabilities, will have the greatest effect on decreasing costs.

I am not qualified to offer financial planning advice. There are experts on that side of the equation. Given the present state of our understanding about the cause(s) and useful autism treatment(s), such assistance in assuring your child’s future may prove valuable.

Protocols provided by MAPS physicians are certain to impact these tremendous expenses. At The Child Development Center, we have been very successful at achieving neuro-typical educational status by 1st to 3rd grade in the majority of infants and toddlers. That is a tall statement to make, and it is not offered lightly. Biomedical protocols involve a great deal of work by the families and counseling by the staff. Traditional therapies, such as behavioral, physical, occupational, and speech are a necessary accompaniment to assure improvement.

As noted in the editorial, “We need to recognize innovations that are already occurring in community settings and establish ways to learn from them about what works for whom. Accumulating practice-based evidence will require mutually beneficial partnerships between researchers and community health care… This approach would foster active learning from experience.

As in other medical conditions, such as hypertension-arteriosclerosis-heart disease or the HIV epidemic, a sizable cost savings may be the initial driving force to accurate diagnosis and effective treatment. If that is the impetus resulting in better medical care for autism, that’s OK, as well.

Autism Treatments – Natural or Artificial ?

Sunday, July 6th, 2014

The advice given by autism specialists is often subject to second opinions, by just about anyone and everyone. It is not the fault of families who seek more information, nor the doctors who are working to understand the situation.

The conventional medical community has been slow to respond to the epidemic (yes, Virginia, there is an epidemic), with very little information about precise diagnosis, etiology, treatment, or prevention. This has led to a situation in which anyone who even knows someone with ASD, saw a story on TV, the web, or has an affected child (improved or not) has advice. Also, the Internet is a sponge, soaking up stories consisting of unequal proportions of fact vs. folklore.

Diet
Children who test positive for antibodies against specific foods should avoid them. This will result in less inflammation, and therefore more energy for growth and development. The only remaining question should be whether or not there is improvement in some of the signs and symptoms of autism. Parents are a pretty good judge of this.
ASD patients who abstain from foods that lead to elevated levels of morphine due to the incomplete digestion of wheat and/or dairy (“leaky gut“) have a much better chance of getting out of their ‘fog’, leading to improved eye contact and socialization.
The ‘concern’ by the conventional medical community that specialized diets will cause nutritional deficiencies can easily be handled by laboratory evaluation, and intervening with appropriate supplements. Oh, and btw, when was the last time the pediatrician tested for any of these nutritional markers, anyway?
Parents can assess whether simple sugars, such as glucose or fructose, lead to hyperactivity. Importantly, foods that contain artificial colors or flavors represent an extra burden for the body to detoxify.
The reason that the families at The Child Development Center continue to administer restrictive diets is that they see the improvements in their children’s behaviors. Diets are a pain in the ass, but they work.

Sleep
A clerk at Whole Foods told one of our parents that, “The doctor is wrong about melatonin – Valerian root is much more natural.” Melatonin is the chemical that our brain utilizes to control our daily rhythm of waking and sleep. The synthesis of melatonin is fairly simple, and the product is exactly the same as what the brain produces. Valerian root is extracted from a plant, and contains over a dozen different chemicals, some of which may actually worsen symptoms of ASD. The salesperson, etc., assumes absolutely no responsibility for that erroneous opinion.
Chamomile tea is fine, especially for relaxation, and so it may decrease sleep latency (the time it takes to a fall asleep). But, it is a plant product, as well.
Warm epsom salt baths prior to bedtime are great. However, this is not because it sucks toxins out of the brain. Who doesn’t get relaxed from a warm bath, especially those with sensory overload?

Anti-fungals
First, let’s not forget that pediatricians have been overdosing your children with antibiotics for years. Additionally, there are steroids and antibiotics in practically everything that we eat. It is no surprise that yeast overgrowth could be the natural outcome in such a circumstance.
Second, fluconazole (diflucan) is a preparation that The Child Development Center has been utilizing for years without any problems. Hepatic toxicity is avoided by checking liver function tests prior to prescribing the medication; and periodically, thereafter, depending on how often the child requires it.
Potent probiotics and avoiding further antibiotics are the surest way to avoid future yeast overgrowth.
We have explored many ‘natural’ products, including citrus seed extract, circumin, uva ursiturmeric , and others. When ‘yeasty behaviors’ ensue, it is best to ‘bite the bullet’, and give the medicine.
Conversely, stronger medications, such as ketoconazole and Lamisil do not seem warranted.

B12 Shots
“Do we really have to give those shots? Aren’t there oral supplements that have plenty of B12.”
The problem with water-soluble vitamins is not getting them into the body, it’s the prevention of rapid removal. Depositing this useful, safe supplement into fat (the tush), will enable a 2-to-3 day release into the bloodstream. You can’t keep a lollypop in your mouth all day long.
Most importantly, addressing G-I health and optimizing mitochondrial function (with oral glutathione), prior to administering methyl B12, optimizes the chances that this protocol will be successful.

Conclusion
Too few professionals are practicing the medicine discussed by the members of Medmaps.org. We spend hours learning about basic science, months reading and evaluating research, and years treating patients and advising parents. Once a doctor arrives at a your child’s diagnosis and other key issues, a course of action is suggested that produces tangible improvements for many.

Families who are fortunate enough to find a competent physician will do best to take the well-meaning advice offered by others, and the information found on the Internet, with more than a few grains of salt. Concern about whether a treatment is ‘natural’ is not nearly as important as safety and results.

A PANDAS STORY

Sunday, June 29th, 2014

The nomenclature assigned to the condition broadly described as ASD is bound to become more precise as our understanding improves. PANDAS-PITAND-PANS are names for a group of medical disorders that present as autism ‘on steroids’.

The conditions are believed to follow some type of autoimmune activation. In the case of PANDAS, a common bacteria (the kind that causes strep throat) is the suspected offending agent. PITAND was suggested when the infection is unknown, and PANS implies that other agents may be the problem, as well.

They all share the common presentation of intense repetitive behaviors and aggression (described as obsessive-compulsive) in a cyclic fashion with periods of exacerbation and relative remission, in the pediatric age group. When the disease affects autistic patients, it is quite often difficult to differentiate from an increase in ASD behaviors. Patients who exhibit severe tics may be thought to have Tourette’s Syndrome.

The disease was first documented in 1998, and has since taken on a cult-like aura. Doctors ask each other, “Do you believe in PANDAS?” Families who have become more knowledgeable seek the few physicians who diagnose and treat these related disorders. Therefore, the term is subject to The Wakefield Effect (any unconventional theory or treatment for autism is considered to be foolish and useless, possibly leading to greater harm).

Nevertheless, 16 years ago, Dr. Sue Swedo described a “homogeneous patient group in which symptom exacerbations are triggered by GABHS infections.” That post-streptococcal symptom complex is not unlike the Rheumatic Fever epidemic of the 1930′s and ’40s, where heart valves are the target. Some believe that morphed into a specialized kidney disorder in the latter part of the last century.

Add a few more antibiotics, steroids, altered bacteria and pollution.
Voilà – a novel version of the same auto-immune disorder in a new era.
This time, the brain and gut are the targets of antibodies gone awry.

Diagnosis
A youngster with a fever and sore throat, followed shortly thereafter by an acute exaggeration of compulsive and disruptive behaviors, describes a less-than-typical clinical picture. A more common presentation is when a moderate-to-severely affected child, thought to ‘only have’ ASD, begins to deteriorate in subtle ways. The family may seek behavioral or biomedical relief, such as treating suspected yeast, or neurological evaluation and medications.

A positive throat culture is not a de rigueur finding; the additional names (PITAND and PANS) have been added to account for the symptom complex occurring in the absence of any proven infection. Also, bacteriological testing will usually be negative by the time the diagnosis is suspected, and is only possibly helpful in the acute phase. To be clear, a negative throat culture does not mean the patient doesn’t have the condition, and a positive one does not prove it. PANDAS is, therefore, a clinical diagnosis.

The workup includes evaluation of constitutional integrity (blood, liver, kidney, immune system). The most commonly accepted laboratory tests are the presence of elevated levels of anti-strep antibodies, anti-DNAse B and anti-streptolysin O, which are serum markers of recent exposure.

Treatment
Treatment is as frustrating and enigmatic as the condition. Although antibiotics are not suggested because of the timing of infection to symptoms, there are more than a few patients who have improved when treated with penicillin, etc. This suggests that organisms could still be residing in the respiratory system or in some part of the G-I tract.

Additional immunologic interventions include steroids, IVIG, plasmapheresis, and extreme behavioral interventions.

Prevention
Prophylactic antibiotics and periodic immunologic interventions have been utilized with varying levels of cost, risk and benefit.

Screening mechanisms have been proposed to reduce strep in the environment, with systemic or topical antibiotics administered to patients and family members, as needed. According to one expert, in a particularly difficult case, the offending cootie was discovered living on the family dog.

Outcome
Dr. Swedo has stated that 1/2 the children in an 8 year study had “lost their symptoms.” The outcome is quite variable, especially in patients who already suffer from other conditions, such as ADHD and ASD.

Conclusion
The name, PANDAS, is sort of an oxymoron.
There is nothing ‘cute’ about this mysterious autistic condition.
And, it is a bear to diagnose and treat.

The Effects of Soy on Patients with Autism?

Sunday, June 8th, 2014

The less known about a topic, the more the Internet will fill in the blanks, whether or not it represents the truth. So it goes with soy products, especially as regards patients with ASD.

On one hand, parents are advised that their child should avoid casein (a milk protein), but the closest dietary substitutes for yogurt, milk and cheese are typically soy based. On the other hand, there are numerous experts with opinions and stories that warn about a multitude of evils associated with this ubiquitous foodstuff.

? Estrogen Effect
Infants fed soy formula can achieve a significant level of estrogen-like hormones. Recent information links such components to reduced fertility, earlier puberty and disrupted prenatal and early development. There is a paucity of human research, however. Consequences in autistic children are yet-to-be-discovered, and soy components do have positive, anti-oxidant properties.

? Morphine Effect
The production of morphine compounds from inadequate digestion of wheat and dairy is a controversial topic. Nevertheless, at The Child Development Center, a GF/CF diet in children who test high in morphine metabolites is key in reducing the ‘fog’ that prevents normal socialization. Although less identifiable, high intake of soy can sometimes produce these same effects.

? Allergic Effect
The association of food allergies in patients with autism has been a consistent finding (A, B, C, D, E). Sometimes, there is a significant elevation of anti-soy antibodies of various types (IgG, IgE, and subtypes). As in any auto-immune state, avoidance of the offending agent results in better health and improved response to conventional therapies, such as OT, PT, S&L, and ABA

GMO Effect
The new G-I paradigm considers the environmental microbiome. This includes the organisms of – and not of – us, as they interact in the larger intestinal environment. Microorganisms affect neural, endocrine, lining and muscle cells, finally communicating with the rest of the body. It difficult to believe in this generally-accepted modern view and not consider any previous research into the safety of Genetically Modified Food practically irrelevant.

I recently discussed this issue with two of our mothers. One was raised on a farm, and personally witnessed the changes to the family crop as the plants became resistant to… anything. “They are no longer the same!” said that parent. Another mom asked, “In a sense, isn’t everything genetically modified?” But, inserting a new genetic code artificially is un-natural selection. The downstream effects are potentially disastrous, particularly if childhood development was not a previously considered outcome parameter.

It’s not just soy, however. Although a great majority of the US soy is from genetically modified seed, many other crops have been altered, as well.

Conclusions
This plant product is one of the most utilized protein sources in the world. It is a natural food source for many species, and has been a staple in the human population. Clinical studies have shown that eating soy can lower cholesterol as well as the risk for certain types of cancer. Theoretically, it should represent a healthy nutrient.

Our microbiome is constantly being artificially altered with antibiotics, steroids, and a multitude of even more toxic and/or unknown substances. It’s difficult to imagine that such modification couldn’t affect certain growing minds and bodies – in, or out of the womb. Many of the concerns about soy can be aimed at a multitude of foodstuffs – plant and animal.
So, what’s left?

Negative effects notwithstanding, this is sometimes the lesser-evil in patients who demonstrate multiple food allergies but test low for soy and leaky gut. Choices need to be made in order for children to achieve a positive nitrogen balance, which should result in healthier growth and more typical development. When possible, parents can look for rice, nut and other acceptable substitutes.

BIG DISCLAIMER*
At The Child Development Center, a very effective method of addressing the assault on the human microbiome has been the addition of appropriate, potent probiotics with particular strains that improve each individual’s homeostasis. Sometimes, anti-fungals are required. Rarely, even anti-viral medications can be helpful.

It is a process that involves identification of flora before, and often after, intimating appropriate in individualized therapy.

*The information is presented for discussion purposes only.
This is not personal medical advice and not intended for specific patients.

It’s Not the Asperger’s Syndrome

Sunday, June 1st, 2014

Let’s face it; anyone who goes on a shooting rampage has some mental illness. Often, it seems there was a history of family turmoil, few friends, bullying, and lack of empathy. That does not define Asperger’s Syndrome, which is a developmental disorder.

Recent sensational violent acts by young men could be due to a number of conditions, including:
∗ ADHD with feelings of inferiority because of poor performance
∗ Schizophrenia
∗ Personality disorder
∗ Watching violent video games
∗ Oppositional Behavioral Disorder
∗ Acute or transient reactive psychosis
∗ Reactive Attachment Disorder
∗ Subject to abuse
∗ Temporary insanity
In deranged individuals, such as the Connecticut and California shooters, psychiatrists would probably entertain even more possibilities.

There is no precise manner to define Asperger’s Syndrome after someone expires. The conditions that explain impulsive conduct are inaccurate, at best. Psychiatric diagnoses need to be assessed in real-time by documentation of signs and symptoms. Regarding the recent carnage, family members (and their lawyer) reportedly claimed that Elliot Roger was “on the spectrum,” and suffered a long history of mental difficulties.

How about focusing on the histories of mental illness
with easy access to firearms?

The Autism Epidemic that has blighted the child development landscape of the 21st century is a mystery, with vague descriptors and the recent inclusion of many other developmental problems, including Asperger’s and PDD-NOS. The public is left to wonder, “Why so many killing sprees?” The media is quick to supply an answer, “Perhaps it is those autistic (Asperger’s) kids!”

I have examined scores of patients who fit criteria for the disorder. Effective communication is difficult; some are depressed, some understand and address their challenges, and others who say, “That is the way that I am.”

Key traits include early developmental delays, an unusual affect, restricted interests, decreased eye contact and sensory issues. They are usually very standoffish individuals who feel uncomfortable outside of their usual environment.

There is not a great deal of published information about the association between violence and Asperger’s syndrome. In one study, 31 of 37 of the patients (85%) had a possible or probable comorbid psychiatric disorder.

A 2010 follow-up paper concluded, “The mean percentage of registered convictions was similar to that in the general male population of Austria over the studied time period. A qualitative assessment of offence types in Asperger’s former patients suggests that the nature of offences does not differ from that in the general population. In this original cohort of Asperger’s patients, convictions were no more common than in the general male population.

We should be very skeptical about media pundits’ experience, statements and motives. Sensational reporting is unfair and irresponsible because it assigns to Asperger’s patients a stigma that they do not deserve. There are many more examples of productive individuals than violent criminals committing heinous acts due to their autism diagnosis.

Just because Asperger’s Syndrome is the “diagnosis du jour,” it doesn’t mean that there is a shred of proof that affected individuals commit brutal crimes or that they are any more prone to such violence than those who are not so classified.

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Brian D. Udell MD
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Email bdumd@childdev.org
Website http://www.childdev.org

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