Archive for the ‘PANDAS etc.’ Category

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.

Fathers and Autism

Sunday, June 18th, 2017

The diagnosis of autism seems more difficult for the Dads. We are simply not wired to easily accept deviations from expected norms. For the entire gestation, through the first 15+ months, it’s mostly Mother who is feeding, going to medical visits, and communicating with the new child. So, when development lags and socialization ceases to flow, there is often an extra bit of frustration and disappointment.

This is an ode that I wrote 5 years ago, updated for today’s families who affected by autism:

Warrior Dads. Concerned Dads. Curious, watchful, insightful. Patience.
Sometimes, not so patient.
 
Hard working Dads. Smart… trying anyway. Good husbands… trying anyway.
Sometimes, it works.
 
Miniature cars. Trains. Crayons. Getting them in just the right order.
Spinning. Wheels. Fans. Is that a ‘stim’?
 
Sleep – please. Poop – ?too little ?too much
Toilet training. Communicate!
 
Catch. Football. Soccer.
Maybe, have to wait a little while.
 
Education. Vacation. Camp.
IEPs.
 
Movies. Computers. iPads. iPad Apps.
Youtube. Too much repetition?
 
Wii. xBox. Video games.
On to another (non-preferred) activity. 
 
Decisions. Schools. Therapists. Drugs.
Opinions. Treatment options. Vaccinations. 
 
Doctors. Specialists. Alternative doctors. Naturopaths.
Homeopaths. Chiropractors. Nutritionists. B12 shots.
 
Appointments. Medications. Therapies. Supplements.
Money. Money. Money. More money.
 
Rare Holidays. Vacations. Exercise. Hobbies.
Planning for Restaurants. Shopping. Errands. 
 
Looking for Smiles. Playing with Toys. Chase.
Bouncing. Lots of bouncing.
 
Swimming. Horseback riding. Pet turtle.
Dr. Udell’s fish tank.
 
Finding activities. Yoga for kids. Summer camp scholarships.
Sensory friendly films. Thanks, Autism Society, and other local organizations.
 
Missing Cheeseburgers. Pizza. Mac & cheese. P&J.
Gluten free/ Casein free – Are these French Fries OK?
 
Sisters, brothers, grandparents, in-laws, cousins.
Peers. Precious few friends. 
 
Homework. Practice. Play. 
Worrying. Teaching. Learning.

 It’s all good. You’re a great Dad.
Happy Fathers Day !

© theautismdoctor.com

The Challenge of Challenging Behaviors

Sunday, June 11th, 2017

The Child Development Center has been experiencing a rash (dare I say, “Epidemic”?) of children who present with poor socialization, decreased attention requiring prompting and redirection, sensory and/or oppositional issues, extreme rudeness, dark thoughts and threats, obsessive activities, immaturity, and aggressiveness (physical, verbal or both). The children are not ‘autistic’. And, it’s not ‘just ADHD’.

One parent of such a child recently wrote that he was saddened by these disturbing developmental conditions in his otherwise amazing kid. When children do not ‘come out’ the way that we had anticipated, it brings heartbreak and disappointment.

Extremely disruptive displays are not merely frustrating.
They can be embarrassing and even cause depression.
In today’s world, that has become the journey of (too) many parents.

What Doesn’t Work
Corporal punishment was the traditional mainstay for ‘making children behave’. Thus, grandparents often complain that today’s parents are not firm enough. First, the price that is paid by utilization of either verbal or physical punishment is self-esteem – by both parties. Abusive actions, offhandedly employed in the last century, may prompt a Child Protective Services visit in this one. Second, affected youth appear to experience increased pain resistance. Eventually, that form of discipline goes unnoticed. Third, such a reaction is the exact opposite what we are trying to instill.

In the past months, we have examined a number of children whose medical pharmacopeia appeared proportional to their age. There was a 7 year-old taking three medications, and one teen was already getting Abilify, Risperidone, Geodon, Valproic acid, and Lamectal, among other pharmaceuticals. And, her psychiatrist was suggesting more. When does it stop?

I am certain that parents and doctors arrive at such multiple combinations of drugs honestly. Each symptom is met with another medicine. The patient is then drowning in chemical soup. What is the plan?

What Can Work
A medical workup is required. The prescribing physician is obliged to follow levels of anticonvulsants (for symptom adjustment), liver and kidney function (for drug elimination), blood count, and nutritional status.

In given patients, practitioners should consider fungal overgrowth, PANDAS, or Lyme disease. Screening for toxic substances has been a recent addition to our armamentarium. So new, perhaps, that such data is not necessarily that helpful, yet. Likewise, genetic technology has become available that better determines how patients metabolize various pharmaceutical preparations, but usefulness in clinical practice remains limited. To the extent that an astute clinician determines an underlying problem(s), great strides can be made toward amelioration of some disturbances.

Behavioral interventions are the proven treatment. It takes a professional therapist to get challenging children to display self-control. Common sense dictates that such juveniles require absolute consistency. One pre-adolescent demonstrated an uncanny ability to mock my consultation. Perhaps, the parents were thinking, “Now, you see how rude he is!” when they laughed it off. Regardless, their response validated the child’s disrespect.

One parent has developed her own form of pre-vigilance. Mom is able to ‘sense’ when her kids aren’t able to concentrate, and provides relief at the earliest sign of distractibility.

Rather than additional pharmaceutical preparations, doctors should consider which ones to decrease or discontinue. The list often contains drugs that were instituted for behaviors that are no longer at issue. Additionally, it can be helpful to consider less toxic medications or even supplements when the status quo is not doing the job.

Conclusions
My diagnosis is that such challenging children have escaped ‘traditional’ autism. It’s not obsessive-compulsive disorder, Tourette’s, schizophrenia, bipolar disorder, sensory/visual/auditory processing disorder, oppositional defiance disorder, etc.
It’s processing disturbances caused by our toxic environment acting on susceptible individuals.

Finding relief may be exasperating, with periods of improvement and regression. This is when patience and the knowledge that the child has the capacity to achieve necessary skills to ‘make it’ need to take precedence. Some parents choose home-schooling, special schooling, and less-than-hoped-for academic situations. Some must resort to medications.

This alteration in childhood development is not FUN. For many, it’s parenthood in the 21st Century. Consider that the best course is to ‘first, cause no harm’.

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.

Getting the Most from Behavioral Therapies

Sunday, March 26th, 2017

The ever-increasing number of children who experience significant developmental problems requires a proportional addition of skilled professionals for assessment and intervention.

At The Child Development Center, we have noted the emergence of certain patterns of treatment choices. Intelligent, involved parents express their concern about the paucity of well-trained professionals, the cost of treatment, the lack of insurance, and frustration with the speed or course of their child’s progress.

Applied Behavioral Analysis
The general consensus is that the proven protocols of behavioral intervention are most likely to result in significant symptom reduction in patients with ASD. As reported in the 2001 publicationEducating Children with Autism, “teaching parents how to use pivotal response training as part of their applied behavioral analysis instruction resulted in happier parent-child interactions, more interest by the parents in the interaction, less stress, and a more positive communication style. The use of effective teaching methods for a child with autism can have a measurable positive impact on family stress. As a child’s behavior improves and his or her skills become more adaptive, families have a wider range of leisure options and more time for one another… To realize these gains, parents must continue to learn specialized skills enabling them to meet their child’s needs.”

Why does utilization of ABA lag behind other treatments
in so many regions around the country?

The prevalence of children with autism is outstripping the number of qualified, interested therapists. Economic pressures appear to dictate direct provision of services by paraprofessionals who are properly supervised. Therefore, the most efficient providers frequently observe, evaluate, and mentor the less-experienced staff. For-profit companies may find such practice difficult to maintain.

Insurance companies regularly find a way to weasel out of their commitments, many times in spite of outside mandates or even advertised benefits. Denial of payment for services may take the form of incorrect coding, credentialing, and timeliness of payment. Providers are, therefore, less likely to accept their (lack of) coverage.

There are a variety of types of behavioral intervention; including DTT, EIBI, PRT, VBI, DIR, TEACCH, OT, Sensory Integration Therapy, Speech Therapy, and PECS. Devotees of each claim superiority of their strategy. Such a smorgasbord may confuse even the most attentive parent.

Discussion
Recovery from the major challenges that accompany an autism diagnosis is an exhausting journey for the whole family. Traditional therapies are the proven tools to enable a successful transformation. They are an important consideration that must be offered to every patient. Parents should use their common sense, plus their unique understanding of the child, to assess whether the plan of action really applies. Does the suggested intervention make sense? Does the child ‘click’ with the therapist(s)?

When professionals continue to insist that 1) you are not doing the right thing at home or 2) your child can’t improve in some particular function, it’s imperative to seek additional assistance. Maybe the provider is correct, but little progress will occur if the parties continue to debate.

I often advise parents who are concerned about some ‘magic’ 25-40 hour ABA requirement, that a good OT, or PT, etc., has learned to be effective by utilizing a variety of techniques. Therefore, you can add up the various interventions, and will frequently find that you don’t need to feel guilty about that numeric stipulation.

As children improve, the challenges of proper socialization and self-control become the most difficult and lingering concern. This may require an entirely new and unique skill-set to come to the fore.

Conclusion
All interested professionals; including chiropractors, acupuncturists, alternative and traditional practitioners, can be important members of the village trying to get your child on the right track. Because the present state-of-the-art is in such flux, the correct combination of traditional and alternative protocols provides the best chance for a successful outcome.

Medical Academy of Pediatric Special Needs Spring 2017 Conference

Sunday, March 12th, 2017

At the conference with Yale prof Dr. Sid Baker – one of the originators of biomedical treatment

If practitioners wish to become more effective in the diagnosis and treatment of children who suffer developmental challenges, it will require a new paradigm. Therefore, attending conferences, such as the Simons Foundation for Autism Research, the Autism Research Institute, and the Medical Academy of Pediatric Special Needs, is essential to acquiring that knowledge.

This year’s advanced sessions introduced a completely new functional medicine topic – Hormones from Pregnancy to Teens. Dr. Cindy Schneider examined the differences between the brain anatomy, physiology, and chemistry that might explain how ASD affects males vs. females, and the consequences as we age. Additionally, there are the special complications incurred throughout puberty, with important implications regarding effective treatments.

Dr. Stephen Genuis‘ presentations, Hormone Disrupting Agents, provided a fascinating complement to that lecture. He highlighted the chronic nature of ASD, and the disrupting effects of toxic agents in our modern environment. A key component is the toxic load; if topical agents represent ounces, ingested compounds represent pounds, and the air that we breathe can be expressed in tons of potential poisonous compounds. And, it takes months or years to eliminate what takes days or weeks to ingest. He also pointed out that medical school curricula and training in toxicology is woefully inadequate.

Dr. Lynne Mielke rounded out the day by submitting actual case histories of young people with mysterious medical problems. Her background includes personal experience, extensive knowledge and patient care. This physician’s psychiatric/neurological point-of-view was especially insightful and provided valuable material that directly applied to the audience’s practice population.

Day 2
Another novel and exciting topic was Preconception Care: A New Standard of Care in Maternal-Fetal Medicine. Dr. Genuis discussed the increased risks of preterm birth, Caesarian section delivery, and chronic childhood illness, such as cancers, diabetes, autoimmune conditions, autism and  ADHD.
He presented the emerging research of toxicant exposures and nutritional deficiencies that continue to escalate. Metabolic disruptions may easily ensue, leading to many of the persistent disorders that are now experienced by an increasing number of children, although they may look perfectly normal at birth.

Such difficulties seem imminently preventable in the population, and there appears to be a lack of awareness in the majority of obstetricians. Even fathers who are exposed to toxic agents may become a vector for such later difficulties. Dr. Genuis then discussed the means to eliminate the myriad of  toxins – mostly by sweating, but some by other means, such as fasting or medication.

Dr. Elizabeth Mumper followed with an in-depth discussion about the lack of awareness of proper nutrition, environmental factors, the hazards of indiscriminate use of antibiotics, and poorly researched vaccinations, which appear to be significant factors leading to autism. She even offered another alternative schedule for high-risk infants and toddlers.

Nutritionist Robert Miller presented a very dense lecture, attempting to answer the complicated question, “What can be done about all of those new-fangled genetics tests?” Suffice it to say, that offering will take some time to digest.

Day 3
The lectures consisted of an assortment of the faculty’s most difficult cases. Experts included Drs. Baker, Frye, and Neuenschwander; and the audience wasn’t too shabby, either. Case histories were offered about families who experience unimaginable, incomprehensible challenges; from self-mutilation, to children attempting suicide (sometimes, successfully), to attacks on their caregivers.

The take-home items from such discussions are simply, “How can we prevent this, and successfully treat our population?”

Conclusion
It’s fortuitous that Dr. Ratajczek’s article, which examined the research about vaccine safety, was published at the time of this seminar. Participants have been wringing our hands about the ‘disconnect’ between what we (and many parents) experience every day, and conventional medicine’s dogma. The article might act as fuel-to-the-fire for some, be ignored by the majority, but represents some slight measure of vindication for our hard-working tribe.

We are getting only marginally closer to our understanding about the cause(s), treatment(s), and prevention(s) for autism. Much more research is needed. The Medical Academy of Pediatric Special Needs provides a valuable platform for presenting, evaluating, and disseminating such expertise.

Autism vs. Insurance

Sunday, November 13th, 2016

insurance4If insurance is a wager to cover the expenses incurred due to some rare, catastrophic event, then health insurance is only a distant cousin. It’s betting how much you will owe hospitals and doctors when you are un-well. For people who will never get sick or injured, medical coverage is unnecessary.

However, for an increasing number of modern families, an autism diagnosis will become a reality. The lifetime costs range from ~$1.5M – $2.5M, or more. Actuaries know this, of course. Presently, and for the foreseeable future, to the extent that is ‘allowed’, coverage will be significantly limited for medical conditions that fall under the ASD banner. It’s the insurance business.

How Not to Cover an Autism Claim
An underlying principle is that, the longer it takes to pay, the more interest is generated on a company’s reserve dollars. Any excuse to deny, therefore, can improve profitability.

Since coverage is provided based on the type of diagnosis, the more specific and verifiable, the less likely likelihood of a disagreement about expected costs. Autism is neither a precise entity, nor can it be confirmed with scientific instruments.

Even the usual and customary therapies, such as ABA, OT, PT, and Speech&Language are disputed. Insurance plans have gone kicking and screaming into paying for those proven services. Plus, the practitioner must possess the credentials that are acceptable to the payor. Barriers are erected at each step along the way.

Getting reimbursed for a proper workup can be difficult. An MRI or EEG may be customary, but not a genetic test or food allergy panel. Successful patient outcomes are not as convincing as university research. Funding for a study on dietary effects on behavior based on laboratory evidence carries little profit motive.

For ASD, the primary on-label medications are very potent and potentially harmful. Due to formulary limitations based on cost, practitioners are even instructed to prescribe a more dangerous drug over others that might be better tolerated. More effective and less expensive supplements are not even considered.

The Folate Example
For over a decade, variations in the genes that propel an important metabolic pathway have been tied to problems in patients with autism. That has not deterred insurers from denying reimbursement to the accepted testing laboratories – and increasing charges for out-of-pocket expense.

Utilizing a relatively inexpensive supplement, a recent study has demonstrated, “…treatment with high-dose folinic acid for 12 weeks resulted in improvement in verbal communication as compared with placebo…”

Not surprisingly, insurance companies refuse to pay for this medicine, either.

Conclusions
Families of patients with ASD already know that they must pay out of pocket for many of the treatments. If they work great, it’s worth it.

As new insurance products take shape, it may be a good opportunity to lobby nascent companies for improved coverage of all autism treatments that show validity. Showing a cost savings matters more to companies that intend to stick with an insured.

Measuring markers of autism, such as folic acid metabolites, for diagnosis and results of treatment, will go a long way toward discovering – and getting reimbursed for – newer interventions.

The role of prevention cannot be overemphasized. Our external and internal environments must be scrutinized. More appropriate standards created and implemented for safe food, air, and water, should reduce the cost of all health insurance.

Pediatricians and Autism

Sunday, November 6th, 2016

“I think that your toddler may have some signs of autism. That’s a complicated subject. I’ll give you a referral for…”

Sound familiar? Was that the first time that you heard what you (or your spouse) had suspected from a medical professional?

This story is not meant merely to ventilate. Education is the goal. The challenge is how to get an uninterested, overworked, under-reimbursed, skeptical group of intelligent individuals to pay attention. We are standing in the middle of the childhood epidemic of our time, and the professionals continue to worry that there aren’t enough vaccinated kids! It’s insane.

That was the ventilation part.

Education
At the first sign of a thyroid problem, e.g., a doctor doesn’t just send a patient straight to the endocrinologist. Rather, a baseline blood level is ordered, the results are evaluated in the light of the patient’s signs and symptoms. Next, the clinician is expected to explain all pertinent information, and refer to the most relevant specialist.

In the case of developmental delay, it seems that such a protocol is rarely followed. Even the expert (neurologist, or developmental pediatrician) seldom follows a prescribed course of action. An EEG and MRI? That depends on the family’s insurance status. Chromosomes or genetic testing? The usual advice is, if you aren’t having any more children, that won’t be necessary. Or, “The results won’t matter, anyway.”

External factors such as these should not be the determining factor in the 21st century workup of any patient, let alone a child whose growth is not proceeding in a normal fashion. A previous post details the top ten things all pediatricians should know about ASD. There is a workup to be done.

After a visit with the neuro-developmental doctor, a follow-up examination should take place with the ‘main’ practitioner, who ought to become the child’s medical advocate, rather than the parent. Pediatricians who believe that a family is ignorant or ill informed about the use of an off-label treatment need to learn more about all of the options, in order to assist the family in such decisions.

Discussion
This year (Jan-Nov, 2016), there were eight articles in The Journal of Pediatrics specifically about ASD. That is less than one significant article per month in our major pediatric publication.

Autism Spectrum Disorders and Metabolic Complications of Obesity
Autism and antidepressant use in pregnancy
New rapid autism screening test
Applied Behavior Analysis as Treatment for Autism Spectrum Disorder
To Screen or Not to Screen Universally for Autism is not the Question: Why the Task Force Got It Wrong
Predictive Validity of the Modified Checklist for Autism in Toddlers (M-CHAT) Born Very Preterm
Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability
Comorbidity of Atopic Disorders with Autism Spectrum Disorder and Attention Deficit/Hyperactivity Disorder

The best way to address this present state of outworn medical attention is to fund and publish more research. This involves a paradigm shift in the diagnosis and therapy of ASD. The condition is of multifactorial origins and consists of a variety of signs and symptoms that can be ameliorated.

Pediatric residencies must adopt a new clinical rotation for this important malady. Practitioners who do not believe that, in complicated medical conditions, their role should be ‘captain of the ship’, might consider other medical specialties that do not carry this type of obligation.

Conclusion
It is simply not enough for a present-day pediatric clinician to exclaim, “Well, I don’t know much about autism.” The preferable, and intelligent answer should be, “I’m going to have to do a bit of study about this condition. They didn’t teach us about this in med school, but it seems important.”

Perhaps parents can use this essay to inspire/challenge your doctors to develop a modern attitude toward this medical mystery.

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Brian D. Udell MD
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