Posts Tagged ‘Attention deficit’

Americans with Autism Act

Sunday, February 7th, 2016
ADA

George I signs Americans with Disabilities Act 7-26-90

Our local Board of Education was sued in Federal Court this week for not providing proven services to children affected with autism here in Florida.

The Sun-Sentinel declared, “The Broward County School District is once again under attack for its handling of special needs students.” Our educational services are not meeting the needs of the population, is how I read that.

The Case
The parents of 2 families are asserting that ABA should be provided, since it is the proven method of getting kids on the right track. The School Board response is that it is not a good idea, ’cause they have a better plan. Well, not really. They might get a better plan, and if they did, this ruling could prevent implementation of their better plan.

A 2000 Autism Task Force, put together by an independent body of experts, put out a well-researched Report on successful ASD treatment, and the efficacy of ABA therapy.

Surely the fact that the system in this Florida locale has already been cited for deficiencies in services to the educational needs of 30,000 students raises suspicions about the tactics, motives and abilities of the defendants.

Moving Parts
The first draft of the Americans with Disabilities Act (ADA) was introduced in Congress in 1988. After that, the bill went through numerous drafts, revisions, negotiations, and amendments. All over the U.S., disability advocates began working to educate and organize the disability community, and to collect evidence demonstrating the need for a strong anti-discrimination law.”

Insurers
Eight years ago, then-governor Charlie Christ signed a bill in Florida that called for health insurance companies to negotiate agreements with the state on how they will cover diagnosis and treatment of autism-related disorders. Companies not entering into such agreements were to be required to enter into such agreements within a year. Coverage was capped at $36,000 a year, or $200,000 over a lifetime. Needless to say to Florida residents, traditional therapies remain the least-authorized treatment for our patients.

Recent settlements have been for the defendants, against state agencies and insurers. It even made the news when Washington State became #38 to require autism benefits.

Boards of Education
There appears to be a common thread that Boards of Education do not have the available resources to address such daunting numbers of affected children. From California to New York; not only for ABA, but for lack of appropriate assessments, training and transitional skills.

Funding is also challenged when the Federal Government holds back their fair share of support due to red tape and squabbling over the definition of appropriate services.

Employers
As reported only 2 years ago, “Boeing, which employs more than 80,000 residents in Washington, was sued in a class action for allegedly excluding applied behavior analysis autism therapy implicitly — by having its claims administrators reject all coverage of ABA therapy and not including ABA providers in its networks, the lawsuit alleges.”

Discussion
A significant part of the problem is that the DSM 5.0 – The Diagnostic and Statistical Manual of Mental Disorders – is the wrong place to put this diagnosis. ASD is a medical, not a psychiatric disorder. That paradigm alteration puts the onus on the health and educational system to provide relief.

Another obstacle is the continuing debate about the increasing numbers of children with an ASD diagnosis. If the epidemic is not real, it shouldn’t be necessary to allot increased resources.

Most important is dollars. If the numbers are real, it’s going to cost lots of money to provide $75/hr. personnel to a portion of the student body. Over a lifetime, costs exceed $1.5M, and depend on the degree of intellectual disability. Presently, resources are woefully underestimated.

Conclusion
There shouldn’t need to be lawsuits against government, insurers or employers so that they obey a law that was passed thirty years ago.

There shouldn’t need to be a separate Americans with Autism Act.
ADA is already in place.

Responsible parties need to act responsibly, and laws need to be correctly and fairly interpreted and enforced.

Concerns About Nutrition in Restricted Diets

Sunday, January 31st, 2016

Achieving an Optimal Medical Outcome
A Play in 3 (very short) Acts
By Brian D. Udell, MD

CHARACTERS

Dr. Udell Medical Director of Pediatric Special Needs Practice. Forty years of experience. Doesn’t take any crap. Prone to voicing his opinion.
Mom A great mother who tries to listen to all the professionals, research the ‘net, and get the best care for her child. Seeking another opinion from Dr. Udell.
Bobby – the kid Beautiful 4 year-old child with autism. Speech apraxia and social isolation are the most significant problems.

SETTING
The Child Development Center of America, in Davie, Florida. Typical tropical rainstorm on the outside. While the child is being observed via cameras in the playroom, a discussion ensues in Dr. Udell’s medical office.

TIME
The present.

ACT 1
MOM
I came to see you because the doctors over at the hospital want to put a gastric feeding tube into my child. He got sick with intestinal blockage 3 months ago, then pneumonia 2 months ago, and now he won’t eat anything but Pediasure. Also, we have to give Miralax all of the time, or Bobby won’t poop for 3 or even more days.

Dr. UDELL
Do any of the doctors know that Bobbly has autism?

MOM
Well, I guess so. But they are all worried about his nutrition. Without the Pediasure, he won’t eat anything. He wasn’t growing and we are all scared. But, I don’t want to put a tube into my child.

(Dr. UDELL performs a physical examination and goes over the chart containing information from previous visits.)

Dr. UDELL
I see here that the child is really intolerant of casein. Also, our notes reflect that there was some variable response to biomedical protocols. What happened with that?

MOM
We did everything that we could to get him to eat. Especially after he got sick recently, this was the only was to make sure that he was fed. At least now, he drinks the Pediasure – just won’t eat anything else.

ACT 2
Bobby enters. He makes pretty good eye contact with his mom, mostly ignores the doctor, says some words that make sense and are very clear (“go home”), and others that are unitelligible. Echolalia and scripting. Then, back to the playroom. The staff interacts with him, but mostly he wanders by himself, with occasional hand flapping.

Dr. UDELL
Is he getting Speech and Language Therapy?

MOM
The insurance… we’re waiting for that.

ACT 3
(Dr. Udell seems upset. He closes the door, slowly raising his pitch, and pointing his fingers.)
Everything that you have told me, and everything I know about your child tells me that all his problems are really one problem – Autism. Somehow his immune system and his gut are involved. Nutrition is surely a factor.

(Dr Udell’s voice more sympathetic now.) You are a great mom. What these doctors are suggesting is not only un-helpful, it could lead to permanent problems. Where does this cycle of Pediasure and Miralax for constipation lead to? Abilify for stimming and Adderall for hyperactivity.

(Dr. Udell sounding more authoritative.) The main deficit is speech. At this crucial time in your child’s less-than-5-year-old development, whatever you do from this point forward, ought to be focused on improving communication, especially producing useful speech. And, Bobby even exhibits occasional flashes of that skill… he’s in there!

To the extent that addressing gut and nutritional issues advances that goal, we should capitalize on our ability to pursue. But… THE BRAIN TRUMPS THE GUT. The child will reach the age of ten or twenty – either bigger or smaller. But, will he talk?

(Dr. Udell’s right finger pointing in the air). To prove my point, I offer the following scenario: A doctor says, “I have a pill that will definitely increase the chances that useful language will emerge, but it may result in a loss of a few pounds in weight or inches in final height. Otherwise, there are no other significant risks. And, it will take time, effort, and resources. It may seem that the child is starving, but we will make sure that doesn’t happen.”

Or, the family could be satisfied with a rubber tube that pumps fake milk into a child’s stomach, assuring nitrogen balance and optimal growth. The child’s autism? That’s not their problem – and, anyway, there’s little that can actually be done, other than conventional therapies and take your chances.

(Dr. Udell seems really upset.) There really is no in-between. ASD is associated with gastrointestinal issues, including oro-motor functioning, sensory processing, GERD, and constipation. And, there are no pickier eaters than those who suffer from restricted interests and repetitive behaviors.

Whatever it takes to achieve some minimal nutritional support, a way can usually be found to address the lack of interest in real food. And, it starts with a speech and language professional who understands that feeding therapy is the most basic part of the patient’s issue. If it takes 3 or more months of slowly introducing necessary supplements, medications, and yes, even foods, that’s OK. Because communication – not nutrition – is the paramount issue of that period in the child’s recovery. (Dr. Udell is standing, and breathing rapidly).

EPILOGUE
Nearly 30 years ago, as a practicing neonatologist, I introduced the first computer program for feeding tiny babies. As a pediatrician treating infants who were suffering from cocaine addiction, poor prenatal care, and even HIV/AIDs, our NICU was responsible for working with nutritionists, nurses and parents to best address dietary needs in very sick newborns.

So, as the epidemic of signs and symptoms that are presently called Autism Spectrum Disorder evolves, my perspective on the topic of achieving optimal nutrition has advanced and adapted to meet the needs of each individual patient.

Marking Improvement in Your Toddler’s Autism

Sunday, January 24th, 2016

In typically-developing children, the second year of life ushers in socialization and mobility. Eye contact becomes more sustained. Babbling precedes talking. Motor skills lead to physical independence. That gives rise to play, and achieving the skills that will be required later, in school.

The treatments that are utilized in successful alternative and complementary techniques are meant to improve youngsters’ overall health. This approach, combined with appropriate traditional therapies, often leads to the necessary communication skills and maturity that enables escape from the most devastating effects of ASD.

Altering the Course
Understanding this revised trajectory is important for recognizing the positive and negative changes that accompany recovery. Speaking at 3 years of age is now a ‘smarter’ individual, who displays the ability to repeat words seemingly without fatigue (echolalia) and can remember entire phrases (scripting).

  1. Words. There are a few to start, plus some that are only occasional. Then, more consistent speech ensues. Two word sentences materialize, again, only sporadically at first. Gibberish precedes understandable language. Self-talking and whispering proceed to talking to toys, then parents and siblings, older and younger children, finally leading to age-appropriate play.
  2. Socialization. Turning to voices and the child’s name signals more awareness. Eye contact is a skill that engenders joint attention and learning by looking. Pointing is the earliest sign that this skill is emerging.
  3. Strength. As core tone improves some remarkable changes can take place, from better posture and ambulation, to the ability to climb monkey bars and push bicycle pedals. Improved mitochondrial function leads to better energy efficiency and less gastro-esophageal reflux, and even decreased strabismus (eyes crossing).
  4. Sensory processing. Pain thresholds decrease, resulting in a more normal response to getting hurt. Self injurious behaviors and toilet training can respond to reasonable remedial efforts.

Discussion
The good
– A modern ASD protocol encourages the awakening of a toddlers’ neural pathways. This enables better oral-motor functioning; from proper chewing, to sensory improvement and the ability to tolerate a more varied diet, to words, and eventually, functioning speech and language.

The bad – Improvement initially results in increased self-stimulatory behaviors. Especially annoying signs, however, are teeth grinding, screaming and screeching, verbal tics, decreased focus and attention, and even aggression. Therapists’ attempts to ‘control’ these behaviors would be better served by redirection, rather than employing strategies to extinguish such symptoms.

The ugly – Calling restricted interests and repetitive behaviors ‘Obsessive-Compulsive’ is imprecise at best and destructive at worst, especially when doctors try to pharmacologically ‘fix’ the situation. The anxiety that naturally accompanies a child’s awkward development should not reflexly signal a psychiatrist to prescribe strong central nervous system remedies. And, the impression by a neurologist that lack of focus and increased activity may be addressed with stimulant medications is likewise, unwise.

Conclusions
There are multiple causes and presentations that fall under the diagnosis of Autism Spectrum Disorder. So far, the myriad of treatments – both conventional and alternative – reflect the lack of specificity in understanding the epidemic.

It is not readily apparent exactly which therapy sets off that quantum leap in development in each individual child that enables a parent to observe some glimpse of intellect that indicates neuro-typical processing.

By correctly recognizing those moments of clarity and capitalizing on realized gains, professionals and parents can maximize the chances for a more complete reversal.

Antibiotics and Autism, too

Sunday, January 17th, 2016

One of my most re-tweeted essays is The Law, Antibiotics, and Autism, which is a discussion involving a recent Federal Court ruling. The final verdict was that, even though antibiotics in our food are admittedly harmful, the LAW’s hands are tied, and the practice would continue.

The evidence shows that resistant strains of bacteria are being created due to the addition of bug-killers in animal feed. Tweeters questioned my jump to the association with autism.

Is there any association
between antibiotics and ASD?

Evidence
More than 10 years ago, a proposed mechanism was offered as evidence that demonstrated increased antibiotic treatment in “… 206 children under the age of three years with autism… A significant commonality was discerned and that being the level of chronic otitis media.”

A well-researched paper entitled Microbiology of regressive autism concluded, “This shows that penicillins and cephalosporins… have a major impact on the normal bowel flora and therefore might well predispose subjects to overgrowth of such organisms … of particular importance for autism…”

There is even information (animal and human) that microbes in the mother’s G-I system affect the developing fetus.

Mostly, however, the overwhelming evidence is the preponderance of children with signs and symptoms of ASD who offer histories consistent with multiple trips to the doctor, and suffer from a myriad of gastrointestinal ailments, which seem to respond to probiotics, anti-fungals, and targeted antibiotics.

Discussion
Women who are pregnant, or thinking about becoming so, should try to avoid all pharmaceutical agents, unless absolutely necessary.

Doctors should take note of this and make every reasonable effort to avoid the knee-jerk response to prescribe a ‘z-pack’, or 10 day course of amoxicillin, at every turn.

Conclusion
Once it became established that antibiotics in the food chain cause harm, it shouldn’t really matter exactly what havoc they wreak, for the FDA to protect us. If medication gets into the livestock, it pretty much gets into mother’s milk and your kid’s chicken nuggets.

However, autism is the epidemic that hundreds of thousands of parents are facing. While an increased rate of two variables doesn’t prove a relationship, common sense dictates caution, at least, in their continued indiscriminate use.

Premies and Autism

Tuesday, January 12th, 2016

crack-baby-mythAs a practicing neonatologist for over 25 years, it has actually come as bit of a surprise that premature infants are more likely to develop signs and symptoms that are associated with autism.

In an earlier position as the Director of one of the largest neonatal units in the country, I examined thousands of high-risk children through the age of 3 years. The emergence of ASD in that population did not become apparent, however, until the first decade of this century.

Recent Evidence
Coincident with the rise in autism was a 2008 article entitled, Positive Screening for Autism in Ex-preterm Infants: Prevalence and Risk Factors. “Early autistic behaviors seem to be an underrecognized feature of very low birth weight infants,” was the conclusion.

A 2015 sampling “… of 1655 at risk children for developmental delays who were 17–37 months of age,” demonstrated that, “Premature births were almost twice as common for the atypical development group versus the ASD group.”

Other research concluded, “Overall, the results suggest that <<very premature>> children with ASD have different brain structure in the neonatal period compared with those who do not have ASD.”

study that examined serial MRIs in premies noted, “…brain structural alterations, localized in the regions that play a key role in the core features of autism. Environmental factors were stressed. The authors concluded that, “Early detection of these structural alterations may allow the early identification and intervention of children at risk of ASD.”

A 2016 paper examining very premature infants, found that “…alterations had functional implications for information flow, rule learning, and verbal IQ.”

Risks Associated with Prematurity
Immune system – Does not develop fully until months after full-term delivery. In premature babies, the safety of the environment has been breached.

Brain – The last 3 months of gestation are important for complete development. Bleeding and disrupted architecture may occur in key areas.

Gut – Nutrition in this population is anything but normal. The muscle that prevents backup of food from the stomach to the esophagus is very weak and prone to leakage. The modern treatment using PPIs could be adding to the problem with poor vitamin absorption. Clinical fragility and deterioration instigate antibiotics, which further disturb a healthy microbiome.

Skin – In premature infants the dermis is paper-thin and subject to the same maladies as a burn patient. In addition, the main barrier to invasion by cooties and toxins is deficient.

Socialization – Modern incubators are like a womb-with-a-view; but plastic, noise, and lights are far from the norm for the tiny baby.

Conclusion
The epidemic of children affected by autism has multiple causes and presentations.

If some types of ASD are due to susceptible individuals in a toxic environment, this scenario of prematurity – and the treatments – can add to the risk. Furthermore, the increase in incidence in this population can provide clues to the condition.

As for prematurity – keeping the baby in the oven as long as possible is always the best course, if Mom gets the choice.

An Autism Prevention

Sunday, January 3rd, 2016

Since there are multiple proposed factors that could lead to autism, some of them, at least, ought to be preventable. Proven associations due to environmental pollution or toxic foodstuffs are under little personal control, however.

Research that recently appeared in a respected medical journal could provide a key causative factor in the rising number of cases of ASD, plus a valuable tool that women can use to decrease their risk of having an affected child.

Pro Antidepressants
The party line has been that, while perhaps not totally safe, there are increased risks of developmental and other abnormalities from stress and/or anxiety, alone. Twenty years ago, an important study ‘established safety’ when it was reported that, “Women who take <<Prozac>> during pregnancy do not have an increased risk of spontaneous pregnancy loss or major fetal anomalies…” BTW, autism was hardly on the radar when that dogma was announced in 1996.

As recently as 2013, an article in the BMJ concluded, “However… antidepressant use during pregnancy is unlikely to have contributed significantly towards the dramatic increase in observed prevalence of autism spectrum disorders as it explained less than 1% of cases.” This was in the face of their data that showed, “In utero exposure to both SSRIs… was associated with an increased risk of autism spectrum disorders…”

Anti Antidepressants
There are various types of antidepressants, depending on the neuro-chemical response in the brain (and other parts of the body that have similar cells). The most popular have become the SSRIs, and their use has taken off since the first decade of this century.

These medications are not approved by the FDA for children < 7 years of age.

SSRIs are “not for use in nursing.”

The Physician’s Desk Reference also documents, “Absorption… in about 6-8 hours… Crosses the placenta…Found in breast milk…Elimination… in about 4-16 days.”

Assuming the earliest that pregnancy can be discovered is about two weeks, even if medication were discontinued immediately, the fetus would be exposed throughout the entire first month of gestation.

The main organs that form in those early months are the circulatory and nervous systems.

Coincident with the dramatic rise in the use of antidepressant medication is an epidemic of signs and symptoms that are now referred to as Autism Spectrum Disorder.

Discussion
The most recent article, Antidepressant Use During Pregnancy and the Risk of Autism Spectrum Disorder in Children, concluded, “Use of antidepressants, specifically selective serotonin reuptake inhibitors, during the second and/or third trimester increases the risk of ASD in children, even after considering maternal depression.” There was an 87% increased risk.

While discussing the topic, a friend said to me, “I am not a doctor or anything, but it seems to me that if a woman cannot have a glass of wine once in a while, how could a daily drug for the brain be OK?”

Caution is not warranted. Women who wish to get pregnant should discontinue this pharmaceutical treatment for their depression and seek other ways to get relief from stress and anxiety.

Conclusions
Parents are not to blame for this predicament. Pharmaceutical companies are not interested in performing further testing, and doctors have been too trusting in the face of self-serving science, financial incentives, and common sense.

These medications should be highly avoided unless further study proves absolute safety, which seems unlikely.

Top Autism Stories of 2015

Tuesday, December 29th, 2015

An end-of-the-year GoogleScholar.com search for publications using the term AUTISM returned ~ 58,000 entries:
√ Treatment = 32,000 results
√ Diagnosis = 19,000 items
√ Cause = 19,000 records
√ Prevention = 10,000 entries

Here are the stories that represent this year’s salient research and experience (according to TheAutsimDoctor, at least):

December
Reduced GABAergic Action in the Autistic Brain
Evidence of this neurotransmitter showing reduced activity in the autistic brain. The supplement form is not able to cross into the brain However, it is sometimes helpful as a calming agent, though the opposite effect also occurs.

Cell cycle networks link gene expression dysregulation, mutation, and brain maldevelopment in autistic toddlers
“Further underscoring the prenatal origins of ASD, researchers… describe for the first time how abnormal gene activity… may underlie abnormal early brain growth in the disorder.”

Antidepressant Use During Pregnancy and the Risk of Autism Spectrum Disorder in Children
This is a BIG DEAL, to be discussed in a future posting.

November
Transcranial Direct Current Stimulation Treatment in an Adolescent with Autism and Drug-Resistant Catatonia
A possible new (and really expensive) treatment for ASD?

October
Oxytocin ‘Love Hormone’ Nasal Spray Shows Promise in Kids With Autism
Previously reviewed here.

EARLY SCREENING OF AUTISM SPECTRUM DISORDER: RECOMMENDATIONS FOR PRACTICE AND RESEARCH
Someone at the American Academy of Pediatrics gets it.

September
Association Between Obstetric Mode of Delivery and Autism Spectrum Disorder
This research bears out my experience as a neonatologist; the type of birth, per se, does not appear to lead to ASD.

August
Draft Recommendation Statement
Autism Spectrum Disorder in Young Children: Screening
A formal recommendation not supporting a toddler screen for ASD! Discussed in depth here.

A New Interactive Screening Test for Autism Spectrum Disorders in Toddlers.
But, if a screen is used, here is a better mousetrap.

An Autism-Linked Mutation Disables Phosphorylation Control of UBE3A
How gene function/malfunction can lead to downstream CNS processing errors.

July
A Mechanistic Link between Olfaction and Autism Spectrum Disorder
Patients don’t have Sensory Processing Disorder AND autism. Until it’s called something else, the condition is ASD.

Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder
“This is the first study to examine the role of early… behavioral intervention initiated at less than 30 months of age in altering the longer-term developmental course of autism.”

June
Autism risk associated with parental age and with increasing difference in age between the parents
If this is more than a mere association, it provides evidence of the environment interacting on genes (epigenetics).

May
Heritability of Autism Spectrum Disorder in a UK Population-Based Twin Sample
Nature > Nurture study.

April
Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder
Yes, Virginia, early detection and intervention DOES matter.

Prediction of autism by translation and immune/inflammation coexpressed genes in toddlers from pediatric community practices.
A comment from the New England Journal of Medicine: “A Blood Test for Predicting Autism?
It can’t be used for diagnosis just yet, but its findings may form the foundation for a more predictive test.”

Autism Occurrence by MMR Vaccine Status Among US Children With Older Siblings With and Without Autism
Another study proving that ALL vaccinations, given at ANY age, in ANY combination, are good for ALL children, ALL of the time. Lies, damn lies, and statistics.

March
Autism Spectrum Disorder and Particulate Matter Air Pollution before, during, and after Pregnancy: A Nested Case–Control Analysis within the Nurses’ Health Study II Cohort
Higher maternal exposure to toxins during pregnancy, particularly in the last few months, were associated with greater odds of a child having ASD.

The autism-associated chromatin modifier ​CHD8 regulates other autism risk genes during human neurodevelopment
Discussion of epigenetics – how the environment works on genes.

Common polygenic risk for autism spectrum disorder (ASD) is associated with cognitive ability in the general population
It’s not news to the ASD community… “Autism Genes Found to Be Associated with Brighter Minds

February
Shorter spontaneous fixation durations in infants with later emerging autism
Even the youngest children may demonstrate high risk signs. 

A Pilot Proteomic Analysis of Salivary Biomarkers in Autism Spectrum Disorder
An important step in diagnosing and treating any condition, is to have reproducible lab tests to assess risk, degree of involvement, and efficacy of intervention(s).

January
Explaining the Increase in the Prevalence of Autism Spectrum Disorders
The Proportion Attributable to Changes in Reporting Practices
It’s merely reassignment of diagnosis. NOT.

Is the U.S. Prepared for a Growing Population of Adults With Autism?
Since we aren’t prepared for the present growth of children on the spectrum, how could it be possible that future resources will be available?

Conclusion
Promising Forecast for Autism Spectrum Disorders
This editorial, which appeared in a respected medical journal, crystalizes the differences between what pediatricians think they know about ASD, and what parents actually experience. In practice, progress seems anemic and glacial. Autism is rocket science, mired in a political, emotional, and financial morass.

The top autism stories of 2015 are not enough. We need to recognize the epidemic, publish more information that assures vaccine safety for susceptible populations, address causes, safe and effective treatments, possible preventions, and how to address the aging of the autism population. Affected families just need more of everything.

As always, readers are invited to share their thoughts about this research,
and any other scientific papers 
that should be included.

Escaping the Spectrum: Focus Attention Hyperactivity

Sunday, December 6th, 2015

“Teaching is the one profession
that creates all other professions.”

Late November, 2015
Note to the teacher: We will be going down to the Dr. in South Florida.  If you have any new concerns with him academically, socially, etc, please let me know and I can ask him as well.

Response:
The only concern I have is Ollie’s level of attention and focus. I’m not sure if this doctor is even the one to discuss that with. It is extremely difficult to get and maintain Ollie’s attention on any task. I have noticed that as the expectations are starting to rise, Ollie’s lack of focus is becoming more and more apparent. It is really starting to impede his learning… He is really unable at this point to work independently in any way during writing time… he is still very distracted and will often bother others around him when he should be reading…

Later response:
I would love nothing more than to keep Ollie in my classroom all day. Unfortunately, with the level of academic support he is requiring right now, he would have to have someone with him for both the reading and writing block and Ms. Billie doesn’t have anyone to spare for that time. I am proud of Ollie for the work he has done with his letters! I think he will actually start enjoying reading and writing time a little more with the smaller setting and increased support he will receive. Of course I know you wanted Ollie to continue to thrive in the gen ed setting…and I certainly believe that Ollie is still a great fit for gen ed socially; he just needs more academic support right now than I am able to provide for him with me being the only adult in the room. Please let me know what the doctor says, and if he has any additional suggestions that he feels might help…

Mom,
You might (or might not) be surprised about how many of our patients experience similar reports, at this time of year. We are learning that, as children recover from their type of autism, a special form of focus, attention, and hyperactivity problem seems to rise to the top of the ‘chief complaints’ section of the medical record.

In May, when school and homework are less a part of children’s lives, we work on skills and biomedical interventions, which generally provide perceptible, but incremental improvements. In the Fall, more serious choices are considered. Some parents have hired ‘shadows’ – if the school allows them and families possess the resources. Curiously, this option is not always helpful, and can even add additional demands to the classroom situation. After “leaving no stone unturned,” many parents choose pharmaceutical preparations.

To be sure, such a decision becomes a PROCESS, not a solution. Sometimes, it works, which is, obviously, great. Some effects are unwanted, such as weight loss (or gain, depending on med), sleep or personality (“He looked stoned”). There are instances where the drugs can spawn even more disturbing behaviors.

My opinion is to wait as long as possible to initiate stimulant medications. If it takes an inordinately long time to do homework, or there is little self-control (especially in school), and the child >~6-7 y.o., it is understandable that there are parents who want to explore drug treatment.

“Which one? What dose? What side effects?” Such important issues should be discussed with the doctor responsible for prescribing them. And, following the patient. These aren’t antibiotics.

Anyway, by the time a child is >~10y.o., if the school continues to complain or threaten expulsion, or aggression at home cannot be controlled, many families have tried medication.

In some children, there may be a proper place for Concerta and the like. First, however, a complete physical examination and a thorough workup for nutritional, or other metabolic abnormalities should be performed. Alternative treatments, with less addictive preparations, should be evaluated. Finally, during the time away from academic pursuits, whether it is Summer, holidays, or even weekends, drug ‘vacations’ should be explored, as well.

The longer we wait to impose chemical cures, the better the chance that when/if we do have to use them, we see fewer long-term side effects, may use less drug, administer less frequently, with fewer additional combinations, and provide more secure futures for the affected children.

Sincerely,
Brian D. Udell MD FAAP
Medical Director
Child Development Center of America

Some Thoughts on Alternative Medical Alternatives to Autism

Sunday, November 22nd, 2015

Dr. Udell & Vicki Martin RN


This month’s Autism Society of Broward Speaker Series featured autism expert, Ms. Vicki Martin, who gave an interesting and thorough discussion assessing the medical causes of behavior in ASD, and my talk covering some of the latest biomedical treatments for autism.

Purpose – Improve our Understanding of the Range of Treatment Possibilities
Doctors get questions about these more-than-off-label treatments quite often, so it’s necessary to be current about the literature in order to give a learned response. It’s like homework.
I have an opportunity to give something back to The Autism Society of Broward. It has been my pleasure to have served on this Board for over 6 years. This not-for-profit (and, trust me, we have very few $) organization brings services, such as yoga, sensory-friendly movies, and golfing, etc., to the family level.
Public speaking is always a networking opportunity. There are parents who may not know about The Child Development Center of America and how simple protocols may improve outcomes, especially when they are combined with the traditional therapies. Attendees ask questions and learn about our medical practice.
It’s fun to discuss these topics, and more interesting than reviewing epidemiological data that questions whether autism is an epidemic.

Topics of Discussion
These were not necessarily chosen because they are truly the most recent or popular, but mostly because they have been hyped a great deal, lately, by social and other media.

Cannibidiol
Improvements have only been accurately documented, so far, in ASD patients with seizures. Any other use of the product at this time is purely trial-and-error, and the safety of hemp oil extract safety in children has yet to be proven. To the extent that patients may be able to take equivalent dosing, more information will emerge. The myriad of patients who try it, however, complicates evaluation about efficacy.

Helminth Therapy
While this unusual treatment of administering live organisms to successfully restore-reset immune function has been documented in adults with specific conditions, as concluded in a recent review, “Studies are neededto move helminth-related interventions that show promise in animals, and in phase 1 and 2 studies in human beings, into the therapeutic development pipeline.”

Chlorine Dioxide (CD)
Following up on that ‘worms or elimination of worms?’ question was a discussion about Chlorine Dioxide (CD) treatment. I ain’t sayin’ that it cannot/does not work in some individuals, but there are problems.
1. The science is weak and contradictory. There is no supporting research for terms, such as “Parasitological Vaccinosis.”
2. The main proponents, so far, are, the mother of an affected child, and scientist with questionable credentials.
3. Treatment can be risky.
4. Treatment involves a fair amount of resources; including frequent administration (every hour, sometimes), adjustment of dose, and which specific sites on the body to administer a dose (systemic, eyes, ears, rectum, etc.).

Oxytocin
This peptide, which is produced in the brain, has been called the ‘love hormone’, and has been shown to be deficient in some patients with ASD. Animal models have demonstrated improvement, though humans haven’t responded the same way.

The most recent prospective, controlled, double-blind crossover study that involved 31 patients, demonstrated improvement. This has not necessarily been the experience at The Child Development Center of America, where it has been used for over 4 years, yet only a handful of parents continue to administer the product.

Transcranial Magnetic Stimulation
This type of mechanical device has been used for over a decade outside of the US, but has recently received FDA approval as a device for “major depression in adults who failed to improve on medication.” This is an expensive treatment option, in the range of $6,000 – $12,000 or more, and requires daily 1/2 hour treatments.
Adverse effects are listed as fainting, possible seizures, pain or discomfort, mania, changes in cognition, and transient hearing  and memory loss.

A recent review stated, “Though preliminary data suggests promise, there is simply not enough evidence
yet to conclusively support the clinical widespread use of TMS in ASD,
neither diagnostically nor therapeutically.”

Essential Oils
There is a paucity of literature to support the use of these products for patients who exhibit signs and symptoms consistent with ASD. On the other hand, they are relatively safe, have been around since the beginning of civilization, and do not cost a great deal to try. Furthermore, there are many studies demonstrating improvement in processing with occupational therapy and other ‘sensory diets’.

As in many of the other treatments, this has demonstrated the least improvement in our most apraxic and/or disruptive individuals.

Conclusions
Present medical therapies are woefully inadequate.
Many treatment options have been offered, but few have undergone sound scientific scrutiny.
Parents, desperate to help their non-typically developing child will be tempted to pursue less-than-helpful, less-than-safe protocols.
For the lesser affected patients, many forms of treatment will help.
For the most affected patients, such protocols offer only spotty improvements.
More research is needed. Physicians, who are in the best position to understand the complicated science, must understand the variety of presentations of autism and the myriad of treatment options in order to give families the best advice.

Doctors Failing to Understand Autism

Sunday, November 15th, 2015

When faced with the unknown or uncertain, physicians will often rely on language that, while sounding scientific and medical, just restates the obvious or says nothing helpful at all.

“I’m not aware of any literature on that topic.” Does that mean that the clinician has read everything and there isn’t any, or is the doctor displaying ignorance? A better answer would be, “Let me read about that and I will get back to you.”

“I don’t want to give you a diagnosis at this time.” It’s not up to the physician to decide. At least,  there could be a presentation of possible diagnoses, with the statement about a workup and interventions that the parent can initiate.

“It’s eczema. I’ll prescribe a steroid cream.” What is causing the skin rash? And, steroids will temporarily clear up any skin condition.

A 3-year-old wanders in circles and does not play with other children. “It looks like your child has developmental delay.” Stating the patently obvious is a frequent technique to deflect the physician’s lack of knowledge. The oncologist wouldn’t just say, “It’s a lump.”

“It’s not speech apraxia.” If a toddler wants to communicate and cannot say any intelligible words, that IS the name for that symptom. The converse situation occurs when the professional says that child has autism AND speech apraxia. It’s autism.

“I’d like you to come back in 6 months to see how the child is doing.” If that is the only reason that the doctor has for your return, he should be paying YOU for the visit.

“It’s not autism, I’d say more like PDD-NOS (pervasive developmental delay – not otherwise specified).” The DSM 5.0 has been published. The medical establishment has spoken. If a child exhibits repetitive or unusual behaviors and has communication delay, it’s Autism Spectrum Disorder.

“Those special diets are risky and can lead to nutritional deficiencies.” How about checking nutritional status with some appropriate lab testing? Better, check is as part of the initial workup, especially in picky eaters.

“He’s a boy… You speak two languages… She’s spoiled… Your grandfather was that way, etc.” We are in the midst of an epidemic. The child should be thoroughly evaluated for ASD.

“Studies have not shown significant results.” That depends on what research the practitioner chooses to read and believe. And, whether a treatment is worthwhile is best determined from the parents’ point-of-view.

“We can give medication to get rid of those ‘stims’.” One, repetitive behaviors are often communication, so reprimands may cause even more frustration. Two, those drugs are potent and have serious side effects.

“We can give medication for that anxiety.” One, nervousness is frequently appropriate. The affected child is concerned about not having the skills to join the group. Simply depressing the child’s response is not necessarily a good thing. Two, those drugs are potent and have serious side effects.

“We can give… Miralax for constipation… Zantac for refluxantibiotics for everything.” How about a thorough evaluation of why?

“It’s not anything to be concerned about.” The number one lesson that any pediatrician should learn is, “Listen to your mother(s)!” Worrying is part of their job. The child’s physician should perform an appropriate evaluation.

“Those ‘autism doctors’ are just quacks who will waste your time and money.” The parents can see progress for themselves. Families will continue to search for answers when traditional therapies alone do not seem sufficient.

The parents of today’s children who show signs and symptoms consistent with the epidemic of ASD are often more well-read than the doctor. These questions should spark interest on the professional’s part to offer more than lip-service to such a serious situation.

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