Archive for the ‘News-Maybe-Worthy’ Category

Real Autism Awareness 2015

Thursday, April 2nd, 2015

Autism Awareness is not just about slogans, license plates, Autism Walks, or assorted news stories. The term carries a variety of implications, including:

Public Opinion
Awareness will come when we quit arguing about whether there is an autism epidemic or not.

We need to stop wasting time blaming Andrew Wakefield (the doctor from England who had the temerity to question the vaccine gods) for why we don’t have a cure for autism. If you want to blame someone, start with Leo Kanner and Bruno Bettelheim, who concluded that it was the result of faulty parenting.

Political / Legislative
This past August, “President Obama signed into law the Achieving a Better Life Experience (ABLE) Act, which will allow families with children with disabilities to save for college and other expenses in tax-deferred accounts. This piece of legislation is an important step toward empowering people with disabilities to achieve independence and affirms self-sufficiency.”

Insurance companies need to become more realistic about what services are required. The traditional therapies are effective, and should be reimbursed appropriately.

Autism awareness includes dealing with the situation of an aging ‘Spectrum’ population, and the resources that will be required.

Scientific
There will be more enlightenment when we stop focusing on the ‘anti-vaccine kooks’ and start researching an intelligent answer to the question, “Are all vaccinations good for all children all the time?”

We need to be cognizant that ASD continues to increase, and research has not yet uncovered the most basic questions of “Why, Who, or What?” “Where and When” is right here, right now.

Autism awareness includes mindfulness of the environmental impact.

Personal
Speaking of ‘awareness’, how about when a parent can go to the park and sit on a bench while the child plays (or tries to play) with the other kids?

Another example is the child’s awakening. Parents are thrilled when they no longer worry about elopement when the family is outside or in a crowd.

Finally, REAL autism awareness is when your child gives kisses and says, “Mommy, I love you!”

Autism Conference Spring 2015

Sunday, March 15th, 2015

The Medical Academy of Pediatric Special Needs provides this semiannual standard-of-care meeting, which is dedicated to teaching physicians and other practitioners who care for patients with ASD.

Various educational courses were offered, covering a variety of interests and experience. This being the 7th conference, an entire day was reserved for difficult clinical cases, discussed among ~30 doctors, who had previously passed the basic science courses.

Mitochondrial functioning played a significant role in this year’s presentations. The myriad of functions involved with these cellular power-plants was explored. This is a complicated topic that includes genetics (mitochondria even have their own chromosomes), over- under- and malfunctioning, environmental effects, cell-to-cell, cell-to-system and cell-to-environment interactions.

Impressions:
Prior to one of the lectures, there was a wonderful moment when Dr. Bob Sears, Dr. Jerry Kartzinel, Dr. James Neubrander, and Dr. Dan Rossignol were among those discussing the recent measles epidemic and what their practice was doing to address the situation. That conversation would have made a well-hit youtube video!

Another time I found myself eating lunch with Dr. Michael Elice, Dr. Stuart Freedenfeld, and other popular autism practitioners. There was a great sense of camaraderie and common purpose. This is one the few social experiences when doctors, such as myself, are not derided for our unpopular opinions.

Any new treatments?
Dr. Sid Baker, a true pioneer in the practice of the biomedical treatment for ASD, presented a wonderful historical perspective. Because of an earlier focus on autism as a genetic disorder, Dr. Baker opined that, “The last ten years have shown very little progress in the way of understanding and treatment of autism.”

One frequently discussed off-topic topic was the lack of research and safety of chlorine dioxide (ClO2), which is touted on the web as a helpful treatment. It is supposed to work by ridding the body of parasites. Ironically, however, one of the more popular new treatments involves helminth therapy (giving parasites to patients) to re-invigorate the immune system.

Conclusion:
It would be preferable if participants could return from such an educational experience with a list of novel therapies for our most challenging patients.

For now, learning key tricks and tips that address negative behaviors, or gut health, for example, are the order of the day. We learned about more precise lab tests, key findings that could point to more specific therapies, and important metabolic pathways that will help our patients, if not today, soon.

We consider what avenues to pursue, and those that need further evaluation. This organization is dedicated to providing well-researched medical solutions.

Because autism is so widespread, misunderstood, variable and mysterious, the ability to network with international experts and ‘pick the brain’ of those in the trenches is the most valuable feature that the conference provides.

“It’s supposed to be hard. If it were easy, everyone would do it”
Tom Hanks in A League of Their Own

Where Have All Those Autism Treatments Gone?

Sunday, March 8th, 2015

Secretin, OSR, Namenda (memantine), Bumex (bumetanide), Actos, Spironolactone, and more, have all been prescribed to improve the signs and symptoms that ASD individuals experience and display. Some are only used in rare circumstances, others are no longer even available. Now, it’s GcMAF.

The Situation:
For several years, that macrophage-boosting blood product has been used to improve immune functioning in various conditions, including ASD. There have been reports of successful amelioration of negative behaviors and facilitating communication.

At The Child Development Center, there have been 25 patients who received the product, either by subcutaneous or sublingual route. As reported here, ten of the children improved enough for the parent to re-order a ~$1000US solution. Improvements were reported in cognition, communication, and even toilet training.

Without any explanation regarding why the company no longer produces, GcMAF.eu now redirects the user to GcMAF.se (France to Switzerland). The site has the following disclaimer:”… it is not possible to purchase GcMAF here… A dozen companies have claimed to make GcMAF. Most of them failed…”

The website offers alternatives that are less than reassuring. “Immunobiotech.eu, … the most professional company in this field.” “An Israeli company was offering GcMAF at $1,000 a shot, but many of the people using it did not believe it worked. It was probably inactive.” Or, they plainly disparaged the product. “Saisei Mirai – a Japanese company… Somewhat risky to inject in our opinion, and their research papers don’t seem to show good results”.

The Outcome:
Presently, when one door closes on the medical treatment of autism, there are few remaining ones to explore. Conventional prescriptions gain a stronger foothold, no matter how limited they perform, or how serious are their side effects.

Professionals feel compelled to assist in ameliorating aggressive behaviors with strong CNS medications, such as Abilify, Risperidone, or even Zoloft, Prozac, and Klonopin. No medication promises to assist the acquisition of speech and language.

Alternative treatments, which may carry reduced evidence of usefulness or safety take a stronger hold, as well. Parents who are seeking improvements are neither foolish nor ignorant – they are desperate. Families are left to evaluate anecdotal reports and Internet stories.

The Conclusion:

A great deal can be learned by the experience of those treatments
that have become less popular, or even extinct.

With an ever-increasing incidence of ASD, more therapies are bound to be invented and evaluated. Parents are not going to give up their fight simply because they are admonished about being ‘unscientific’ or ‘over-‘ emotional.

As more professionals experience affected patients, newer trials are bound to take place. When pharmaceutical companies see an improved return on their investments, they are more likely to join the effort. Increased prevalence boosts enrollment in scientific research.

There is a common theme of gut improvement and addressing immune function. Mostly, what the storage locker of trial treatments contains, are some important keys to understanding, treatment and prevention.

The Dress Color Debate and Sensory Processing in Autism

Sunday, March 1st, 2015

Image Credit: J. Jastrow (1899)

It became headline news, this week, when Wired magazine reported “The Science of Why No One Agrees on the Color of This Dress.” The usual reaction by those involved in the autism community has been, “Tell us something we don’t know!”

The terms visual-, auditory-, and sensory- processing ‘disorder’ have all been invented to describe conditions that patients experience. Rather than representing separate maladies, unusual patterns of filtering are part of the fabric of ASD.

Part of the hoopla is the controversy surrounding the ‘correct’ color of the dress. Colorblindness is mostly attributed to the lack of color-producing rods in the retina, not a processing difference in the brain. In this example, ‘normal’ people disagree.

The other factor is that the present conundrum is unlike the old-time Rabbit-Duck optical illusion (pictured). Once you are told what to look for, the type of animal makes sense. In this case, it is almost impossible to understand how the dress could be any other than the colors that we perceive.

The Wired article explains how light enters the eye and is reflected, wiring in the brain, ambient light, etc., and concludes, “… your brain tries to interpolate a kind of color context for the image, and then spits out an answer for the color of the dress.” With all of those parameters, it is difficult to understand how there is ever any agreement.

Little is explained about how we arrive at an individual conclusion. This example highlights the paucity of information explaining why humans see the dress color differently. Such a situation underscores the difficulties understanding already-altered sensory processing in people with ASD.

How many times have parents, therapists and teachers asked, “Didn’t I just tell you that color?” Or, “I can’t understand why he’s such a picky eater.” “She smells everything.” It rarely occurs to us that an affected child senses a common item differently.

The controversy about the tint of the dress and the frustration of those who see it differently is but a tiny example of the sensory processing differences experienced in the face of ASD.

Whatever the underlying reason for variation in the response to the pictures of those dresses, it helps remind the neurotypical population how differently we all see the world.

To Vaccinate or Not to Vaccinate?

Saturday, February 7th, 2015

The measles outbreak that started in Disneyland has generated a fair amount of activity at The Child Development Center lately.

Many of our patients are either un- or under- vaccinated, according to the Vaccine Gods, so an increase in a preventable childhood disease in the U.S. is a very important healthcare issue.

In response to the media stories, and with the intention of addressing parents’ concerns, The Center emailed our patients.

The advice that was offered:
a. If the child has never had a vaccination, it is best to “bite the bullet” and go ahead with an MMR. We’re in the middle of an outbreak and it’s a very small world.

b. If the child has been previously vaccinated for MMR, you could get  “measles-mumps-rubella titers”. This is a blood test to determine if the child is still immune to the diseases, so it may be OK to hold off for now.

There were a variety of interesting responses.
Parent: “Thanks, Dr. Udell, for the heads up.”
Dr. U: You’re welcome. I’m just a messenger. Parents are the ones who have to make the final decision.

Parent: “What if the child has antibodies to eggs (allergy)?”
Dr. U: That is a big problem. I would look over the most recent laboratory tests and, depending on the child’s present state of health, and other findings, possibly still have to recommend. For what it’s worth, two of the products are actually grown on chick embryo, and almost all of our yolk-and/or-white-positive patients are negative to chicken. The German measles strain is grown on lung tissue derived from human fetus. We don’t test for that.

Parent: “Can’t you break up the shots?
Dr. U: No, the company that used to produce separates stopped years ago.

Parent: “My child was severely damaged by that shot. I’m surprised that you made this recommendation.”
Dr. U: It’s situational ethics, in a medical setting. I sympathize with your plight. Not only is there conflicting research; cases, such as yours, are completely ignored. Nevertheless, measles carries a 1/1000 chance of encephalitis (brain infection). 

Discussion:
After listening to so many complaints of proximate injury to an inoculation, it seemed that the best advice was to hold off vaccinating until the child improved, and/or the cause(s) of inflammation was discovered. There was little evidence of a rise in disease, so I felt less concern for the ‘herd’ than the family sitting in my office. The plan was to vaccinate a healthier child in 1-2 years, utilizing a judicious make-up protocol, if the parents agreed.

Each family will address this news differently, and act on their decision based upon what they consider as their child’s best interest. Questions and concerns persist. An epidemiologist just published a York Times editorial suggesting that there would be increased compliance if it were more difficult to obtain an exemption.

The line between the ‘good of the many’ and the ‘good of the one’ has shifted. Once the seal is broken, so to speak, and fewer than ~90% of the susceptible population is protected, there can be no accurate prediction of whether/where/when/how severe another outbreak will occur. The choice returns to the ‘good of the one’, so prevention is paramount.

The reality is that, if the AMA, AAP, FDA and CDC would express less dogma, become more sympathetic to those who claim injury, make fewer errors, and perform prospective studies to demonstrate efficacy and universal safety, parents wouldn’t be forced to make such a crucial decision on their own.

Ten Noteworthy Observations about People with Asperger’s

Monday, February 2nd, 2015

reitman1Recently, I had the honor and pleasure of being interviewed by Dr. Hackie Reitman, an orthopedic surgeon, ex-prize fighter, and now author and producer. My role was to provide additional clinical information about his newest endeavor to address the difficult challenges met by people with Asperger’s syndrome.

The eclectic doctor has written and produced a soon-to-be-released movie entitled The Square Root of 2. Plus, he is in the process of publishing his enlightening book, “Aspertools: The Practical Guide to Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity,” to assist patients, families, and the public in understanding what it is like to live with Asperger’s, and helpful strategies for success.

Notwithstanding the official demise of the oft-used moniker describing a like-group of individuals, this compilation covers some frequent questions and observations:

10. As with autism, which is due to a variety of causes with varying presentations, there isn’t one kind of Asperger’s syndrome.

9. The appearance of any lack of cognition or empathy often does not reflect the affected individual’s reality. They experience emotions, like the rest of us, but do not necessarily exhibit them in a typical manner. Sometimes their frustration can boil over into extreme anger.

8. People ‘on the Spectrum’, who are able to communicate and aren’t aggressive, are considered ‘high functioning’. When Dr. Asperger described the first cases, however, earlier cognition and language differentiated his patients from ‘regular’ ASD.

7. Everyone who doesn’t get a joke doesn’t have Asperger’s, and many Asperger’s patients have a sense of humor.

6. Eye contact can be fairly difficult in Asperger’s. Patients often complain, “Do you want me to talk-listen to you, or look at you?”

5. Sensory issues are a major problem, and difficult for the neuro-typical individual to appreciate. Fluorescent bulbs are a distraction, certain sounds can be like chalk-on-a-blackboard, perfume may be nauseating, taste can be very picky, and just the thought of touch may become frightening.

4. Individuals can learn from a trusted friend, family member, or teacher.  However, many educational environments produce a distracting cacophony of sensory issues. Knowing that a highly social situation will be very anxiety producing makes the sufferer easily distractible and leads to poor focus. It’s not necessarily ADHD.

3. A narrow range of interests and repetitive behaviors are not always obsessive-compulsive behaviors, they are part of the condition. That is why the usual psycho-schizo-antianxiety medications are often ineffective in Asperger’s patients.

2. This is not a diagnosis ‘du jour’. People who experience this condition know it, and are usually relieved when they find out the reason(s) for their differences.

1. As with other ‘Spectrum’ patients, there are often additional somatic issues involving the gut, allergies, and nutritional deficiencies. A thorough medical workup with appropriate medical intervention is frequently quite helpful in relieving some core signs and symptoms.

Dr. Reitman, who is the father of an Aspie, is helping to design a better understanding and treatment of this mysterious condition. It’s comforting to know that, like Dan Marino, Ernie Els, and Jim Kelly, the autism community has another true champion on our side.

Autism, ADHD and Circumcision

Sunday, January 18th, 2015

New information has been forthcoming from a Danish database lately, specifically involving autism. This study represents data involving more than 1/3 million children, entered from 1994 to 2003 .

As might be expected, an eye-catching array of media headlines followed the paper entitled, “Ritual circumcision and risk of autism spectrum disorder in 0- to 9-year-old boys: national cohort study in Denmark”.

The Results:
In both the older and younger groups of circumcised boys, there was an increased relationship to ASD. Some adjustments (birthweight, APGAR score, etc.) were accounted for, while other known, possible associations were not (pain relief, living near pollution, diet, e.g.).

Additionally, circumcised boys in non-Muslim families were also more likely to have an ADHD diagnosis.

Other Research:
A 2013 study looked at the increasing incidence of ASD since acetaminophen (Tylenol) has been routinely used for pain relief during circumcision. The authors suggested “… the need for formal study of the role of paracetamol in autism.” In other words, they looked at the problem from the other direction; and when pain relief was provided, autism increased.

Discussion:
The Danish investigation contains a most glaring conclusion that makes the data-in-question eminently quotable, “We confirmed our hypothesis that boys who undergo ritual circumcision may run a greater risk of developing ASD.” I wrote to ask the principle author, Dr. Morten Frisch, about this.

The doctor took the time to respond to a number of questions about the information. He seemed to be somewhat sensitive that such controversy has surrounded these (admittedly) two highly emotional topics, and he is taking plenty of outside criticism. Furthermore, Dr. Frisch has assumed an “I’m-just-the-messenger” attitude about the conclusion.

For me, a major sticking point is a design anomaly which brings the entire report into question. Specifically, children who hadn’t been circumcised but were autistic were considered as not autistic until they got the operation, for the purposes of the data analysis.

For example, a seven-year-old who already had autism didn’t get classified that way, until he was circumcised at 7, (which is clinically impossible).
My question, “If a study shows that I am an architect, not a doctor, isn’t the study flawed?”
Dr. Frisch’s response, “No, in your example the methods would not be ’flawed’, but ‘imprecise’.” Either word – it’s inaccurate. The product only represents a mathematical reality.

Conclusion:
Male circumcision and autism are both very controversial issues. Supporters for various points-of-view will use self-selected segment(s) of the data to fit their particular pro or con argument.

The practice of male foreskin removal is decided according to family, friends, folklore, culture, customs, and cosmetics. The present medical evidence is far from conclusive.

Regarding the cause and prevention of autism, the more significant medical information is that vigorous scrutiny and intervention in a young infant’s nutritional and developmental status is the most successful means to fend off possible delays.

As for the present study? “There are lies, damn lies, and statistics.” (Mark Twain)

What Causes Autism – 2014

Wednesday, December 31st, 2014

A question and an answer. This is number two on the list of most-asked questions of this pediatrician. Number one = “Is there really more autism?” Number 3 = “It isn’t connected to the vaccinations, right?”

Here is this year’s evidence implicating our polluted environment:

Pesticides – One expert said, “Until about five years ago, virtually all research on autism assumed that the disease was entirely genetic in origin, and that environmental exposures did not play a role… Rising rates of autism and failure to find genetic causes despite a multitude of very large genetic studies have led to a major shift in focus in the field. … These chemicals are a solid lead that needs to be followed.”

In June, Scientific American published an article entitled, Autism Risk Higher Near Pesticide-Treated Fields.

Glyphosates (Roundup, by Monsanto) – Not only could the ubiquitous use of this toxin, used to increase the yield of harvested wheat, contribute to a dangerous load for susceptible fetuses, newborns and toddlers, it could explain the reason that so many feel improvement from a “gluten-free” diet.

Genetically Modified Foodstuffs received a stamp of approval, on the other hand, from the Genetic Literacy Project.

Environmental Factors, in general, have shown a relationship to autism in a recent research.

Electromagnetic Fields and Radio Frequency Radiation  – Based on the recent information provided by the remarkable Dr. Martha Herbert, these international authors felt compelled to write to the Pediatric Journal of Neurosciences, “An epidemiological study is warranted in order to explore the possible link between the prevalence of autism and the extent of electromagnetic pollution.”

The overuse and injudicious use of antibiotics continues to raise concern. Gastrointestinal health is being actively studied as a key cause of autistic signs and symptoms.

Exposure to steroids continues to make its way into the literature. Our offspring did not recently mutate, and there are a myriad of reasons why there has been increased pre- and post- natal exposure.

Prenatal exposure to anti-seizure medication was reported as a cause of autism.

Childhood Vaccinations – The controversy regarding the pros (they DO) and cons (they DON’T) rages. The most compelling answer would be provided by a prospective, randomized, controlled, double-blind, cross-over study. Who wants to put their child in the control group?

Heavy metals were reported as an environmental toxin associated with ASD in Dr. Rossignol’s thorough literature review.

This epidemic is due to the perfect storm of susceptible individuals in a poisoned environment. Now, if we could just figure out who carries the highest susceptibility and which agents are the most toxic.

When Professionals Disagree about Autism

Monday, December 22nd, 2014

Parents strive to do their best for all their children, and this is especially challenging for those with special needs. So, families seek assistance from assorted channels; including books, other parents, therapists, teachers, professional practitioners, and of course, the Internet.

Inevitably, discussions arise about the ‘best way’ to handle specific situations, including the core domain difficulties of social isolation, repetitive motions (‘stims’) and communication.

Due to the enigmatic combination of signs and symptoms that presently fall under an Autism Spectrum diagnosis, there are usually more opinions than the number of authorities involved.

Conflicting information emanates from various sources:
Often, child neurologists are negative about practitioners who offer alternative medical interventions. There has been little change in the advice that they have offered for the past 25 years. Their information is based upon children who were previously put into mental institutions with other ‘retarded’ individuals.
What is the parent of a 5-year-old with apraxia to do? “Get more therapy!” Really? That’s all you’ve got, doc?

Likewise, pediatricians are generally clueless regarding ASD. Whenever a professional concludes, “We should wait for 6 months or so, to give a diagnosis,” parents should seek more substantial advice. What other medical condition is assigned this situation? Certainly not ear, throat or sinus problems, which appear to require immediate antibiotic intervention, regardless of a fever or other confirmatory signs.

Specialists, such as gastroenterologists, allergists, immunologists, pulmonologists and dermatologists seem to have tunnel vision, when it comes to autism. ‘Constipation’ and ‘eczema’ are descriptive terms, not astute diagnoses. Steroids are short-lived band-aids. Miralax® and Prilosec® are downright dangerous.

Psychiatrists, developmental pediatricians, and psychologists are considered experts in assigning an accurate diagnosis. However, RisperdalAbilify, and Adderall never made any child speak. Plus, there are a multitude of negative side effects.

Speech and Language Therapists are the authorities who have been on the front line of the autism epidemic. Children who do not speak are apraxic – period! Advice, such as, “He doesn’t want to speak,” is meaningless. “Mommy, I want juice,” is easier than dragging a parent to the refrigerator. The child would say it, if the circuits worked correctly.

Occupational and physical therapists should be a mainstay, until fine motor skills become age-appropriate. If there were a supplement or medication for such abilities, we would all take a pill and get piano lessons. In the meantime, it takes practice, practice, practice. Children who avoid handwriting lessons are not ‘easily distracted'; they simply don’t wish to ‘suck’ in another activity that other kids tolerate or even enjoy.

Behavioral therapists who claim that a young child is too disruptive and requires medication should seek other employment. Similarly, assigning blame to the family for inconsistent or incorrect responses is not helpful. The more challenging the behavior, the more that a professional should seek the cause and treatments.

The Internet is a collection of stories, with little supporting information. Parents should seek sites that use hyperlinks to actual studies and avoid those with quick fixes or magic remedies. If it worked, we would know about it.

Other families are helpful, for sure. However, their experience is limited to the number of children, their ages, and their condition. No matter how well-meaning, the information needs to be taken with a great deal of salt.

The solution to all of these various expert opinions, is aided by an experienced medical practitioner who has cared for many patients and listens. By taking into account the history, physical, laboratory findings, and previous treatment regimes, a framework for real progress can be constructed.

Ten Ways Pediatric Neurologists Can Help Autistic Patients

Monday, December 8th, 2014

With all due respect to the intelligence of physicians who take specialized training in child neurology, it appears that there is often some disconnect between their knowledge about autism and the approach to the families and patients affected by this modern epidemic.

10•Making the diagnosis and giving some tickets for therapies is not enough. Questions such as, “How did my child get this? How many get better? What other things can we do? Are there any tests? Where can I go for more information?” are sure to follow the diagnostic impression. At least, provide useful answers for those interrogatories.

9•The child neurologist has the opportunity to assess the risk of anesthesia versus the poor yield of an MRI. Likewise, assisting in the consideration of a short-term EEG, when there is no indication of seizure activity. Those technologies are not a diagnostic workup.

8•There is more than one kind of autism. There should be careful exploration about specific difficulties with the skin, gastrointestinal system, or frequent infections.

7•Neurologists are in a position to provide valuable assistance regarding various alternative treatments’ risks and expense. An off-hand dismissal about therapies to address other co-morbid conditions does not enhance that specialist’s stature in the eyes of the parents.

6•It might be helpful to suggest simple, possibly helpful treatments, such as dietary restrictions. What is there to lose? For the physician who is truly concerned about key deficiencies, this would be a good opportunity to check the child’s nutritional status with some blood work.

5•Doctors who continue to repeat, “You are doing a great job,” at each visit, with little documentation of change, are less likely to experience further visits.

4•In addition to the usual Fragile X-boy-test and Rett’s-girl-test, the neurologist can order a ‘chromosomal microarray’. Copy number variation affects up to 15% of ASD patients. Insurance companies pay for this. Although the results may not be valuable today, that knowledge may be quite important as our understanding about autism evolves.

3•A screening laboratory evaluation for anemia, kidney, thyroid, and liver status may yield a great deal of information. Even if the busy doctor cannot act upon abnormalities, they can be conveyed to the pediatrician.

2•Expressions such as, “I’m willing to say developmental delay,” or “We have to wait to give you a diagnosis,” are for the previous century. In young toddlers, communication is in its most formative stage. “Let’s err on the side of caution, and make sure that you get S&L, OT, ABA, right away.”

1•There are studies to show that patients can recover. Knowledge about that research and successful outcomes provides real hope for bewildered parents.

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Brian D. Udell MD
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Davie
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