Posts Tagged ‘autism puzzle’

Patient Testimonials about Biomedical Autism Treatments

Sunday, October 4th, 2015

Every so often, my beautiful and patient wife, Jackie, reminds me that the service websites that she searches contain letters and feedback from clients. “It’s not just advertising,” Jackie points out, “there are key comments that help me make my decision.”

In the spirit of helping other potential families decide about providing biomedical interventions for their non-typically developing children, here is some recent correspondence concerning the work at The Child Development Center of America. (names changed)

Letter from a teacher:
♥ …Also, just wanted to let you know-Billie is doing AMAZING! Therpist2 is wonderful with him. Therpist1 was lovely and worked well with Billie, however, Therpist2 has been getting him to do things that I did not see last year at all. He is trying to communicate more with me and with the other students. Billie is happy and engaged in learning when Therpist2 works with him. She is a lovely lady and so good with him. I am so pleased with what he is doing in class. Tomorrow we are going to show his science project during class – he did a great job on the assignment.
Therpist2 and I were brainstorming ideas for Billie to participate in the event at the end of the year….
Posting on Facebook:
♥ Doctors don’t know everything.
In February of 2011, the lead neurologist… told us that our oldest son (then 2.5 years old) would only continue to regress to the point where he’d become so aggressive we’d have to medicate him (which he showed no aggression at the time) and that he threw up every day bc he was autistic, cried all night bc he was autistic, and while he didn’t have a crystal ball, he said he’d probably eventually need to be institutionalized. He said he was 100% confident in his diagnosis.
Through reading and research, a second opinion and holistic approach guided by Dr Brian D Udell, extensive tests on food sensitivities and bacteria imbalances (due to antibiotic abuse from his previous pediatrician) a radical change in diet, faith and determination we reversed that diagnosis and restored his health.
♥ Fabio is responding well to the B12 shots. We are at 0.08ml three times a week for two weeks now and he is doing well. The better days are the days of the shot, then 2nd and 3rd day in between shots, he gets a little silly and extremely sensitive at the mouth area (he puts all his fingers in his mouth). Would it be ok to give him a shot every other day? I feel the effect of the shot wears out the days in between and as a result we see the silly behavior and sensitivity…
♥ Hi Dr. Udell, just wanted to show you an example of a good day for Bobby outside of all the movement you constantly see in your office… On a different (positive) note, see pic below at the School Award Assembly. Bobby walked up from the back of the cafeteria and up the ramp on to stage by himself, waited for all the other kids to get in position for pic and walked down. Huge difference from last year, he had someone with him the whole time. It was great to see all that independence growth from one year to the next!
♥ I just wanted to give you my perspective on what I am observing with Pat so you can understand why I am so adamant about increasing her dose back to the 3cc’s on Fluconazole.  She was a straight A student last year on this dose and is now struggling this school year.  I don’t know what it is about this medication but, it is magic for Pat and keeps her focused and on track.
Thanks for your help…
♥ Hi Dr. Udell. I wanted to update you on Darien’s behavior, constipation and my opinions on the Diflucan. We last saw you Sept 15.
On Sept 16, his behavior got him sent home from preschool for the day.
He was miserable Sept 17-19, constantly repeating “you didn’t say something?” and “nothing hurts?” And having tons of outbursts. The 19th was the worst. I took him to a first visit with his new play therapist and he was screaming and throwing things.
I started the Diflucan on Thursday the 18th. Stating Saturday the 20th, I have had my kid back again. He has been happy. The sensory stuff is still there but very toned down from last week. Overall, I have seen a HUGE improvement this week.  Huge…
♥ We are out of probiotics and have been for a week. We have noticed an increase in crying and pain with Robert. He also had loud farts with terrible smells.
♥ Jose is doing good. He pooped with the magnesium…
♥ I wanted to share this with you, it is about Henry and his horse riding therapy. He is doing a little better every day. Thank you for being part of our journey.
♥ Just some pics of Stan…he really is doing so much better with the htp. (5-hydroxy-tryptophan)
♥ Hello from Nassau! Sheena has been doing quite well since our visit. The Benefiber is WORKING !!!! She has a poop most days. It is formed but not hard, just pointy! … So she is doing well and we are grateful. Take care and see you in May.
♥ From a non-profit foundation “dedicated to providing …children in foster care with enriching activities, opportunities and experiences.” Here’s a great resource for all of us! “10 things every pediatrician should know about children in foster care”
♥ From Dr. Robert Melillo, author of Disconnected Kids, many tweets about “10 Things All Pediatricians Should Know About Autism” and “The Law, Antibiotics, and Autism“.
Comments about this blog:
♥ Everything is very open with a very clear clarification of the issues.
It was definitely informative. Your website is very useful.
♥ I like the valuable info you provide in your articles.
I will bookmark your blog and check again here frequently.
I am quite sure I will learn a lot of new stuff right here! Good luck for the next!
♥ I read a lot of interesting articles here. Probably you spend a lot of time writing.
Patient services:
♥ Hi Dr Udell, Karen & all your wonderful staff… for your help in the process of getting Maria switched to a bus that has AC/Heat capability… We are so thankful to God for good people like you guys that care and have helped us in the journey of advocacy for our little ones so that they can have all the resources available to be able to become functional & exceptional adults someday…I demanded that they read the letter & reviewed the case again that they realized their mistake & even apologize for their ignorance. Maria can finally resume classes & continue to enjoy learning her ABCs. Thank you again, very much, for ALL THE WONDERFUL WORK YOU DO!
♥… We are just so eager to get his little gut ready for the LDN and B12 shots……again thank you for everything!!  Our regards to the whole staff….they are awesome. You definitely give parents hope…by taking the time answer all of our questions and concerns….we are so thankful… are amazing!!

Perhaps, I’m just ‘preaching to the choir’. For years, reknowned ABA guru, Dr. Doreen Granpeesheh, has spoken about the improved outcome when parents combine ABA with biomedical techniques. Similarly, prominent researcher, Dr. Martha Herbert, has emphasized the whole body conditions that can be addressed in this manner.

By combining the time-tested improvements from ABA, OT, PT and S&L therapies, plus other emerging techniques, doctors can learn to successfully treat children diagnosed with ASD.

Notes from the Autism Education Summit

Sunday, September 27th, 2015
theo and me

September 26, 2015 Dr. Theoharides and me

In the beginning of the autism epidemic, conferences included practitioners and families interested in assisting patients in their journey toward recovery. As the information has become more extensive and complicated, the needs and expectations of various parties have spawned more specific meetings.

Tufts University professor, eminent autism researcher and program sponsor, Dr. T C Theoharides, invited me to lecture at this year’s Generation Rescue conference in Dallas. It was a chance to speak to, and with, a worldwide audience of over 700 parents whose children had an ASD diagnosis.

An Alternative Biomedical Approach to Autism Spectrum
A group of ~ 50 ‘newbies’ attended. The topic was chosen because I wished to simplify the issues and offer hope that, despite what the conventional doctors have declared, recovery is possible.

The take home messages were:
1. Traditional medicine only offers bandaids for very complicated signs and symptoms. When the only tool that a person has at hand is a hammer, everything looks like a nail. The usual medications are very powerful with lots of side effects, and provide little in the way of genuine relief.

2. There is more than one way to skin a cat. Many of the other ‘DAN’ practitioners seem to utilize more complicated and expensive protocols, not necessarily superior to the approach that I find most successful. A basic workup was offered to identify laboratory variances indicating less-than-optimal health. Addressing those areas and improving energy with techniques that are not difficult to understand or institute, usually leads to significant progress.

3. Ultimately, autism really IS ‘rocket science’. There are multiple causes and a variety of presentations that even experienced practitioners are hard-pressed to understand and treat. By understanding the basics, parents can lead a team of professionals to get their affected offspring on the right track towards an optimal outcome.

Other Lectures
For 3 days, there was a full roster of presentations covering cause, effects and treatments. In addition to Dr. Theoharides, world-renowned researchers and practitioners, such as Drs. Dan Rossignol, Richard Frye, Jerry Kartzinel, and Anju Usman, gave their learned and extensive points-of-view about ASD.

It is my belief that sometimes the lectures were too demanding. Although the audience was quite intelligent and knowledgable, they seemed to expect more in the way of treatment options for their child, than basic science.

Jenny Group

Ryan Blair, Jenny, Jodi Gomes, Ryan&Dawn Neufeld, Jacqueline&Chris Laurita

Jenny McCarthy
Cue the music, lights, cameras, video screens and action! To this crowd, the lady is a rock-star. She definitely delivered a great message, filled with personal anecdotes, humor, empathy and hope. A panel discussion followed, consisting of famous, and not-so-famous, warrior moms and dads. This was certainly one of the conference highlights.

When I announced on Facebook that I was attending this conference, one of my ‘followers’ wrote, “I think I’m going to unlike this page now,” presumably because of the ‘misguided’ position of Generation Rescue regarding the issue of vaccine injury.  Talk about the polarized world of autism diagnosis and treatment.

Bottom line – I would definitely recommend this yearly conference to parents who have the time and resources.

Sensory Processing Issues in Autism

Sunday, September 20th, 2015

What do parents mean when they express concern that their child “has sensory issues?” Even the DSM 5.0 now lists sensory processing differences as a core diagnostic symptom. A new study appeared last week showing that children on the spectrum actually respond to odors differently.

Researchers “measured the non-verbal non-task-dependent sniff response concurrent with pleasant and unpleasant odors in 36 children—18 with ASD and 18 matched typically developing (TD) controls. We found that whereas TD children generated a typical adult-like sniff response within 305 ms of odor onset, ASD children had a profoundly altered sniff response, sniffing equally regardless of odor valance.”

SmellParents may notice that an affected child smells everything and displays unconventional preferences. Some children do not even notice yucky odors, such as oral liposomal glutathione, or refuse multivitamin preparations that seem to smell just fine.

Previously, such information has provoked the proposal of a new syndrome, e.g., Visual Processing Disorder, Auditory Processing Disorder, etc. Is this Olfactory Processing disorder?

The Other Senses

Vision – parents notice eye stimming, such as staring at ceiling fans, spinning wheels or video screens. Temple Grandin has even highlighted a problem with fluorescent lights; that the cycling annoys those who are visually affected. Therapies targeting this sense have been shown to be effective.

As a clinician, visual ‘stimming’ needs to be distinguished from absence seizures, which have a vastly different cause, treatment, and potential downstream behavioral consequences.

Taste – Many parents report that their children are extremely picky eaters. Sometimes, the problem is with texture (such as crunchy, mushy, etc.) or temperature. Patients who experience speech apraxia often have difficulties with oro-motor functioning. Chewing may be a problem that necessitates blended foods and even more restriction in variety and nutritional value.

Affected toddlers who continue to drink a great deal of PediaSure® are often either allergic and/or addicted to that product because of a leaky gut, and weaning can be a slow, difficult process.

Hearing – Sometimes, affected children put their hands of over their ears as a ‘stimming’ behavior.  It can be communicating avoidance and so affected patients are literally putting their ‘head in the sand’. Often, is it due to certain frequencies (another child crying, a siren) or amplitude (vacuum cleaner, hand drier) that seem to set off a negative or aggressive behavior.

Other times, it may be due to processing, when the child doesn’t turn to voices or their name. Weakness in cognition can be another underlying cause for this difficulty. In any case, and similar to the other sensory conditions, auditory processing is definitely disordered.

TouchTouch – It appears that many affected patients have issues about being touched. Parents may report that they can only cut the hair or nails while the child is sleeping, or not at all. Some patients have complained that their skin feels like it’s on fire, while others do not seem to even notice a significant trauma. Repetitive hand washing, or tantrums from a wet shirt may be symptom of this issue, due to the child seeking input, rather than this being an obsessive-compulsive behavior.

Challenges in this sense include proprioception – the unconscious perception of movement and spatial orientation controlled by nerves within the body – as well. Some children will bounce for hours – on anything from the trampoline to the doctor’s couch – to address this issue. Temple Grandin even invented her own ‘hug machine‘ to alleviate her difficulties in this sensory realm.

These are issues indicative of crossed/missing/inadequate signaling in the CNS. Interventions that decrease inflammation and produce more efficient metabolism improve health. That leads to changes in these sensory signs of autism; as well as speech apraxia, repetitive behaviors or aggression.

Therapies directed at reducing the patients’ sensitivities to the various and specific system that is impaired can help. They can range from Occupational Therapy to Spinal manipulation.

How about our ‘sixth’ sense?” Google describes it as “a supposed intuitive faculty giving awareness not explicable in terms of normal perception.” It’s probably present in patients with ASD more than we think.

Medical Marijuana for Autism

Sunday, August 30th, 2015

Families pose lots of questions, lately, about the use of cannabis products for children who experience signs and symptoms of ASD. This brief review explores the latest available evidence regarding experience, safety and efficacy.

A turn-of-the-century review about the pharmacology of cannabis products revealed two different types of receptors; one affecting neurons, and a second that acts in the immune system. This discovery led to products that are “… already used clinically, as antiemetics or as appetite stimulants… suppression of muscle spasm/spasticity… the relief of chronic pain and the management of glaucoma and bronchial asthma.” Other ingredients, the article proposed, “… may also have clinical applications, e. g. as appetite suppressants and in the management of schizophrenia or disorders of cognition and memory.”

Some useful reviews are available on the web, and even neurosurgeon Dr. Sanjay Gupta presented his learned point-of-view on a series of CNN special reports, entitled Weed.

The active ingredients include THC (tetrahydrocannabinol), the portion that produces euphoria, etc., and CBD (cannabidiol), which appears to have more medicinal effects. Both hemp oil and CBD oil are low in THC. 

For patients who have signs and symptoms of autism, their young age and sensory issues dictate only a few palatable forms of the product, which makes absorption – and blood levels – especially variable.

What improvements?
Anecdotal stories of better seizure control, decreased aggression, and increased communication appear throughout the autism community. The most famous product, Charlotte’s web, takes its name from a child with Dravet syndrome, which causes frequent convulsions, who demonstrated remarkable results that conventional medicines failed to address, and even led to severe complications.

What harm?
Little is known about the effects in children, especially those who are developmentally challenged.

On the other hand, little is really understood about the potential harm of stimulants, anti-anxiety, anticonvulsant and antipsychotic preparations, which are often prescribed by the conventional medical community.

What risks?
Parents frequently question whether their child will become addicted to the various supplements and interventions that physicians suggest. The answer to CBD oil may be in the affirmative, but depending on the symptom improvements, that may be of little concern.

Researching and reporting this information involves separation of the medical issues from all of the other stuff that surrounds this topic. Political, emotional, social, moral, legal and self-promotional issues are woven throughout the literature.

There are different forms of autism, various strains of hemp, diagnostic differences, and individual metabolism; any or all of which could be expected to produce a myriad of possible behavioral changes.

Even though 3/4 of physicians report being in favor of medical marijuana for needy patients, it is difficult to find practitioners to dispense these substances. Let’s not kid ourselves; we have little knowledge about the individual responses of normal people to psychotropic medications. The ASD population has far less ability to express emotion. This is basically, experimenting on children.

Based on the evidence so far, there is too little scientific evidence that it is of value for the ‘milder’ signs and symptoms of autism. Anecdotally, it appears to be quite helpful for intractable seizures, as suffered by some ASD patients. Any claims of superiority from one manufacturer to another would be difficult to verify.

If the medical community had more complete answers, families wouldn’t seek help elsewhere. For years, governmental interference from disparate agencies has crippled research for problems, such as Post Traumatic Stress Disorder, even in adults.

With the explosive increase in the numbers of individuals diagnosed with ASD, it would seem that a well-designed study to assess seizures, aggressive behaviors, anxiety, focus and communication in patients with autism should be in order.

Seven Critical Developmental Milestones for Autism

Sunday, August 23rd, 2015

Unless there is a change of heart by the powers-that-be, pediatricians will continue to leave concerns about developing autism in mom’s and dad’s hands. Since ASD is among the most common modern childhood disorders, here is an informal, but well-informed list of similar developmental variations, reported by parents of children who were later found to be ‘on the Spectrum’.

Who is at risk?
There are correlations with a positive family history for speech delays, ADHD, or autoimmune disorders, especially thyroid. Other factors include; being male, born small or prematurely, moms taking certain medications, and other health conditions (diabetes, obesity).

Not much can be done, obviously, for such situations, so parents may want to just keep a closer eye.

4 months
3monthUnusual, unrelenting screaming, or an extremely ‘good’ child – parents have reported both.

Observations about feeding are important. Moms should be concerned about a weak suck, difficulty breastfeeding, or signs of colic or reflux. For formula-fed children, frequent changes due to intolerance may cast a shadow for future development.

A diagnosis of ‘torticollis’ (a condition where the head is turned to one side), or ‘plagiocephaly’ (flattening of the head), may be an early indicator of poor muscle tone.

7 months
6monthUnusual stooling patterns, including constipation and/or diarrhea, may become evident, possibly requiring medical intervention. Persistent skin conditions, such as eczema, or other chronic illness, such as bronchitis, may join other red flags.

By this time, infants should be smiling, making sustained eye contact and turning to their name.

Muscle tone should be increasing and the child should show the ability to sit.

10 months
9monthCrawling is acquired and in a typical fashion, so that ‘army’ moves or asymmetry may be a worry. The child is typically babbling.

There should not be continued, prolonged, repetitive movement, such as rocking back and forth or head banging. Neuro-typical infants are usually watching all of the action.

13 months
12monthSome type of walking should be present and there ought to be 2 or three words.

The youngster should be exploring and showing interest in others.

The introduction of new foods is not a big struggle in most infants. Delays in any of the one-year-milestones demands an exploration by the pediatrician.

16 months
16monthThere should be added suspicion if there are repeated ear infections, or other chronic medical conditions. Also, any requirement for Miralax™ should raise concern.

Staring at wheels, ceiling fans, and other spinning objects is typically only for the briefest period of time.

Any loss of speech, or lack of progress by this age is a red flag.

20 months
20monthsIf a child has required evaluation by more than 3 doctors for medical conditions, a central theme, such as autism should be considered.

Also, parents will want to be on the lookout for children who are stuck on few foods, and/or certain textures. An addiction to Pediasure™ can be an important clue.

Children who do not seem to be keeping up with peers warrant further observation. So, for first-timers, advice from an experienced, nonjudgmental grandparent can be valuable.

24 months
24monthBy now, children are playing appropriately with toys, talking to them, and playing with others.

It would be unusual to observe lining up things, looking to the side, continuing to put their hands over their ears, or excessive toe-walking.

At this age, it should be possible to separate the child from a digital device.

Most of these signs, by themselves, are only an indication for increasing watchfulness. As behaviors persist when normal milestones are missed, concerns are heightened.

In our modern world, “Waiting until the child is three,” is not an option. The earlier that appropriate intervention is instituted, the better chance of shedding the diagnosis.

By noticing these variations in childhood development, a parent can speak to their pediatrician about formal testing for this problem.

Seeking More, Better Autism Updates

Monday, August 17th, 2015

Every day, there is more information about this enigmatic epidemic. The Newsworthy tab on this site is useful for keeping up with some of the more controversial or confusing topics.

There never seems to be enough reputable, understandable, and useful news for families seeking help for a loved one affected with autism.

As of August, 2015, here is a representation of the most salient research:

There are multiple reports that the increased number of patients with ASD is mostly the result of diagnostic changes. It’s difficult to understand WHY this is so important to the media. Cancer of the colon and breast is recognized more, as are autoimmune diseases, such as thyroid disorders. Plus, there are many medical diseases, such as chronic fatigue and restless leg syndrome, which weren’t even discovered until this century.

Though such information may be of some importance epidemiologically, it leads to confusion by affected families and skepticism by the general population. At The Child Development Center, there is a steady stream of patients who have no idea about DSM IV or DSM 5.0 criteria. Parents come seeking a trained physician who is willing to assist their non-typically developing child.

This is where some of the most important discoveries should appear. It’s not like the ‘olden days’ when ASD was thought to be due to a single, as-yet-undiscovered mutation, infectious or toxic agent.

A myriad of possible genes, on a variety of chromosomes. previously unknown or thought to be of little significance, appear to be related to increased susceptibility in higher risk populations; including males, prematures, or children with immune problems. That situation, plus a toxic environment, creates the perfect storm for our little ‘canaries in the coal mine.’

There is woefully little in the way of true new therapeutic interventions for children already affected with developmental delays such as speech apraxia, sensory processing issues, or aggressive behaviors.

Moreover, in spite of recent research indicating improvement with early intervention, the US Preventive Services Task could not recommend routine screening by pediatricians.

The variety of studies that link advanced maternal and paternal age, increased maternal weight, and various other conditions of modern life, do little to ease the concern of prospective parents.

In fact, there are NO entries on this subject in the present year.

Scientists can’t help but study this mysterious condition, in order to better understand not only ASD, but neurotypical behaviors, as well.

In spite of all the controversies that surround an autism diagnosis, medical researchers continue to make (slow) progress.

Response to Inaction by US Task Force on Autism

Saturday, August 8th, 2015

August 8, 2015
This week, the U.S. Preventive Services Task Force on screening for autism disorder in young children recommended that more research needs to be performed before they can propose the institution of a formal program.

In a 2011 special article in Pediatrics, the authors concluded, “… we believe that we do not have enough sound evidence to support the implementation of a routine population-based screening program for autism.” That same year, the American Academy of Pediatrics recommended integrating such tools as a preventive measure.

Screening Today
The most popular screening tool, the Denver Scale, was introduced 40 years ago and last revised in 1992. It was invented at a time when the most serious childhood problems were mental retardation and cerebral palsy.

According to one study, “… the test has been criticized to be unreliable in predicting less severe or specific problems.” The author of the DDST has replied, “… it is not a tool of final diagnosis, but a quick method to process large numbers of children in order to identify those that should be further evaluated.” Like the many scientific tools available to screen for autism.

Autism Screening Tools
The CDC has developed a detailed schematic mechanism for diagnostic screening. “Myths About Developmental Screening” included these facts:

… today sound screening measures exist. Many screening measures have sensitivities and specificities greater than 70%.
•Training requirements are not extensive for most screening tools…
•Many screening instruments take less than 15 minutes to administer…
•Parents’ concerns are generally valid and are predictive of developmental delays.

Success of Early Screening
Fifteen years ago, a Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Societystated, “Early identification of children with autism and intensive, early intervention during the toddler and preschool years improves outcome for most young children with autism.”

The effects of intellectual functioning and autism severity on outcome of early behavioral intervention for children with autism, published in 2007, concluded “… These findings emphasize the importance of early intensive intervention in autism and the value of pre-intervention cognitive and social interaction levels for predicting outcome.”

A 2008 study noted, “Randomized controlled trials have demonstrated positive effects in both short-term and longer term studies. The evidence suggests that early intervention programs are indeed beneficial for children with autism, often improving developmental functioning and decreasing maladaptive behaviors and symptom severity at the level of group analysis.”

A Randomized, Controlled Trial of an Intervention for Toddlers With Autism, first published in 2009, demonstrated, “… the efficacy of a comprehensive developmental behavioral intervention for toddlers with ASD for improving cognitive and adaptive behavior and reducing severity of ASD diagnosis. Results of this study underscore the importance of early detection of and intervention in autism.”

A Systematic Review of Early Intensive Intervention for Autism Spectrum Disorders, in 2011, “… resulted in some improvements in cognitive performance, language skills, and adaptive behavior skills in some young children with ASDs…”

Research in 2014 at UC Davis demonstrated that 6/7 high-risk infants (6 to 15 months old), “…caught up in all of their learning skills and their language by the time they were 2 to 3.” Therapy was provided by instructing parents on interventions that could be done at home.

Dr. David Grossman, task force vice chairman and pediatrician, said that while early treatment is promising for the more severely affected, that hasn’t been studied in children who have mild symptoms that may be caught only in screening. So – don’t screen at all?

The USPSTF in question lists potential harms as including, “… time, effort, and anxiety associated with further testing after a positive screening result, particularly if confirmatory testing is delayed because of resource limitations. Behavioral treatments are generally thought to not be associated with significant harms but can place a large time and financial burden on the family.”

A common theme among most of the parents who are interviewed about the manner in which their child’s autism diagnosis was handled, is the wish that the pediatrician had been more knowledgeable and forthcoming about developmental red flags. The cost of autism runs into millions of extra dollars over the lifetime of individuals who continue to be affected.

When it comes to all-vaccinations-for-all, anything related to ebola, guns not-under-control, poisons in our environment, etc., the government has rarely demonstrated reluctance to recommend. When it comes to children’s health, what happened to erring on the side of caution?

The task force VP said, “… of course you should screen if the parent is concerned.”

Shouldn’t it be the doctor???

Fixing Facebook Autism

Sunday, July 19th, 2015

IMG_6413-highA couple of years ago, I wrote complaining of’s condition of Facebook Autism. The symptoms included social media isolation, repetitive posting of signs and symptoms, and trouble with digital communication.

But recently, merely by posting a change in my Facebook profile picture, I got more ‘hits’ than stories that took hours to research and report. The uploaded photo was actually a mistake. I just wanted to comment about my interesting Amsterdam trip, for those who might have been wondering what I was doing out of the office for a week.

My beautiful and patient wife, Jackie, remarked that, the increased interest was because I was finally telling something about myself, and sometimes people want a real person behind the blog.

Why autism means so much to me…
There are many similarities between the present epidemic and my career in neonatology. I have been a pediatrician for over 40 years, and I was one of the earliest adopters of machines, monitors and medicines for the tiniest premature babies.

Many of our patients were ‘cocaine babies’, and considered to have incurable conditions that were futile to address. They were broken children and families that needed our help. I was able to optimize the infants’ environment and nutritional status, and many of our patients went to wonderful parents who were quite pleased.

The next epidemic that affected my practice was HIV/AIDS. Like autism, I was taking care of patients for many months and wasn’t aware of the scope of the problem. At first, there were no diagnostic tests, and after they were available, it could take weeks to get results. There were no medications for treatment, and the future looked bleak. Patients were going to foreign countries for exotic treatments. Even when the first antiretroviral drugs were introduced, it was difficult to get them for our mothers and children.

Epidemics are so interesting because, by solving a finite problem(s), there are many other affected patients who can be assisted, as well.

Also, I probably have a few autistic tendencies myself…
I admit that I have some sensory issues. I prefer to control my personal space, and so I like to have healthcare and grooming performed by familiar professionals.

I would rather not have more than 2 or three items on the plate at the same time. At first, I wasn’t aware that I was a picky eater.  However, at a recent ‘surprise’ dinner, for example, the waitress asked if there were any foods that I didn’t wish to order. “Do you have a notebook handy?” I asked.

I possess a high predilection toward computer products. I was an Apple programmer (machine language) in the olden days, and still spend way too much time on digital devices.

My patients are well aware that I ask that medical protocols are followed, as directed. Introduction of  a new medication or supplement should take place one at-a-time, with alteration only reserved for a possible negative reaction.

I can relate. 

OK, enough about me, let’s move on to helping your children affected by ASD.


The Media and Autism

Saturday, July 11th, 2015

Emily Willingham, Forbes blogger and self-appointed autism expert, couldn’t let the story about the death of Dr. Jeffrey Bradstreet pass without injecting her two cents.

Dr. W commenced her comments with a 2,000 by 1000 pixel, scary picture of a syringe and needle. I never saw that photo at the beginning of one of her ‘Vaccination is Perfectly Safe‘ stories. She went on to detail the nefarious activities of a doctor administering a dangerous serum to unsuspecting patients. Em, have you ever heard of botox?

Conjecture, innuendo and professional jealousy notwithstanding, Dr. Bradstreet was the parent of an autistic son, and an early adopter, researcher, and lecturer of biomedical treatment for the disorder. He popularized medical evaluation and protocols to address metabolic variations at a time when the generally accepted cause of ASD was considered to be bad parenting.

All but the most conventional treatments are presented as kooky at best, harmful to patients at worst, and a waste of time and money. Some of the latest national news headlines regarding autism will illustrate:

  • ABC – Jim Carrey Apologizes for Posting Photo of Autistic Boy
  • CBS – Authorities: Anti-vaccine doctor dead in apparent suicide
  • CNN – Another study finds no link between MMR vaccine and autism
  • NBC – ‘You Don’t Outgrow Autism’
  • Fox – Woman says diet is healing son’s autism

Perhaps this situation, more than any other circumstance, hinders further worthwhile (i.e. causes and treatments) autism research. Headlines are made when a researcher is proven incorrect, statistics are questioned, and even a teen’s murderous rampage is presaged with possible links to Asperger’s Syndrome.

Regardless of the manner in which autism as a medical condition got so far off track, a new attitude needs to accompany the message that academics, practitioners, parents and charities project. Even skeptics who questioned the HIV/AIDS situation abandoned the ‘it’s their own fault’ line of thinking.

What can be done?

Autism foundations need to work together. Autism Speaks, The Autism Foundation, Autism Societies, and Local chapters have to find a way to advance positive publicity and useful information. There is little room for discord at this time. An unpopular stance, perhaps, but it can only help in the search for effective treatments.

Researchers need to get out in front of the media so that the epidemic proportions are clear, and that real work is being done to further study. Disagreements, such as increased incidence only being a perception, have already been addressed by the CDC.

Knowledgeable parents are doing the most effective job of finding professionals and insisting on protocols to help their affected offspring. Doctors need to join in this effort and announce the remarkable improvements that occur when biomedical and conventional treatments are combined.

Neurologists need to get on board. Frequently, parents are admonished that, “Nothing more can be done.” Improvements following biomedical protocols are either dismissed as coincidence, imagination, or magic.

Other specialists need to get on board. This means that allergists, pediatric psychiatrists, immunologists, dermatologists, gastroenterologists, and pulmonologists, have to broaden their knowledge base and focus on the patient, not their particular subspecialty. Too often, parents are only informed that the problem does not lie in their domain.

Pediatricians and family practitioners need to get on board. This is the childhood epidemic of our time, doctors; embrace it, learn about it, and take the time to talk to your families.

Autism heroes, such as Temple Grandin, Drs. Martha Herbert, Susan Swedo, Robert Naviaux, Richard Frye, and Jill James are modern medical role models for the next generation. The media, including Forbes, needs to highlight these personalities, rather than obfuscating this important issue with titillating stories and dogmatic posturing.

People who have Parkinson’s disease are not Parkinson’s experts, nor are people with cancer oncology specialists. Lorenzo’s oil is the exception, not the rule. Insiders and outsiders alike, need to embrace those who are doing real work to solve this problem.

The autism community includes a large, diverse population of well-meaning, knowledgeable and competent people. Together, we will understand and conquer this devastating scourge on our youngest constituents.

Wouldn’t it be nice if the media extended a helping hand?

Cali-Vaccination Law

Sunday, July 5th, 2015

Senate Bill 227, mandating childhood vaccinations, will take effect in California in 2016, joining 36 other states that no longer allow an exemption for personal or religious beliefs. Non-compliant families will not be able to use licensed daycare facilities, in-home daycare, private or public preschools, and after-school care programs.

Children who are not up-to-date will be required to home school. Also, the legislature may add any additional vaccines that they deem necessary. Parents are left with few viable alternatives.

Ironically, unvaccinated students with IEPs will still be able to access those programs.
Those with a preexisting personal exemption may continue until the next school year.
Parents requesting a medical exception must provide a physician’s statement that details which ‘shots’ are not OK, and the reason(s) for non-compliance.

The Government Doesn’t Always Get it Right
According to the Innocence Project, 330 post-conviction DNA exonerations have occurred since 1989. Twenty people were on death row and the average length of time served per exoneree was 14 years. Whoops.
The CDC keeps dropping the ball with the flu vaccines. After admitting that the 2015 ‘shot’ is ineffective, as in previous years, the universal message given to the public from the government and mainstream media was to “get the flu shot anyway.” There is evidence that some flu vaccines could make things worse.
As demonstrated in the case of antibiotic overuse, the FDA can’t regulate even when scientific research is convincing. Important practical issues, such as incorrect vaccine labelling and storage have never been adequately addressed.

Future studies may identify specific individuals, such as those with genetic Copy Number Variations, G-I, and immune system difficulties, who are susceptible to vaccine injury. Differences have recently been identified regarding the effects of medications on men vs. women, infants vs. adults, and there are now even individualized chemo treatments. In medicine, one size does not fit all.

The herd has been protected so far.
Even though the number of cases increased sharply in 2014, there were still less than 700 reported measles and 1150 mumps cases. Many patients had  previously been vaccinated, or were too young to get a shot. Worldwide, there were ~ 400 cases of polio reported in 2013. Working together (mutually beneficial relationships), drug companies and governments have done a fairly effective job.
With CDC surveillance and public health reporting, outbreaks can be detected using appropriate testing with inoculations to avert tragedy.

Based on an incidence of 1/68 children, the number of patients with autism equalled nearly 60,000 in the US.

There doesn’t seem to a great deal of wiggle room for parents who remain convinced that an inoculation altered the course for their typically developing child. Does a previous child with autism after a shot count? How about those who are already not developing normally? Many children have fevers and diarrhea following a vaccination, so that is significant. Should febrile seizures be a concern? Does a child with Tuberous Sclerosis who does not show signs of autism (yet) count?

An already elevated titer against a disease seems to be a contraindication to revaccination. There are patients with high or low white blood cell counts, so this might become a possible possible temporary exemption.

Finding a physician willing to assist in the process is one part of the journey. Crossing t’s and dotting i’s to adhere to regulations will take time for already-resource strapped families.

The change in the law is a knee-jerk reaction based on inadequate scientific information, conflicts of interest from those who are supposed to be protecting us, and presents an unnecessary barrier for thoughtful, intelligent, concerned parents.

For many parents, homeschool dot-coms may be the most preferable alternative.

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