Archive for the ‘Diets’ Category

Docs, Glocks and Autism

Thursday, July 30th, 2015

gunMiami Herald
July 28, 2015
Appeals court upholds doctor-patient gun law

According to the article, “The law subjects healthcare providers to possible sanctions, including fines and loss of license, if they discuss or record information in a patient’s chart about firearms safety that a medical board later determined was not “relevant” or was “unnecessarily harassing.” The law did not define these terms.”

The law did not define these terms
It has been reported that U.S. Circuit Judge Gerald Tjoflat, the author of the majority opinion, understands that, in a patient at-risk for suicide, this might be a valid medical concern.

How about this case?

A fifteen year-old male who suffers from moderate-to-severe autism (or any other medical – psychiatric condition), takes Zoloft for aggressive behaviors, perseverates on violent video games, and doesn’t seem to grasp the line between fantasy and reality.

Would it be fair to say that a discussion by the physician with the parents about weapons in the home is appropriate?

The risk factors

  • The patient’s sex.
  • The person’s age.
  • Medication(s) use. There is even a ‘Black Box’ warning on SSRIs about the increased possibility of suicide.
  • The predilection for violent video games related to behaviors.
  • The teen’s inability to discern reality vs. fantasy. When asked, “Who is your best friend,” for example, one patient responded with the name of person who he had never met.
  • Constant bickering with parents over school.
  • A loaded gun in the house.

Discussion
Such a situation might be equally as valid when a patient experiences conditions other than ASD. Indeed, people ‘on the spectrum’ are probably less likely to act with outward aggression. Certainly, a discussion about elopement is absolutely a necessity in the face of autism, as are questions about a pool safety and the ability to swim.

Surely, there are a gaggle of gun-toting attorneys who can poke holes in my case. After all, I’m just a healthcare provider.

The lawyers representing the doctors got it wrong. This is not about the first amendment rights of physicians to discuss the issue of guns. This is about public safety. And, let’s face it, when it comes to vaccinations-for-all, as an example, there’s no problem protecting the herd.

Perhaps just as certain, is the possibility that, should a shooting death occur in this scenario, a lineup of litigators would appear on the radar screen, accusing the (ir)responsible doctor of not taking the obvious and necessary steps to prevent such a tragedy. “An Accident Waiting to Happen,” might be the headline.

Conclusion
This is an insane law that supports the NRA’s unyielding position about the rights of gun ownership. It is proof of how corrupted our system has become, due the superabundance of lobbying money.

Gun control is what we need, in the face all the senseless shooting deaths by too many young men, who obviously have mental challenges. However bizarre, it is a standing law that has now been upheld by the Florida Court of Appeals.

More information will be required to illuminate the holes that are created by this imprecise lawyer-speak.

Fixing Facebook Autism

Sunday, July 19th, 2015

IMG_6413-highA couple of years ago, I wrote complaining of TheAutismDoctor.com’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. 

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

 

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.

Exemptions
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.

Conclusions
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.

What Pediatricians Can Do About the Autism Epidemic

Saturday, June 27th, 2015

Pediatricians are the first line of defense against childhood conditions that have lifelong effects. Traditionally, that has included the Denver Developmental Exam, frequent doctor visits in the first few years, and vaccinations to prevent childhood diseases.

News Flash
There is an epidemic of childhood conditions that include ADHD and ASD, conflicting opinions notwithstanding. That means that pediatricians ‘stand at the door’, and are responsible for prevention and treatment, no matter how much they resist this reality.

Stay up to date on pertinent literature. As the HIV epidemic began to emerge, medical science experienced a quantum leap in our knowledge about the immune system. Similarly, the increasing volume of parents who are concerned about their children’s delayed speech, lack of focus, and hyperactivity, demands more research and knowledge and less kindly reassurance, which is based on the experience of the previous century.

Carry a high index of suspicion. Five or ten minutes spent with a parent and child is not enough time to perform a thorough physical examination and elicit pertinent clinical information. The visit should include a documented nutritional summary.

Make a presumptive (if not definitive) diagnosis. Parents need information, and the child’s pediatrician is the expert. It’s fairly simple – delay in communication, repetitive behaviors and lack of socialization demand an explanation and exploration. Loss of language, lack of eye contact, and poor tone are red flags to be explored, not ignored.

Do a proper workup. At least check the blood count, thyroid, liver and kidney function. What is over-kill about exploring vitamin and mineral deficiencies in a picky eater? Then, the doctor could evaluate whether appropriate intervention makes a difference in the signs and symptoms that concern parents.

Make appropriate consultations as early as possible. In a recent UC Davis study, six of seven high-risk children who received therapy alone lost the presumptive diagnosis. Parents will be more upset with the pediatrician who says, “Let’s wait,” and improvement does not occur, than one who advises, “Let’s err on the side of caution,” even if symptoms could have abated without intervention.

 Advise parents to try the gluten free – casein free diet for a few months. What is there to be afraid of? Uneasiness about creating a nutritional deficiency can be easily checked with laboratory evaluation and documentation of proper growth.

Perform an appropriate evaluation for associated signs and symptoms. Explore the cause of frequent infections, rather than responding with the knee-jerk reaction of prescribing antibiotics. Miralax® should only be given for brief periods and for occasional constipation, and isn’t even approved in children. GERD that is treated with antacid preparations can lead to vitamin deficiencies. Steroids may reduce skin rashes, but do not address to the root cause.

When a child has the diagnosis of ASD, the doctor should explore safety issues. Elopement is not uncommon, so family plans should be devised. Although learning to swim is no insurance against a tragedy, acquiring that skill helps provide some peace of mind. Incongruous laws notwithstanding, discussing gun security is a must.

Provide parents with a reading list. TheAutismDoctor.com is a good start, where discussions are presented to address the polarized world of autism diagnosis and treatment. When possible, the essays have hyperlinks to the original research. The Newsworthy tab includes the most recent and pertinent literature.

Become knowledgeable about the variety of protocols. The doctor who has read the literature (both pro and con) about alternative treatments is the only one qualified to give advice. Practitioners who assert, “I’m not aware of this or that treatment,” may be highlighting their ignorance, rather than providing up-to-date info. Therefore, unless the pediatrician knows about a therapy, the patient will surf the ‘net, and listen to the professional who does.

Stopping the Autism & ADHD Supplements

Saturday, June 6th, 2015

I once asked Dr. Dan Rossignol how to cut back on the multitude of supplements that children take for ASD and ADHD. The leader of the Medical Academy of Pediatric Special Needs, simply stated, “Brian, it’s easier to get kids on them, than off.”

Often, a really difficult patient arrives at the Clinic with many, many medical issues. ‘Stims’ appear way out of control. Language is at a bare minimum, if at all. This is not the time to stop anything. Or, it may be the time to stop everything! Another patient is doing great, and the family wants to travel – perhaps without a suitcase of vitamins.

Until more research and information is available regarding the specific cause(s) and treatment(s) for developmental conditions known as Autism Spectrum, practitioners need to figure out our own protocols for starting AND stopping the myriad of sometimes helpful products.

Methyl B12 injections. Let’s begin with a favorite, as far as kick-starting the difficult sign of speech apraxia. Reasons to stop may include:
1. There are just more ‘stims’, without any vocalization improvements.
2. G-I problems appear to interfere and amplify aggression-frustration-distraction-focus. In this case, there may only be a temporary halt.
3. If the child just won’t ‘shut up’, it may be time to give this vitamin a rest.

Antifungals. Medications, such as fluconazole, require frequent laboratory evaluation and should be discontinued as much as is tolerable for the patient and family. Citrus seed extract, turmeric, apple cider vinegar, and the like, may be given as long as they are accepted.

Multivitamin preparations. Once the child achieves a healthy, varied diet, it’s probably OK to discontinue this fairly expensive supplement. Let’s see… a healthy, varied diet… that will be… ~2025?

Oral glutathioneWhen the correct liposomal protein is utilized, it is one of the most effective products for attention, tone and apraxia. Once inflammation from known and unknown sources is reduced to a point that the child’s immune and detoxification systems can handle it, there may be no further need. Let’s see… reduction in environmental toxins and the high-risk patient’s overreaction to inflammation… that will be… ~2025?

Probiotics. Today’s children are exposed to genetically modified foods, steroids, antibiotics in everything, and attacks from all new kinds of cooties. The best way to battle this situation is a dense concentration of varied strains of high quality bacteria. Let’s see… a decrease in toxic substances and germ killing products… that will be… not in this century.

Special diets. Many parents are eager to re-introduce the forbidden foods. Once a diet is undertaken and positive results are observable, plan on about 2 years of restrictions. When the diet is expanded, choose one at-a-time, at weekly intervals, in order to notice any problems.

Calming supplements. To the extent that magnesium, tryptophan, theanine, taurine, GABA, and/or pycnogenol, are helping, subsequent decrease in self control or aggression might follow their discontinuation. This should be relatively simple for a parent to observe. Restart as needed.

Metabolic enhancements. Stopping products, such L-carnitine, L-carnosine, CoQ10, and/or others may result in observable behaviors, such as weakness, tiring, easy fatiguability, poor attention and focus.

Knowing when to say no:
Combining biomedical treatments with the proven traditional therapies, such as Behavioral, Speech & Language, Occupational and Physical Therapies, results in palpable improvement. Discontinuation may be a real mistake.

At the end of the day, as long as a supplement is safe, possibly effective, reasonably priced, well-tolerated, and doesn’t result in any prolonged negative behaviors, parents are quite satisfied when development gets on a normal trajectory.

Likewise for stopping them. If it doesn’t appear to make a difference (even after 2-4 weeks), doesn’t seem to be worth the $, may be causing more prolonged negative behaviors than improvements, and development proceeds at a normal course without it, there may be an opportunity to discontinue. Then, watch closely.

Talking At TACA

Sunday, May 3rd, 2015

I had the privilege of speaking at the Talk About Curing Autism Conference, which was held in Philadelphia this weekend (5.1.15).

The topic that I was asked to present was Mast Cells. Dr. T C Theoharides is a world’s expert on this subject, but couldn’t attend, so I was asked to lecture in his absence.

The Talk
Mast cells are a type of white blood cell that exist is various locations throughout the body, and are responsible for protection and healing. They do their work by discharging chemicals, such as histamine, from packets that are contained within the specialized cell.

Dr. ‘Theo’ has published a great deal of the research about these critters, and among his discoveries are the following:
 Mast cells exist in relative abundance in the skin, but also in key areas of the brain that ultimately affect sensory and cognitive function.
 The cells have an intimate physical and chemical relationship with the blood vessels, nerves, and other immune cells inside the brain.
 Mast cells function differently inside the brain than in the skin, releasing their chemical contents in different ways and with a variety of substances other than histamine.
 They could be responsible for ‘brain allergy’ and many of the signs and symptoms of ASD, such as brain ‘fog’ and irrational outbursts.
 Prevention of mast-cell release inside the brain may be a valuable tool in the treatment of autism.

TACA
The organization was founded at the beginning of this century as a parent support group to discuss the growing epidemic about which doctors and other professionals did not seem to have a clue – from diagnosis, to cause, to treatment or prevention.

The mission statement includes a belief “in early diagnosis, intensive therapies and medical intervention for children affected by autism. With early intervention, medical treatment unique to each person’s needs and necessary support services for families many children can improve greatly and some can recover from their autistic symptoms.”

“From a grassroots beginning in Southern California, TACA expanded nationwide and now has a physical presence via our Chapters in 23 states and a virtual presence in the rest of the nation.”

Final thoughts
In the beginning, there was ‘Defeat Autism Now!’  – a group of physicians (DAN! doctors) and parents, searching for answers about how to understand and help patients affected with ASD.

That organization has grown and given rise to the Autism Research Institute and The Medical Academy of Pediatric Special Needs. Now, Autism Speaks, The Autism Society of America, Generation Rescue, and many other local organizations have emerged, dedicated to bringing relief to this modern epidemic.

In the medical vacuum that has appeared since the rise of ASD, doctors have yet to really fill the void with solid research or reliable interventions. What the autism community needs is either a cohesion of the disparate charities that already exist, or a new entity that helps to raise dollars for primary and clinical research that yields even more knowledge and hope.

Ten Reasons Why There Is No Autism Pill

Saturday, April 18th, 2015

“If you have seen one child with autism, you have seen one child with autism,” is an often-used aphorism. An important corollary: so far, there are only patterns to follow, and a single ‘cure’ may not be the cure.

There isn’t one kind of autism.
It’s like saying we’re going to find a cancer pill.

Controversies have existed from the first time the diagnosis was proposed; beginning with the ‘Refrigerator Mom’ theory, to the contribution of genetic influences, and the role of environmental factors (including the vaccination issues). The enigma has slowed research, while these matters are being sorted out.

Multiple systems are involved, including gastrointestinal, neurologic, muscular, and immunologic. That makes the documentation of recovery a moving target, reducing the likelihood that there is one pill.

There are multiple levels of system involvement, including genetics, proteins (proteome), metabolism (metabolome), body flora (microbiome) and those interactions.

Autism is freakin’ complicated.

The cost of researching, producing, testing and bringing a brand-new pharmaceutical exceeds 2.5 Billion dollars. Market size is important, and apparently 1/68 children does not meet that target. Unless it’s your kid.

Autism is freakin’ expensive.

There are no specific biomarkers, which are key laboratory or other diagnostic findings that identify a specific condition. That means there are few ‘levels’ to follow that identify severity or response to treatment.

The spectrum contains a variety of signs and symptoms that change over time and vary among individuals, including identical twins. There are various presentations, from mostly apraxia to mostly social isolation, and lots of combinations in between. That makes the evaluation and documentation of response to therapies problematic.

Since environmental factors have been implicated as an issue, it’s clear that pollution and toxins have been getting worse, not better. That has resulted in increasing numbers of affected people with more complicated problems. The light at the end of the tunnel seems to be moving farther away.

Conventional medicine isn’t leading the way, and falters even in the pursuit of assistance. Simply advising more therapy is frequently inadequate. Stimulant and other central nervous system medications can be a nightmare. The belief that ‘alternative’ therapies are kooky, or even harmful, polarizes – and little progress emerges.

There is an audible silence by way of a national voice towards solving this epidemic. When John Kennedy said we could get to the moon and back, America found a way. Autism needs more heroes, role models, and spokespeople.

All of that being said, it doesn’t mean that physicians cannot do appropriate testing to discover variances and abnormalities that are clues to downstream signs and symptoms to treat, and upstream interventions to alter the course.

In the absence of a pill, early detection and intervention successfully addresses many of the most debilitating and costly complications.

That Kooky Autism DIET

Sunday, April 12th, 2015

Just about every one of our patients “do the diet”. It’s different for each child. Parents are asked to avoid the foods that test in the highest range of immunoglobulin-4 (that’s I-g-G ‘four’) levels.

That is considered ‘kooky’ by medical establishment standards. I have treated several patients under the age of 7 years, lately, who were taking Zoloft, Prozac, Vyvanse, and Intunive in combination and pretty high doses, prescribed by prominent local neurologists. That, apparently, is not kooky.

The ‘diet’ is considered risky by medical establishment standards. Those are the standards that do not require testing of thyroid, lipid, vitamin, iron and other important parameters associated with autism. Checking levels is, apparently, kooky. Treating vitamin and mineral deficiencies in patients with ASD is, somehow, even kookier.

The experience of thousands of families is this: when children avoid those foods to which they are most reactive, there is an improvement in ‘brain fog’, communication, bowel movements (and, often toilet training), and aggression.

I know this to be true for two reasons. One, ‘The Diet’ – whatever it may be for each individual patient – is a pain in the ass for the family. The parents follow it because they see improvement. Two, when children transgress there is a price to be paid – in regression, yeast, sleep, hyperactivity and other behaviors.

The conventional wisdom is that IgG-4 food allergy testing is useless. That was the declaration made by the European Academy of Allergy and Clinical Immunology (EAACI), 7 years ago. The paper was entitled, Testing for IgG4 against foods is not recommended as a diagnostic tool.

It is clear that, if the problem being investigated does not include the core signs and symptoms of autism, such testing may be irrelevant.

After appropriate laboratory testing, observable results may take up to 2-3 months. Embarking upon the child’s specific diet is often challenging, but rewarding. Knowing that the results are accurate is verified when ‘fog’ lifts, there is faster processing, or less anxiety.

Skeptics frequently point out that diets are ‘dangerous’, due to vitamin and other deficiencies. Close measurement of somatic and laboratory parameters assures grandma (and others) that this protocol results in positive nitrogen balance by promoting health and preventing illness. As a result, appetite often improves and food choices become even more varied.

At a recent medical conference, one of the presenters expressed a lack of confidence about the IgG-4 food allergy findings. Those statements were challenged, and it was clear that the participants who encourage such dietary restrictions consistently observe significant positive results.

The Physician’s Desk Reference, the text that doctors use to check medications, contains ~1000 pages. There is not one mention of a treatment for speech apraxia, or eye contact. Physicians don’t seem to get it – if conventional medicine admittedly has little to offer by way of tangible treatment for their affected offspring, parents will search elsewhere.

There isn’t one ‘best’ diet. There are many reports of improvement with GAPS, FODMAPS, GF/CF, and others. Plus, there may be no value to applying the results to other conditions, such as asthma or eczema. However, imagine a parent NOT trying the Feingold diet to treat their ADHD child before giving strong, addictive medicines that carry many side effects.

Finding a diet that improves a child’s health, and gives the family some relief and hope, is not kooky. After assuring nutritional balance, it really doesn’t matter which one, as long as parents see that it is working.

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!”

Professional Resources for Steady Progress in Autism

Sunday, March 22nd, 2015

Parents frequently express concern that their child’s progress is too slow. They want to be sure that something is not being missed. As months and years pass, and especially if there is little progress from conventional therapies, their search begins and/or intensifies.

Resources include the Internet, books, lectures, webinars, conventions and conferences, schools, professionals of all varieties, family, friends, and other parents. The weaker the science, the louder the opinions.

Here are a few helpful choices:

Websites:
Googlescholar.com is the website to search for literature on topics that require further understanding and research.

SFARI gene is the site for reliable, accurate information about any genetic variation. Results that were previously considered ‘not significant’ may be just the opposite.

Autism360.org is the place to upload your child’s data, so that individualized therapies can be developed.

PDR.net is the address for reading about pharmaceuticals prescribed by your physician. True, it’s pretty scientific, but it’s the one the doc checks (or should).

WebMD.com and Mayo Clinic both display a lot of medical information, much of it in lay language, based on reliable resources. This can be useful when the pediatric specialist, e.g., strings together an incomprehensible list of terms about your child.

Quackwatch.com is the kook meter. The mission statement describes, “… an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct.” Is that because those who do not agree with their conclusions are people who are not concerned?

Tacanow.org is the cookbook resource for GF/CF recipes.

CDC.gov is the site for the most complete government data on autism in the US.

Books
Start with Dr. Martha Herbert’s The Autism Revolution. This story describes a sea change in our understanding of ASD.

Temple Grandin’s books explain autism from ‘the horse’s mouth’, so to speak. The Reason I Jump is fine, but Ido in Autismland provides more insight into the autistic mind of children and teens.

Asperger’s families can learn a lot from The Curious Incident of the Dog in the Night-time, which is presently a Broadway play.

Conferences
The International Meeting for Autism Research continues to grow in scope and size. What an ideal venue to meet the present and future experts in this field.

The Medical Academy of Pediatric Special Needs now sponsors the most academic meetings. Although the semiannual event is geared more toward professionals, many parents could benefit from some of the seminars.

Webinars
The original site for ‘DAN’ doctors is now the Autism Research Institute. The educational offerings are significant and quite helpful to families who want to better navigate such a confusing condition.

Autism Speaks performs many of the most basic and wide-ranginging of informational sites, including helpful interactive pages. The spectrum of services ranges from funding to fund raising.

Try this example:
There are reports of great progress from giving worms (Helminths), worm removal, fungal administration, (Saccromyces), fungal removal (fluconazole), and fecal restoration. Trying to achieve gut health is the common feature.

Next, what is the most scientific way to study and treat that condition? Utilizing reliable knowledge bases, a reasonable plan can be formulated. Safety, effectiveness, and predictable performance should be part of that protocol.

Conclusions:
The lack of trained professionals and overwhelming number of new patients eventually leads families to some sort of journey into the unknown.

Checking out the resources that the pros use may be helpful in that undertaking.

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Brian D. Udell MD
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