Archive for the ‘News-Maybe-Worthy’ Category

Best Summertime Activities for Children with Autism and ADHD

Saturday, May 23rd, 2015

It’s already the end of this school year. Many families (here, in Florida) have been through an IEP to determine services for the next semester. What is best? Often, it will involve some special education, possibly in an ESE classroom or GenEd with pullouts.

Yikes, it’s so complicated! Children are in a constant state of change. Summer activities have already been formulated, but there are many questions about what to do with the unstructured time. So, here is TheAutismDoctor’s top ten list of things to do this summer:

 Leave time for the kids to just be kids. Especially for children under the age of 5 years, academics can take a back seat to socialization.

 Children over that age often have difficulty focusing on non-preferred activities, and so will need to practice some of those skills, in order keep up. Pick the areas that are most challenging, and set aside some regular time for practice.

 Parents are frequently at odds about whether to let a child spend time doing digital ‘stimming’, such as watching favorite Youtube videos, or repeating Angry Birds. A useful compromise is to strictly limit those activities to very specific times. No deviations.

 Children should learn to swim. It may take a professional just to get the child into the water, but eventually, they all learn to love this activity. Although a parent is not assured that acquiring this skill can prevent a tragic accident, it may provide some measure of confidence.

 Together with the child, learn or practice a new, easy, outdoor hobby. This promotes better health and socialization. The experience gets the child on a more equal footing with the parent, as they explore activities such as fishing, boating, surfing, golf, biking, or hiking.

 Children who get to visit the family’s home state/country/old neighborhood thrive. The cousins are usually prepared, so the ASD kid has built-in playmates.

 To the best of your abilities, don’t give up on the diet and supplements.
It’ll be that much more difficult when you go back.

 This is a good time to give some of the alternative treatments, such as Low Dose Naltrexone or glutathione, a try. Negative reactions can be quickly identified, and there may be some surprising results.

 Give the stimulant and anti-anxiety meds a break.
Summertime isn’t that intimidating.

 Families who take vacations together have the best outcomes.

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.

When Methyl B12 Doesn’t Work for Autism

Sunday, April 26th, 2015

pdr2The Physicians’ Desk Reference is the text that professionals turn to first, when checking on a prescription medication. Though it contains more a thousand pages describing 330 medications, the condition ‘speech apraxia’ doesn’t appear.

That means that conventional medicine has formally admitted that there is no pharmaceutical treatment for one of the core signs of significant Autism Spectrum Disorder. The result is that families will seek relief elsewhere.

The most studied and proven treatment is Speech and Language therapy, in some combination with other important traditional treatments, such as ABA or OT. Astounding recovery may take place, depending on how early a problem is recognized and addressed.

What happens when these modalities are not effective?
More therapy? Really?
That’s all you’ve got doc?

The use of vitamin methylB12 injections has shown safety, tolerance, and improvement in a subgroup of individuals in a 2010 study. At a recent MedMaps.org conference, it seemed to be the most utilized methodology by the experienced ‘DAN’ practitioners in attendance.

So, what if the mB12 injections aren’t working? 

1. Be patient. Depending on the child’s age, it could take up to a month or more of ‘shots’ to achieve perceptible results.

2. Be realistic about the next developmental step. Non-verbal children may simply exhibit increased oral ‘stimming’, including shouting, teeth grinding, making bubbles, drooling, or biting (just about anything). If the child already speaks, look for more words that require less prompting and new words to appear intermittently. The next step is speaking to toys and family members, and socialization may then generalize.

3. Don’t forget, we don’t teach toddlers how to speak, they just do it. Continue or even increase the Speech therapy. Achieving optimal health and the ability to learn must be complemented with proper instruction.

4. Suspect on-going inflammation. Yeast, bad bacteria, and food intolerance could be using up much of the energy that it takes for the correct areas of the brain to wake up.

5. The suggested dosage is 64.5 mcg/kg subcutaneously every three days. That equals ~1mg for a typical 3 year-old. Many practitioners will increase the dose and frequency if there is little response.

6. Check for a problem in the pathway leading to glutathione production. A genetic mutation in the step that makes folinic acid (MTHFR), or too much tylenol blocking the normal formation, may be interfering with mB12 treatment.

7. The practitioner may wish to add to that detoxification channel with the use of DMG, TMG, and/or N-Acetyl Cysteine.

8. Other medications that the child is prescribed, such as stimulants and anti-anxiety preparations, may be impeding progress and interfering with recovery.

9. Parents are often confused about the various formulations of the vitamin; including sublingual, patch, pill, and lollipops. It is water soluble, leaves the body easily, and needs to be administered in a form that slowly leaks into the circulation. The successful substance is injected subcutaneously – under the skin and into the fat.

10. The preparation should be ordered from a reputable pharmacy that is familiar with the product. Simply changing the compounding dispensary may improve results.

Bottom line:
What do you do when the methyl B12 still doesn’t work for speech apraxia?
That is a very difficult problem.

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.

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.

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Brian D. Udell MD
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Davie
FL 33314
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