Posts Tagged ‘advice’

Ten Noteworthy Observations about People with Asperger’s

Monday, February 2nd, 2015

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Autism, Inoculations, and Fantasyland

Sunday, January 25th, 2015

Recent news about the increase in measles that has sprung up in California, has brought about the usual media finger-pointing, claiming that the cause is unvaccinated children whose parents unnecessarily worry about the risk of autism.

As documented in my previous posts on this topic, this physician believes in the value of those twentieth century miracles. Nonetheless, a lingering question remains, “Are all of the vaccinations safe and effective for all young children?”

The Three Main Reasons for the Measles ‘Outbreak’

Lack of Knowledge

We really don’t know the reason(s) for the newest episode. The increase may have little to do with lack of compliance by anti-vaccination zealots. Many of the infected individuals were Disney workers who had probably already been vaccinated, and were no longer immune. Plus, the venue is an international attraction, with visitors from all over.

The Wakefield Effect – Any time there is any story involving vaccines and ASD, the controversial and now-infamous British study that implicated measles virus as a possible cause, seems to mar all perception and reason. Media pundits are quick to avail themselves of that ill-fated research.

Conventional medicine is still debating whether increases are merely due to changes in diagnostic criteria. Every week a new association pops up; including maternal weight, paternal age, environment and toxins, stress, and circumcision. If compliance is the issue, certainly such confusion shakes one’s faith in the ‘science’.

Polarization

The experts would have a great deal more validity and success, if they could add more understanding and kindness to their approach. Those who question the status quo are considered kooky, ignorant and ill-informed. That creates more polarization, with fewer parents possibly choosing to vaccinate.

Pro-vaccination declarations are rarely equivocal, and conclusions no longer contain the statement, “The topic deserves further study.” Anti-vaccination supporters suffer a similar shortcoming, and conspiracy theories are a scientific distraction. There doesn’t seem to be any compromise position.

Issues, such as the recent CDC whistle-blower case, or reports of safety violations have not been adequately addressed.

There still aren’t any definitive, prospective, randomized, controlled, double-blind crossover studies with long-term outcomes evaluating various vaccine schedules to document safety. Holistic medicine is frequently chastised by the establishment for such an omission in alternative protocols.

Lack of Confidence & Trust

A great deal of money is handed to drug manufacturers to manage these vaccination programs. Concerns abound about whether large multi-national companies always have our best interests in mind.

The Flu vaccine fiascos that permeate each winter do not engender a great deal of confidence about how our medical establishment handles the inoculation issue.

The government continues to send out inaccurate and conflicting messages regarding our public health. Antibiotics in our food are proven unsafe, but the practice continues. There were 2 cases of ebola and Congress appointed a ‘czar’, but they couldn’t confirm a Surgeon General.

Public trust in the FDA and CDC has been eroded by frequent lapses in judgement and execution.

Conclusion:
The vast majority of the scientific literature is quite insistent that there is no relationship between the present vaccine schedule and ASD. To all of the experts, ‘true’ scientists, and colleagues – I get it!

That fact remains that there are too many parents who have noted developmental regression proximate to a childhood vaccination. They deserve better answers.

Autism, ADHD and Circumcision

Sunday, January 18th, 2015

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

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

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

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

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

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

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

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

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

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

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

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

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

Anti-fungal Treatment for Autism?

Sunday, January 11th, 2015

According to the medical establishment, any autism treatment that does not chemically pollute the brain is ‘off-label’. However, less controversial is the topic of poor gut health in children with ASD.

Eight of the eleven originally-described patients with autism (circa 1940) had G-I symptoms. Scientific literature is fairly established (1*,2*,3*, 4*,5*, 6*) about this association.

The Theory:
Somehow, the sticking point for real scientists is the association between gastrointestinal disturbance and autistic behaviors. Those would be the real scientists who never cared for a child with autism. Or, those who never ate some bad Chinese food.

Given that the association is genuine, then, what better way to help a child recover from hyperactivity, poor focus and attention, continuous repetitive movements, ineffective sleep, chronic constipation or diarrhea, or grouchy mood, then to address that condition?

It was along that line of thinking that successful biomedical treatments were undertaken, over 50 years ago. Despite the continuing controversy of impersonal science and scientists, the remaining question for those involved with helping patients is, “What’s the best way to heal the gut?”

The Findings:
Toward that endeavor, research has documented associations with eosinophilic esophagitis, GERD (reflux), intestinal lymphadenitis (think big tonsils, but further down), and colitis. These are medical conditions with actual, established therapeutic interventions.

The Treatment:
The cause and prevention of that inflammation along the G-I tract poses an attractive therapeutic possibility. The offending agents could include food allergies, toxins, viruses, bacteria and fungus, including some imbalance of those forces, in susceptible individuals.

Some of the protocols, such as addressing toxins, avoiding allergenic agents, or prescribing antibacterial, antiviral, and anti-fungal products, have held up better than others.

The Experience:
Gut health is evaluated in each of our patients by CLIA approved laboratories. Findings consistent with fungal presence, or signs and symptoms assigned to that condition, were treated with brief courses of low dose fluconazole in patients throughout 2014. Their regular visits were documented and reviewed, including appropriate periodic laboratory studies.

This was performed under a physician’s care, with the parents’ full understanding and consent – and usually their trepidation and reluctance.

The bottom line is this: within 2 or 3 short courses, a simple, oral, antifungal medication was well-tolerated, and effective in reducing many symptoms that are generally assumed to be ‘autistic’.

Warnings:
Fluconazole can have serious side effects and drug interactions. Present practitioners should follow a written, rigorous protocol and document progress. Other sources of inflammation should be explored and addressed, as well.

Disclaimer:
This information is to be submitted for publication. This is not a recommendation for patients. Further studies are warranted and validation requires more scientific scrutiny.

Addendum:
Here’s a (typical) email that arrived as I was typing this story, “Hello Dr. Udell,
<<Jane>> is showing issues related to yeasty behavior. Last time we saw you a month ago, she seemed to have grown out of it. We then took a trip that seemed to have disturbed digestion and she has loose stools, some silly behavior etc. She was on diflucan till Dec 1st week. Do you think we need to get her on the antiyeast again?
Meanwhile, she has showed progress in other respects, increased eye contact and need to communicate more. Her babbling has increased but still no consistent words…”

What Causes Autism – 2014

Wednesday, December 31st, 2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When Professionals Disagree about Autism

Monday, December 22nd, 2014

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

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

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

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

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

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

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

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

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

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

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

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

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

How Many Doctors Does It Take to Screw in a Light Bulb?

Sunday, December 14th, 2014

As seasonal changes come into full swing, too many moms are visiting too many physicians, and getting too few answers.

Children with immunologic difficulties who suffer conditions such as asthma, severe food sensitivities, eczema,or frequent infections are more likely to exhibit an increase in signs and symptoms under periods of increased metabolic stress.

The patient’s underlying situation may become more chronic or recurring. Or, there could be subsequent problems; the consequences of energy depletion and additional inflammation. So, parents wishing to hasten improvement, seek professional assistance.

Here’s where it gets tricky.
While traveling through an allergist’s territory, for example, the topic of recurrent or persistent ‘attacks’ may arise. The ‘allergy shots’ probably haven’t changed anything. Antibiotics are prescribed.

The doctor suggests that, perhaps an immunologist could figure it out.

Enter the doctor merry-go-round.
When another consultant is suggested (or, sometimes requested), there should be a realistic expectation about effects and side effects.

In this case, the typical response is a battery of tests that reflect immune functioning, according to that doctor. Results only represent the patient’s state of ill-health. A proper evaluation requires comparison to the child’s healthy state. Furthermore, by the time the tests become available, the clinical situation has probably already changed.

Often, steroids are added to the medical soup. The child feels a bit better, so returns to school and catches a cootie from another student.

More specialists are added.
Perhaps a different virus, a sinus infection, or an underlying allergic condition appears. Typically, a pulmonologist is the next stop. Another battery of labs and tests. Another confusing data set.

More steroids are added – inhaled, through nebulizers, and breathing treatments. Sustained improvement may not be achieved. Nowadays, the diagnosis of gastroesophageal reflux (GERD) is offered as a possibility, perhaps explaining the chronic and recurrent nature of the child’s condition.

A gastro-enterologist is then consulted. More tests add to the confusion. Prilosec or Zantac, potent stomach acid inhibitors, are prescribed. What is the concerned parent to believe?

Back to the Pediatrician.
The child who hasn’t improved by now is given a different, more powerful antibiotic. A discussion takes place about whether a New York specialist can offer better advice. In the meantime, academics and socialization have taken a back seat as families seek solid answers.

The primary doctor appears as confused as the parents about the next step. By this time, the patient is taking multiple, potent biologicals that may interfere with each other, or even make things more serious.

There is a solution.
Modern medical care is under scrutiny for the multitude of consultants, rarely resulting in better health care. There are often medication errors, with anxious and baffled patients who display little improvement – or worsen. The specialty of Pediatrics has been customarily exempt from such criticism, because of fewer medical complications.

As a mother recently exclaimed, “Do you think that I want to spend all of December traveling from one doctor to another? It takes a lot of work!”

One well-trained pediatrician, willing to consult with the specific specialists, who takes the time to understand what all those tests and medications represent for this individual, is the best answer. The professional who has the knowledge to interpret and clarify the picture offers the best opportunity for measurable improvement.

When the medical helm is steered by an effective professional, Mom has a lot more time to enjoy the season.

Ten Ways Pediatric Neurologists Can Help Autistic Patients

Monday, December 8th, 2014

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

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

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

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

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

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

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

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

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

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

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

‘Tis the Season to be Yeasty

Sunday, November 30th, 2014

seasongreat“Why does the yeast keep coming back? When will we be able to stop worrying about that?” Those are oft-repeated concerns from many parents of patients with ASD, who have noted remarkable improvements when their offspring no longer suffer from fungus.

At certain times of the year, more ASD patients seem to appear who display signs and symptoms of gut yeast. This list explains some underlying causes for this phenomenon. It can be sung to the tune of the Christmas Song or Dreidel Dreidel Dreidel.

Families travel. It is unlikely that they will come upon a road sign advertising “GF/CF/SF/SCD Fried Chicken”.

Likewise, running out of magic medications or significant supplements may lead to an increased chance of a yeast outbreak.

There are relatives who do not believe that food affects behaviors. Some try to sneak forbidden substances, just to prove that ‘The Diet’ is unnecessary. By the following day, there are often many new believers.

Traditional seasonal foods are usually not part of a restricted diet. In an effort to make the situation more ‘normal’, unfamiliar foods are provided that may lead to constipation or diarrhea.

Refined sugar and high fructose corn syrup are ubiquitous in processed foods. Yummy desserts can yield yucky, yeast-disturbed sleep.

Changes in weather often accompany a higher risk of viral and bacterial illness. Fevers and ‘colds’ frequently lead to antibiotic overuse that may result in yeast overgrowth.

“You’ve got to let them be kids,” said one parent who relented about the key lime pie. Another one lamented, “I paid for that ice cream cone – for a week!”

School personnel get relaxed about the diet in susceptible kids. Daily celebrations make the forbidden fruit even more appealing.

Junior has lots of new stuff (toys, packages, etc.) to put into his mouth. This provides an opportunity for a multitude of strange flora to explore your child.

Environmental alterations take place; such as a Christmas tree, ornaments pulled from the top shelves, and warm clothing exhumed from rarely-visited closets. This provides plenty of moldy allergens to over-tax the immune system.

Schools, homes, churches, etc. turn on the heating system for the first time; expelling blasts of spores. This may occur in climates as diverse as warm, wet Florida, or the chilly nights in dry Arizona.

With autism, the extra social and academic challenges at this time of year are overwhelming. This can lead to anxiety, poor(er) eating, aggression and sleep disturbance – giving the appearance of ‘yeasty behaviors’, even if that is not the cause. Family problems can produce a similar picture.

What to do about it:
Parents should not despair about this situation. Yeast in the G-I system is one of the few causes of the signs and symptoms of autism that CAN be successfully treated with safe and effective supplements, diet and medication.

This is a great time to provide natural anti-fungals, such as vinegar, garlic, olive leaf, etc., to the extent that products are palatable and well tolerated.

Under the supervision of an experienced physician, a course of a prescription anti-fungal may be just what the doctor ordered as a holiday ‘chaser’ for ASD patients affected with yeast.

Autism, Parkinson’s and Research

Tuesday, November 25th, 2014

11.23.14
This past weekend, a lavish fundraiser, benefitting the Michael J. Fox Research Foundation for Parkinson’s disease, was held in NYC.

Earlier in the day, there was a roundtable of directors, doctors, researchers, patients, families, and philanthropists. They all shared the common goals of preventing and treating this affliction.

It became clear how many similarities, and few significant differences, there were between this condition and autism, regarding the efforts to understand and resolve it.

By noting the strengths of successful organizations, other disease-specific foundations can find ways and means to improve their efforts. Ice-poured-on-the-head, a recent and somewhat successful fundraising gimmick, is not sustainable.

 Similarities:
•Numbers of affected patients ~1 million (US)
•Many more unrecognized
•Multifactorial etiology – genetic and environmental
•Diversity of presentations
•Recent increases in incidence and prevalence
•Large effect on CNS
•Large effect on bowel
•Poorly understood
•Lack of biomarkers
•Lack of specific treatment, mostly addressing signs and symptoms (with limited and varying results)
•Inability to generate enough big Pharma financial interest
•Both affect social condition and activities of daily living
•Chronic conditions

Differences:
♦Age of presentation
♦Number of genes implicated so far (multiple in ASD)
♦Solidarity of fundraising organizations

Research:
Last year, the Michael J. Fox organization spent nearly $69M on funding various projects. Summing up 2013 financial reports, it appears that Autism Speaks, Brain and Behavior Research Institute, Simons Foundation for Autism Research, and the National Institutes of Health generate nearly twice that budget.

Conclusions:
Funding-wise, perhaps our knowledge about ASD diagnosis, treatment, and prevention ought to be more advanced. This could be due to the situation in which more disparate theories about ASD than there are about Parkinson’s, so funding sources are more schizophrenic diverse. After all, it’s still being called “Autism,” as if it is only one discreet entity.

One of the most significant difficulties in furthering studies for Parkinson’s is the entry of patients into study protocols, which doesn’t seem as problematic in the autism community. (At least, the Namenda, secretin, and stem cell trials seemed to fill up quickly.)

An important weakness that was brought up in the afternoon roundtable was the lack of sharing among all the CNS-specific organizations. It appears that, with all the present computer-processing power, a great deal can be learned by amassing and understanding conditions such as diverse as Alzheimer’s, Lou Gehrig’s, Restless Leg Syndrome, and the rest.

Perhaps fifty years from now, but hopefully sooner, a more complete understanding of the brain will provide the framework for eliminating conditions such as Parkinson’s and autism.

The last event of the gala evening was Paul Simon playing “Me and Julio” on stage with Mr. Fox. It was truly amazing.

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