Archive for the ‘News-Maybe-Worthy’ Category

The Law, Antibiotics and Autism

Sunday, August 3rd, 2014

The Case:
A U.S. court ruled that the FDA is correct to continue to allow the administration of antibiotics to feed animals – even if they aren’t sick.
Argued: February 8, 2013 Decided: July 24, 2014

The Judges:
Robert Katzmann, Chief Judge, (has top notch credentials, and wrote the minority opinion.)
Gerard Lynch, Circuit Judge, (wrote 2-1 majority opinion). More about him later.
Katherine Forrest, District Judge, (a really rich, “celebrated litigatrix“).

The plaintiffs:
Natural Resources Defense Council - “One of the nation’s most powerful environmental groups… A credible and forceful advocate for stringent environmental protection.”
Center for Science in the Public Interest - Founded by 3 “scientists, CSPI carved out a niche as the organized voice… on nutrition, food safety, health and other issues… to educate the public, advocate government policies that are consistent with scientific evidence on health and environmental issues, and counter industry’s powerful influence on public opinion and public policies.”
Food Animal Concerns Trust – “Mission… is to improve the welfare of farm animals; address public health problems such as the safety of meat, milk, and eggs; broaden opportunities for family farmers; and reduce environmental pollution.”
Public Citizen, Inc. - “… serves as the people’s voice in the nation’s capital… To ensure that all citizens are represented in the halls of power.”
Union of Concerned Scientists – “puts rigorous, independent science to work to solve our planet’s most pressing problems. Joining with citizens across the country, we combine technical analysis and effective advocacy to create innovative, practical solutions for a healthy, safe, and sustainable future.”

The defendants:
Margaret Hamburg, commissioner of FDA. She is a Harvard-trained medical doctor, and appears to be a strong consumer advocate.
Bernadette Dunham, Director - Center for Veterinary Medicine. She was a clinician, professor, and has served as an advisor to several veterinary panels.
Kathleen Sebelius, Secretary of HHS, who took heat for the Obamacare Website debacle.

The Issue:
A lower court had decided that the FDA should have hearings about antibiotic use in animal feed. This challenge, brought by the FDA, was that they didn’t need to review the issue.

The Ruling:
The FDA won.
Rather than considering antibiotics in the feed as a public health hazard, Judge Lynch (good name) focused his ruling on “… a syntactically awkward variation that leaves the intended sequence ambiguous.” The Catch 22 is whether the drug can be withdrawn if it is thought to be unsafe, but it can’t be declared so until there is a hearing, which the FDA is not required to do.
The explanation contains 10 pages that document scientists’ concern about antibiotics in the animal feed. It is followed by 55 pages that explain why the ruling by the previous court was incorrect. “In an ideal world, Congress would have written a statute that clearly selects between one of these two possible readings. But as the statutory language is ambiguous, we must do our best to determine which of these two meanings Congress intended to convey.”

Discussion:
I asked former Florida Assistant Attorney General, Mr. Hugh Keough , about this case. “The dissent was by the Chief Judge of the District… Interesting discussion about antibiotics especially after all I’ve read from you about over prescription of antibiotics…”

“Indeed, the FDA has consistently reaffirmed that using low doses of antibiotics on healthy livestock to promote growth could accelerate the development of antibiotic‐resistant bacteria, causing “a mounting public health problem of global significance.”

The “decision allows the FDA to openly declare that a particular animal drug is unsafe, but then refuse to withdraw approval of that drug. It also gives the agency discretion to effectively ignore a public petition asking it to withdraw approval from an unsafe drug.” (Dissent).
Mr. Keough exclaimed, “17 Years ago the World Health Organization recommended ceasing! Uh, is it time to go vegetarian?”

Conclusions:
The plaintiff’s issue was the emergence of resistant strains of bacteria. However, there may be profound, as-yet undiscovered effects. Somehow, can’t the FDA see it’s way to erring on the side of caution?

In 1999, the Journal of Pediatrics, published a study documenting, “Unrecognized gastrointestinal disorders, especially reflux esophagitis and disaccharide malabsorption, may contribute to the behavioral problems of the non-verbal autistic patients.” If you don’t think that autism is an epidemic, and you don’t consider that childhood development could be affected by the overuse of antibiotics, then you wouldn’t ever know whether antibiotics in our food is a threat.

 Given this decision, it’s going to be a while until any change is made in this area.

 Don’t allow your doctor to prescribe antibiotics for every little illness, and don’t beg for them, either.

 Take strong probiotics – lots of colonies, with varied strains.

 Try to eat as ‘organic’ as possible (given that they are telling us the truth about ‘organic’).

 If we want better oversight, we should let our government know.

Autism – The Money Issue

Sunday, July 13th, 2014

While ‘expertscontinue to debate about the autism epidemic, parents are paying the price.

This week, the Journal of the American Medical Association published a study from the US and UK that documented a cost of (US$)1.4 million over a lifetime, if there was no intellectual disability. That’s seventeen thousand extra per child per year - 1/2  of the US median income. Add another 1 million dollars if mental problems persisted (46% in one study).’

Of course, I’m preaching to the choir here. Families are well aware of the financial burdens. The problem seems to be that the medical profession is clueless. Parents are told to get therapies that are very expensive, and even if they are ‘covered’ by insurance, the co-pays can be prohibitive. And, if the child fails to meet intellectual milestones? More therapy.

In 1987, Dr. Louvaas reported, “Follow-up data from an intensive, long-term experimental treatment group (n = 19) showed that 47% achieved normal intellectual and educational functioning, with normal-range IQ scores and successful first grade performance in public schools. Another 40% were mildly retarded and assigned to special classes for the language delayed, and only 10% were profoundly retarded and assigned to classes for the autistic/retarded. In contrast, only 2% of the control-group children (n = 40) achieved normal educational and intellectual functioning; 45% were mildly retarded and placed in language-delayed classes, and 53% were severely retarded and placed in autistic/retarded classes.

In 2010, Dr. Grenpeesheh, “… completed a study which found that 6 out of 14 severely autistic children who obtained treatment by CARD had fully recovered.That’s 43%. 

Regardless of the exact diagnosis, the reasons for increasing numbers, and questions about ‘recovery’, the lifetime costs of caring for more than half of the patients with ASD are considerable.

The commentary in that aforementioned issue of JAMA was entitled Autism – Moving Toward an Innovation and Investment Mindset. The Drexel University professors wrote, “…We wish to reflect further on the conceptual and measurement advances needed to reach a point where we can meaningfully link investments in services to life course outcomes…”

This is an indication that conventional medicine will be forced into evaluating the epidemic from the financial side, even as science fails to provide data supporting flawed theories. “… This accomplishment is especially remarkable given the challenge presented by a profound lack of infrastructure for routinely monitoring costs and outcomes in people with autism spectrum disorders.”

An important finding in the study was that the second highest cost of autism was lost productivity to family members who must care for an affected patient. That means that earlier diagnosis, with prevention of long-term disability, and the amelioration of intellectual disabilities, will have the greatest effect on decreasing costs.

I am not qualified to offer financial planning advice. There are experts on that side of the equation. Given the present state of our understanding about the cause(s) and useful autism treatment(s), such assistance in assuring your child’s future may prove valuable.

Protocols provided by MAPS physicians are certain to impact these tremendous expenses. At The Child Development Center, we have been very successful at achieving neuro-typical educational status by 1st to 3rd grade in the majority of infants and toddlers. That is a tall statement to make, and it is not offered lightly. Biomedical protocols involve a great deal of work by the families and counseling by the staff. Traditional therapies, such as behavioral, physical, occupational, and speech are a necessary accompaniment to assure improvement.

As noted in the editorial, “We need to recognize innovations that are already occurring in community settings and establish ways to learn from them about what works for whom. Accumulating practice-based evidence will require mutually beneficial partnerships between researchers and community health care… This approach would foster active learning from experience.

As in other medical conditions, such as hypertension-arteriosclerosis-heart disease or the HIV epidemic, a sizable cost savings may be the initial driving force to accurate diagnosis and effective treatment. If that is the impetus resulting in better medical care for autism, that’s OK, as well.

It’s Not the Asperger’s Syndrome

Sunday, June 1st, 2014

Let’s face it; anyone who goes on a shooting rampage has some mental illness. Often, it seems there was a history of family turmoil, few friends, bullying, and lack of empathy. That does not define Asperger’s Syndrome, which is a developmental disorder.

Recent sensational violent acts by young men could be due to a number of conditions, including:
∗ ADHD with feelings of inferiority because of poor performance
∗ Schizophrenia
∗ Personality disorder
∗ Watching violent video games
∗ Oppositional Behavioral Disorder
∗ Acute or transient reactive psychosis
∗ Reactive Attachment Disorder
∗ Subject to abuse
∗ Temporary insanity
In deranged individuals, such as the Connecticut and California shooters, psychiatrists would probably entertain even more possibilities.

There is no precise manner to define Asperger’s Syndrome after someone expires. The conditions that explain impulsive conduct are inaccurate, at best. Psychiatric diagnoses need to be assessed in real-time by documentation of signs and symptoms. Regarding the recent carnage, family members (and their lawyer) reportedly claimed that Elliot Roger was “on the spectrum,” and suffered a long history of mental difficulties.

How about focusing on the histories of mental illness
with easy access to firearms?

The Autism Epidemic that has blighted the child development landscape of the 21st century is a mystery, with vague descriptors and the recent inclusion of many other developmental problems, including Asperger’s and PDD-NOS. The public is left to wonder, “Why so many killing sprees?” The media is quick to supply an answer, “Perhaps it is those autistic (Asperger’s) kids!”

I have examined scores of patients who fit criteria for the disorder. Effective communication is difficult; some are depressed, some understand and address their challenges, and others who say, “That is the way that I am.”

Key traits include early developmental delays, an unusual affect, restricted interests, decreased eye contact and sensory issues. They are usually very standoffish individuals who feel uncomfortable outside of their usual environment.

There is not a great deal of published information about the association between violence and Asperger’s syndrome. In one study, 31 of 37 of the patients (85%) had a possible or probable comorbid psychiatric disorder.

A 2010 follow-up paper concluded, “The mean percentage of registered convictions was similar to that in the general male population of Austria over the studied time period. A qualitative assessment of offence types in Asperger’s former patients suggests that the nature of offences does not differ from that in the general population. In this original cohort of Asperger’s patients, convictions were no more common than in the general male population.

We should be very skeptical about media pundits’ experience, statements and motives. Sensational reporting is unfair and irresponsible because it assigns to Asperger’s patients a stigma that they do not deserve. There are many more examples of productive individuals than violent criminals committing heinous acts due to their autism diagnosis.

Just because Asperger’s Syndrome is the “diagnosis du jour,” it doesn’t mean that there is a shred of proof that affected individuals commit brutal crimes or that they are any more prone to such violence than those who are not so classified.

International Meeting for Autism Research 2014

Sunday, May 18th, 2014

My medical lifetime has experienced several epidemics. Although such problems are devastating to families, we learn a great deal of general science by uncovering the secrets of each new disorder. Think of Legionnaire’s disease (bacteria), the Norwalk virus, helicobacter (stomach ulcers), etc. Regarding the conditions that now fall under an autism diagnosis, these are exciting times for study and discovery.

At this conference there were 1800 attendees from all over the world, and nearly 1000 research papers. It has been great watching this organization grow; bringing advances to the science of autism spectrum disorders.

What I Liked:
This years Advocate Award went to Peter Bell. He is a true contributor to autism. More than simply offer an acceptance speech, he did a great job of expressing to this diverse, but research-oriented group, his “Top 10 List” for audience understanding. That included finding causes and treatments, environmental associations, lifetime services, and recognizing patients’ humanity, with the urgency that a only parent could feel and express.

Then, there were the short conversations with the presenters. I spoke with a pediatric neurologist who presented his work on Vitamin B12 and folic acid. Another was a social worker, whose study concluded that the new DSM 5.0 would result in fewer diagnosed cases. I couldn’t agree less, so I was able to discuss it.

At lunchtime, I sat with a distinguished, rather humble, retiring psychologist from a prominent New York clinic who said, “maybe 5% of our patients report G-I problems.” I took the opportunity to offer, “Gee, that is awfully low. I would sure like to test those patients with my protocol.”

I spoke with a young researcher whose paper detailed the changes in the neuron-type cells of the intestines, which is work that will elucidate gut alterations that might explain various autistic features.

There are so many young and promising minds. Just as HIV research enriched our knowledge of DNA, RNA and viral-human interaction, autism is enhancing scientific understanding of the development and function of the brain.

What I Didn’t Like:
There were few papers and presentations about environmental and epigenetic effects leading to the epidemic. For that matter, there was little discussion about the presence of an epidemic, though I suppose that would have been preaching to the choir.

Also, I think that there needs to be more work on how co-morbidities play into ASD. As a clinician, I find that problems, such as those in the G-I system, sensory difficulties, sleep disorders and anxiety, need to be studied as the very fabric of the condition.

Finally, this is not so much of a complaint, as a fact of life, but there is so much to read and learn in just a few days. There just never seemed to be enough time.

Best Thing at the Meeting:
Dr. Fred Volkmar, Yale autism expert, got a Lifetime Achievement award. He is an energetic and fascinating teacher who noted how few treatment studies are yielding success, especially compared to the explosion in the volume of research. Dr. V actually expressed his frustration that much of the work is not actually getting to the parents and the children.

This famous professor expressed an understanding of how parents seek Internet answers in the absence of viable medical alternatives, which is such a rare point of view in the academic world.

Conclusion:
The knowledge and information that ripples from this scientific meeting and the people who continue this work will make a difference. Perhaps not one particular study or that trial, but by their dedication to becoming part of the solution, parents can be assured that you have champions on your side.

You can access the research abstracts here.

Autism Wars II: The Wakefield Effect

Tuesday, May 13th, 2014

This month, Pediatrics published a paper indicating that there was, in fact, a “greater prevalence of GI symptoms among children with ASD compared with control children.” 
OK, so far.
Not really groundbreaking information, but it did appear in a mainstream, well-respected, scientific journal.

Somehow, the authors felt compelled to include an opinion that the medical profession has been delayed in studying this gut-autism association. The Discussion section includes, “Previous controversy surrounding the MMR vaccine and proposed causal link between ASD and infection of the GI tract probably deterred investigators from dedicating resources to examine GI functioning in this population while fostering uncertainty in the ASD community regarding the validity of this line of inquiry.
Not OK.
Investigators are not prevented from pursuing certain lines of thinking. In fact, there are several follow-up studies challenging the original postulation. That’s science, right?

Shortly thereafter, Forbes autism blogger, Emily Willingham, followed with a piece actually naming the culprit. She tattled that it was the nefarious Dr. Andrew Wakefield. He is the British pediatric-surgeon-gastroenterologist-fallen-from-grace who has been accused of concocting the measles-vaccine-autism association in order to gain riches and international fame. Thanks, Em, otherwise we wouldn’t have known who they meant.
Really not OK.
The science writer penned another less-than-illuminating piece. She posited her somewhat unconventional point of view that anxiety is the cause of many G-I disturbances, rather than the other way ’round. What has that got to do with “Blame Wakefield For Missed Autism-Gut Connection”? Has that delayed ‘Dr.’ W’s research, as well?

Yikes.
Can we get some facts straight here?

Fact: The title of the original article in question was, Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children.
It began as a series of case reports, which has been totally blown out of proportion. Some of the patients had an autism diagnosis, assigned by other specialists.

Fact: The conclusion of that paper, We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.”
Does that sound like science or sedition?

Fact: Dr. Leo Kanner, father of modern child psychiatry and inventor of the “autism” classification in the 1940′s, first reported on 11 patients, 8 of whom had G-I signs and symptoms. He called the problem a psychiatric disorder. That delayed correct diagnosis and treatment for about 50 years (and continues to slow the process because of the ASD inclusion in the Diagnostic and Statistical Manual of Mental Disorders).
Anyone angry about that?

Fact: Bruno Bettelheim helped prolong the ‘Refrigerator mom’ theory throughout the 60′s and beyond.
With a thick Austrian accent and faked credentials, he appeared on talk shows and became famous with that stupidity, not infamous.

The Wakefield Effect
Why is there such an emotional connection with this condition? It’s the Wakefield Effect. Because of this debacle, anything having to do with autism that is not sanctioned by the mainstream is considered an aberration; including special diets, yeast in the G-I system, vitamins, and toxins in the environment. Regarding certain establishment fixtures, such as vaccination, anyone who pursues a course of action other than the teachings of the Church (Big Pharma+ Conventional Medicine) is to be expelled from the religion and sent packing to other ports of call. With the availability of the Internet and Social Media, innuendo turns into truth.

I have met Dr. W and heard him speak several times. He is good-looking, articulate, charismatic, and tells a compelling tale. He probably could have continued his research, and even received funding, if he had followed his original work with more humility and sense of uncertainty. If this was a hoax or part of some grander plan, it has certainly failed as he (and his work) falls into obscurity.

Rather than discuss biology, genetics, objective research strategies and prospective trials that could assure safety and effectiveness, the public is fed dogma and discord. The wrong line of reasoning is being followed and now appears in more diverse venues, including popular, financial and even scientific publications.

Perhaps it is less interesting and more complicated, but the best antidote to the Wakefield Effect is for medicine to drop this non-issue and move on. The media wants controversy, but parents want answers.

A Mother’s Intuition About Autism

Saturday, May 10th, 2014
Mother's Day 2014

Mother’s Day 2014

Every new patient at The Child Development Center has a unique history and physical presentation. Often, however, the children share the experience that their mother:
a. Already knew, or highly suspected, ASD, and
b. Heard the doctors proclaim that they were “reluctant to make a diagnosis, at this time, because the child is so young.”

Is there any other serious medical condition that carries this ‘wait and see’ attitude? “It’s probably not cancer, so let’s wait a few months and see what grows.” “The eardrum looks red and is bulging, if the fever gets any higher we will consider antibiotics.” “I hear wheezing, call us in a day or two.” And vaccinations? The first one is foisted upon newborns, with many more to follow, in order to prevent disease.

Study after study documents important gains that come from early intervention for developmental delays. Despite that, there are neurologists and psychiatrists who continue to claim that “You can’t make the autism diagnosis before the age of 2 or 3.” That imposes a waiting period, postponing intervention at the most critical juncture of development.

In order to assign an accurate diagnosis, both the DSM IV, and the present iteration of the Diagnostic and Statistical Manual of Mental Disorders 5.0, contain the stipulation that delays should be noted in early childhood. The previous manual stated, “Delays or abnormal functioning… with onset prior to age 3 years… ” The present DSM 5.0 describes, “Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).” There is no mention of a waiting period.

Yet, in the midst of this epidemic, and with all of the press coverage about the rise in autism, mother is usually the one who makes the diagnosis. Is it any wonder that the parents go to the Internet to get their information or seek alternative treatments when the doctors weren’t even willing to assign a diagnosis, let alone suggest any therapy?

At our Clinic, there are now many younger siblings of children who carry a ‘Spectrum’ diagnosis. Some demonstrate developmental red flags. A 2 year-old male who doesn’t speak and walks on hs toes but shows good eye contact. A 1 year-old female who turns to her name, but doesn’t stand or vocalize. A six month-old boy who suffers from GERD, eczema and chronic diarrhea.

The youngsters were all high-risk and the mom couldn’t sleep, worrying about the future. What is wrong with offering immediate action targeted to specific symptoms? The youngest children can use a probiotic, stop using PPIs and stay away from antibiotics. The older ones need speech and language, OT, ABA and/or PT. STAT.

These are real examples of some brothers and sisters who have gone on to neuro-typical development. Did earlier intervention prevent autism? Bottom line – who cares?

Try this analogy: It is the Middle Ages and The Plague has struck several neighboring cities. The first sign is a flu-like illness that rapidly advances, ending in death. So, when a local sufferer visits the doctor because of a runny nose and sore throat, the physician should be thinking “The Black Death,” not a cold.

Twentieth century poet Helen Steiner Rice wrote, “A mother’s love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking.”  When Mom thinks that something is wrong and the doctor dismisses it, saying “It will probably will go away,” families should run, not walk, to a professional who will listen.

Happy Mother’s Day
f
rom Dr. Udell
and the staff at the Child Development Center

The Autism Wars: Frank Bruni vs. Jenny McCarthy

Friday, May 2nd, 2014

Perhaps to mark the end of Autism Awareness month, but seemingly out of the blue, New York Times op-ed contributor, Frank Bruni, decided to weigh in on the vaccination-autism non-connection issue with this April 21, 2014 article. He accused Jenny McCarthy of being an “agitator… the intemperate voice of a movement that posits a link between autism and childhood vaccinations and that badmouths vaccines in general, saying that they have toxins in them and that children get too many of them at once.”

In this corner – Foodie Frank
Who is Foodie Frank to attack Gorgeous Jenny? His bio in the Times describes, “Over his years… he has worn a wide variety of hats, including chief restaurant critic… Rome bureau chief…  also written two New York Times best sellers: Born Round (“as in as in stout, chubby, and always hungry”), and Ambling Into History, (about George Bush)… coauthor of A Gospel of Shame: Children, Sexual Abuse and the Catholic Church.” Wikipedia adds that he “… became the first openly gay op-ed columnist…” of the Times.

Nothing in Mr. Bruni’s curriculum vitae points to any learned knowledge of science, biology, immunology, ecology or child development. The only extant association between Mr. Bruni and autism is this vacuous article that he penned. There is no evidence that he possesses any special information. Oh, that’s right, he did say that Yale’s autism expert, Dr. Fred Volkmar, told HIM that the vaccination controversy “diverts people from what’s really important, which is to focus on the science of really helping kids with autism.” A diversion from the important stuff, huh? As in, this bullshit op-ed story.

And, in this corner – Gorgeous Jenny
And what role does Jenny McCarthy play in this complicated, emotional and misunderstood quagmire that is the present autism epidemic? Her pediatricians didn’t even know what she was talking about when her child was diagnosed with autism. The conventional medical community says that, “Autism is what it is… you got what you got… deal with the situation and get (really expensive and difficult-to-find) therapies. Good luck.”

Parents are admonished not to listen to anyone who says that they can help with medical treatment, other than the standard psycho-stimulant meds. Even if Mom witnesses a change (from a GF/CF diet, e.g.), professionals warn that “It’s probably just a coincidence, like that disproven vaccination theory.”

Ms. McCarthy warned the country and the world that a storm was coming. Regarding ASD, doctors have displayed ignorance at best, and have even caused harm, due to delays and misdiagnosis. And, while we’re on the subject, if it turns out that her son, Evan, has one particular version of autism, that hardly constitutes some sort of fraud for the purpose of gaining visibility. Smack of bullying, Frank?

The child’s complicated diagnosis – made by the doctors -  doesn’t make McCarthy someone “who sows misinformation, stokes fear, abets behavior that endangers people’s health.”
Only the CDC, FDA, and AMA are allowed to do that.

I have been witness to the miraculous improvements served by childhood vaccinations. I recommend them to our patients; perhaps more diligently than might serve the ‘herd’, however, in susceptible individuals, doctors need to be very conservative. It shouldn’t be so complicated for the medical community to produce independent, prospective studies about the present vaccine schedule with 3 year follow-up aimed at developmental outcome, especially as it applies to higher risk infants.

No Winner is Declared
My advice is for Mr. Bruni to go back to his core competencies, Ms. McCathy to continue to fight for her child and help raise money for autism awareness-treatment-and-prevention, and for medical science to work on a better explanation(s) for this epidemic.

An agitator produces lots of heat with little light.
What a desperate mother does, is search for answers why her perfect, beautiful toddler became non-responsive and stopped talking.

Early Experience with GcMAF Therapy for Autism

Sunday, February 2nd, 2014

This is a very preliminary report about our first 15 patients who wished to administer a trial of GcMAF for their moderate-to-severely affected children, whose primary diagnosis was ASD.

Treatment utilizes a substance derived from a purified blood product, administered weekly by subcutaneous injection. It is supposed to help ‘heal’ the immune system. The background information was first described here.

Patient profiles:
♦ All of the children had a complete history, physical examination, laboratory testing, and various other interventions, and were under Dr. Udell’s care.
♦ All of the children were either on/ or had experience with conventional therapy (ABA, S&L, OT, PT), complementary and alternative therapies (‘DAN!’), and multiple medications; from Risperdal to Prozac (conventional), Namenda to Bumex (experimental), stimulant meds to anti-anxiety preparations.
♦ Patients were diagnosed by a pediatric neurologist, confirmed and documented at each Child Development Center visit.
♦ All the children had severe speech apraxia, with very little improvement from years of S&L therapy, prompting the parents to want further options.
♦ All of the children demonstrated various and persistent repetitive behaviors, sometimes quite disruptive and/or abusive (to self and/or others).
♦ All of the children experienced social isolation.
♦ All of the patients had elevated nagalase levels (>0.95) prior to therapy.
♦ Parents were made fully aware of: risks/benefits/other therapies/no therapy and wished to proceed.
♦ All the families kept in close contact with our staff and Medical Director.

Present protocol:
 The original explanation can be found here. With increasing experience, some variations have taken place, and a more conservative protocol has evolved:
• Families obtain the product from here, and are instructed to keep the vial in the freezer. • Small syringes are ordered from the local pharmacy.
• Most of the patients prepared syringes for 5 months, freezing them for storage and hand-warming prior to administration.
• Instead of weekly abdominal or arm ‘shots’, a narrow angle into the buttocks appears to be well-tolerated.
 In addition to routine laboratory investigations, vitamin D and cholesterol were addressed before initiating therapy, by testing and intervention as necessary.
 The initial dose was tiny (0.02 cc) and increases were decided each week after discussion with our staff.
 Parents agreed to keep in close contact with the staff and give weekly reports about any changes.

Experience so far (1 – 8 months):
Older (> 5 years) seem to do better than younger children, as far as improvements in communication and behaviors.
In the first months, some patients have reported no change, others show dramatic improvements in signs and symptoms, and still others have exhibited very challenging disruptive behaviors that diminished with time.
 Most parents were satisfied enough to re-order the product without nagalase re-testing or even an observation period without GcMAF.
To date, improvements appear most dramatic in the preteen females.
√ Two younger males discontinued the treatment because of no effect.
√ No parent discontinued treatment due to negative effects.
Side effects included initial hyperactivity, rashes, mild fevers.
In many of our patients who were tested – and found to have elevated nagalase levels – the parents were satisfied enough with their present protocol of G-I optimization and mitochondrial support, and have not initiated this therapy, so far.

Conclusions:
No definite assertions or conclusions can be made, from this limited trial, at this time.
I have been impressed, however, at the dramatic improvements that some of children have made. This includes speech acquisition and usage, cognitive function advances, and behavioral changes.
GcMAF does not work in every child, but the ones who do improve have experienced change that hasn’t been apparent in many years.
So far, safety is best assured by close contact with the parents so that weekly dosages can be altered and other interventions, such as yeast treatment, can be provided.
Costs are kept to a minimum because families order and obtain the supplement directly from the manufacturer.

Discussion:
A more detailed report will be submitted to various appropriate venues for review and publication. Hopefully, someone will take notice and perform a more rigorous evaluation. Parents of affected children simply can’t wait for this information, if the treatment is safe enough, not too costly, and reasonable to administer. After all, medications that are approved for behavior control are expensive, as well. Furthermore, at their best, traditional pharmaceuticals possibly diminish aggression and hyperactivity, but don’t improve neurologic function.

As in all medical conditions, if you are considering GcMAF therapy for your child with moderate-to-severe ASD, you should seek advice and treatment only from a trusted professional who has examined, and is closely following, the patient.

Ten Tips to Navigate the New DSM-5

Sunday, January 26th, 2014

DSM45A recent medical report predicts that the latest iteration of the criteria required to assign a formal diagnosis of ASD will result in a decreased number of reported cases. In their conclusion, the authors state, “this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria.”

The hype seems to be that there isn’t so much of an epidemic as advertised. Some think the new standards will be a more accurate reflection on the scope of the problem. It could mean that parents who believe their children need treatment will have less access to services, because required DSM-5 criteria may not be met.

Parents and practitioners need to understand the landscape because useful interventions might not be afforded to those who can benefit most. Therapies are more likely to be successful when there is less functional impairment.

For better or for worse, families that utilize, and/or expect to receive services, will probably experience little change.

These tips might help make sure that your children get the treatments they need.
1. It’s complicated. Try to familiarize yourself with the pertinent changes in the new criteria as they apply to your child. For evaluation and treatment purposes, don’t be concerned about other conditions that have been added or left out, if they are not your child’s issues.

2. Though Aspergers’ patients may be upset that there is no longer a defining nomenclature, communication disorders are now included in a much broader sense, actually. So, take advantage of available interventions.

3. Because PDD-NOS is now incorporated, developmental interventions should become available for a wider variety of conditions, which may not have been supported in DSM-IV. If your child has been given this diagnosis previously, and few/no services were offered, such inclusion should help.

4. Documenting the level of impairment requiring support is imprecise and quite subjective. Pointing professionals in the right direction will help ensure that services are ordered.

5. Although “impairments in communication” have been eliminated, there are several other designations that cover many commonly observed problems. These include deficits in conversation, relationships, and speech.

6. One requirement for diagnosis is the demonstration of “Restricted, repetitive patterns of behavior…” Just about all stimming is going to fulfill this criterion. Plus, sensory symptoms are now included.

7. ‘Social interaction’ continues to be a key issue for the ASD diagnosis. Clinically, kids who don’t/won’t play are a real challenge. Make sure that any formal assessments include this deficit, if it exists in your child.

8. It took 17 years to get to DSM-5. Supporting information appears to be more than 3 years old; so, in an evolving epidemic, we still might be missing the mark. The good news is that the powers-that-be seem to demonstrate an open mind, at least in the conferences that I have attended. Formal evaluations may require frequent revisions to stay up to speed on this moving target.

9. No longer should doctors assign the mushy “Oppositional, sensory, ADHD, poor focus, developmental delay” diagnosis. It’s called Autism Spectrum.

10. In this highly fluid environment, the doctors, teachers, administrators, therapists, and other professionals involved in your child’s care need to stay up-to-date, so that they can steer you in the right direction.

Autism Review 2013

Sunday, December 29th, 2013

Here is this year’s crop of stories (listed in Medical News Today) that I consider to be the most informative, interesting, and likely to change the knowledge base concerning the epidemic of childhood signs and symptoms presently called Autism Spectrum Disorder.

January
Can Children Lose Their Autism Diagnosis? - Uh, yes. And, many more than this group reports.
New Gene Variants Linked To Autism Discovered - The perfect storm of environmental toxins and susceptible individuals (genetic variation).
Epilepsy Drug Linked To Increased Risk Of Autism - The perfect storm of environmental toxins (medication) and susceptible individuals.

February
Feeding Problems And Nutritional Deficits A Significant Risk For Children With Autism - Ya think?
Attention Deficits Picked Up In Babies Who Later Develop Autism - The ‘Spectrum’ diagnosis involves a combination of signs and symptoms, not just the ‘core’ deficits.
Help Needed For Youths With Autism Spectrum Disorder Transitioning To Adult Health Care - Transitioning in general, don’t you suppose?
Autism Study Finds Behavioral Therapy For Children Can Impact Brain Function - So, the autistic brain can exhibit plasticity. Just like every other human brain.
Brain Connections Differ In Kids With Autism - There were lots of brain connection articles this year. The problem is understanding WHY the brains work that way, since it’s pretty obvious that some circuits are crossed and/or missing.

March
Study By Kennedy Krieger’s Center For Autism And Related Disorders Reveals Key Predictors Of Speech Gains - This is why it’s so important for kids to play with others.
Suicide Ideation And Attempts A Greater Risk For Autistic Children - Why doctors shouldn’t put teenage patients on anti-psychotic medications.
Old Drug Offers Hope For New Autism Treatment - This article covers it all; inflammation, immunity, the environment, mitochondria, stress and recoverability. It’s just in a mouse model, but offers a unifying theory.
One In 50 Kids Has Autism In U.S., CDC - And, we’re still arguing the ‘E’ word (? epidemic ?)
Gaze Shifting Delay Has Potential To Diagnose Autism At 7 Months - Plenty of research about earliest diagnosis, not much about how to intervene.
Multiple Vaccines Not Linked To Autism Risk, CDC - So they keep telling us.

April
Link Between Autism And Increased Genetic Change In Regions Of Genome Instability - The perfect storm… you get it.
Minocycline Show Benefits In Children With Inherited Cause Of Intellectual Disability And Autism - Some assistance for patients with Fragile X syndrome, one of the known causes of ASD.
Study Shows Different Brains Have Similar Responses To Music - Love of music is universal.
Propranolol Could Improve Working Memory In Autism - Several of the older blood pressure medicines perform in some fashion to help affected individuals.
Taking Valproate While Pregnant Raises Autism Risk - Drugs taken during pregnancy may not be good for the developing brain. Well, at least it’s in print now.
A Newborn’s Placenta Can Predict Risk For Autism - Now, there’s an early predictor! Again, what to do about it?
Significant First Step In The Design Of A Multivalent Vaccine Against Several Autism-Related Gut Bacteria - Formal recognition that there is a gut-brain connection in autism.

May
Researchers Successfully Treat Autism In Infant - OK, so maybe you can do something about the earliest red flags.
Early Intervention Program For Children With Autism Found To Be Cost Effective Through School Years - More documentation such as this is needed so that governments, insurance companies, and the like will take notice.
Link Between Epilepsy And Autism Found - The literature reports that 40% – 80% of patients have seizures (much lower at The Child Development Center, however).

June
A Third Of Autism Cases Also Have ADHD Symptoms - It’s not ALSO, it’s an integral part of the picture for some children.
Autism Discovery Offers Hope For Early Blood Test And Therapeutic Options - One of the reasons that I prescribe tryptophan (5-HTP) to address some ASD signs and symptoms.
Racial And Ethnic Disparities Found In Gastroenterology, Psychiatry Or Psychology Care For Children With Autism - Yeah, professionals need to get on the same page.
Air Pollution Raises Autism Risk - The environment. Again.
Single Mutation Can Destroy Critical ‘Window’ Of Early Brain Development - Genes. Again.
Autism In Children Affects Not Only Social Abilities, But Also A Broad Range Of Sensory And Motor Skills - Recognition of signs and symptoms that every parent of an ASD child observes. More such information was published subsequently.

July
The Gut May Offer Clues About Autism - By now, even pediatric gastroenterologists should be getting the message.
Autism Training Program For Pediatricians Meets ‘Critical Need’ For Earlier Identification - Until now, I don’t think that my fellow pediatricians are doing such a great job at early diagnosis.
First Full Genome Sequencing For Autism Released By Autism Speaks Collaborative - This kind of valuable information is why all of the parties in the autism community should work together, rather than criticize each other in public forums.
Early Intervention Benefits Young Children With Autism Regardless Of High-Quality Treatment Model - So, if early intervention helps, and we can make the diagnosis earlier, then the situation should be improving. Right?
Oxytocin not found to offer symptom relief in autism - A bunch of these articles this year, both pro and con. My experience is that it does help in a small percentage of affected individuals.
Fresh fuel reignites Asperger’s debate - Combining two conditions that we don’t understand – couldn’t that make us twice as ignorant?

August
Oxytocin, the ‘love hormone’ may have relevance in autism - This was one of the ‘pro’ articles.
New research sheds light on previously under-researched area of study – females with autism - We really need more information about the difference between boys and girls with ASD.
Induced labor linked to higher autism risk - Here is my advice (as a Board-Certified Neonatologist): Have the baby when the time comes. Sometimes, Mother Nature does know best.
Risk of autism in further children – study findings - This is the type of information that prospective parents frequently seek, and little is really known.

September
Young adults on the autism spectrum face tough prospects for jobs and independent living - This highlights why early diagnosis and intervention are so vital.
Genetic disorder 22q could be misdiagnosed as autism - Or, this could be just one of the causes of autism. No?

October
Improving understanding of brain anatomy and language in young children - This is the type of knowledge that needs to be elucidated as we try to solve this puzzle.
New cases of autism in UK have levelled off after five-fold surge during 1990s - Well, good for England (if it’s true). This is not the case in the U.S., or most other countries, however.
Autistic children look less friendly to peers - And, vice-versa, I would say.
Web-based autism intervention tool shows promise - Lots of tech stuff for autism appeared this year. I still like Proloquo2Go the most.
Link examined between pregnancy weight gain and autism spectrum disorders - An even EARLIER diagnosis. How about a fetal Speech and Language therapist?

November
Health-care changes needed to help adults with developmental disabilities - Much more information needs to become available to address the growing numbers of older individuals with autism.
Autism increases risk for synaesthesia - Maybe shedding some light on the sensory issues in ASD.
Relationship between bedroom media access and sleep problems among boys with autism - As if parents didn’t know this! Well, it’s official, now.
Gender differences in gene expression in male and female brains - I’ve described this clinical difference before. There’s the “girl kind”, and the “boy kind”.
Autistic children’s ability to perform everyday tasks improved by occupational therapy - This one should help with insurance reimbursement.

December
Genes and air pollution combine to increase autism risk - Circling back… genes and the environment.
Brain function in children with autism improved by a single spray of oxytocin - It works. It doesn’t work. Which is it?
Autism-like behaviors in mice alleviated by probiotic therapy - Human probiotics, by the way.
Research linking autism symptoms to gut microbes called ‘groundbreaking’ -  Well, it’s important, but groundbreaking? This association has been ‘documented’ since the “Refrigerator Mom” days.
Hospital infection in pregnancy tied to higher risk of autism - Perhaps it’s the antibiotics that are given, not the infection itself?

Hopefully, 2014 will bring more in-depth research with targeted treatments, so parents will have an increased number useful protocols to assist their developmentally challenged children.

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