Archive for the ‘News-Maybe-Worthy’ Category

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.

Books About Autism cont’d

Sunday, December 1st, 2013

Occasionally, texts appear that are so compelling, they are assigned to my Official Autism Library. The scientific stuff can be found in medical journals. These are stories about how people think, what they think about, and about their lives. What makes them really special is when insights are provided that assist our understanding about why affected children exhibit unusual or repetitive behaviors.

The Reason I Jump has been at the top of my list, lately, because it tackles perplexing questions about atypical actions. Written in 2005 by a 13 year-old Japanese boy with autism, this short story presents his insights regarding many such enigmatic gestures. There are several drawbacks, leading to controversies that surround the book, however.

First, is the issue of facilitated communication, the method by which challenged individuals are able to confer their ideas to the outside world. This is accomplished via another person, the facilitator. A subcommittee of the American Speech-Language-Hearing Association has issued detailed reports about this form of translation. There are a number of criteria that are utilized to ascertain whether the final product accurately reflects the author’s thoughts.

Another question concerns the complicated journey that the autobiography has taken from the Far East, 8 years ago, to the West, this year. The author, David Mitchell, is a fiction writer, best known for Cloud Atlas. As a child, Mr. Mitchell suffered from a severe stutter, and he has a child with autism. With his Japanese wife, Mr. Mitchell ‘discovered’ and translated the story, without apparently ever having met or spoken to the boy.

In the book, the child responds to 50 or so questions about “Why do you…?” Some are simple, “It may look as if we’re being bad out of naughtiness, but honestly, we’re not.” Other explanations, “What makes us smile from the inside is seeing something beautiful, or a memory that makes us laugh,” are even elegant. Many of the answers appear to be coming from a teenage mind, but statements such as “… and that saps the spirit we need to soldier on,” are not consistent.

Currently in his twenties, Naoki Higashida, the actual author, participates in this blog. There is much more that he could tell us now.

In autism, behaviors that appear to represent a given emotional state, such as anxiety, are often misinterpreted. For example, to call I’m-pushing-my-fist-on-my-chin when I am angry/happy/sad/confused/hungry/excited, an obsessive-compulsive personality disorder is surely and sorely inaccurate. Children who begin experiencing additional muscle tone and sensation in the area around their tongue and mouth may be demonstrating improvement in their speech apraxia, rather than suffering from a psychiatric condition.

Facilitated communication, etc. notwithstanding, I am a fan of this book.

  1. It adds to my repertoire of possible reasons that patients display unusual behaviors.
  2. The accounts are not inconsistent with those of other patients, such as the teenage girl featured in this video.
  3. Many explanations make sense as I observe patients’  downstream signs and symptoms.
  4. The information makes people affected with ASD appear so much more LIKE US than we think.
  5. Ultimately, what difference does it make how such knowledge becomes disseminated?
  6. Discussions about this book raise autism awareness.

This is only my second book review, so far, but it prompts the addition of a Recommended Books Section to the website.

The Earliest Earliest Signs of Autism

Saturday, November 9th, 2013

There has been a lot of recent news coverage about a study demonstrating that young infants who display certain problems may be presenting with the earliest sign of autism. Not the first such research, not the last. Three months prior, an investigation into the number of folds in the placenta correlated with risk of ASD. Two years previous, there was an article about early MRI findings.

What is medical science doing with this information? The state-of-the-art seems to be stuck at the corner of whether there is an epidemic and not much can really be done. Given the well-accepted view that ASD is a mostly genetic disorder, only the traditional therapies are believed to demonstrate value. There is a disconnect when the question comes to, what treatments are out there that might be working, and how can they be evaluated?

Whenever a new report surfaces describing such information, how should clinicians respond? The ASD diagnosis depends upon considering the core domains of ‘speech/language’ and ‘repetitive movements’; signs and symptoms that, in infancy, are as-yet undeveloped behaviors. The loss of eye tracking, which was the finding in the study, could be associated with losing the third global delay, socialization, and might represent a problem with communication, as well.

New information of this type will be most helpful when earlier suspicion leads to prompt medical interventions. A less publicized but equally important article appeared this week in the Journal of Autism and Developmental Disorders, where researchers “… found that gastrointestinal issues such as constipation, diarrhea and sensitivity to food occurred six to eight times more often in those with autism than in other children.”

With such knowledge, the doctor might order blood work to scrutinize a weakened immune system, anemia or earlier nutritional deficiencies, such as vitamin D. Comorbid conditions, such as eczema or asthma, should take on a more serious investigation, perhaps with more complicated treatment options. A heightened index of suspicion might lead to the provision of interventions, such as OT and PT, to address low tone, or feeding.

Given a possible diagnosis as early as 6 months, it is no longer enough for the doctor to say, “Let’s wait a year, or two, and we’ll see what does (or doesn’t) develop.” Rather, the pediatrician should advise, “These may be the earliest signs of this autism problem. Let’s dig more thoroughly into the medical history and try to address other problems, such as GERD, constipation, or ear infections.”

With newer information, parents might be more likely to listen to advice about optimal nutrition, limited antibiotic use and environmental toxins. Once early risk is assessed, additional studies involving children at risk should be undertaken. A comparison of projected vs. observed risk could answer questions about all sorts of compounding factors; from challenging the immune response, to dietary alterations, to G-I disturbances, to CNS function and behaviors.

An exciting part of the research about eye tracking appeared in the conclusion, “…the observation…offers a promising opportunity for early intervention…” The explanation that followed was complicated. Thanks to the authors, though, for offering hope for specific treatment. This represents valuable research into other interventions that could prevent onset or severity of ASD.

For now, this week’s news should provide increased incentive for doctors to take early signs of autism and risk more seriously. Future research into early accurate diagnosis of childhood developmental abnormalities should address parents’ concerns and provide professionals with more effective tools.

The Polarized World of Autism Diagnosis and Treatments

Monday, November 4th, 2013

Last week, Forbes’ science writer, Emily Willingham, decided to spice up Halloween with one of her usual autism-themed stories. How timely. The 5 Scariest Autism ‘Treatments’ warned readers that there are money hungry snake oil salespeople posing as caring practitioners, who are scheming to steal your money without a shred of scientific proof that their protocol is either safe or effective.

The story might have actually been newsworthy had she been more up-to-date by including such controversial protocols as Fecal Transplantation or Worm Therapy. Anyway, I felt the need to write that we can’t merely dismiss families with overwhelming problems as misguided idiots who can’t figure out that dipping a kid in chlorine is probably not a good idea. Don’t worry Emily (and the other “pro-science commenters”), MMS never had any real traction.

I replied that her ‘Scary Story’ was missing the point. Autism leads to desperation, born of mis- and missing information, about everything ASD; from diagnosis, to incidence and prevalence, to DSM IV vs. DSM-5, to… What the hell, when are you doctors gonna get your act together and help us?

The re-replies displayed a surprising degree of vitriol. All or none, black or white. Do I support Dr. W’s position or not? TheAutismDoctor.com is an entire website consisting of hundreds of pages of hyperlink-supported information about all of my experience over a 36-year medical career. I address as many of the controversial and cutting-edge protocols as I can research. I figure that castrating your child is going to be pretty extreme to any parent, so I don’t cover it unless queried.

I wrote that the conventional medications are not only ineffective for correcting core signs and symptoms, they may be harmful and even deadly. That leaves families concerned about believing the ‘regular’ doctors who suggest giving potent CNS drugs to their young child. Many feel that exploring alternative treatments is their only alternative.

How many patients have I listened to, who have complained that, “We have been doing ABA, S&L, PT, OT, etc., and we hoped to see more progress”? That’s it? No fighting for your kid. No trying to figure out why your beautiful child isn’t keeping up. That’s what one of the commenters commented. “As a doctor you should know that conventional, evidence based medicine has no interventions that address the core symptoms of autism. Parents do not “turn to unconventional therapies.” They are persuaded that conventional medicine is wrong about autism by purveyors of therapies.” Even if he actually believes what he wrote, if he had an affected child, his spouse (or vice versa) would seek further information.

Shortly, the comments turned to a discussion about vaccinations. I was accused of “pandering to my base” and “shamelessly trying to steal readers” from the Forbes blog. Parents of special-needs children will continue to search for answers and help. Pedantic warnings from non-practitioners and ESPECIALLY the non-involved are not welcomed advice. Working with a trusted professional is their best hope.

I thought that my reply was completely noncontroversial. Who could argue with the dilemma faced by today’s affected families? The Home page of this website states “I hope that my essays and our discussions breathe a breath of fresh air into the polarized world of autism diagnosis and treatment.”

It seems that there is still more work to be done in order to bring all interested parties toward a more reasonable and compassionate position.

Really Scary Autism Treatments

Thursday, October 31st, 2013
E. Willingham

E. Willingham

Emily Willingham, a Forbes blogger who frequently waxes less-than-sympathetic in her stories concerning autism, recently posted her Five Scariest ‘Treatments’. While I do not disagree with some of her picks, I take issue with the tone of the blog and the absence of recognition about the real culprits in autism treatment debacle.

Willingham displays an apparent lack of understanding about the frustrations suffered by the autism community, the paucity of useful research and treatment options, and the desperation of parents seeking answers. “Autism invites its share of quacks. In fact, it might have more quacks in its vicinity than a duck pond,” was her preamble to the story-in-question.

What about the most common treatment options? How scary are they? Although the conventional ‘autism meds’ may reduce some behavioral signs and symptoms, even proponents make no claim regarding improved speech and language, cognition or social isolation (that is, many of the core symptoms of autism).

  1. Risperdal – side effects include “agitation, anxiety, constipation, dizziness, drooling, drowsiness, enuresis, fatigue, hallucination, headache, increased appetite, increased/reduced blood pressure, increased serum prolactin levels, indigestion, insomnia, rapid or irregular heartbeat, restlessness, runny nose, sleepiness, vomiting, weight gains, withdrawal dyskinesias.” PLUS, it “…may mask signs and symptoms of drug overdose and of conditions such as intestinal obstruction, brain tumor, and Reye’s syndrome, may also cause difficulty when swallowing, which in turn can cause a type of pneumonia, may cause… a condition marked by muscle stiffness or rigidity, fast heartbeat or irregular pulse, increased sweating, high fever, and high or low blood pressure. Unchecked, this condition can prove fatal…”
  2. Abilify -”can cause the following side effects: headache, nervousness, drowsiness, dizziness, heartburn, constipation, diarrhea, stomach pain, weight gain, increased appetite, increased salivation, and pain, especially in the arms, legs, or joints. More seriously, it can sometimes cause seizures, slow, fast, or irregular heartbeat, chest pain, changes in vision, unusual movements of your body or face that you cannot control, high fever, muscle stiffness, confusion, sweating, rash, hives, itching, swelling of the eyes, face, mouth, lips, tongue, throat, hands, feet, ankles, or lower legs, difficulty breathing or swallowing, tightening of the neck muscles, tightness in the throat…A small number of children, teenagers, and young adults who took medications for depression during clinical studies became suicidal…”
  3. Prozac and Zoloft are the new kids on the block. I treat numerous youngsters who have been put on non-FDA approved medications by child neurologists and psychiatrists. The side effects are similar to those listed above, without any formal path for reporting adverse events. I suppose that the conventional doctors don’t have to play by the same rules as they espouse (as in, “there are no studies showing safety or efficacy…”).
  4. Pepcid, Prilosec, Zantac and Miralax®. I have included these gastro-intestinal preparations because, a) The need for such medication is an important, often ignored, clue to the type and cause of many presentations of autism, and b) Instead of exploring G-I signs and symptoms, traditional medicine often minimizes their significance or even compounds the situation with inappropriate drugs.
  5. Stimulants, including Focalin, Concerta, Vyvanse, Ritalin, and Adderall in various combinations, dosages, and frequencies. These are medications targeted to ADHD (hyperactive or focus) symptoms. Many ASD patients do not have autism AND hyperactivity (as a comorbidity); rather, they have signs and symptoms appearing as ADHD because of their delayed social development and resulting immaturity. Just because your child is stoned and more compliant, it doesn’t mean that the medicine ‘worked’.

Dr. Willingham is personally touched by, and has previously demonstrated understanding and empathy toward ASD patients and families. However, the autism community is not as ignorant, simple-minded, gullible or unaware as this expert cautions. It’s the vaccine effect. Anyone who doesn’t understand that all vaccines are good for all children all the time must be in need of her advice on all things concerning ASD.

If families experienced more genuine understanding from the medical profession, and if the scientific community could spend more time on useful research into current and future treatments, there would be less need for all of those self-important warnings about which treatments NOT to explore.

15 Things Not to Do to Help Your Autistic Child

Saturday, October 26th, 2013

Applied Behavioral Analysis is the science of understanding and molding human behaviors. Dr. I. Lovaas utilized Skinner-era techniques in the latter half of the 20th century to produce proven results in selected ASD patients.

Dr. D. Granpeesheh authored a sentinel paper proving that “the most robust gains have been demonstrated when ABA is provided… 30 to 40 hours per week of one-to-one ABA intervention, for 2 or more years, beginning before age 5.” Over the years, ABA has evolved and includes numerous iterations, resulting in varying success rates of improving symptoms such as disruptive, repetitive or non-social behaviors, and communication skills.

ABA, OT, S&L, PT and other professional therapists are best-trained to do the job of helping parents assist recovery in their autistic children. After years of watching the interactions between thousands of parents and children, I feel qualified to offer some of my observations about what should NOT be done, in order to achieve more successful outcomes and avoid further conflict.

  1. Stop repeating everything. Your child is autistic, not deaf. The more you restate, the more the child may expect you to repeat in order to get a task accomplished. In addition, some echolalia may be due to the speech pattern to which the child has been exposed. “Do you really think so? Do you really think so?”
  2. Same thing with raising your voice. What intensity level do you have to achieve until the child listens? A bit louder than the last time, probably. Ditto with physical punishment, especially for children with increased resistance to pain. How forcefully will you have to hit the affected child next time? Overly loud voices and aggression are sometimes learned behaviors.
  3. Don’t miss opportunities to encourage speech. At The Child Development Center, we often observe interactions, such as a child visually requesting a cookie, when the parent could have demanded the “K-K-K” sound and initiated some imitation.
  4. Not all negative behaviors should be ignored. There is a difference between annoying and disruptive. Teeth grinding is annoying. Pulling Mom’s hair while traveling at 60 miles per hour does not go unnoticed. In ABA-speak, such behavior needs to be extinguished. Likewise, aggression against self or others requires active re-direction. Do not make excuses for your child’s disruptive behaviors. “He’s only hitting the therapist /his teacher /the doctor’s staff /etc., because they took away his toy” or, “You made him do something he doesn’t like.” Finally, make sure that you are not dealing with a treatable condition. Often, SIBs are signs of bad cooties, and require medical investigation.
  5. Do not continue to spend valuable resources on therapists whom your children have outgrown. Signs, such as the child’s reluctance to attend, or defiance toward a previously well-liked individual are important. It’s boring to repeat “Bi-Bi-Bi” for 2 years. In addition, if you think that something doesn’t make sense (e.g., “The child doesn’t have speech apraxia, he just doesn’t want to speak”), challenge their statements and ask if they have ever ‘fixed’ that problem before.
  6. Do not believe websites advertising miracle cures. Scrutinize the author’s credentials and claims. Telltale signs that you may be wasting your money include full pre-payment, lots of anecdotal stories, music, claims of ‘safe for all’, and clinics in foreign countries. Experimental treatments are just that, and could be harmful, perhaps not immediately; but, unknown problems may arise many years later. Don’t think that you can buy your way out of autism. Just ’cause it’s expensive, doesn’t mean it works.
  7. Avoid relatives and others who claim that you are parenting incorrectly. Let them spend just 24×7 (or often, much less) in your shoes.
  8. Do not settle for the advice of conventional doctors who profess that all behaviors are “Just due to the child’s autism.” Poor sleep, eating disorders, abnormal stooling, or obesity may be keys to treatable causes of downstream difficulties. Conversely, it is unacceptable when multiple specialists only choose to see a small piece of the pie, merely treating one symptom, perhaps at the expense of making other conditions worse (e.g., Miralax™ for constipation).
  9. Don’t give up on biomedical protocols. Any kid can have a bad day, so give it time. Sometimes, with the help of a trusted professional, letting things percolate for a day or even a week may be the best course of action. While on this issue, do not discontinue, or even decrease the traditional treatments, including ABA, S&L, PT, OT, just because you are exploring other avenues for improvement.
  10. Saying the words, “We have to stop at McDonald’s /the toy store /my mother’s house/etc., or the child will have a fit,” is backward thinking. You are the adult, and you have created that behavior.
  11. Stimming on YouTube videos and Angry Birds is not a sign of digital intelligence. By the 50th time that a child goes over the same screen, you can safely assume that nothing new is being learned and time is being wasted. Rather than admonishing, “Don’t do ‘this or that’ behavior any more,” say “You can do that 3 more times,” or  “Two more minutes, etc.” (visual timers can help), and redirect to another activity.
  12. Do not give your child antibiotics except when absolutely necessary. They don’t kill viruses and viral infections don’t usually “turn into a bacterial one,” unless the illness is exceedingly prolonged and/ or something else amiss (e.g., immunologic deficiency).
  13. Don’t be your kid’s doctor. You need professional advice.
  14. Toxins abound in our environment, and the burden may eventually affect susceptible individuals. If, what you are feeding your child has a number in front of it (Red Dye #4), or the word “artificial’, it’s not food, and I don’t care how much he/she enjoys the experience.
  15. Neuroplasticity is real. No matter how severely affected, nor whatever age, don’t believe that your child cannot improve. So, don’t give up.

Parents, I know that you are doing the best for each and every one of your children. This is just some friendly advice to help streamline their developmental burden.

MAPS Fall Conference 2013 – Day 3

Saturday, October 5th, 2013
Last eve's Mojito Bar! We needed a break.

MAPS Friday Night Dinner

Saturday:

Allergies in Special Needs Children

Dr. Jeffrey Bradstreet - Introduction to Allergies in Special Needs Children
With a less-than-healthy intestine, there is loss of tight cellular junctions, allowing toxins and food proteins to be exposed to blood, leading to immune activation in susceptible individuals. Dr. B described inflammatory reactions in the gut and brain of patients with ASD. Eventually, behaviors, not merely mucus membranes, are affected. The presentation concluded with the case of an ‘allergy kid’ – a patient affected with autism who significantly improved with an aggressive workup and treatment of the patient’s immune system.

Dr. Dan Rossignol - Review of Nutritional Supplements for Allergies
…As always, a thorough, interesting and pertinent literature review. Supplements for allergies, which appear commonly in ASD patients, were reviewed. Seasonal behavioral regressions could be a clue to an environmental (over) reaction.
Dr. R discussed naturopathic supplements, many many of which demonstrate equal improvement to the traditional anti-allergy meds.

Dr. Theoharis Theoharides - Allergy of the Brain
The question to be answered, “Is a Subtype of Autism an Allergy of the Brain?” Dr. Theo showed that activation of specialized cells (mast cells), could occur in the absence of allergens (including stress, organisms, etc.). He helped discover that the manner in which the mechanism works is much more complicated than previously thought, and how that process leads to inflammation.
Further evidence was presented that allergic diseases have influence on ADHD and ASD. Mast cells exist in the lining of the brain, and what happens when they are activated could lead to symptoms. He concluded with a therapy that decreases mast cell activation (Neuroprotek, officially not mentioned by name). Oh well, he says any profit goes to charity, and I believe him.

Dr. Michael Elice - Treatment for Allergies
I saw a presentation by this allergist ~ 6 years ago, and his philosophy really set the stage for how I think about ASD.
Taking a detailed environmental history was stressed. “Autism Spectrum represents a collection of system disorders that are treatable and recovery is possible.”
He discussed traditional allergy testing and buildup of tolerance, but that takes time. “With a low ‘specific dose ‘intranasal therapy, responses are often observed in 2- 6 weeks as opposed to the 4-6 month buildup. This type of treatment has resulted in decreased hyperactivity, improved sleeping habits, better socialization and loss of deterioration during allergen exposures.”

Dr. Anju Usman - Low Dose Antigen therapy, also known as Ultra Low Dose Enzyme Activated Immunotherapy.
This is a broad-based treatment that is meant to desensitize to allergens (a bit differently than Dr. Elice’s protocol). Dr. Usman talked about environmental pollutants such as inhalants, products, chemicals and bacteria as well as food allergies.
She described a couple of patients in whom this type of treatment improved skin, G-I, and some behavioral signs and symptoms.

Dr. Richard Frye - N-acetyl-L-Cysteine Treatment in Autism
This learned child neurologist described the recent good news about successful treatment with NAC. The preparation is utilized in mitochondria, requires energy, and detoxifies. He described the ability to detect the subsequently derived protein, glutathione, in autistic brains, especially in those areas that seem to be functioning incorrectly in ASD. This reaction is helped by folinic acid and B12.
I questioned Dr. Frye about the use of glutathione itself (instead of its precursor), such as that which we use at The Child Development Center. His response was that he wondered whether or not balance is achieved with an oral glutathione. Is that all, doc? Well, he helped me with some other patients.

Dr. Dan Rossignol - Update on Clinical Findings and Treatments
This was a review of the 2013 literature about ASD.
First, there was a discussion about the new DSM-5 definitions, which may change the reported incidence of autism.
Then, Dr. Dan gave his signature rapid-fire, research-paper-a-minute (literally, 39 papers reviewed in 45 minutes), insightful, clinically useful, understanding of that research.

Acceptance by the AAP and the traditional medical community is important because it will help patients. Doctors need to be more open-minded and respect our colleagues and the other professionals who are addressing the autism epidemic.

The MAPS conference has gotten very green, btw. All of the material was downloaded from the Internet, saving lots of trees (hundreds and hundreds of pages provided to ~120 participants).

This was a great conference with the most up-to-date scientific information provided by experts who are helping to recover many affected patients. Plus, there was lots of networking and brain-picking.

Home, sweet Fort La-De-Dale. Starting Monday, more patients and a bit more wisdom.

Day #1 (click)
Day #2 (click)

MAPS Fall Conference 2013 – Day 2

Friday, October 4th, 2013

Friday:

Case assessment and clinical pearls were today’s topics. The knowledge presented is based on treatment of other patients and is an important part of our education, since so little experience has been documented in the conventional literature. This is a way for professionals to gain lots of experience that would otherwise take years to acquire.

Clinical pearls “are best defined as small bits of free standing, clinically relevant information based on experience or observation. They are part of the vast domain of experience-based medicine, and can be helpful in dealing with clinical problems for which controlled data do not exist… Despite the advent of evidence-based medicine, clinical pearls, verbal and published, remain a popular and important part of medical education.”

Dr. Elizabeth Mumper introduced the morning’s cases, beginning with the use of a detailed history and physical examination, exploring modifiable factors, such as diet, bad gut organisms, and supplements. The first presented cases involved “gut kids,” which is a big part of the clinical picture in many of our children. Recognizing the known causes of autism, such as genetic abnormalities or underlying diseases, was stressed. Patients with such problems who present with autism can teach us a lot about those with ASD who do not have such a disorder.
Metabolic testing of the blood and urine was discussed. This is a complicated and important subject that helps the doctor determine a course of action, especially when assessing mitochondrial function.
There was a discussion about epigenetics, and how altering the patients’ environment can have profound effects on signs and symptoms that we call autism.
Later, Dr. Mumper discussed a case of an older child with deterioration and seizures.

Dr. Jeff Bradstreet brought some new information to the organization. First, he demonstrated a technique, trans-cranial ultrasonography, which may be able to identify abnormalities autistic brains from early infancy and beyond.
Participants got to hear about Dr. B’s nagalase – GcMAF protocol.
He also talked about Vitamin D, the existence of low levels in many of our patients, and the various forms of testing and supplementation were discussed.

Dr. Jerry Kartzinel reviewed some of his clinical experiences. Two of his most interesting statements were, “Autism = Mismanagement of information by the brain,” and his protocol for treatment, “Pooping peeing, sleeping and eating, then get to the head.”
His observations and therapies were a bit different from what I am used to, as he appears much more aggressive with the use of medications. However, that is why we are attend such a conference.
There was a vigorous discussion about GERD treatment, with a fair amount of disagreement among the attendees.

Dr. Nancy O’Hara reviewed an older child with the sudden onset of unusual behaviors and verbal tics. The group discussed the differential diagnosis and workup with possible treatments. In the end, no diagnosis was established, though a single dose of glutathione seemed to cure his problems.
A 7 year-old with ASD was discussed, who was another ‘gut kid’. This led to a similar workup and treatment protocols, though, again, with fairly aggressive supplementation and chelation. The child was taking 2 pages of medications and supplements. He then turned out to have Lyme disease and required another page of treatments.

Dr. Stuart Freedenfeld began the afternoon with a discussion about antidepressant therapy. A merry trip through medicine-land. As long as we’re on that topic, then, SSRIs perform better with folic acid and sometimes thyroid hormone. A few natural products were presented, and tryptophan was one of this doc’s favorites (as it is mine). Then, some homeopathic remedies were offered, followed by some anxiety treatments.

Dr. David Berger discussed Preconception Through Infancy, describing his experience of possibly preventing developmental abnormalities. Though his success is disputed, at least Dr. B is trying to stem the epidemic. BTW, he noted that if you want to know about environmental products affecting your body, try The Environmental Working Group.

Another test?
Boo.
Another dinner.
Yum.

One more day

(Back to Day #1)

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Brian D. Udell MD
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Website http://www.childdev.org

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