Archive for the ‘Special Therapies’ Category

Medical Academy of Pediatric Special Needs 2016 Spring Conference

Sunday, May 1st, 2016

Practitioners, such as myself, find that it is necessary to attend the bi-annual Medical Academy of Pediatric Special Needs conference for two important reasons. First, to listen to experts from all over the world present their knowledge and latest research. Second, to network with, and learn from, other like-minded practitioners.

What I Liked Best
This year, I chose the ADHD path. The workups that were presented tended to be somewhat complex, and perhaps unattainable for many patients. The bottom line was to get a medical evaluation. The differential diagnosis ranges from thyroid to PANDAS. Mostly all agreed that stimulant and psychotropic meds should not be the first line in treatment. One professor spent some time questioning the diagnosis, itself, and how the modern world has contributed to the epidemic.

What I Liked Least
Traveling all the way to Costa Mesa, CA. Course work is 8 hours per day, so no time for Disneyland, etc.

This Year’s Major Focus
Mitochondrial function continued to play a big role in the presentations. The advanced courses involved lots of methylation, detoxification, and energy production diagrams. The newest twist has been the addition of genetic testing to better determine the cause(s) of inadequately functioning biologic pathways. Single nucleotide polymorphisms (SNPs) and ‘epigenetics’ were the buzzwords – how individual genes interact with the environment and within the individual leading to dysfunction and downstream signs and symptoms.

Topics That Were Discussed in Passing
Microarray genetic testing, covering multiple genes, did not play a big part in this year’s talks. Discussions about childhood immunizations underlie a great deal of the members’ conversations; specifically the lack of solid scientific evidence for safety in high risk populations. Attendees are not against vaccinations, by the way. Lyme disease was discussed in general, and as that inflammatory process relates to other infectious-metabolic conditions.

Subjects Not Formally Presented
GcMAF and nagalase levels. Some patients have indicated that a useful, safe supply may become available, so that will help determine future use. As well, chlorine dioxide, hyperbaric oxygen treatment, helminths, medical marijuana, and stem cell therapy were not offered by this year’s presenters.

Conclusion
It is disappointing to return from such conferences without that ‘magic bullet’. Just standing around, listening to Sid Baker speak about how he got interested in autism, or asking him how the ‘ion cleaning’ footpath worked, is worth the price of admission, however. This science started with Dr. Baker, and he continues to be an inquisitive, gentle force for hope, 40 years later.

In the absence of a sufficient population of scientists who are willing and available to address this modern epidemic of childhood developmental problems, this meeting stands as a bastion against the current state of ignorance.

Some Thoughts on Alternative Medical Alternatives to Autism

Sunday, November 22nd, 2015

Dr. Udell & Vicki Martin RN


This month’s Autism Society of Broward Speaker Series featured autism expert, Ms. Vicki Martin, who gave an interesting and thorough discussion assessing the medical causes of behavior in ASD, and my talk covering some of the latest biomedical treatments for autism.

Purpose – Improve our Understanding of the Range of Treatment Possibilities
Doctors get questions about these more-than-off-label treatments quite often, so it’s necessary to be current about the literature in order to give a learned response. It’s like homework.
I have an opportunity to give something back to The Autism Society of Broward. It has been my pleasure to have served on this Board for over 6 years. This not-for-profit (and, trust me, we have very few $) organization brings services, such as yoga, sensory-friendly movies, and golfing, etc., to the family level.
Public speaking is always a networking opportunity. There are parents who may not know about The Child Development Center of America and how simple protocols may improve outcomes, especially when they are combined with the traditional therapies. Attendees ask questions and learn about our medical practice.
It’s fun to discuss these topics, and more interesting than reviewing epidemiological data that questions whether autism is an epidemic.

Topics of Discussion
These were not necessarily chosen because they are truly the most recent or popular, but mostly because they have been hyped a great deal, lately, by social and other media.

Cannibidiol
Improvements have only been accurately documented, so far, in ASD patients with seizures. Any other use of the product at this time is purely trial-and-error, and the safety of hemp oil extract safety in children has yet to be proven. To the extent that patients may be able to take equivalent dosing, more information will emerge. The myriad of patients who try it, however, complicates evaluation about efficacy.

Helminth Therapy
While this unusual treatment of administering live organisms to successfully restore-reset immune function has been documented in adults with specific conditions, as concluded in a recent review, “Studies are neededto move helminth-related interventions that show promise in animals, and in phase 1 and 2 studies in human beings, into the therapeutic development pipeline.”

Chlorine Dioxide (CD)
Following up on that ‘worms or elimination of worms?’ question was a discussion about Chlorine Dioxide (CD) treatment. I ain’t sayin’ that it cannot/does not work in some individuals, but there are problems.
1. The science is weak and contradictory. There is no supporting research for terms, such as “Parasitological Vaccinosis.”
2. The main proponents, so far, are, the mother of an affected child, and scientist with questionable credentials.
3. Treatment can be risky.
4. Treatment involves a fair amount of resources; including frequent administration (every hour, sometimes), adjustment of dose, and which specific sites on the body to administer a dose (systemic, eyes, ears, rectum, etc.).

Oxytocin
This peptide, which is produced in the brain, has been called the ‘love hormone’, and has been shown to be deficient in some patients with ASD. Animal models have demonstrated improvement, though humans haven’t responded the same way.

The most recent prospective, controlled, double-blind crossover study that involved 31 patients, demonstrated improvement. This has not necessarily been the experience at The Child Development Center of America, where it has been used for over 4 years, yet only a handful of parents continue to administer the product.

Transcranial Magnetic Stimulation
This type of mechanical device has been used for over a decade outside of the US, but has recently received FDA approval as a device for “major depression in adults who failed to improve on medication.” This is an expensive treatment option, in the range of $6,000 – $12,000 or more, and requires daily 1/2 hour treatments.
Adverse effects are listed as fainting, possible seizures, pain or discomfort, mania, changes in cognition, and transient hearing  and memory loss.

A recent review stated, “Though preliminary data suggests promise, there is simply not enough evidence
yet to conclusively support the clinical widespread use of TMS in ASD,
neither diagnostically nor therapeutically.”

ncbi.nlm.nih.gov/pmc/articles/PMC1513142/" target="_blank">Essential Oils
There is a paucity of literature to support the use of these products for patients who exhibit signs and symptoms consistent with ASD. On the other hand, they are relatively safe, have been around since the beginning of civilization, and do not cost a great deal to try. Furthermore, there are many studies demonstrating improvement in processing with occupational therapy and other ‘sensory diets’.

As in many of the other treatments, this has demonstrated the least improvement in our most apraxic and/or disruptive individuals.

Conclusions
Present medical therapies are woefully inadequate.
Many treatment options have been offered, but few have undergone sound scientific scrutiny.
Parents, desperate to help their non-typically developing child will be tempted to pursue less-than-helpful, less-than-safe protocols.
For the lesser affected patients, many forms of treatment will help.
For the most affected patients, such protocols offer only spotty improvements.
More research is needed. Physicians, who are in the best position to understand the complicated science, must understand the variety of presentations of autism and the myriad of treatment options in order to give families the best advice.

Oxytocin for Autism – Again

Saturday, October 31st, 2015

For the past couple of decades, oxytocin – ‘the love hormone’ – has been postulated as a possible remedy to the social deficits associated with ASD. TheAutismDoctor has previously reviewed the use of this peptide, released by the pituitary gland, which is located in the center of our brain. Animal models to determine value have shown promise, however, the experience in human subjects has met with mixed results.

This Newest Study, published in Molecular Psychiatry, claims to be “the first clinical trial to support the potential of oxytocin as an early intervention for young children with autism to help improve social interaction deficits.”

10/2015 The effect of oxytocin nasal spray on social interaction deficits observed in young children with autism: a randomized clinical crossover trial
Thirty-one children with autism received …oxytocin and placebo nasal spray morning and night… for 5 weeks, with a 4-week washout period between each treatment. Compared with placebo, oxytocin led to significant improvements on the primary outcome of caregiver-rated social responsiveness. Overall, nasal spray was well tolerated, and the most common reported adverse events were thirst, urination and constipation. 

Other selected recent (human) literature:
04/2010 Intranasal Oxytocin Improves Emotion Recognition for Youth with Autism Spectrum Disorders
This study provides the first evidence that oxytocin nasal spray improves emotion recognition in young people diagnosed with autism spectrum disorders.

01/2014 Oxytocin but Not Testosterone Modulates Behavioral Patterns in Autism Spectrum Disorders
8 children with ASD were recruited and underwent psychological profiling… Higher oxytocin levels were connected with more severe adaptive behavior in ASD patients. Increased oxytocin levels in children with more severe phenotype could be a result of compensatory mechanism of impaired oxytocin signaling. Oxytocin seems to employ distinct mechanisms in regulating social behavior in autism and healthy population.

03/2014 Nasal Oxytocin for Social Deficits in Childhood Autism: A Randomized Controlled Trial
Compared to placebo, intranasal oxytocin did not significantly improve emotion recognition, social interaction skills, or general behavioral adjustment in male youths with autism spectrum disorders.

08/2014 Plasma oxytocin concentrations and OXTR polymorphisms predict social impairments in children with and without autism spectrum disorder
These findings indicate that <<oxytocin>> biology is not uniquely associated with ASD

04/2015  ncbi.nlm.nih.gov/pmc/articles/PMC4404976/" target="_blank" rel="noopener">Salivary Oxytocin Concentrations in Seven Boys with Autism Spectrum Disorder Received Massage from Their Mothers: A Pilot Study
Seven male children with autism spectrum disorder (ASD), aged 8–12 years… were assigned to receive touch therapy During the period of massage therapy, the children and mothers exhibited higher oxytocin concentrations compared to those during the non-massage period. 

12/2015 Oxytocin enhances attentional bias for neutral and positive expression faces in individuals with higher autistic traits
This effect of oxytocin is strongest in healthy individuals with higher autistic trait scores, thereby providing further support for its potential therapeutic use in autism spectrum disorder.

12/2015 (in progress) Oxytocin enhances orienting to social information in a selective group of high-functioning male adults with autism spectrum disorder
Individual differences in stress-related avoidance tendencies should be taken into account when considering OXT as a treatment of social deficiencies in autism.

Experience at The Child Development Center of America
lovedrugThis peptide hormone can be rapidly digested in the gut, so intranasal spray is felt to be more reliable and likely to act directly on the brain. Any parent of a sensory child is aware of the difficulty administering a nasal spray. The kids run for the hills! So, a sublingual preparation, available by prescription from a specialized pharmacy, has been a mainstay.

♥ Of the scores of patients who have tried the product, only 3 parents continue to administer the substance. Those few report improved eye contact and focus, and give it once per day, in the morning.

♥ The most common reaction is, “It didn’t make any difference,” or that any improvement wasn’t worth $80-$160 per month.

♥ A few parents have reported transient agitation or worsening of aggression, and discontinued treatment.

♥ One male, teenage patient had a negative psychological reaction that lasted for months, according to the mother. It was very disturbing that we weren’t able to predict this extreme reaction, nor the extended time to recovery.

Conclusions
More clinical experience will lead to improved knowledge about efficacy and safety. Hopefully, doctors will better identify those candidates who are most prone to exhibit positive responses.

Oxytocin therapy may be worth a try in selected patients. The practitioner should be knowledgable and experienced about biomedical intervention. A thorough explanation of the risks and the benefits should be presented and documented. Due to the lack of solid evidence, close follow-up is warranted.

Addendum:
Blood-oxytocin levels in normal range in children with autism, study finds

Low levels of hormone linked to social deficit in autism

Intranasal oxytocin treatment for social deficits and biomarkers of response in children with autism

Top 10 Reasons Why Autism Remains a Mystery

Sunday, October 18th, 2015

As regards the explosion of individuals who are diagnosed with autism, progress  seems agonizingly slow. It is the parents of affected children who are leading the way, and traditional explanations are, literally, the thinking of the last century. Why is information about prevention, cause and treatment so sparse?

Researchers are still debating the existence of an Autism Epidemic. Why should it matter whether there are more affected individuals because of reason “A” or reason “B”? That confusion holds up funding for studies, however.

Professionals continue to argue about the ‘when, how, and who’ of assigning an accurate diagnosis, which impedes trials seeking to explore prevention or treatment.

The likelihood of discovering a ‘magic bullet’ is low. There will probably need to be multiple treatments for the signs and symptoms documented in the DSM 5.0, depending on the myriad of causes and presentations.

There are no practical, accepted biomarkers for diagnosis. This is especially important in order to evaluate treatments(s) in an acceptably objective manner. This discovery alone could significantly advance research.

Surrounding the topic of ASD are highly charged issues, such as vaccinations, or complicated treatments, such as HBOT and chelation. Rather than stimulate further investigation, the situation appears to impede conventional researchers from documenting efficacy (or the lack thereof) in such controversial interventions.

Successful treatments of the various co-morbidites displayed by autistic patients, such as those offered at The Child Development Center of America, which combine biomedical and conventional protocols, are frequently viewed with skepticism, at best. These protocols deserve the attention of the medical establishment.

 We drink red G-2 and it comes out yellow.
Ever wonder where the red goes?
(hint… it’s not digested)

Proven associations, such as toxins, poisoned food and the environment, are not popular areas for discussion. Preventive measures receive little promotion or even acknowledgment. Cleaning up can be accomplished, at a cost. This involves not only public education and policy making, but personal choices, as well.

Antibiotics and steroids continue to be overprescribed by doctors, and are requested or too readily accepted by patients. There is a price to be paid for taking strong pharmaceuticals for every ‘cold’ or rash.

Research findings that implicate genetic variations imply feelings of futility about the plausibility of successful intervention. “If it’s genetic, we can’t fix it.” But, every day there are new discoveries about personalized medical treatments for autoimmune conditions or cancer, for example. Tiny chromosomal errors are not insurmountable.

Tools for early diagnosis and intervention, already proven successful, continue to elude the pediatrician’s black bag. Psychiatrists and neurologists, likewise, employ old-fashioned thinking and potent, risky medications that are barely and rarely effective.

In order to take autism research and treatment into the 21st century, organizations that are responsible for actually providing answers need to address these concerns and get serious about forming a unified and thoughtful approach to this medical puzzle.

Patient Testimonials about Biomedical Autism Treatments

Sunday, October 4th, 2015

Every so often, my beautiful and patient wife, Jackie, reminds me that the service websites that she searches contain letters and feedback from clients. “It’s not just advertising,” Jackie points out, “there are key comments that help me make my decision.”

In the spirit of helping other potential families decide about providing biomedical interventions for their non-typically developing children, here is some recent correspondence concerning the work at The Child Development Center of America. (names changed)

Letter from a teacher:
♥ …Also, just wanted to let you know-Billie is doing AMAZING! Therpist2 is wonderful with him. Therpist1 was lovely and worked well with Billie, however, Therpist2 has been getting him to do things that I did not see last year at all. He is trying to communicate more with me and with the other students. Billie is happy and engaged in learning when Therpist2 works with him. She is a lovely lady and so good with him. I am so pleased with what he is doing in class. Tomorrow we are going to show his science project during class – he did a great job on the assignment.
Therpist2 and I were brainstorming ideas for Billie to participate in the event at the end of the year….
Posting on Facebook:
♥ Doctors don’t know everything.
In February of 2011, the lead neurologist… told us that our oldest son (then 2.5 years old) would only continue to regress to the point where he’d become so aggressive we’d have to medicate him (which he showed no aggression at the time) and that he threw up every day bc he was autistic, cried all night bc he was autistic, and while he didn’t have a crystal ball, he said he’d probably eventually need to be institutionalized. He said he was 100% confident in his diagnosis.
Through reading and research, a second opinion and holistic approach guided by Dr Brian D Udell, extensive tests on food sensitivities and bacteria imbalances (due to antibiotic abuse from his previous pediatrician) a radical change in diet, faith and determination we reversed that diagnosis and restored his health.
Emails:
♥ Fabio is responding well to the B12 shots. We are at 0.08ml three times a week for two weeks now and he is doing well. The better days are the days of the shot, then 2nd and 3rd day in between shots, he gets a little silly and extremely sensitive at the mouth area (he puts all his fingers in his mouth). Would it be ok to give him a shot every other day? I feel the effect of the shot wears out the days in between and as a result we see the silly behavior and sensitivity…
♥ Hi Dr. Udell, just wanted to show you an example of a good day for Bobby outside of all the movement you constantly see in your office… On a different (positive) note, see pic below at the School Award Assembly. Bobby walked up from the back of the cafeteria and up the ramp on to stage by himself, waited for all the other kids to get in position for pic and walked down. Huge difference from last year, he had someone with him the whole time. It was great to see all that independence growth from one year to the next!
♥ I just wanted to give you my perspective on what I am observing with Pat so you can understand why I am so adamant about increasing her dose back to the 3cc’s on Fluconazole.  She was a straight A student last year on this dose and is now struggling this school year.  I don’t know what it is about this medication but, it is magic for Pat and keeps her focused and on track.
Thanks for your help…
♥ Hi Dr. Udell. I wanted to update you on Darien’s behavior, constipation and my opinions on the Diflucan. We last saw you Sept 15.
On Sept 16, his behavior got him sent home from preschool for the day.
He was miserable Sept 17-19, constantly repeating “you didn’t say something?” and “nothing hurts?” And having tons of outbursts. The 19th was the worst. I took him to a first visit with his new play therapist and he was screaming and throwing things.
I started the Diflucan on Thursday the 18th. Stating Saturday the 20th, I have had my kid back again. He has been happy. The sensory stuff is still there but very toned down from last week. Overall, I have seen a HUGE improvement this week.  Huge…
♥ We are out of probiotics and have been for a week. We have noticed an increase in crying and pain with Robert. He also had loud farts with terrible smells.
♥ Jose is doing good. He pooped with the magnesium…
♥ I wanted to share this with you, it is about Henry and his horse riding therapy. He is doing a little better every day. Thank you for being part of our journey.
♥ Just some pics of Stan…he really is doing so much better with the htp. (5-hydroxy-tryptophan)
♥ Hello from Nassau! Sheena has been doing quite well since our visit. The Benefiber is WORKING !!!! She has a poop most days. It is formed but not hard, just pointy! … So she is doing well and we are grateful. Take care and see you in May.
Tweets:
♥ From a non-profit foundation “dedicated to providing …children in foster care with enriching activities, opportunities and experiences.” Here’s a great resource for all of us! “10 things every pediatrician should know about children in foster care”
♥ From Dr. Robert Melillo, author of Disconnected Kids, many tweets about “10 Things All Pediatricians Should Know About Autism” and “The Law, Antibiotics, and Autism“.
Comments about this blog:
♥ Everything is very open with a very clear clarification of the issues.
It was definitely informative. Your website is very useful.
♥ I like the valuable info you provide in your articles.
I will bookmark your blog and check again here frequently.
I am quite sure I will learn a lot of new stuff right here! Good luck for the next!
♥ I read a lot of interesting articles here. Probably you spend a lot of time writing.
Patient services:
♥ Hi Dr Udell, Karen & all your wonderful staff… for your help in the process of getting Maria switched to a bus that has AC/Heat capability… We are so thankful to God for good people like you guys that care and have helped us in the journey of advocacy for our little ones so that they can have all the resources available to be able to become functional & exceptional adults someday…I demanded that they read the letter & reviewed the case again that they realized their mistake & even apologize for their ignorance. Maria can finally resume classes & continue to enjoy learning her ABCs. Thank you again, very much, for ALL THE WONDERFUL WORK YOU DO!
♥… We are just so eager to get his little gut ready for the LDN and B12 shots……again thank you for everything!!  Our regards to the whole staff….they are awesome. You definitely give parents hope…by taking the time answer all of our questions and concerns….we are so thankful…..you are amazing!!

Website inclusions:
♥ GraciesAutism
♥ Jacob Velazquez, pianist

Conclusion:
Perhaps, I’m just ‘preaching to the choir’. For years, reknowned ABA guru, Dr. Doreen Granpeesheh, has spoken about the improved outcome when parents combine ABA with biomedical techniques. Similarly, prominent researcher, Dr. Martha Herbert, has emphasized the whole body conditions that can be addressed in this manner.

By combining the time-tested improvements from ABA, OT, PT and S&L therapies, plus other emerging techniques, doctors can learn to successfully treat children diagnosed with ASD.

Notes from the Autism Education Summit

Sunday, September 27th, 2015
theo and me

September 26, 2015 Dr. Theoharides and me

In the beginning of the autism epidemic, conferences included practitioners and families interested in assisting patients in their journey toward recovery. As the information has become more extensive and complicated, the needs and expectations of various parties have spawned more specific meetings.

Tufts University professor, eminent autism researcher and program sponsor, Dr. T C Theoharides, invited me to lecture at this year’s Generation Rescue conference in Dallas. It was a chance to speak to, and with, a worldwide audience of over 700 parents whose children had an ASD diagnosis.

An Alternative Biomedical Approach to Autism Spectrum
A group of ~ 50 ‘newbies’ attended. The topic was chosen because I wished to simplify the issues and offer hope that, despite what the conventional doctors have declared, recovery is possible.

The take home messages were:
1. Traditional medicine only offers bandaids for very complicated signs and symptoms. When the only tool that a person has at hand is a hammer, everything looks like a nail. The usual medications are very powerful with lots of side effects, and provide little in the way of genuine relief.

2. There is more than one way to skin a cat. Many of the other ‘DAN’ practitioners seem to utilize more complicated and expensive protocols, not necessarily superior to the approach that I find most successful. A basic workup was offered to identify laboratory variances indicating less-than-optimal health. Addressing those areas and improving energy with techniques that are not difficult to understand or institute, usually leads to significant progress.

3. Ultimately, autism really IS ‘rocket science’. There are multiple causes and a variety of presentations that even experienced practitioners are hard-pressed to understand and treat. By understanding the basics, parents can lead a team of professionals to get their affected offspring on the right track towards an optimal outcome.

Other Lectures
For 3 days, there was a full roster of presentations covering cause, effects and treatments. In addition to Dr. Theoharides, world-renowned researchers and practitioners, such as Drs. Dan Rossignol, Richard Frye, Jerry Kartzinel, and Anju Usman, gave their learned and extensive points-of-view about ASD.

It is my belief that sometimes the lectures were too demanding. Although the audience was quite intelligent and knowledgable, they seemed to expect more in the way of treatment options for their child, than basic science.

Jenny Group

Ryan Blair, Jenny, Jodi Gomes, Ryan&Dawn Neufeld, Jacqueline&Chris Laurita

Jenny McCarthy
Cue the music, lights, cameras, video screens and action! To this crowd, the lady is a rock-star. She definitely delivered a great message, filled with personal anecdotes, humor, empathy and hope. A panel discussion followed, consisting of famous, and not-so-famous, warrior moms and dads. This was certainly one of the conference highlights.

Conclusion
When I announced on Facebook that I was attending this conference, one of my ‘followers’ wrote, “I think I’m going to unlike this page now,” presumably because of the ‘misguided’ position of Generation Rescue regarding the issue of vaccine injury.  Talk about the polarized world of autism diagnosis and treatment.

Bottom line – I would definitely recommend this yearly conference to parents who have the time and resources.

Medical Academy of Pediatric Special Needs Fall 2015 Meeting

Sunday, September 13th, 2015
Hyatt Grand Regency Orlando, FL

Hyatt Grand Regency
Orlando, FL

I am proud to report my continuing perfect attendance at the MedMaps.org meetings, since the organization’s inception 4 years ago. These semiannual conferences represent one of the handful of valuable expositions, such as SFARI, to advance the science of practical approaches to modern developmental conditions.

There are multiple courses covering a variety of subjects, up to 8 hours per day for three days, presented by the most highly respected professionals in the field.

Day 1
Take home facts of the day:
√ Depending on the practitioner (and geographic practice location), costs (especially lab $) can vary widely.

√ In unusual or resistant cases, the treating practitioners should be concerned about the gut, fungus, toxins (especially metals), PANDAS (PANS, PITANDS), and Lyme Disease.

√ Genes regulating metabolism and function are affected by methylation that leads to downstream behaviors consistent with signs and symptoms of ASD. Folic acid metabolism, including the regulatory genes (MTHFR), methyl B12,and the resulting pathways were stressed as targets of possible intervention.

√ These really creepy-looking worms could help.
HDCThe therapy is used to reset the immune system. There is a great deal of research and literature to support the claim of immune system improvement. Cases were presented where patients made remarkable progress. It doesn’t help that the ‘critters’ are harvested from insects and the name is Hymenolepis diminuta cysticercoides, HDC therapy for short.
Most important about this discussion is the fact that Dr. Sid Baker, founder of biomedical interventions and respected researcher, clinician, teacher, father figure, and guru – is the strongest proponent of this new protocol. Dr. Sidney BakerIn fact, he has a little farm that produces high quality, fresh product, at a fair price. Even so, the general consensus from the peanut gallery at this time was that it is a ‘hard sell’, except perhaps for the most trusting and/or frustrated parents.

√ Also, Dr. B recommended liberal use of magnesium and essential oils as safe and effective interventions. The group was definitely more comfortable with that advice.

Day 2

Rossignol

A most interesting discussion ensued when Dr. Dan Rossignol, our fearless leader, presented a ‘typical’ case of a toddler diagnosed with autism. The various ways that the experienced practitioners handled this child – from workup to treatment interventions – came to the fore. The doctors were all addressing the same problems, but went about it with fairly disparate protocols. There is no one way, at this time, to ‘skin this cat’.

Dr. Baker presented his fascinating background as an innovator in the biomedical treatment of autism. He stressed yeast problems in the GI system, and went on to explain his journey into helminthic therapy, which has produced significant results in his practice.

Complicated cases filled out the day.

A touching tribute to Dr. Jeffrey Bradstreet was presented at the Friday evening reception. Those who worked with him told their stories of an innovator, pioneer, and caring doctor.

Day 3
Dr. Stephen Genuis, Ob-Gyn, University of Edmonton professor, and the author of Chemical Sensitivity: Pathophysiology or Pathopsychology? was first to present at the plenary session, covering toxicity. He is knowledgeable and passionate about poisons in the environment. His lectures provided new ammunition to address skepticism, and the rationale for strategies to detoxify.

The toxicants of Dr. Genuis’ focus were Perfluorinated Compounds (PFCs), which are ubiquitous in homes, on carpets, non-stick surfaces, and may cause metabolic disruptions with clinical effects; from cancer to headaches. After reviewing available and tested options, his conclusion was that the most effective treatment was periodic phlebotomy (removal of blood).

Supporting and related information was presented by Dr. Ken BockDr. David Quig, and Dr. Kenneth Stoller.

Conclusion
After 3 days of lectures, the bottom line is that the air, food and water is not safe, and the most exciting interventions are blood-letting, worms and special oils. It’s 2015?

The Media and Autism

Saturday, July 11th, 2015

Emily Willingham, Forbes blogger and self-appointed autism expert, couldn’t let the story about the death of Dr. Jeffrey Bradstreet pass without injecting her two cents.

Dr. W commenced her comments with a 2,000 by 1000 pixel, scary picture of a syringe and needle. I never saw that photo at the beginning of one of her ‘Vaccination is Perfectly Safe‘ stories. She went on to detail the nefarious activities of a doctor administering a dangerous serum to unsuspecting patients. Em, have you ever heard of botox?

Conjecture, innuendo and professional jealousy notwithstanding, Dr. Bradstreet was the parent of an autistic son, and an early adopter, researcher, and lecturer of biomedical treatment for the disorder. He popularized medical evaluation and protocols to address metabolic variations at a time when the generally accepted cause of ASD was considered to be bad parenting.

All but the most conventional treatments are presented as kooky at best, harmful to patients at worst, and a waste of time and money. Some of the latest national news headlines regarding autism will illustrate:

  • ABC – Jim Carrey Apologizes for Posting Photo of Autistic Boy
  • CBS – Authorities: Anti-vaccine doctor dead in apparent suicide
  • CNN – Another study finds no link between MMR vaccine and autism
  • NBC – ‘You Don’t Outgrow Autism’
  • Fox – Woman says diet is healing son’s autism

Perhaps this situation, more than any other circumstance, hinders further worthwhile (i.e. causes and treatments) autism research. Headlines are made when a researcher is proven incorrect, statistics are questioned, and even a teen’s murderous rampage is presaged with possible links to Asperger’s Syndrome.

Regardless of the manner in which autism as a medical condition got so far off track, a new attitude needs to accompany the message that academics, practitioners, parents and charities project. Even skeptics who questioned the HIV/AIDS situation abandoned the ‘it’s their own fault’ line of thinking.

What can be done?

Autism foundations need to work together. Autism Speaks, The Autism Foundation, Autism Societies, and Local chapters have to find a way to advance positive publicity and useful information. There is little room for discord at this time. An unpopular stance, perhaps, but it can only help in the search for effective treatments.

Researchers need to get out in front of the media so that the epidemic proportions are clear, and that real work is being done to further study. Disagreements, such as increased incidence only being a perception, have already been addressed by the CDC.

Knowledgeable parents are doing the most effective job of finding professionals and insisting on protocols to help their affected offspring. Doctors need to join in this effort and announce the remarkable improvements that occur when biomedical and conventional treatments are combined.

Neurologists need to get on board. Frequently, parents are admonished that, “Nothing more can be done.” Improvements following biomedical protocols are either dismissed as coincidence, imagination, or magic.

Other specialists need to get on board. This means that allergists, pediatric psychiatrists, immunologists, dermatologists, gastroenterologists, and pulmonologists, have to broaden their knowledge base and focus on the patient, not their particular subspecialty. Too often, parents are only informed that the problem does not lie in their domain.

Pediatricians and family practitioners need to get on board. This is the childhood epidemic of our time, doctors; embrace it, learn about it, and take the time to talk to your families.

Autism heroes, such as Temple Grandin, Drs. Martha Herbert, Susan Swedo, Robert Naviaux, Richard Frye, and Jill James are modern medical role models for the next generation. The media, including Forbes, needs to highlight these personalities, rather than obfuscating this important issue with titillating stories and dogmatic posturing.

Conclusion
People who have Parkinson’s disease are not Parkinson’s experts, nor are people with cancer oncology specialists. Lorenzo’s oil is the exception, not the rule. Insiders and outsiders alike, need to embrace those who are doing real work to solve this problem.

The autism community includes a large, diverse population of well-meaning, knowledgeable and competent people. Together, we will understand and conquer this devastating scourge on our youngest constituents.

Wouldn’t it be nice if the media extended a helping hand?

Toilet Training and Autism

Sunday, June 14th, 2015

iPotty. Available @Amazon.com ~$30

Every parent faces the chore of imparting proper potty skills. Then, there is toilet training toddlers affected with autism.

I was recently interviewed about the special challenges that face parents as their affected offspring embark upon this important developmental milestone. Here are the questions and answers:

What challenges do children with autism have, either mental, social, or physical that would make learning a skill like potty training difficult?

Many children who are affected with autism have other medical conditions – known as comorbidities – that affect their health, especially in the gastro-intestinal tract. Poor G-I function can lead to diarrhea, constipation, GERD, and inflammation. Sometimes it can occur following the overuse of PPIs, antibiotics, or Miralax™.

Multiple sensory issues, accompanied by increased pain tolerance (or decreased perception) need to mature, so that traditional techniques are more likely to be successful.

Decreased energy production leading to decreased abdominal and rectal muscular function presents physical challenges for affected patients.

As these issues are successfully addressed, parents see improved toileting abilities.

Toilet Electric

Patent US 4162490 A 1978 Fang-Cheng Fu, Chien-Hung Fu A battery-powered toilet training device… to provide improved training of toddlers… A non-contact electronic sensor is used to detect the presence of urine and stool in the receptacle. A battery-powered toy is used to produce an audible signal and a mechanical motion to reward the toddler and to signal the trainer when the toddler’s elimination begins.

What effect does parental support or having a parent who is educated on autism have on the development of a child with autism?

Understanding that schedules are important to many children with ASD can be a key feature for achieving success. I usually ask parents to try to put the child on the potty one or two more times than the number of stools per day. That way, the child has more chance for success. Some schools will take children frequently.

Knowledgeable parents pay attention to the signs that the child wants to/ needs to/ is going to… “do number 2”. Sometimes, they are lucky, and catch it early enough. Literally.

Assistance is provided by achieving G-I health with non-inflammatory, non-processed, lower sugar, better digested foods.

There are even special sensory challenges, such as the noise from a bathroom hand dryer, that make facilitating acceptable auditory functioning paramount for success in that venue.

Have you ever had parents come to you needing support or information in the area of potty training?

This is a common problem that becomes increasingly noticeable as children enter preschool years. General-education staff are usually resistant to students who have not acquired this skill. There are lots of websites, but most parents have explored that route.

Behavioral, occupational, physical and neurodevelopment interventions by professionals can be quite helpful, especially when referred by previous successful families.

Do you have any research or stats on the relationship of potty training and autism, or on the topic of potty training as it pertains to autism?

The earliest work on this actually appeared when Dr. Leo Kanner first described Autistic Disturbances of Affective Contact 75 years ago. A majority of the children displayed gastrointestinal signs and symptoms that were overlooked at the time (by the father of modern child psychiatry).

Another unfortunate reality is that, medical evaluation has been slowed by the inclusion of all ‘retarded’ children in many of the early studies about this problem. A 1970’s article entitled, Toilet Training of Normal and Retarded Children, appeared in the Journal of Applied Behavioral Analysis.

In the 90’s, Additive Benefits of Laxative, Toilet Training, and Biofeedback Therapies in the Treatment of Pediatric Encopresis represented the state of the art. Comorbidities were not recorded, and autism was not an outcome measure.

At last, in this century, research documenting ‘normal‘ acquisition of bathroom skills appeared in a respected pediatric journal. A review entitled, Toilet training individuals with autism and other developmental disabilities concluded, “Shortcomings to currently available programs are highlighted and future areas of study are suggested.”

A ‘model for treatment‘ has been offered in a respected research journal. It was based on two patients.

There is plenty of room for improvement in our understanding and treatment of this difficult problem.

Understanding Autism Better

Sunday, May 17th, 2015

A growing number of children with tiny genetic differences, known as copy number variations, have accompanied the steady increase of patients who visit The Child Development Center.

Often, the conventional advice is that 1) such anomalies are probably not significant, and/or 2) no information is available about ‘that’ particular abnormality.
Do not believe it if your doctor has only told you that, “The chromosomes were normal.”
Take a moment to read the results yourself.

Chromosomes are structures inside our cells, mostly made of DNA. Genes, the basic building blocks of life, are located there. Suspected errors are sometimes only 1/1000 of an inch long! There seems to be a controversy about how different professionals understand the ‘not enough – too much – transposed’ pieces of DNA. How difficult is it then, for parents evaluate?

The basics about genetic results have been previously discussed here.
A specific description about copy number variation is described here.

Results are already available in children who have had a genetic testing, since they are included in the ‘Fragile X test’ (one of the known genetic causes of ASD).

Why perform a chromosomal test?
It should be required in all children who have a Spectrum diagnosis. It’s much more likely to be positive than an anesthesia-requiring MRI or EEG (especially in the absence of seizures).
The argument that testing is not necessary because, “The mom is not having any more children,” is specious. Such information can be quite important for the patient. If there are other people who have the same small chromosomal variations, they can add a great deal more knowledge about your child than merely Googling the cause and treatment of autism.
Additionally, as the future brings more and more information about the performance of those particular pieces of the chromosome – and the genes residing therein – there is added hope that it will lead to specific treatments, or regimens that might be avoided (such as, say, vaccinations) in affected individuals.

Which is the best chromosomal test?
For ninety-nine bucks, 23andme is not the best bet. A saliva sample yields information about ancestry, predisposition to certain traits (e.g., digestion, taste, metabolism, even HIV resistance). However, the SNPs (tiny genetic variations) that are tested are not indicative of ASD.

According to a formal consensus statement of genetic experts, chromosomal microarray (CMA) testing of the blood, “…offers a much higher diagnostic yield (15%–20%) for genetic testing of individuals with unexplained developmental delay, intellectual disability, ASD or multiple congenital anomalies…”
This is a >$1500 blood test (listed here) .

Lineagen advertises that their buccal smear test (a swab from inside the cheek) identifies the most number of changes that are related to autism diagnoses, and is superior to those offered by other labs.
The cost exceeds $5,000. Without insurance, that amount is often prohibitive. As data accumulates, so will the knowledge about the value and validity of this method.

How to read the results of chromosomal microarray testing?
Unless the microarray contains the text, “XX Normal Female,” or “XY Normal Male, no abnormalities reported,” continue reading and ask the lab or a trusted professional to interpret.

How to use the results of chromosomal microarray testing?
Go to the database SFARI gene,
Click on the Copy Number Variant button,
Click on the gene(s) with variation, and follow the table to the letter that best matches your child’s findings.

Conclusions:
Parents often exclaim, “I don’t care what the exact diagnosis is, just make my child improve!” However, the more precise the analysis, the more likely it is that treatment will better target each individual’s physiology.

Knowing this information about your child is valuable – not only in the future, but adds to understanding and treatment for the present situation, as well.

Addendum:

(New York Times 5.14.15)
U.S. Introduces New DNA Standard for Ensuring Accuracy of Genetic Tests

(Journal American Medical Association (6.15)
Copy Number Variations and Cognitive Phenotypes in Unselected Populations

Chromosome 7 flaws alter chemical tags throughout genome

 

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