Posts Tagged ‘hyperbaric oxygen therapy’

The Chronicity of Autism

Sunday, July 23rd, 2017

Be prepared. Knowledge that recovery from an autism diagnosis is possible should be accompanied by an awareness of the time and resources that must be invested.

The journey is characterized by periods of advancement, stagnation, and sometimes, regression. Success is more likely when professionals diagnose and treat medical issues, and traditional therapists ingrain proper development.

Depending on the degree of difficulty with oro-motor functioning, useful speech may take quite a while. Socialization is encouraged and more play with other children and leads to maturation. Some of autism’s related signs and symptoms, such as sensory issues, repetitive thoughts and behaviors, and gastro-intestinal issues may be at issue for years.

Secondary symptoms that may have been less obvious often come to the fore, such as ADHD, obsessive-compulsive behaviors, or anxiety. Medical specialists, such as psychiatrists, gastroenterologists, or endocrinologists are frequently sought to evaluate and treat co-morbid conditions.

The following is a sample of emails that have taken place over the past 6 months with a wonderful family, who are only able to manage yearly visits:

3/10/17 Cameron is on the following medicines…
His speech is great after ENHANSA and b 12 .
Just since last 3 days His focus has gone and is completely disoriented .
Has started repeating his play and is stuck to do the same thing all the time. Movement wise has become slow.
The therapist tells me could be sensory and compliance.
We had done flucanazole full of jan and Feb.
He is totally off sweets and ENHANSA is working great. Just don’t know y the focus has reduced…

3/17/17 Flucanazole again. Been just 25 days?
Wouldn’t it be bad for his liver?
And do I give it along with the ENHANSA or should I discontinue the ENHANSA?

3/22 Will stop the deplin, but I think it’s all after the ENHANSA. So it is yeast related.
He starts school on coming wed. Thus more stress!
ENHANSA has given him speech but now stressed about behaviour.

3/23/17 Cameron suddenly has stopped listening and has started zoning out.
So lethargic in his posture. Wants to lie down on the floor. Sometimes pushes his friends.
Will stopping the ENHANSA help? As it is definitely due to yeast. I don’t want his school to pick up his case in the first month itself.
Have stopped deplin today. Flucanazole is on.

3/23/17 I have got this letter from a well known pediatrician here…
The school has allowed us to send his meals from home. So no stress at that end.
We have already received the digestive enzymes and kept them handy.
The dr here is aware of Cameron’s diagnosis, but has not mentioned it to the school. We will take it as it comes.
Speech is fantastic with ENHANSA. Lot of spontaneous talking all the time. Clarity has come with L-carnosine. Deplin did help a lot with comprehension and there were no tics for 2 months.
Just can’t understand what happened a week after ENHANSA . Cold and a runny nose for a week ’til we started flucanazole…. Stopping ENHANSA hope the speech doesn’t reduce. Cause we won’t be able to start it again ’til vacations then…

3/25/17 Cameron had leakage of stool without even increasing the magnesium.
So I have not given him the extra dose. Today his behaviour was slightly better. Like 10% improvement.

3/28/17 Cameron has calmed down a bit after stopping the ENHANSA and deplin.
Currently he is on… Do let me know if any alterations to be made.
Also he has started repeating sentences and words. From movies. And robotic speech is slightly back.

3/29/17 First day of school.
Keep him in your prayers.

4/7/17 Cameron has calmed down and the tics r also not to be seen in the last 2-3 days.
Melt downs have stopped completely.
Worry :- repeating sentences, and not comprehending questions. Giving weird answers to any question. Focus not there… ENHANSA caused the flare according to me. So I feel we should not start it ’til… school breaks for 2 months. So all trials can happen during that time.
Do let me know about the b 12 shots too. As the speech has diminished by like 50%. He only answers when needed or forced to.

4/23/17 I feel the deplin had helped Cameron a great deal wen we had started it.
His comprehension of language and focus had increased a great deal. So will definitely re-start.
Main concerns :-  Spontaneous speech.  And comprehension of language. Focus.
Nalrexone I am applying religiously every night on his wrist.

4/25/17 Cameron stopped diflucan on 22 nd. And has been complaining of stomach ache.
Stool has been passing once a day .
Deplin is on.
Today the therapist felt that he was not focussing at all and was giving all weird answers. Which was not the case last week. Is all this regression always there after stopping the diflucan? Or is it just one off day.

4/26/17 New Laboratory Results

5/4/17 Cameron’s second round of diflucan is on.
And since yesterday he has started complaining of a stomach ache all the time.
He is passing stool twice a day and quiet loose .
Today he has barely eaten any food and is complaining immediately after 4-5 spoons of his dinner.

5/6/17 Cameron has been complaining on cramps in his stomach.
In a day 2-3 times and at night, too… fever, itching in the pelvic area and sore throath since yesterday nd now constipation.
I have started the fiber today. It’s extreamly hot here…
He’s not eating well since last 2 days and is very lethargic too. Didn’t go to school on Friday.
I have started activated charcoal.
Just worried that I hope this diflucan doesn’t effect him in the wrong way as he is not eating enough. This is something I had read so was thinking would be related to a die off.

6/4/17 Cameron breaks from school in a few days. 
Just yesterday and today I have noticed lack of focus and a few melt downs. Also severe stench in his poop and while passing gas. (for which I gave him activated charcoal today). We r scheduled in 2 weeks and blood tests follow.
Was wondering if I should start the diflucan now (hope it does not effect any Results in the blood test) or should we again give the ENHANSA a try?
Current meds and supplements: D3 2000, Fish oil, Probiotics, Gluthatoine, Deplin, L carnosine, MVIs, Magnesium, Vit c 500, Naltrexone cream…

7/10/17 Cameron has resumed school. Stomach is now fine.
Slight bloated though, but has lost his appetite completely. He is eating half of what he used to eat last to last week. Main issue is chewing. Takes an hour to eat an apple. Seems less energetic. Could be the heat here also but I feel he doesn’t have the strength. As is asking to be carried on steps and even out of bed wants to be carried. (carrying him has come almost after 1.5 yrs , after we met u first)
So I think it’s more related to energy. He seems v lethargic. Inspite of sleeping 10-12 hrs of good sleep. Do u think we need to start the b12 now?

7/11/17 I’ve stopped ENHANSA completely. It’s not for Cameron.
His behaviour is worsening.
I gave him 2 spoons of magnesium yesterday like advised last time by you.
I am out of town for 3 more days. Will go home and start diflucan 6 weeks again.

7/22/17 I started Cameron on 6 weeks of diflucan as he had started flapping and hitting everyone.
It’s been one week and he is much better.
We also started him on 2 capsules of vayarin. I can’t see any major change but it’s not harming in any way. So should we continue with that?

Discussion
Sometimes, such interactions are via phone and/or with our staff, but close attention to change, some patience, and accurate, appropriate interventions are often successful.

Specialists, therapists, and parents get used to what works, what doesn’t, and what hurts their individual child. Intelligent, warrior parents seek to leave no stone unturned. Eventually, the good times outweigh the challenging ones. And the challenging ones get less so.

For many families, the patient no longer meets criteria for ASD.

Conclusion
The most satisfaction comes as we appreciate the affected person’s strengths, and continue to work with those not-yet-acqired social skills.

All the work pays off. The children are loved, and love back. A way through the forest seems to appear. Life settles down, even for the most affected patients. Perhaps the parents’ greatest frustration is the understanding that intelligence is not the issue, and that there is a whole person inside.

Is there an Autism ‘Smart Gene’?

Sunday, May 28th, 2017

When evaluating new research, it is important to:
1) Determine if the conclusion makes sense (regardless of statistical values), and
2) Review documented evidence – both pro and con.
That brings me to an article that recently appeared in Nature Genetics, entitled,  ‘Genome-wide association meta-analysis of 78,308 individuals identifies new loci and genes influencing human intelligence’.

Are People with ‘smart genes’
more likely to have Autism?

The Study
Combining data from multiple studies, researchers identified hundreds of minor genetic variations associated with IQ, including many new ones. “The identified genes are predominantly expressed in brain tissue… “

“Significant genetic correlations were observed with 14 traits… Moderate, positive genetic correlations were observed with smoking cessation, intracranial volume, head circumference in infancy, autism spectrum disorder and height.”

The authors concluded, “These findings provide starting points for understanding the molecular neurobiological mechanisms underlying intelligence, one of the most investigated traits in humans.”

The Good
In this study, autism is linked to intelligence, rather than a decades-long belief that, “ASD just used to be called mental retardation.”

This finding offers hope that patients who can successfully shed the sensory and social stigmata, have an additional IQ cushion to achieve success.

The Bad
The story, as generally reported in the media, was represented by this British news headline, “Autism is linked to intelligence: People with ‘smart genes’ are more likely to have the disorder”. To say the least, that’s not accurate.

The manner in which the data was collected and analyzed is complicated. Really complicated. Multiple, convoluted arguments for validation were offered, begging the question, “Why so much information manipulation?”

It is always suspect when science over-emphasizes the contribution of genes to intelligence. Comparable information has been misused for over a century, to ‘select’ for superiority. Therefore, even when discussing this knowledge as it applies to the world of autism, such assertions could prove pernicious.

The Ugly
This finding, if accurate, might represent a future net loss in human intelligence. Given that 2% of males are presently affected, with many who suffer significant impairment to typical socialization, possibly resulting in fewer ‘good’ qualities that make it into the total pool. Autism could be ‘culling the herd’ of ‘smart genes’, if the tide of this epidemic is not stemmed.

Conclusion
Our understanding of how genes lead to visible effects, due to the event(s) in which they are involved, will underlie our future understanding of human development, as well as autism.

Professionals who care for children with ASD are never surprised when parents claim that their kids are bright. It appears that there are other, multiple disturbances in central nervous system processing that lead to symptomatic challenges.

At the least, this association helps confirm such observations, and might provoke novel strategies for discovery.

Parents Helping Other Parents Battling Autism and ADHD

Sunday, May 21st, 2017

The First Warrior Parent
More than 5 decades ago, Dr. Bernard Rimland observed his son’s unusual development, and was determined to understand the cause and treatment of a rare condition called autism. So began a more modern view of the condition, which addressed the tide of children who began appearing with similar challenges. His work started a movement that has ultimately morphed into The Medical Academy of Pediatric Special Needs.

At that time, the predominant cause of autism, promulgated by self-taught psychologist and media darling, Bruno Bettleheim, was the ‘refrigeratory mom’ theory. His experiences in Nazi concentration camps led him to believe that a lack of love in their environment could cause a child to turn off the road to typical human development. Dr. Rimland said, “No way,” and along with other like-minded professionals created biomedical workups with useful interventions.

It took another three decades until Jenny McCarthy popularized that viewpoint, with her outspoken experiences, fighting the medical profession to get proper care for her son. What progress has science made since that battle? Only a few brave professional parent practitioners, such as Drs. Dan Rossignol, Julie Buckley, Anju Usman and Nancy O’Hara, have taken up the slack.

Advancing the Combat
So, in that vacuum has arisen a number of other parent warriors. These are intelligent, dedicated, caring individuals, who have researched the data and applied various treatments to their children, often, trying it out on themselves first. They have observed various amounts of success, depending on their child’s specific difficulties. Some achieve remarkable results, and wish to pay it forward.

One day recently, I got into an interesting email discussion about Transcranial, Red/Near-Infrared Light-Emitting Diode Therapy. That determined Dad found a difference in his own clarity by moving the light from front to back. Wasn’t that OK to try on his child?

Just a few hours later, I had a conversation with a Mom who has been witnessing positive results using Ionized water. Her child was making significant progress, and this generous lady wanted to offer the product – for free – to other parents. “We can help so many more!”

One father has observed improvement with a particular form of Acai berry. Other parents have found good results with MMS, CBD, THC+CBD, Sauna, and Essential Oils, among other treatments.

Few Victors, So Far
I was telling this story to an experienced Mom, and she declared, “See how desperate we are!” Those who vilify Dr. Andrew Wakefield’s heresy over the possible danger of some childhood vaccination protocols ought to consider Dr. Leo Kanner’s role 80 years ago, which established a misguided psychological point of view.

Modern medicine has implicated genetic problems, but doctors fail to order appropriate testing; brain abnormalities, without getting diagnostic labs; and environmental factors, yet there exists little research to establish therapeutic strategies.

New Strategies
The reality is that, both professionals and parents, are experimenting on the children. Without proper studies we cannot know eventual outcomes, of even the most ‘benign’ interventions. We are now learning about conditions that are not only carried from one generation to the next, but 2 generations away. Real science takes time.

A common factor among many of the treatments that I encounter is some form of gut adjustment. Many of the specific supplements help while they are being administered and do not appear to be toxic. However, much of the research has been documented only in other species or conditions, and requires additional scrutiny.

Advice to Medics
Parents, who see progress in their own child, then in others, simply want to guide more families in the same boat. But, you are all NOT in the same boat. Some kids are older or younger, some girls or boys, others with metabolic, genetic, immunologic, gut conditions and various combinations that are different from child to child. SAFE is not SAFE for all, as we have learned from the vaccination dogma.

Even those strategies that work may require additional patient evaluation and testing. If a parent sees untoward effects, watch closely for such important signs, such as dehydration or an extensive rash. By discussing these interventions with a functional doctor, a child stands the best chance for advancement.

‘Alternative medicine’ strives to be inclusive, but the response by professionals to adopt non-conventional strategies may take a bit longer to take hold, as evidence becomes more clear. We are fighting on the same side.

FDA Warning About Autism Treatment

Sunday, April 16th, 2017

The FDA took the time, this week (4/2017), to sound an alarm about their notion of potentially dangerous off-label ASD treatments, by issuing, “Autism: Beware of Potentially Dangerous Therapies and Products“.

The consumer update begins, “One thing that is important to know about autism up front: There is no cure for autism. So, products or treatments claiming to “cure” autism do not work as claimed. The same is true of many products claiming to “treat” autism or autism-related symptoms. Some may carry significant health risks.” Really?

What are the approved therapies?
According to the document, the antipsychotic drugs Risperdal (risperidone) and Abilify (aripiprazole) are apparently not considered to be that dangerous. Increased death rates are noted in the Physicians Desk Reference, due to the the former medication. The latter pharmaceutical agent contains this caution, “A causal role has been demonstrated with antidepressant use and emergence of suicidality in pediatric patients and young adults…”

Clinically, patients who have taken these drugs have shown markedly increased appetites (leading to obesity), exhibited new tics, demonstrated a ‘zombie-like’ affect, and have been very difficult to dose correctly. Breast enlargement and lactation have been reported with these meds, as well.

What does the FDA consider dangerous?
About metal-removing therapy, “FDA-approved chelating agents are approved for specific uses that do not include the treatment or cure of autism, such as the treatment of lead poisoning and iron overload, and are available by prescription only.” So, this government organization has determined that environmental poisoning is not a cause of autism.

Hyperbaric oxygen treatment has been cleared by the “FDA only for certain medical uses, such as treating decompression sickness suffered by divers.” The document failed to mention that it has been proven effective for non-healing wounds and post-traumatic stress disorder, as well.

Clay baths, and “… various products, including raw camel milk and essential oils. These products have been marketed as a treatment for autism or autism-related symptoms, but have not been proven safe and effective for these advertised uses.” Don’t expect millions of dollars to be poured into research about the effectiveness of these innocuous interventions.

If you wish to utilize essential oils,
do so at your own peril !

Discussion
The medical literature continues to question the usefulness of Abilify or Risperdal for the treatment of signs and symptoms of ASD. But it is perfectly clear that, even the supporting literature never makes any statement about apraxic children. Stopping the banging doesn’t produce speech. Plus, socialization only improves to the extent that these ‘safe’ drugs reduce unusual behaviors or decrease aggression.

Moreover, the body systems that are in need of repair and optimization do not get addressed – indeed, are even masked – by such a pharmacological bandaid, which leads to further complications. Often, this makes the child with increased resistance to pain even more stuck with their autistic behaviors. Difficulties in the gastrointestinal, immune, and nervous systems, go unrecognized. Mitochondrial functioning is affected, compounding metabolic challenges in this vicious cycle.

Parents seek ‘risky’ therapies because of the inadequacies of the medical profession in just about every aspect of autism diagnosis, prevention, treatment and care. Rather than elevating autism anxiety over the dangers of mostly mild, possibly helpful, but unproven interventions, we would be better served by an honest evaluation about the overuse of the ‘on-label’ products. This is especially true in disadvantaged populations. When functional medicine doctors, such as myself, utilize these drugs, it is usually as a last resort, after explaining risks/benefits to parents, with close follow-up of the patients’ condition.

Conclusion
TV commercials tout incredibly risky medications, for diseases that range from restless leg syndrome to cancer. “Ask your doctor,” we are told, “if this is a good drug for you!” Then, a list of very scary side effects is enumerated. Well, you could just ‘ask your doctor’ if camel milk will cause seizures or death.

Parents of children with developmental challenges have plenty of work to do, just getting through each day. This useless memorandum will, most probably, simply be ignored. For those who feel that the consumer update was produced to pursue some financial and/or political motivation, and/or is another example of bureaucratic waste, you may feel compelled to address the (ir)responsible organization (click here).

What to Expect from Biomedical Treatment for Autism and ADHD

Tuesday, February 21st, 2017

As in any medical condition, it is entirely fair for parents to inquire about the timing of improvements, after undertaking biomedical intervention to improve signs and symptoms in their children who are affected with ASD. “How will we know if it’s working? When will my child get better?”

Factors affecting speed of recovery
How severely the child scores, according a standardized test for autism, is a major factor in assessing the time it may take for reversal of symptoms. For those in denial, this can be a wake-up call. For the parent who ‘already knew’, it represents a starting point. The time that it will take to observe improvement is generally proportional; from mildly affected to very disturbed development, taking from 6 months to many years until improvement is noted.

Perhaps interestingly, children who score very ‘low’ (few autistic characteristics) may turn out to take more time than might be expected. That could be due to the mysterious nature of their particular developmental delay, and ‘putting our finger’ on how to address individual obstacles takes investigation and various trials.

The degree of a child’s inability to communicate – from the severity of speech apraxia to social isolation – is proportional to the time it will take for advancement. Whether due to biomedical intervention, or just maturation, it becomes extremely worrisome if this achievement takes more than 18 months. After initiating biomedical intervention, kids who simply begin to even copy the therapist will make faster gains.

Self-injurious behaviors and aggression greatly impede advancement in all domains. Such conduct is frequently gut-related, so a thorough workup and effective treatment should take precedence over any other interventions. The time it takes to get this system under control is predictive of speedier success.

Factors not necessarily related to timing of improvement
Intelligence is not in question for most patients. In fact, it seems that the brightest kids are the most likely to manipulate their family and therapists, sometimes slowing down their own improvement. Often, behavioral intervention (of some type) is key to achieving compliance and self-control.

Sensory issues may continue for many years, even after the children are mostly ‘better’. In fact, this may be the lingering issue for which parents seek treatment, and a major cause of inattention and social anxiety.

Immaturity is common, leading to tantrums and issues with self-control, and proceeds slower than neurotypical children. Peer pressure from role models and family members accelerates this troublesome problem.

Discussion
It is sometimes difficult to get our heads around the chronicity of this developmental condition. All children experience good days/ bad days; it appears exaggerated with ASD, and some medical problems recur (yeast, e.g.).

When first diagnosed, if a parent could be certain that their child may only experience leftover sensory, hyperactive, or focus issues, they would probably be okay with that future. Not all patients suffer even those lingering difficulties.

Many families have witnessed accelerated development resulting from biomedical intervention. Parents, teachers, and even doctors will avow visible progress.

Conclusion
Autism is a collection of conditions that emanate from a variety of sources. As the diagnosis becomes more precise, outcomes will be based on information, such as genetics, metabolism, and immune function, and expected outcomes will become more accurate, as well.

I advise parents to watch for little goals.  ‘Recovery’, ‘reversal’, ‘optimal outcome’, ‘normal’ are journeys that begin with small steps.

Frustrating as it may be, regardless of speed, it is the sustained, forward trajectory of development that appears to be of upmost importance as parents consider, “Will my child make it?”

Miracle Mineral Solution Treatment for Autism

Saturday, May 24th, 2014

I hadn’t really expected MMS to gain any traction as a viable autism treatment. It seems complicated and scary, and the FDA first issued a warning about it four years ago. Perhaps there is no measurable re-emergence, but it seemed so when I attended the Autism Today Second Conference in Miami this week.

I sat among eighty mostly-bewildered parents, representing children who are so affected that they are attracted to outlier theories and treatments. This is largely because the information supplied by the conventional medical community is so woefully inaccurate, incomplete, and unproductive for many patients.

Due to some scheduling glitches, this conference ended up focusing on the very controversial topic of MMS. The treatment was explained by Ms. Kerri Rivera, “a biomedical consultant for an autism clinic in Puerto Vallarta,” and mother of recovered child. Her experience was then authenticated by Dr. Andreas Ludwig Kalcker, inventor of “The Parasite Protocol,” which is an essential element in the therapy.

The Chlorine Dioxide Protocol is not about bleaching your kid. That was the first message. Well, it’s not about making your intestines white, but the word does mean “to sterilize.” Anyway, that refers to sodium hypochlorite, according to Ms. Rivera, not the chemical that MMS is utilizing. In that sense, it’s not about dipping your child in Clorox. Except that Chlorine dioxide is used in “stripping textiles and industrial water treatment,” and it does involve purging and cleaning the “excess of pathogens.”

  • The diet – organic vegetables and meats. GF/CF/SF/sugar free (especially fruits).
  • Supplements – Stay away from all anti-oxidants.
  • Main Ingredient – Ocean water and acid (lemon juice, e.g.), to make a dilute solution of Chlorine Dioxide.
  • How it is administered – Doses and administration depending on a pre-established protocol, plus alterations depending on symptoms and response to treatment. In the gut, it is supposed to remove the biofilm and so expose organisms that get flushed through the G-I tract. Breathed into the lungs, it addresses asthma and bronchitis. The cutaneous route helps eliminate bad skin cooties and detoxify. Enemas and rectal suppositories to directly address lower intestinal issues. There is also and Eye and Ear spray form.
  • What happens – The elimination of bad bacteria (and, admittedly some good ones – but they have a product to fix that), viruses, fungi, and worms. Lots of worms. Plenty of worm pics. Worms that no laboratory in the world, apparently, can document.
  • Acceptable additional treatments listed as HBOT, chemical chelation and GcMAF, probiotics, l-carnosine, carnitine, plant fatty acids, GABA, digestive enzymes, tryptophan, DMG and TMG (the last 2 are anti-oxidant precursors).
  • She claims to have helped over 6000 families, and 131 cases of patients losing the diagnosis.

The ‘Parasite protocol’ was presented by Dr. Andreas Ludwig Kalcker, who recommends Chlorine Dioxide treatment.  He lists his credentials as, “… first licensed in economics and later in biophysics and alternative health (Ph.D).” Addendum – I found other evidence that he received a Doctor of Philosophy in Alternative Medicine and Natural biophysics from the Open University of Advanced Sciences Inc., which is a fake diploma mill based in Florida, but lists Spain as the main address.
Although his German accent is compelling, the science that he presented was not. He listed the symptoms of parasites and noted similarities to many autistic behaviors (?cause and effect?). He claims that his key discovery was that regressive autism is due to “Parasitological Vaccinosis“. That term describes toxins that are later released by parasites in susceptible children who become vaccinated.
“Dr.” K made many grand overstatements, using real research papers that only prove the one point, frequently mixing apples and oranges. Slides such as “Larval migraines induced by vaccine,” not only lack a scientific citation, I couldn’t find any match over the entire Internet.

In the Q&A session, I asked a simple question, “131 ‘cured’ is the numerator, what is the denominator?” This resulted in Ms. Rivera and Dr. Kalcker blustering about how that number couldn’t be documented, and how it wasn’t really important. That begs the comment, “Well, if you don’t know how many have been treated in this manner, you also wouldn’t really know how many have experienced significant negative reactions.”

As expressed by top autism researcher, Dr. Martha Herbert, I do not believe that parents who attend these conferences are “gullible, dangerous, and/or don’t love their children, and the people who pass them off are snake oil salesmen.” I was there to learn about new ways to approach our most resistant patients, not to criticize. Advertising MMS in this manner is not the way to go about proposing innovative and controversial treatments. It promotes The Wakefield Effect.

Dismissing conventional medicine as being completely ignorant and challenging treatments from all sides takes strong scientific proof. Proof of concept in animal models and proof of efficacy and safety in appropriate human treatment trials. To be specific: no, I would not recommend this treatment for my patients. There is too much missing information. A few pictures of recovered children and parental testimonials should not sway a prudent professional.

At The Child Development Center, we have improved the lives of many of our patients by addressing and treating G-I health with a proven, safe, well-tolerated protocol. Nutritional status must be evaluated, treated and monitored. With appropriate behavioral therapies, child development gets on the right track.

For successful autism treatment, each piece in the puzzle has to fit into the bigger picture.

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 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 Spring 2013 Conference

Sunday, March 24th, 2013

This past weekend marked the third Medical Academy of Pediatric Special Needs Conference, which was held in Costa Mesa, CA. I have made sure to attend every one. This time, I had the added challenge of traveling on my damaged and recently repaired left foot. But, thanks to the help of my beautiful and patient wife, Jackie, I managed to fly, hop, crutch and wheel across the country.

What started out as the “Defeat Autism Now!”(DAN!) movement, then morphed into the Autism Research Institute (which continues to support autism research and provide needed information and support for families and individuals with autism spectrum disorders), has finally become a full-fledged medical society “for the treatment of children with autism spectrum disorders and chronic special needs.”

These courses provide the required CME credits to attain a MAPS fellowship certification. This educational experience prepares practitioners from all over the world to deliver state-of-the-art care. Qualified and experienced doctors and other professionals offer detailed scientific evidence and clinical information in order to further understanding and treatment. We review older therapies, some of which may still have value, the most common protocols that the participants presently utilize, and the emerging technologies that could lead to better treatment.

The advanced courses that I attended included the following discussions:
(Day 1): Hormones & Neurodevelopmental Disorders, led by Dr. Anju Usman. Covered subjects included the CNS, HBOT and treatments such as galantamine, phosphatidyl serene, propanolol, cortisol, oxytocin, secretin, the endocrine system, calcium, the adrenals, and hormones. We also learned about remedies from plants, foods and other cultures.
Evaluation & Treatment of Older Children was presented by Dr. Dan Rossignol, who gave one of his stellar presentations thoroughly reviewing the scientific literature that helps support our various treatment protocols. Case presentations with enthusiastic audience participation rounded out the afternoon.

(Day 2): Gastrointestinal & Nutrition. Dana Laake (Dietician-Nutritionist) reviewed Advanced Nutritional Assessment including labs, signs and symptoms, and special diets (all of them, I think). Dr. Elizabeth Mumper immersed us in G-I testing and discussed “clinical pearls” – what practitioners should look for to help patients with symptoms due to an unhealthy gut. Dr. Rossignol reviewed the pertinent literature and more clinical cases. Dr. Jeffrey Bradstreet taught us about testing and treatment options for autistic gastrointestinal disturbances. He concluded his talk with a thorough discourse about fecal transplants. No shit.

(Day 3): Cutting Edge & Novel Treatments. There were lots of experts, lots of treatment possibilities, and lots of opinions. Need I write more?

The MAPS conferences are no boondoggle. Classes go from 8-to-6 for three days, with formal testing at the end of those long sessions. The most important functions include networking with doctors from all over and discussing cases – just like your children – from the youngest, to the most challenging and complicated. This information adds immeasurably to our individual clinical experience.

What’s new is that your children – young and old, disruptive or spaced, apraxia or echolalic, unfocused and anxious, suffering from seizures or repeated infections – are being discussed, reviewed and considered as patients who deserve appropriate medical attention.

MAPS participation grew by a third this meeting, but that is still not enough personnel to address the burgeoning patient load. It’s a great feeling to know that each year we are getting closer to the causes and cures for this ever-increasing epidemic.

Stem Cell Therapy for Autism – Final Word

Friday, May 4th, 2012

This has been a pretty exhaustive series of posts exploring and explaining the most recent developments in stem cell therapy as they pertain to ASD. These blogs are meant for parents who are considering the procedure (wiki isn’t helping entirely, right?), but many readers may choose this conclusion as their only ‘read’, which is fine. However, the extensive material in the preceding articles can assist parents who want to be better informed.

My goal was to review the current state-of-the-art regarding Stem Cell Therapy, in as neutral a manner as possible. The medical community is fairly dogmatic against high cost, potentially high risk procedures which have little scientific confirmation, and practitioners of such therapies are often labeled as charlatans who prey upon desperate families. My personal bias is, likewise, to be very suspicious of such miracle cures. However, as I have written previously, traditional medicine has so f*#%ed up the diagnosis, etiology and treatment of the condition we call autism that it is no wonder that parents seek assistance elsewhere.

The ‘pros’ of Stem Cell Centers can be found at websites such as this. The cons are exposed in detail at quackwatch. And, don’t forget the schlep to India. So far, this is my  dollars-worth of advice, “What would you do if it were your child, Dr. Udell?” – from a practicing pediatrician’s point of view:

One of the most troubling contentions that I have encountered when interviewing Stem Cell proponents is, “There are practically no risks to the patient because the type of cells that are now used (whatever type that they are using) are safe.” First, nothing that a doctor does is perfectly safe. I even have to counsel parents about the potential die-off from probiotic treatment that can result in regressive behaviors, lack of sleep, rashes, bowel problems and such. Second, there are other increased-risk modalities that often accompany stem cell treatment including; lumbar puncture, intravenous line placement, steroid usage, antibiotics or anesthesia. Third, “Studies have shown safety…” Since when did the Autism community believe that statement? And what about long-term complications? No one can answer that honestly, because no one knows.

This story is a clear example of the issue. In the past month, several children in my medical practice have suffered some especially disruptive behaviors. One particular beautiful child just got her caretaker (of 2 years) to quit because she broke the poor lady’s arm. Her mom said, “You know, I spoke to a woman who has lots of bucks, who had a child – although it was different sex, different age, different diagnosis – who said that there was an improvement with the therapy. Even if I got a small improvement in ‘Suzie’s’ (self-injurious) behavior, I would be glad to spend the $20K.” Now, I had to speak to this mother for 20 minutes to convince her to give a short course of steroids, and it was a struggle. What is the attraction?

Parents can be driven to the point of trying, literally, anything to create a break in the action, even if only is only temporary. Very few people experience or can even comprehend the complicated feelings of parents with severely affected children. That’s why this mom wasn’t considering transplant risks. “Just give me a light in the middle of the tunnel,” is a fair plea. What patients don’t hear about is when a treatment has failed or turned out to be a waste of time and money – there are no blogs about that. There is even one patient in our practice who developed ASD after a stem cell transplant (required for a different medical condition),

What should be happening? There should be more research centers, if not performing the procedure, at least collecting reliable data from the patients who have undergone the treatment. The patients need to be assessed in some formal way about their level of ASD involvement and improvement(s), if any. Those parents so set on going forward with the procedure should be enrolled in a proper setting with all the accepted standards. For those professionals performing the protocol, it’s the only way that they are going to be believed, anyway.

You can’t ‘buy’ your way out of ASD. I takes lots of love, time, work, perseverance and luck and involves a combination of treatments, especially targeting the social domain. Some improvements may take time to evolve into useful behaviors. Steps forward by an autistic patient tend to be incremental and require reinforcement and practice so that neuro-typical behaviors can become embedded into the personality.

No, I can’t recommend the procedure at this time. I can, however, understand how parents arrive at the decision to move forward with the treatment, but not without exhausting all other reasonable and better documented therapies. If you have the time and money and your child continues to be severely affected, at least be well informed and maintain reasonable expectations.

Addendum:

 January, 2014

I recently interviewed a parent who related the following story: “I was so thrilled after the treatment. The child was more calm than ever. I really had hope, for the first time in years.” 
“Would you do it again,” I asked?
“Well, no,” Mom said. “After about a month or so, all those gains in behavior were lost. That was too much money for such a short period of improvement.”

July 2014
Duke University Trial:
http://sfari.org/news-and-opinion/news/2014/experts-balk-at-large-trial-of-stem-cells-for-autism

“There’s no question Kurtzberg is the right person to do this,” says Emanuel DiCicco-Bloom, professor of neuroscience, cell biology and pediatrics at the Rutgers Robert Wood Johnson Medical School in New Jersey. Still, he says, “I think it’s early times.

Stem Cell Therapy for Autism

Tuesday, April 17th, 2012

Stem Cells Microscopic View

Parents search the world for answers when their child has a complicated medical condition. The more exotic, enigmatic, or frankly, hopeless the situation seems, the farther that journey takes them. When families consider a medical procedure as complicated as Stem Cell Therapy, they need to be well informed from an independent – but not necessarily adversarial – source, in order to decide a) a whether to proceed with such a therapy and b) the optimal center for the treatment. Imparting that knowledge in a few concise posts is the goal of these next few blogs.

It took me 5 posts to fully explain and give advice about Hyperbaric Oxygen Treatment; my point being, if someone tried to explain such a complicated topic to you with LESS than that amount of information and thought, you didn’t get enough information, or think about it enough.

Stem cells have the potential to differentiate into other cells; to become skin cells to repair a severe burn, bladder cells if that organ is diseased or removed, or neurons in the case of spinal cord injuries. In the earlier years of this research, there was a controversy because this particular type of tissue could only be harvested from embryos (very young fetuses), since that would be the greatest source of this type of material. However, the cells can now be extracted from bone marrow, fat, blood (from another person, from yourself, and the umbilical cord at birth), and amniotic fluid and then kept alive and grown in the laboratory. With the appropriate stimulation factors, the desired type of cell can then be ‘born’.

That background information is particularly paramount when considering this type of procedure for autism because the GOAL of this therapy is to stimulate neural pathways which have not developed or developed incorrectly in your child’s brain. So, when choosing a person’s own stem cells, two essential issues are, “Won’t those cells have the same problem as the child?” or “if something is going on with the child’s system, won’t it also affect the new population of cells?”

I have spoken to practitioners of this therapy who answered, “No, the damage may have really occurred at some other time, so these cells will do the trick.” I guess if you are talking about a child who regressed after a vaccination (though that’s impossible, according to AAP), and you have frozen the child’s cord blood cells, you could argue that pre-damaged cells could perform the new tasks – as long as there is no ongoing systemic problem (with the immune system, for example).

If you choose abdominal adipose tissue from the patient (belly fat – a popular new development), you are assuming that those multi-potent stem cells do NOT contain the same “error” in transcription (making a protein from the DNA, pictured), in order that the new cells will overcome the poorly functioning ones. By choosing the cells of other people, the patient is risking tissue acceptance by the their own immune system.

This discussion has only scratched the surface of such a complicated treatment. In addition to considering the desired source of the stem cells, the follow up questions include:

Where to put the cells

How the cells are gonna get to where you want them to go

Who you can trust to perform it

The cost, including opportunity costs

Efficacy, best provided by anecdotal experience at this time

The risks, mostly unknown at this time

Research, experience and recommendations

So far, my advice on the procedure is to find a good Special Needs Pediatrician. Work on exploring sources of reducing inflammation and addressing cellular energy which has been disrupted by this condition. Unless I uncover some fantastic information in my research, there are many other worthy treatments to be considered when the child is first diagnosed. For severe developmental delays which remain resistant to present protocols (conventional and alternative), “stem cell therapy” will often  surface as an option for the concerned parent and should be considered with a trusted clinician.

This background information will serve as the introduction to my next blog, (Part 2) about the present state-of-the-art of this controversial ASD treatment.

Stem Cell Therapy for Autism – Part 3

Stem Cell Therapy for Autism – Conclusions

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Brian D. Udell MD
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