Posts Tagged ‘DAN doctors’

Recognizing The Signs of Autism Recovery

Sunday, August 20th, 2017

As the autism epidemic has grown, so too, has the knowledge of professionals who shepherd treatment, and our recognition of success. It is helpful to offer predictive signs that reflect steady improvement. Due to the variations in autism presentation, there is no authoritative information about how long recovery takes.

However, it can be quite useful and encouraging for a parent to know that it is great news when a child who, after 9 months of treatment, is finally repeating words. It is just as important to understand that the lack of questions, or comprehension, is not pertinent at such a stage.

Patience is key – all affected families have already learned that virtue. But proper acknowledgement that the chid IS getting better should reassure families, hopefully adding a touch more perseverance to their storehouse of solutions.

The journey begins as the ‘fog’ lifts. Wandering should become exploration. New diagnoses do not suddenly ensue, they rise to the top of parental concerns.

It’s not apraxia AND autism. The lack of verbal communication ought to define that phase of autism. Speech arises as sounds, often verbal tics or ‘stims’, teeth-grinding, or screeching, progresses to occasional single words, more consistency, then more dependable expression.

At first, merely hearing the speech therapist say that your child is trying is a very positive sign. There is a pattern. Speak to yourself. Speak to toys. Speak to family. Sometimes, it make sense. Juice. Want juice. I want juice. Observe other children. Speak to safe children – older, younger, more docile. Sometimes, inappropriate.

The same arrangement can emerge with shorter, then longer, sentences. During this phase, parents may fear that the child doesn’t doesn’t comprehend, or is lazy. “He can do it if he wants to!” I think of it as paving newer, progressively wider, neural roadways. The quantum leaps in the appearance of knowledge, such as letters or numbers, are a result of the newfound ability to perform expressive language.

Repetition of words or phrases (echolalia, scripting) seems to be part of the fabric of the acquisition of this ‘skill’. If a child is supposed to say 1000 terms, e.g., and only has 300, they may say the same thing 3 times just to make up the difference, or repeat the last words that were spoken. (Neurotypical adults often do this, as well.)

Socialization will rarely ensue if these milestones, in some form, haven’t appeared.

Children who have repetitive behaviors and restricted interests do not develop obsessive-compulsive disorder. Yes, a youngster may appear to have OCD, but it’s the same problem they exhibited at 2 years of age. And, no pediatrician called it OCD back then. Furthermore, adult drugs for this ‘condition’ are dangerous and rarely perform as expected.

Sensory processing issues that involve hearing, vision, etc., do not develop into SPD. They may become highlighted at various points in the child’s recovery process as the cause of distraction or aggression. Stimming is frequently a symptom. Occupational therapy and other appropriate neural interventions can be quite helpful.

Likewise, lack of attention and focus, overactivity, and distractibility aren’t really a newly acquired ADHD diagnosis. This represents the remnants of an earlier autism. Signs and symptoms are only as subject to pharmacologic remedy as the resulting, appropriate anxiety.

Proper recognition of the challenging behaviors is key.
Does anyone know of a drug that would enable a 5 year-old to perform in a 2nd grade classroom?

Immaturity, tantrums, and difficult transitioning do not warrant a separate condition. Oppositional Defiance Disorder is a description. Behavioral interventions have proven value.

Conclusion
Some might be confused by my use of the word ‘recovery’. It depends on the definition. Subject to the age at the initiation of therapies (and a million other factors), The Child Development Center generally aims for a 3-to-6 year window, in order for a ‘typical’ patient to enter the general educational environment. There may be plenty of leftover challenging behaviors, as occurs in many of the other students in this century.

My point-of-view is that, 10 years after a crippling auto accident, the appearance of normalcy doesn’t erase the prior event. Five years following, however, the patient may experience muscle weakness and/or ‘pins and needles’. Such is the state-of-being for many of the children experiencing recovery in Autism Spectrum Disorder.

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.

Rerun: Autism Apraxia and the Oboe

Sunday, July 16th, 2017

Shortly after starting speech therapy, it is not uncommon for our parents to be informed by the professional that their child has speech apraxia. Here’s the thing, the child does not have autism AND an inability to produce words. In the vast majority of cases, it’s part of that child’s presentation of autism, not a separate diagnosis.

This story is my analogy for how this mysterious condition can be best understood:

I can’t play the oboe. I probably never will. But, if I wanted to, it would probably take, like, 6 months just to be able to produce a single note. Then, maybe after 1 year – if I practiced every day – I might be able to play Three Blind Mice. Poorly.

My brain did not come preprogrammed with instructions about the correct embouchure to play a double-reed instrument (or any wind instrument, for that matter). So, I would have to practice that movement of my lips. My lungs were never used to delivering short blasts to fine-tune output. I would have to practice that, also. Then, I would have to figure out some way to combine a number of physical feats at the same time in order to deliver that first squeak.

It wouldn’t matter how many times my teacher told me to play a song. It wouldn’t matter if she raised her voice and implored me to do a better job. Perhaps a different teacher would get me more motivated? I might get frustrated with my lack of ability and stop trying for a while. I could start making horrible sounds just to make something come out, and then the teacher would say that I’m not trying or I’m doing it wrong. Instructors would become very disappointed if I started to bang on surfaces with the oboe – just to make any sound come out.

That is exactly how it must feel for children with ASD who cannot speak. When a neuro-typical infant starts to babble and imitate words, it is because they already have human speech hard-wired into their cerebral cortex. Toddlers don’t think about, or really even practice speaking. It just comes.

Think how much more work it takes for a young child to let the caretaker know that they want juice, if they cannot speak. Infants simply cry and the parent offers a variety of choices until they hit on the correct one. Later, certain cries indicate a desire for food, not a toy. Without speech, a toddler pulls the adult to the refrigerator or opens it himself in order to communicate his wishes.

The child is not simply being lazy. It would be much easier to do it the way the typically-developing sibling does… “JUICE” or “Juice, please” or “Mommy, I want juice!” The parent who says “I know he can speak ’cause he does it when he wants to,” is missing the point. That is what makes the child normal – we all do what we can when we want to, to the extent that our abilities allow. The ASD child speaks when he absolutely must, and then only when every circuit is working correctly.

Likewise, for language to increase, pathways need to be laid down so that the activity can take place as part of a much more complex social environment and therefore more often and (hopefully) appropriately. Then, the electricity has to flow so that the circuit is completed and results in the correct sequence of events. It takes practice, desire, and an ideal set of circumstances. Many times, parents report that their child said some complex combination of words and ask, “Where did he/she learn that?” Well, they are apraxic, not deaf.

By getting a patient in the best physical condition, the routes can be laid down. By supplying enough cellular energy, the circuits fire. By supplying S&L, OT and ABA, the child gets to practice. Parent’s love and encouragement supplies the desire to try. That takes a great deal of work by all parties involved.

I will never play the oboe, but, thankfully, the majority of ASD patients eventually speak (in practice, the number is even higher because of the younger age of diagnosis and appropriate interventions). Of course, that is just one part of their complex story. The goal is not to play solo, but to be part of a symphony.

A Tale of Two Studies – About Autism

Sunday, June 25th, 2017

June 2017
Two quite different papers were published recently, which together directly address important aspects regarding our understanding about diagnosis, prevention and treatment of autism.

The first article is entitled, “Functional neuroimaging of high-risk 6-month-old infants predicts a diagnosis of autism at 24 months of age.” An earlier diagnosis – much earlier – might be on the horizon if this interesting MRI study holds true.

The algorithms are very dense. In fact, I had to ask my neuro-radio-pathologist friend to help me interpret the data, and he said the math gave him a headache! For example, “… a total of 974 functional connections in the 6-month- old brain that showed a relationship with behavior at 24 months and were different between groups. Together, these functional connections constituted <4% of the potential 26,335 total functional connections studied…”

It’s not anatomy, i.e. structure that was evaluated, but the workings of neural pathways, implying that autism (some forms of it, anyway) is present in the brain at a very early age. Autistic behaviors that could be predicted and, possibly successfully prevented or reduced, included social interaction, expressive language, and repetition, among a number of other important parameters.

This evaluation represents a new generation of ‘machine-based learning’, which itself begs further scrutiny. There was a small sample size, and questions remain about the reliably of testing an infant’s thoughts, while inside a moving, noisy environment. The bottom line is, there was high sensitivity and specificity for predicting signs and symptoms at 2 years.

A complementary investigation, published elsewhere, happened to appear this month. It is entitled, “Randomised trial of a parent-mediated intervention for infants at high risk for autism: longitudinal outcomes to age 3 years.” As in the other paper, younger siblings were chosen as subjects, due to their 20 times increased risk of developmental challenges. In similarly aged infants and toddlers, there were improved overall outcomes in the treatment group.

The authors wrote,”… that a very early intervention for at-risk infants has produced a sustained alteration of subsequent child developmental trajectory; reducing prodromal autism symptoms into the second and third years of life to a total of 24 months following end of the intervention.
(Possibly useful data in response to beneficiaries’ requests for insurance coverage?)

Discussion
It is reassuring to observe that, “Earlier diagnosis can lead to appropriate preemptive treatment with improved outcomes,” has become a model of research. Authors of the MRI piece wrote, “Given the known plasticity of the brain and behavior during the first year of life, together with the absence of the defining features of the disorder, intervention during this presymptomatic phase, before consolidation of the full syndrome of ASD, is likely to show considerably stronger benefits compared with later treatments.”

Conclusion
Such analyses ought to shape new treatment paradigms for this exploding epidemic. As similar attitudes become more commonplace, it ought to behoove conventional medicine to look at this evidence-based approach, and start doing more appropriate assessments for patients diagnosed with ASD.

Of course, “further study is required.” In the meantime, information is accumulating that, even a pre-emptive diagnosis seems prudent.

The Challenge of Challenging Behaviors

Sunday, June 11th, 2017

The Child Development Center has been experiencing a rash (dare I say, “Epidemic”?) of children who present with poor socialization, decreased attention requiring prompting and redirection, sensory and/or oppositional issues, extreme rudeness, dark thoughts and threats, obsessive activities, immaturity, and aggressiveness (physical, verbal or both). The children are not ‘autistic’. And, it’s not ‘just ADHD’.

One parent of such a child recently wrote that he was saddened by these disturbing developmental conditions in his otherwise amazing kid. When children do not ‘come out’ the way that we had anticipated, it brings heartbreak and disappointment.

Extremely disruptive displays are not merely frustrating.
They can be embarrassing and even cause depression.
In today’s world, that has become the journey of (too) many parents.

What Doesn’t Work
Corporal punishment was the traditional mainstay for ‘making children behave’. Thus, grandparents often complain that today’s parents are not firm enough. First, the price that is paid by utilization of either verbal or physical punishment is self-esteem – by both parties. Abusive actions, offhandedly employed in the last century, may prompt a Child Protective Services visit in this one. Second, affected youth appear to experience increased pain resistance. Eventually, that form of discipline goes unnoticed. Third, such a reaction is the exact opposite what we are trying to instill.

In the past months, we have examined a number of children whose medical pharmacopeia appeared proportional to their age. There was a 7 year-old taking three medications, and one teen was already getting Abilify, Risperidone, Geodon, Valproic acid, and Lamectal, among other pharmaceuticals. And, her psychiatrist was suggesting more. When does it stop?

I am certain that parents and doctors arrive at such multiple combinations of drugs honestly. Each symptom is met with another medicine. The patient is then drowning in chemical soup. What is the plan?

What Can Work
A medical workup is required. The prescribing physician is obliged to follow levels of anticonvulsants (for symptom adjustment), liver and kidney function (for drug elimination), blood count, and nutritional status.

In given patients, practitioners should consider fungal overgrowth, PANDAS, or Lyme disease. Screening for toxic substances has been a recent addition to our armamentarium. So new, perhaps, that such data is not necessarily that helpful, yet. Likewise, genetic technology has become available that better determines how patients metabolize various pharmaceutical preparations, but usefulness in clinical practice remains limited. To the extent that an astute clinician determines an underlying problem(s), great strides can be made toward amelioration of some disturbances.

Behavioral interventions are the proven treatment. It takes a professional therapist to get challenging children to display self-control. Common sense dictates that such juveniles require absolute consistency. One pre-adolescent demonstrated an uncanny ability to mock my consultation. Perhaps, the parents were thinking, “Now, you see how rude he is!” when they laughed it off. Regardless, their response validated the child’s disrespect.

One parent has developed her own form of pre-vigilance. Mom is able to ‘sense’ when her kids aren’t able to concentrate, and provides relief at the earliest sign of distractibility.

Rather than additional pharmaceutical preparations, doctors should consider which ones to decrease or discontinue. The list often contains drugs that were instituted for behaviors that are no longer at issue. Additionally, it can be helpful to consider less toxic medications or even supplements when the status quo is not doing the job.

Conclusions
My diagnosis is that such challenging children have escaped ‘traditional’ autism. It’s not obsessive-compulsive disorder, Tourette’s, schizophrenia, bipolar disorder, sensory/visual/auditory processing disorder, oppositional defiance disorder, etc.
It’s processing disturbances caused by our toxic environment acting on susceptible individuals.

Finding relief may be exasperating, with periods of improvement and regression. This is when patience and the knowledge that the child has the capacity to achieve necessary skills to ‘make it’ need to take precedence. Some parents choose home-schooling, special schooling, and less-than-hoped-for academic situations. Some must resort to medications.

This alteration in childhood development is not FUN. For many, it’s parenthood in the 21st Century. Consider that the best course is to ‘first, cause no harm’.

Sleeping Sickness Medicine for Autism?

Tuesday, June 6th, 2017

‘Game-changer for autism’:
100-year-old drug reverses symptoms, study finds

Recent headlines, such as those, have stimulated the submission of a fair number of emails that went something like this…

Dear Dr. Udell,
I saw this study on the internet.
I would like to try this medicine for my child. What do you think?

Dear Parents,
After further consideration, here are my observations about this serious pharmaceutical intervention:

1. What is suramin?
It is a chemical that was invented to cure parasitic diseases. The dosage used for autism has been significantly reduced.

2. What was the actual paper?
This treatment is based on a unique approach to autism, and it represents a preliminary test of whether this drug might be safe and effective for common signs and symptoms of this emerging epidemic.

There were 5 patients in each group of 4-17 year-old boys, who were either given a single dose of the medication, or placebo. Outcomes were measured in the first week, and 6 weeks later. There were generalized improvements in many areas. As blood levels decreased over time, so did some advances. Surprisingly, progress was seen in speech apraxia, even in 2 older children.

The drug was well-tolerated, except for “a short-lived, self-limiting rash.”

3. How does the drug work?
The authors explained, “One approach to addressing the challenge of many etiologies of ASD is to define a common pathophysiology that can contribute to the core diagnostic symptoms, regardless of the initiating genetic and environmental triggers. We hypothesized that there is a conserved cellular response to metabolic perturbation or danger that is shared by all children with ASD… in mice produced a treatable metabolic syndrome…” The administration of a medicine that adjusts for an alteration in RNA and DNA manufacture, and energy production, “…corrected both the behavioral and metabolic features of these genetic and environmental mouse models of ASD.”

4.  How is it administered?
INTRAVENOUS PUSH. From the results of this research, it would appear that doses may be required every ? 1-2 months for ?? months? This is not for the faint of heart.

5. How much would it cost?
The drug, alone, appears to cost less than $50, depending on the source. If it is found to be successful, let’s see how the powers-that-be jack up the price. Plus, there would be additional charges of IV administration and followup testing.

6. What labs must be followed?
That remains to be discovered with increasing experience and research.

7. What are the long term effects?
Ditto #6.

Conclusion
This medicine may simply share many of the same properties as the myriad of other gut-altering treatments. Positive results require frequent administration, and ‘tolerance’ to therapy sometimes makes them less effective.

However, the use of suramin is based on a different paradigm (how cells respond to stress) that takes into account the diversity of possible causes of autism, both environmental and genetic. That such a new direction in research is being explored is exciting and hopeful.

For now, families need to continue to be patient. Especially in children, interventions that are so invasive and potentially harmful require more study and followup, in order for parents to make a truly informed decision.

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.

Thanks, Moms, for Your Special Attention

Sunday, May 14th, 2017

There are some great fathers out there, to be sure. Dads, don’t get me wrong, I’ll give you guys your due in June. I’m not judging and I have no idea how I might have done with such a challenging journey as raising an autistic child. I am simply reporting my observation that, by far, the majority of amazing caretakers out there are the mothers.

Dr. Martha Herbert has often begun her scientific presentations with a story about a friend whose adult child awoke from anesthesia and spent hours speaking normally with her mom. The daughter knew how difficult of a child she was and how much hard work her mother had done to get her to this point. After falling back to sleep and re-awakening, the daughter again exhibited her autistic personality. Dr. Herbert uses this example (plus more genuine scientific evidence) to teach that there seems to be a reversibility to ASD, and we have yet to even look at the problem in the right manner (as a whole body disorder). Her message is for moms to keep trying, as will SHE, until there is an answer.

Jenny McCarthy’s “mother warrior” credo has helped recover many children, I am certain of that. Her message has been that the general public cannot necessarily trust conventional medical thinking about the diagnosis, etiology, treatment, and prognosis for this epidemic. You can’t blame her for seeking answers for her son and all of the other children with autism.

So, in many of my posts, I write about planning, medication, special diets, supplements, and therapies. For the moms out there, that’s preaching to the choir. I’m only enumerating such chores as I detail the work that every ASD patient requires. I have learned most of my art – about toilet training, time management, addressing stims, GF/CF, cluster classes, IEPs, sensory conditioning and much much, more – from the insightful and relentless mothers who are determined to help their child recover.

Thank you. Thank you all for letting me examine and help care for your children. It has been one of the best experiences that I have ever had in my professional life.

The only piece of advice that I’ll offer in this post is this, take some time out for yourself and your spouse. I said “some”, ’cause I know that it is sometimes impossible. But, it needs to be more than “none”. The number of intact families in this practice is even lower than the national average.

At this time of year, mothers seek advice about how to continue administering their children’s pharmaceutical protocol, in camp or on vacation. The diet, vitamins, and medications that require prescriptions – all in order to get on a plane. Then, there is the plane! I’m not quite sure how families are able to get anywhere with all of the work that is required.

Mothers are special. Mother’s Day is certainly a deserved holiday.
Moms of Autistic Kids?
Lucky children.

Speech Apraxia and Autism Misbehavior

Sunday, May 7th, 2017

This week (May ’17), Penn State researchers claimed to have disproven a generally-accepted premise with an article is entitled, Tantrums are Not Associated with Speech or Language Deficits in Preschool Children with Autism.

The Study
The authors retrieved information from a previous data collection, which was not intended for this purpose, and reviewed 240 cases. Children, who were 15 to 71 months old, “… whose mental age was sufficient for verbal communication but who lacked speech did not have more tantrums than children with adequate speech. In fact, children with an expressive language age at or above 24 months had more tantrums than children whose speech skills were below 24 months.

Their conclusion is the exact opposite of what we all suspect. “Our findings and those of others do not support the belief that preschool children with autism have tantrums because they cannot speak or because their speech is difficult to understand.”

Discussion
In autism, THE toughest sign to successfully ameliorate is a patient’s inability to produce spoken language. Indeed, professionals who have chosen this undertaking will attest to significant challenges. Proven medical protocols are few, though anecdotal ones abound.

The second most difficult expression of ASD is immature conduct, including tantrums. Behavioral intervention is the proven successful treatment. Conventional medical protocols invoke potent pharmaceuticals with significant side effects and variable results, so alternative strategies have emerged.

For years, parents and professionals, alike, have accepted a direct relationship between these two disturbing symptoms. There appears to be general agreement that, as children get older and smarter, they are increasingly frustrated by their failure to adequately communicate. There is a 30-year body of literature that supports this position.

Why were the findings of this paper
so counterintuitive?

This perspective is supported by substantial research, as well. The authors argue, “The reason may in part be because of the effectiveness of interventions… which use behavioral techniques to teach children to use words, and not inappropriate behaviors, to communicate.”

In other words, if language improves through successful therapy, a child may still have tantrums if that issue is not addressed, per se, as well. Those patients who do not get adequate socialization skills continue to resort to outbursts, in order to get needs met.

The publication lacks several key elements. ‘Tantrum’ is used as an outcome measure, begging the question of whether more serious issues, such as self-injury or aggression, were considered in the definition. Medication usage was not documented. Perhaps, patients who were most disruptive received more drugs without relief or even negative side effects? Additional medical issues were, likewise, omitted from the data. In the diverse ASD population, this could be a highly significant variable.

Conclusion
The outcome of this paper could have been that children who have better language skills are more likely to have tantrums! The authors were careful to leave that out. Plus, the closing sentence includes, “Our findings do not diminish the importance of evidence-based interventions…”

If, as the paper asserts, the reason for fewer tantrums was an individual’s type of intervention, then the conclusion seems to be that Functional Communication Therapy is useful for tantrums due to autism.

Or, one might deduce that each individual diagnosed with ASD is so different in their physical and mental state, that there is no certainty, at this time, to explain why this group showed a null relationship.

Is it true? Could tantrums, “… in large part be intrinsic to autism and not driven by developmental processes, such as language.” Is it important? Why? Perhaps, such insight could provide a more effective and efficient window of treatment options. Furthermore, there is general agreement that traditional measures can play an important role in remediation.

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Brian D. Udell MD
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