Posts Tagged ‘Attention deficit’

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.

Screen Addiction Disorder?

Sunday, July 9th, 2017

Health professionals have coined a number of new-century terms in order to describe signs and symptoms that were previously unspecified. These have included, Sensory processing, Visual processing, Auditory processing, Executive functioning, Social anxiety, Oppositional Defiance, and Attention deficit – Hyperactivity disorders.

How About Screen Addiction Disorder?
It’s SAD.

Everyone, it seems, is glued to their gadget. We seek instant gratification about the latest Facebook post, email updates while at dinner, or even read and write texts while driving. These, and many more self-absorbed behaviors are magnified in autism.

The Child Development Center has treated a stream of youngsters who come in, balancing as many as 3 screens at the same time, in order to maintain self-control. In patients with ASD, repetitive behaviors and restricted interests are part of the fabric of their developmental disabilities. Why provide them with a tool that preys on their most serious weaknesses?

The two most common answers are 1) “It makes them happy,” and 2) “They are incredible with technology.”
1)  Kids don’t know what’s good for them, and 2) The software is great with the user, not the other way ’round. Even the youngest toddler can navigate a You Tube video or play Angry Birds.

Discussion 
Two recent NY Times op-ed stories got this discourse started. They were, First, Relax and Let Your Kids Indulge in TV, and Why Some Men Don’t Work: Video Games Have Gotten Really Good. Surely there is irony in these two stories appearing the same day?

The former opinion was written by an Australian mental health doctor and mother, who waxed nostalgic about the ‘good old days’, sitting around the TV with the fam. She wrote, “I find myself passing on to my children the addiction, at a time when this topic has become a focus of parental guilt and judgment.”

Wrong century, wrong technology.
“Family Ties” ≠ “Mortal Combat!” And, Phil Donahue ≠ Twitter.

The latter story was based on a publication in The National Bureau of Economic Research entitled, Leisure Luxuries and the Labor Supply of Young Men. The authors concluded that, “… innovations to gaming/recreational computing since 2004 explain on the order of half the increase in leisure for younger men, and predict a decline in market hours of 1.5 to 3.0 percent…”

The Times article quoted, “Adam Alter, a professor of marketing and psychology at New York University who studies digital addiction, highlighted the fact that, unlike TV shows or concerts, today’s video games don’t end.”

“Most forms of entertainment have some form of a stopping cue — signals that remind you that a certain act or episode is ending, like a commercial or a timer. Many video games don’t have them… They’re built to be endless or have long-range goals that we don’t like to abandon.” If this phenomenon is true for able-bodied young men, then this ought to be a cautionary tale for those who are even more susceptible.

I warned about this addiction previously. Repetitive viewing of videos and games does not promote imagination or socialization, which are core skills especially lacking in autism. Modern children spend little enough time outdoors, so a burning desire to get back to the iPad leaves athletic skills and exercise sorely neglected. Sound sleep suffers, as well.

Conclusion
If your child is neurotypical, the condition is problematic. The usual approaches to achieve balance can be successful (as long as the family isn’t experiencing the same syndrome). The author of the ‘TV is good’ piece claims to have found that ability to get her kids on nature walks and back home to watch informative documentaries.

Parents of children with ASD know this digital dilemma well. Reasoning, bribery, even physical punishment is fruitless. It takes hours of ABA to extinguish this seemingly obsessive-compulsive behavior.

This advice is offered to alert new parents, who may simply wish to entertain, or offer an early academic background. If the concern is that your child may suffer a ‘digital gap’, there will plenty of new iStuff coming out all of the time. It’s best to wait until there is a level of discipline and restraint.

We see evidence of Screen Addiction Disorder in all kinds of individuals, but it’s worse in patients with autism. It’s SAD. Treatment is difficult, prevention is the best strategy.

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’.

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.

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.

An Autism Doctor’s Earliest Signs

Sunday, April 30th, 2017

In spite of an ever-increasing number of atypically developing children, and in the face of a plethora of evidence demonstrating that early intervention results in quicker resolution of problems, pediatricians continue to appear to be more concerned about whether the vaccination schedule is current.

Every day, parents relate stories about a doctor who said, “The child is NOT autistic. He has sensory processing disorder and speech apraxia.””Give it some time,” seems to be a common mantra. Are universities teaching this wait-and-see strategy?

What other medical condition is dealt with in such a fashion? No abnormal mole is considered too tiny to dissect. A small amount of blood coming from any orifice warrants the swiftest investigation. Furthermore, it is generally espoused that early identification and treatment is the best remedial policy, stimulating the appearance of screening programs for cancer and heart disease, for example.

I have examined thousands of high-risk infants, and the younger siblings of many ASD patients over the years. This is my top ten list of physical signs in the first 18 months that should raise suspicion, and demand answers, rather than a dismissive pat on the head, accompanied by a professional’s proclamation, “I wouldn’t worry!”

Your mother thinks that the baby, “… isn’t doing alright.”

There is an inability to successfully breastfeed, especially in highly motived or experienced women. La Leche League has promoted and instructed us all in better ways to get the milk flowing, but a new era of poor suck on the side of the infant has emerged. This could either be the initial sign of a problem, and/or part of a vicious cycle leading to unusual behaviors.

A child who exhibits gastro-esophageal reflux (heartburn), persistent colic, inconsolable crying, and/or severely interrupted sleep patterns may be displaying a red flag. Of course, mild cases could be due to individuality, parental indulgence or ‘milk intolerance’. In this century, think: a condition that deserves investigation, and thoughtful intervention. Prescribing Prevacid is not a workup.

Signs of poor core tone may include a twisted neck, flat head, or delays in motor milestones. In the previous century, doctors were worried about cerebral palsy. Now, it should be considered as a possible earliest sign of autism.

Likewise, the absence of crawling, or persistent ‘army crawl’ has been a documented occurrence in infants who later show ASD.

A breast-fed infant who poops less than twice per day, or a formula fed child who ‘goes’ more than 4 times should raise concern. Unusual stooling often indicates abnormal gut flora, causing direct inflammation and/or additional bacterial changes, and possibly further alters nutrition.

A very early ear infection, or any recurrent medical condition is notable. At the beginning of my 40-year experience with at-risk children, antibiotic use in the first year of life was only a fraction of the exposure that occurs in this century. Investigation of immune competence has everything to do with the modern epidemic, I am certain.

The likelihood of ‘food allergy’ in the first year of life is actually very low. When a pediatrician assigns noisy breathing or fussiness to this presumed ‘diagnosis’, beware that they are not practicing real evidence-based medicine.

After the first few months, infants will look at faces, follow, and later, begin to imitate. If social interactions, such as rolling a ball back-and-forth, do not emerge – and certainly if they disappear – the child needs to have a thorough medical evaluation.

Speech that begins, but does not progress is a worry. When language fades, it is never normal. Period.

Conclusion
Any of these signs could just be a benign variation of normal development. A few are reason for real concern, exploration, and early intervention.

I have presented similar information in previous posts. In addition to these physical signs, I have written about other high-risk situations, and associated factors that assist a physician in ascertaining a specific diagnosis. It sometimes helps to provide regular updates for parents to show their child’s doctor, in order to get things moving on the right track.

Getting a Special Needs Break

Monday, April 24th, 2017

Parents of children with developmental disabilities rarely get a break. Sometimes, it is not even possible to have a child watched for a couple of hours while shopping, taking care of your own health, seeing to the needs of other children, or running household errands.

As a practitioner who cares for patients with special needs, I often find myself with no one to care for my practice, when I’m attending a meeting or taking a rare vacation. The wedding of a dear friend in California recently highlighted this issue. Patients still get fevers, rashes, diarrhea and even seizures. Medications may not be working, or causing untoward side effects. Parents from all over continue to experience the frustration of dealing with the autism epidemic as it emerges in their part of the world.

Acute illness can be addressed locally by pediatricians, hospital emergency rooms, or urgent care centers. The main difficulty is that doctors are not trained in special needs care. Although they may be able to correctly diagnose and treat an ear infection, they are usually way too quick to prescribe antibiotics or fail to perform appropriate laboratory testing. With the increasing popularity of group practices, continuity of care is compromised. Often, children go from one doctor (or nurse practitioner) to another, further increasing confusion, and rarely getting to the underlying problem(s).

The Child Development Center of America
It would not be possible to keep up with all of the patients’ problems if it were not for a digital connection and web communication. Many mornings start with a picture of poop or an unusual skin lesion. It may not be as precise as touching and feeling the actual patient, but I have been able to handle a multitude of problems because of the Internet.

More importantly, I enjoy a great staff, led by our practice administrator Karen Vossen, herself the parent of two children with a diversity of medical problems, including autism. Ashly, at the front desk, speaks fluent Spanish, which is a must in such a diverse South Florida population. Likewise, Isabella, who interacts with the children, speaks additional foreign languages. Lisa, who handles the books (among her other duties), has four boys, including one who is doing great with his ASD. Leilani, our newest member, has experience with autistic children and hopes to become a speech therapist.

Most assuredly, I have a great family who understands my life’s passion. I am encouraged by my beautiful and patient wife, Jacqueline. She is the person who mused me into this amazing journey and constantly reminds me that my physical and mental health matter, as well.

Useful Strategies
First, in times of extreme stress and exhaustion, take a long, deep breath and congratulate yourselves on the ability to deal with so much constant pressure. We are all doing the best that we can for the children. Let’s not forget that maintaining our own wellbeing is paramount to assisting others.

Recharging the batteries by exercising, personal pampering, date nights and hobbies that take our focus elsewhere, even if only for a brief period, is a necessity.

Depending on the degree of a family member’s difficulties, respite care may be essential. In some states, the National Respite Network may be able to provide some necessary assistance.

The Autism Society and local chapters may provide a great source of support. Joining such networks can be especially helpful for parents of newly diagnosed children, letting families know that they are not alone in this journey. Local organizations, such as your state’s Developmental Disabilities Council or Family Services Agency (Broward 211 in Florida, e.g.), may be a useful choice.

Finally, try to find a good Special Needs practitioner and stay away from Dr. Google.

Conclusion
Although it’s not exactly the same problem, the challenge of finding help in this age of an increasing number of developmentally demanding children, complicated by a paucity of available resources, is shared by parents and professionals, alike.

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).

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Brian D. Udell MD
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