Posts Tagged ‘Hyperactivity’

Autism & MTHFR Explained

Sunday, April 1st, 2018

From the work of Jill James, Amy Yasko, and others

I have attempted to write this explanation – about the MTHFR gene – for more than a year now, often surrendering because it just gets so complicated (see diagram on right – and that is a simplified version)!

However, almost daily now, I need to explain the testing and interventions that revolve around the MuthrF#$Ker gene, which produces an enzyme that can assist in the brain’s ability to process (among many other important body reactions) in patients with ASD.

So, here is my simplified version, which covers the important steps for our understanding about testing and treatment for autism:

1. Folate (natural), folic acid (synthetic), Folinic acid (active) and 5-methyl folate (active) are not exactly the same a form of Vitamin B9.

2. There are several reasons why the levels of the B9 might be reduced:
Reduced intake. Picky eaters and kids don’t usually savor green leafy vegetables or lentils.
Problems with internal state of health will affect availability. Synthetic folic acid must go through the liver, natural folate is metabolized through the intestines.
Antibodies that bind to, or block the active compound. This is why doctors check the Folate Receptor Antibody Test (FRAT). The presence of such inappropriate barriers implicates reduced activity, so administration of additional vitamin should help alleviate difficulties.
Any ‘weakness’ in the body’s inability to convert the vitamin – that includes the MTHFR gene that regulates the enzyme called methylene tetrahydrofolate reductase.

3. The most studied and concerning genetic variations are often designated as C677>T, A1298>C. Hieroglyphics aside, we  inherit a ‘C‘ and an ‘A’ from each parent, and each deviation yields a less potent enzyme, so the implication is that giving the active forms of the vitamin can be beneficial. (Dr. Google, and many labs will report variations as pertains to the risk of hyperhomocysteinemia, a medical condition observed in approximately 5% of the general population, associated with an increased risk for many disorders.) For ASD, improved communication is the goal of treatment.

4. The supplements include L-methyl folate, available as a prescription under Deplin®. A web search of this product will often result in a call from parents, “My child doesn’t have schizophrenia or depression!” Marketing. Improved outlook is just one of the treatment outcomes. As noted previously, in ASD the aim is more efficient neural processing.

5. Another intervention is available as folinic acid (<1 mg dosages) and as the prescription, Leucovorin. An Internet inquiry may stimulate a call, such as, “My child doesn’t have cancer or get chemotherapy.” Different market. At a recent MedMaps.org conference, I asked two top researchers whether they prefer one or the other active form. Each doctor replied with the opposite answer. Availability and cost help determine choice, and sometimes we try both.

Conclusion
The various forms of folate appear to be safe, effective interventions that can address weaknesses in the area of oral-motor functioning in individuals with ASD. In practice, agitation is the principle side effect, and too much ‘stimming’ or aggression is reason for discontinuance.

The gene controlling MTHFR production is important, but not the only one affecting multiple enzymatic pathways that lead to successful data processing. We are already discovering other critical genetic steps (SOD, COMT, etc.) and there are thousands of other genetic crossroads that will improve our understanding and lead to successful interventions.

For our more advanced readers – please feel free to submit any corrections, etc. that you feel might be necessary.

A Successful Autism Doctor Visit

Sunday, February 18th, 2018

This story is a total rip-off. The New York Times recently featured a worthwhile piece entitled, A Doctor’s Guide to a Good Appointment. In that vein, I couldn’t help but add my two cents worth of advice about how to make the best of a family’s first visit to a developmental specialist.

Finding a functional medicine specialist.
The opinion of a pediatric neurologist is a good start. But, time is of the essence and evaluations that involve months of waiting serve the patient poorly, because they represent needless delay. A trusted pediatrician can be a great help. Therapists’ views are important because they are independent observers who know the child more intimately.

However, if you still can’t put your finger on what’s wrong, and if you find that you have been going to a variety of specialists (e.g. GI, allergy, dermatologist. pulmonologist), maybe it is time to seek a modern medical viewpoint. When possible, ask other parents about their research and experience, but don’t forget that every child is unique, so this merely represents one piece of the puzzle. The most reliable web advice is to be found at the Medical Academy of Pediatric Special Needs clinician directory.

Before your visit:
Labs, X-rays, MRI’s, EEG’s, IEP’s, psychological reports, hospital records, and evaluations of all types are extremely helpful. It is understandable, however, that some parents may prefer a completely fresh, unbiased opinion, perhaps saving that data for a future visit.

At The Child Development Center, we find videos extremely valuable. Taking the time to produce a written history with your specific concerns often yields the most satisfying consultation.

On the day of:
It may be difficult to appreciate the anxiety that all family members experience in this situation, including the child. Another stranger. More tests. Overcoming fear may require social stories, bribery, a favorite food, electronic devices, or some other tested method.

Either a picture, list, or a bag of the present medications and supplements, streamlines the visit. Plus, any archive of past meds – what worked and what didn’t – can similarly improve the efficiency of the interview.

Perhaps it goes without saying, but be sure to bring along any familiar toys, blankets, etc., so that the doctor is able to observe the children and the parents can focus on the conversation. Whenever possible, a close family member or therapist will be a valuable addition to the team.

An open discussion with the practitioner is imperative. Even the tension caused by a family’s disagreement about whether there really is a problem, is important in making an accurate assessment and creating a useful treatment plan.

Back at Home:
Perhaps this is the most difficult part. Who should you believe? Have any of the previous treatments been particularly successful? Has the child reached some plateau where he/she seems stuck? What are the alternatives? Listen to your heart.

Having reached some degree of non-conventional intervention, there may be a desire to further micromanage. Can 2 functional medicine doctors perform better than one? Although parents who attempt this course may be correct, a mixture of protocols could delay improvement. Get started with one intervention at a time, and become comfortable that nothing is causing harm. Be clear about what skills you are targeting and document progress.

Not infrequently, the treatment can involve periods of increased aggression or even regression, due to the ‘die-off’ of harmful organisms, food restriction, arduous therapy sessions, even new-found skills and sensory overload. Close contact with the practitioner (via email, phone, follow-up visits) is a must at this juncture, if the treatment plan is to be followed and successfully implemented.

Conclusion
All of the points in the ‘real’ Times article are well-taken and valuable in this instance, as well. Hopefully, this advice will serve to make the experience of taking the next step in your child’s journey even more productive.

Significant Autism Events of 2017

Thursday, December 28th, 2017

In the face of the exploding incidence of childhood developmental abnormalities, scientific knowledge is sorely lacking. These are my top picks for this year’s most useful human research and events that address our understanding about the cause(s) and treatment(s) of these conditions.

January
Disrupted prediction errors index social deficits in autism spectrum disorder
This BRAIN study which locates “… coding discrepancies between the predicted and actual outcome of another’s decisions…” provides, “a novel insight into the neural substrates underlying autism spectrum disorder social symptom severity… could provide more targeted therapies to help ameliorate social deficits in autism spectrum disorder.”

February
Microbiota Transfer Therapy alters gut ecosystem and improves gastrointestinal and autism symptoms: an open-label study
“This exploratory, extended-duration treatment protocol thus appears to be a promising approach to alter the gut microbiome and virome and improve GI and behavioral symptoms of ASD. Improvements in GI symptoms, ASD symptoms, and the microbiome all persisted for at least 8 weeks after treatment ended, suggesting a long-term impact.”

March
WORLD’S LARGEST AUTISM GENOME DATABASE SHINES NEW LIGHT ON MANY ‘AUTISMS’
There were several studies, this year, that implicated the genetic susceptibility of ASD. This one is from Autism Speaks’ MSSNG project. “The omitted letters… (pronounced “missing”) represent the missing information about autism that the research program seeks to deliver.”

April – Autism Awareness month
The Pesticide Action Network and the Natural Resources Defense Council filed a complaint against the EPA, led by Trump appointee Scott Pruitt, asking a federal court to make the agency follow through on an Obama-era recommendation to ban chlorpyrifos, a pesticide linked to brain damage in children. The Trump administration reversed that recommendation last week — even though the EPA concluded in November that the pesticide is associated with autism, lowered intelligence, developmental delays, and attention deficit disorders.

Injury Mortality in Individuals With Autism
Conclusions were that, “Individuals with autism appear to be at substantially heightened risk for death from injury.”

From the FDA, this warning – Autism: Beware of Potentially Dangerous Therapies and Products

May
Autologous Cord Blood Infusions Are Safe and Feasible in Young Children with Autism Spectrum Disorder: Results of a Single-Center Phase I Open-Label Trial
Not the most rigorous study design, and safety does not imply efficacy. Nevertheless, by utilizing the infant’s own stored umbilical cord blood, “Behavioral improvements were observed during the first 6 months after infusion and were greater in children with higher baseline nonverbal intelligence quotients.”

June
Intranasal oxytocin treatment for social deficits and biomarkers of response in children with autism
The Child Development Center has been finding this treatment somewhat helpful for eye contact and socialization.

Functional neuroimaging of high-risk 6-month-old infants predicts a diagnosis of autism at 24 months of age
Functional, not merely structural connectivity was tested at a very early age. Only in the research phase, “These findings have clinical implications for early risk assessment and the feasibility of developing early preventative interventions for ASD.”

July
Low-dose suramin in autism spectrum disorder: a small, phase I/II, randomized clinical trial
Dr. Naviaux reported the use of a 100 year-old medicine for African Sleeping Sickness on a small group of ASD patients. His unified theory of central nervous system dysfunction involves the ‘Cell Danger Response’ – a proposed common pathway leading to autism. This could represent the most promising research of the year.

August
Increased Extra-axial Cerebrospinal Fluid in High-Risk Infants Who Later Develop Autism
The MRI test may assist in identifying autism risk in susceptible infants and younger siblings of affected children. However, accuracy was not optimal. Additional studies will be required to suggest whether it is worth risking exposure to anesthesia for testing.

September
Some good publicity for Planet Autism. The Good Doctor, a TV show about an autistic professional appeared on ABC. Compared to Rain Man, it represents a quantum leap in the public perception of autism. Also, Julia, a muppet with autism, joined the cast of the popular PBS children’s show ‘Sesame Street’. Plus, debuting this year was Netflix’ new comedy about an autistic teen, Atypical. Finally, you may want to check out these two offerings: Keep the Change, a love story which challenges popular misconceptions about ASD, and the more serious Deejinclusion shouldn’t be a lottery.

Combined Prenatal Pesticide Exposure and Folic Acid Intake in Relation to Autism Spectrum Disorder
Folic acid is a vitamin given to pregnant mothers to prevent spina bifida. When taken in higher doses during the first trimester, “… associations between pesticide exposures and ASD were attenuated…” Should all younger women be taking vitamin B9, or could it be too much of a good thing?

October
Accurate Autism Screening at the 18-Month Well-Child Visit Requires Different Strategies than at 24 Months.
Comparison of Autism Screening in Younger and Older Toddlers.
Accuracy of Modified Checklist for Autism in Toddlers (M-CHAT) in Detecting Autism and Other Developmental Disorders in Community Clinics.
These three studies evaluated a popular screening tool for autism, and found that is more accurate in children at 24 months of age than at 18 months. Pediatricians and other specialists need a superior tool to test children younger than 20 months. At The Child Development Center, we have found that the Autism Evaluation Checklist, careful observation, and a detailed history will yield a more accurate diagnosis.

November`
Association of White Matter Structure With Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder
By utilizing a specialized MRI technique researchers were able to discover, “ASD traits and inattention and indexes of white matter organization, particularly in the…” tissue that connects the two halves of our brain. This technology might also identify ‘Processing’ and ‘Executive functioning’ disorders.

Subcortical Brain and Behavior Phenotypes Differentiate Infants With Autism Versus Language Delay
By combining MRI information plus behavioral assessments, scientists might be able to predict which children are only experiencing ‘benign’ speech delay.

December
Tools and techniques to improve the oral health of children with autism
By offering these suggestions, there is recognition of the need for improved mouth care in children with sensory and oral-motor issues. It’s one of the most obvious places to reduce the body’s inflammatory load.

Differences in fecal microbial metabolites and microbiota of children with autism spectrum disorders
Confirming the stool testing that functional medicine doctors utilize, “… data in this study support that children with ASD have altered metabolite profiles in feces when compared with neurotypical children and warrant further investigation of metabolites in larger cohorts.” Evidence-based medicine.

Advances on the research of the environmental risk factors of children autism
Amid all of the recent genetic research is this reminder that documents, “risks of autism in children may increase following in prenatal exposure to air pollutants, heavy metal and pesticides.”

Conclusions
Another year of more questions than answers. Why does it seem to be taking so much time for useful human studies to appear? Dollars for basic research depend on funding agencies’ understanding of this enigmatic condition. Plus, it takes more than a billion dollars to develop any new medication, so ASD is a very risky proposition.

Then, there is the Bettleheim effect (he popularized the ‘refrigerator mom’ theory), the Wakefield effect (any new idea about autism becomes suspect), the vaccine effect (just talking about ASD leads to this controversy), and the continued debate about whether there even really IS an epidemic.

However, practically everyone, nowadays, knows some family that is touched by this developmental disorder. We must continue to hope that progress will accelerate in response to the reality of a condition that affects so many of our children

Ten Top Toys Not to Get Children Affected with Autism for the Holidays

Thursday, November 23rd, 2017

Maybe this list applies to all modern kids. Especially as regards offspring who are ‘on the spectrum’, our experience and perspective from The Child Development Center can assist gift givers with decisions about whether holiday offerings are consistent with recovering challenged children, as well as making them happy.

What Not To Get Junior for the Holidays

1. Toys that talk to your kid. It’s supposed to be the other way ’round. Imagination through a favorite dolly or stuffed animal, and self talking, represent practice in communication. If someone has to invent a robot that speaks, it should also prompt. Can you imagine that conversation?

2. Stuff that fosters repetitious behaviors. Scrubbing Angry Birds on a digital screen preys upon the fabric of the youngster’s repetitive behaviors. Similarly, devices that enable constant You-Tube video re-viewing foment restricted interests.

3. Most digital gadgets, unfortunately engender those problematic criteria previously listed (#1, #2). i-Things should be reserved for when the parents absolutely cannot attend to the child, rather than becoming a body appendage. And, whenever possible, use a timer to notify the child, “No more.”

4. Presents that are primarily intended for indoor use. There’s already plenty of entertainment throughout the house, and miniaturized for portable use. Encourage healthy outdoor play. That means added work for families of special needs children; but scooters, trampolines, swings and parks – even if your child just watches – are worth a great deal more than another box of Legos.

5. Too many items. While it’s important to promote variety, as witnessed through the oft-uploaded FaceBook album depicting an orgy of holiday presents, that superabundance cannot promote anything but indifference to a truly valued item. As many parents know, just getting a child who is affected with ASD to appreciate any toy is a victory.

6. It’s difficult to completely eliminate preferred playthings. We show our love by gifting pleasurable items. But, those who thoughtfully provide a child’s favorite Disney movie or Star Wars model (when they already have 4 that are similar) might find their special item tucked away for another occasion.

7. Pets that you, the parent, don’t want to take care of. Because, no matter what any other family member claims, the purchaser of the animal is the de facto feeder, caretaker and parent of yet, another ward.

8. Any toy that emits an annoying noise. Frankly, if it makes any noise, the buyer should listen to it, like, 75 times, to experience the real gift. And, ‘friends’ who insist on giving your child such an annoying offering, aren’t really your friends.

9. Even objects that you don’t think can become weaponized may turn into dangerous flying objects. But, those that start out that way are suspect. Sure, that lightsaber looks appealing and fun. But will little princess Leah be bonking brother Jimmy on the head with it?

10. Gadgets with an easily accessible battery compartment. Even when the power is kept in a secure section, Junior may figure it out, especially if reinsertion into a body part is their mission. But, as you are traveling to the ER, you will know that, at least you tried to protect the child.

Conclusion
The message is, think twice before plunking down your precious dollars that could be otherwise spent on valuable therapies, which are necessary to promote healthier development. As with neurotypical kids, the box may be as entertaining (and better play) as the toy inside.

Consider the child’s state of autism. Not unlike many other areas of a special needs child’s life, it’s not fair, but even purchasing gifts requires extra evaluation.

The Perils of Home Treatment for Autism

Sunday, November 5th, 2017

Were it not for a lack of knowledge or, frankly, interest on the part of most of the medical community, parents of children with autism would be happy to relinquish their quest for appropriate treatment.

Too often, I listen to stories about pediatricians who have declared, “Well, I don’t know much about that ‘spectrum’ diagnosis. Let’s wait 3 to 6 months and see what develops.” Or neurologists who, after observing a patient for less than 5 minutes arrive at what they think is an accurate diagnosis, followed by little in the way of explanation, and even less effort to provide relief, other that a ticket to, “find a good therapist.” Then, there is the peanut gallery of mildly interested observers who implicate over-diagnosis and link the epidemic to anti-vaccination conspiracies.

That being said, the families who are left to fend for themselves in this void must navigate a sea of dangerous waters in order to find safe, reliable and effective protocols for children affected with ASD. These are some of the issues that frequently arise for those warrior-parents.

No matter how ‘benign’ the intervention, what works for one child might actually make another child worse. There are many different kinds of autism, including boys (aggressive) vs. girls, early vs. late (language regression), immune (rashes, constantly sick and antibiotics), gastrointestinal (reflux, bowel problems), and genetic variations. Furthermore, at any one point in time, speech apraxia, social isolation, sensory issues, or aggression might define a child’s autism. So, Dr. Google’s therapy du jour may not even apply to the present status of your offspring.

Will Junior actually take a supplement that was suggested on the Internet? Compliance issues are a major challenge among our patients at The Child Development Center. Children are usually very picky eaters, sometimes refusing to chew, or preferring to smell everything, and not likely to ingest another yucky concoction. The ‘best’ fish oil won’t work if your child won’t take it, so a better tasting, less expensive, well-tolerated version may be the better choice.

Costs can spiral out of control. Each affected child may take between 5 to 10 supplements/medications per day, often exceeding $300 per month. And, of course, it is not covered by health insurance. Can you really afford to give another remedy on the advice of a friend-of-a-friend-of-a-person-whose-kid-has-autism?

Complicated, expensive therapies are compelling. Parents who seek experimental, untested, and/or potentially dangerous regimens are not foolish or ignorant, they are frustrated and desperate. For the most part, unless your family has unlimited resources, your money is better spent on proven, conventional behavioral interventions.

Parents may not be aware whether item #2 on the list of supplements is actually amplifying item # 7, or nullifying. For example, notwithstanding manufacturers’ claims, digestive enzymes digest stuff. Probiotics, proteins, etc. work best when they reach their intended destination in the natural state, so some products must be given individually.

Home therapies do not take the place of a thorough medical workup by an experienced practitioner who demonstrates reproducible results. Vitamin D, e.g., is great, but high doses could be harmful. The child’s blood count, liver, kidneys, thyroid, and other metabolic functioning should be documented and followed when a fragile toddler is the recipient of pharmaceuticals of any kind, with potentially serious effects.

Conclusion
Rather than eschewing novel treatments, I am eager to become educated about patients’ reactions – positive and negative – so that my advice applies to each individual child, at a particular point in their recovery, targeted at the therapies that will take the patient to the next level toward independent function.

I have learned useful techniques from naturopathic, holistic, Ayurvedic, and just plain Mom-medicine. Epsom salt baths, attention to nutrition, probiotics, essential oils, and the like, can be quite helpful. However if you are experiencing a 2 year-old who is not making eye contact, a 3 year-old who doesn’t speak, or a 4 year-old who is banging her head, sooner or later you will get the most tangible results from a practitioner who can accurately identify, and treat, such serious challenges.

About regimens and treatments that some might say, “How can it hurt?” the most important lost resource may be time.

Fundraising for Autism Research

Monday, October 23rd, 2017

(Too) many years ago, our Regional Intensive Care Unit had the honor of hosting Audrey Hepburn. At that time, we were knee-deep in cocaine exposed babies, and the entourage stopped at the incubator of a 1 pound infant who was barely visible among the wires and tubes.

I asked the famous actress, 1992 recipient of The Presidential Medal of Freedom, and tireless worker for UNICEF, if she minded that the costs of this single child’s care were expected to exceed $1 million. “Wouldn’t you be able to feed an entire village somewhere?” Her surprising answer was, “There’s enough money for both, if we care to spend it that way.”

Fast forward to a recent NYC fundraiser for Columbia Presbyterian’s Transplant Initiative. I complained to my beautiful and patient wife, Jackie, that autism doesn’t receive the same kind of attention as other medical condtions. Frankly, I was jealous. There is enough money for both, if we choose to spend it that way.

There are presently ~117,000 people requiring an organ transplant of some type. There are over 5 million people with autism. In the past several years, I have attended, and been struck by, similar begrudging feelings at benefits for the Michael J Fox Foundation for Parkinson’s Disease. Sure, it’s important to give people a ‘second chance’ at life. But, have the children who are most affected with ASD, and their families, had any real first opportunity at normalcy?

Look, I’m not trying to compare apples to oranges, but it seems that ASD should be appropriately considered as THE childhood epidemic of OUR time. A great deal more is needed by way of funding for useful investigations. I am honored to serve as a Board Member in our local Autism Society of America – Broward County, but research and medical issues are for other institutions.

Increased collaboration among national organizations, including Autism Speaks, Generation Rescue, Talk About Curing Autism Now, Autism Research Institute, The National Autism Association, and local CARD groups, can only strengthen awareness and support.

Autism is stuck in a century-old paradigm of psychological causation. Lately, parents are offered a genetic etiology that leaves them with little hope. Disparate theories and alternate interventions require evidence-based research. That includes adequate vaccine studies – among other ubiquitous toxins – to identify those infants at possible increased risk for untoward consequences.

Acknowledgement of the successes that doctors, such as myself, are experiencing every day, needs to be appropriately studied and documented. It seems that more funding might be directed toward our work, were it not for all of the controversies surrounding an autism label. Unity among the various interested parties to support ‘N of One‘ treatments may help us attain that goal. That way, more toddlers would have access to earlier medical interventions, as well as conventional therapy.

Columbia’s Transplant organization’s motto is “We don’t just practice medicine. We change it.” Practitioners who are at the forefront of effective autism diagnosis and treatment feel that way, as well.

When Mom and Dad Disagree About Autism Intervention

Sunday, October 15th, 2017

Undoubtedly, the most stressful challenge that any family might face is illness in their child. Even in cases where treatment is established, e.g. acute leukemia, there are bound to be differences of opinion about which doctor, or hospital will do the best job.

When it comes to ASD however, even the diagnosis can remain in doubt. One parent, or a sibling, may have experienced “the same” symptoms, such as late speech or inattentiveness. So, the ‘watchful waiting’ advice from the pediatrician appears most prudent. A neurologist who observed your toddler for 70 seconds may have declared a normal – or dire – outcome. Who to believe? Then, there is the conventional medical community that continues to debate the condition and the ability of earlier recognition to alter the course.

Differences about the diagnosis
 Take an online questionnaire, such as the Autism Treatment Evaluation Checklist or Modified Autism Checklist for Toddlers. Although ‘experts’ may deem such surveying as ineffective, it is certainly a start. And, parents shouldn’t bother quibbling over whether Junior should get a “1” or “2” for any single answer. Observing suspicious tendencies may help convince a spouse, or doctor, that there could be real reason for concern.

 Listen to the advice of grandma or grandpa. They have raised other children, even if it was a different century. Try not to listen to advisors who have no responsibility for their opinions.

 If a therapist is already involved, ask what signs and symptoms they view as worrisome. It’s not their labels that you seek, but another professional opinion regarding suspect behavior.

 Don’t be afraid to ask the child’s teacher, or the school personnel, what they think might be different about your child. Academic staff are frequently the first to postulate a problem.

 Take videos of unusual behaviors. One parent may simply not have gotten to spend enough time to have observed a ‘stim’, or recognize activity as repetitive.

 Have the child evaluated by a trained professional. Then, insist on a precise diagnosis. Children with sensory processing, executive functioning disorder, and speech apraxia have autism.

Discrepancies about the next steps
So much inertia must be overcome to establish that first step, simply embracing traditional treatments can offer parents glimpses of improved development. OT (occupational therapy), PT (physical therapy), S&L (speech and language therapy), and ABA (behavioral therapies), must be given the time to reveal results.

At the very least, however, ask your pediatrician to make sure to perform some basic laboratory testing. Even if there is disagreement, how could it hurt to obtain a complete blood count, evaluation of nutritional status (calcium, magnesium, vitamin D, iron), and thyroid screening?

Opposition about biomedical interventions
Although the pull of the Internet is great, children are best served by contacting a physician who is involved in The Medical Academy of Pediatric Special Needs. Unfortunately, there are too few to adequately staff the burgeoning number of affected children, but, we practice state-of-the-art, evidence-based medical intervention.

By continuing our education within such a medical fellowship, and achieving a thorough knowledge of the science that appears in peer-reviewed journals, doctors have developed protocols that have been proven safe and effective. Although the costs are rarely adequately covered by medical insurance, the investment will last a lifetime. Literally.

Conclusion
Denial and delay are not in your child’s best interests. Doctors who are satisfied with the status quo will achieve that end. Modern thinking is that earlier intervention results in improved outcomes.

At The Child Development Center, our experienced and knowledgeable Practice Manager, Karen, has observed that families who seem to have the most success, “May not be on the same page, but are at least in the same book!”

Your child’s autism – Was it just a coincidence?

Friday, September 15th, 2017

Jodi’s Story

Born 3 weeks prematurely, and weighing only 5+ pounds, this beautiful child was at high risk for a multitude of problems. That might include apnea (periodic breathing), GERD (reflux), other feeding difficulties, a weak immune system, and developmental concerns.

Since Mom is a personal friend, I had already warned against getting the Hepatitis B inoculation prior to hospital discharge. In such a tiny baby, “What’s the rush?” There were absolutely no risk factors, yet the doctors were already irked by the mother’s non-compliance.

For various reasons, Mom’s attempts at breastfeeding were never supported by the medical establishment. However, she worked to save as much of the natural product as she could, and supplement whenever possible. As occurs so frequently lately, oral-motor difficulties did arise, and an inevitable path unfolded.

First, the pediatrician said that the baby, “Isn’t getting enough. Thicken with rice cereal and cut larger holes in the nipple.” When that failed to help, noisy breathing led to an Ear-Nose-Throat doctor checking the airway, which was fine. The ‘special formulas’ merry-go-round was boarded. The gastroenterologist suggested that it was a ‘food allergy’. What, exactly, could a 6-week-old premie be allergic to? Where is the evidence-based medicine on that theory?

Reflux was suspected and Prevacid was prescribed. That was when I stuck my nose back into the case. The upper-GI study actually showed that the baby had very poor esophageal motility, which was causing the noisy breathing and poor feeding. Positioning and a mild medication to foster more effective swallowing were ordered, and the baby thrived for the next few months. “What about the shots?” asked the pediatrician.

BTW, an earlier maternal Vitamin D deficiency had already been diagnosed by the obstetrician, though no intervention or followup had been suggested. With nutritional supplements and an appropriate probiotic, the baby’s eating, stooling and development were proceeding normally.

A couple of months later, Jodi had a temperature elevation. Antibiotics were administered, but when that failed to ameliorate her fever, another round of medications was ordered for a ‘urinary tract infection’. By the third course of meds, the child exhibited a severe penicillin rash, and I said, “Enough!”

Only one week after this, the doctor was badgering the mother to, “Get up-to-date on the childhood vaccination schedule.” A nurse was about to give the usual 1-year cocktail, but Mom called me right before the injection. I told her to pay the bill and shoot the contents into the waste basket. Apparently, none of the office staff or professionals that day were aware of the past month’s complicated medical course. “Sorry,” was their response.

Jodi is now becoming a toddler; walking, talking and acting like any neuro-typical kid. That could be thanks to our mild interventions, in spite of them, or simply a merciful act of God. Regardless, we didn’t play any part in causing harm by making unsubstantiated diagnoses, utilizing potent drugs not really meant for infants, or doubling down on an already-taxed immune system.

And, she is slowly becoming up-to-date on an appropriate vaccination schedule, so the ‘herd’ is protected.

Discussion
As a Special Needs Pediatrician, how many times have I heard the opposite story? The Child Development Center frequently cares for children with gut problems, repeated ear infections, eczema, and/or asthma, etc., who are constantly sick and receive antibiotics for practically every complaint. The vaccinations seem to be more important than a workup for persistent medical problems. The prudent practitioner would do well to delay the recommended schedule, gaining more trust from appreciative parents.

Autism is an epidemic. There is no study on high-risk infants who receive 3 rounds of antibiotics within the first year, display immune intolerance (strange rashes, e.g.), then get inoculated by a concoction of potent antigens, shortly after a (probable) viral illness. There never will be. What committee on human experimentation would let a child take that risk? Don’t tell me about “The studies show…” Doctors, use common sense.

Why is there so much autism? A generally-accepted scientific explanation is that diseases occur when susceptible individuals become exposed to environmental stress. Why doesn’t every child have this issue? Isn’t 1/68 enough? Think of the bubonic plague in 12th Century England. Everyone didn’t die.

Conclusion 
As introduced to a generation through Jenny McCarthy’s books, and recently documented in An Unfortunate Coincidence, there ain’t no such thing as a genetic epidemic.

This very personal journey is followed by too many families. We need more research, proper advice, and most of all, additional well-trained trained professionals for prevention, earlier diagnosis and useful interventions.

For the pediatrician who exclaims, “Well, I don’t know much about autism,” it’s time to pick up a book (or journal).

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.

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.

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Brian D. Udell MD
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