Posts Tagged ‘Attention deficit’

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!”

The Real Cause of Autism

Sunday, October 8th, 2017

Recently, these 3 headlines appeared on my iRadar Screens:

Genetics a Cause of Autism in Most Cases: Study
 Korean-American Professor Couple Identify Major Cause of Autism
 Could multivitamin use in pregnancy protect children from autism?

Yet, the research was entitled:

The Heritability of Autism Spectrum Disorder
Mum’s bacteria linked to baby’s behavior
Antenatal nutritional supplementation and autism spectrum disorders in the Stockholm youth cohort: population based cohort study

And, the papers covered the following data:

The examiners mathematically re-analyzed decades-old Swedish registry information that strengthened the association with genetic factors. About the findings the lead author has admitted, “our results do not give any information about specific genes or other direct causes. It only informs us that genes are important…. our study cannot shed any light” on the reason for higher rates.

This was published in Nature, entitled, Maternal gut bacteria promote neurodevelopmental abnormalities in mouse offspring. “The couple found that certain bacteria in the mother’s digestive tract can lead to having an autistic child. Furthermore, they found the exact brain location linked to autistic behaviors, which can be used to find a cure for autism.” Mice are not men.

Using a similar Swedish cohort as the first study, authors reviewed supplementation with multivitamins, iron and folate. They concluded that, “Maternal multivitamin supplementation during pregnancy may be inversely associated with ASD with intellectual disability in offspring.”

Discussion
All of the information first appeared in reputable journals. The stories took a turn through leading health and science magazines, and finally popular media announced theories as if they were dogma. Often, autism research is subject to the ‘telephone game’, resulting in overstated and oversimplified claims masquerading as explanations for complicated medical concepts.

Nevertheless, these investigations represent clues, directions to be pursued, possible new treatments and even prevention. It’s so confusing because they document only baby steps in this scientific puzzle.

Conclusion 
Rather than view these studies as disparate, an alternative perspective could be something like:
If autism is the result of a susceptible individual (genetic study) affected by an environmental stress (mouse study), then utilizing a metabolic intervention (third study) might make sense.

Early Experience with Helminth Therapy in Autism Treatment

Sunday, September 3rd, 2017

Gastrointestinal issues are one of the most common co-morbidities in patients who experience signs and symptoms of ASD. Treatments have included prebiotics, probiotics, antioxidants, cathartics, detoxifying agents, antibiotics, antifungals, human fecal materials, and others. Singly, and in combination, they have resulted in sometimes limited success and frequent relapses.

Furthermore, patients with ASD suffer a variety of allergic and autoimmune conditions, including rheumatoid arthritis, food sensitivities, asthma, and eczema.

Filling that therapeutic void is the coming world of helminths. It is a unique form of gastrointestinal/allergy treatment, now being popularized by a highly respected pediatrician, Dr. Sidney Baker. At The Child Development Center and other Developmental Clinics, treatment with HDC is becoming an additional strategy for patients with autism.

What is helminth therapy?
According to the NCBI, it is “The treatment of immune system diseases by deliberate infestation with helminths. This therapy is partly based on the HYGIENE HYPOTHESIS which states that the absence of parasites increases immune dysregulation because of the lack of stimulation of REGULATORY T-CELLS.”

As researched and reported early in this century in Science, “The induction of a robust anti-inflammatory regulatory network by persistent immune challenge offers a unifying explanation for the observed inverse association of many infections with allergic disorders.”

As unappealing as it may seem, the rat tapeworm, Hymenolepis diminuta cysticerci (HDC), is considered a mutualist, providing benefit to the host without causing longterm harm. Out-of-the-box thinking by a few functional medicine doctors has taken the following course:

Chronic illness is an expression of autoimmunity
Gut problems and allergy in autism are a form of chronic illness and autoimmunity
HDC interferes with autoimmunity
Provide HDC for chronic illness, including autism

The Protocol
In our practice, an email is sent with the parent order form, directions explaining how to administer and store the HDC upon arrival, as well as some background information. I send a request and a summary of the medical history. After reading all of the information provided, the parents contact Dr. Baker, and the product is sent to the home.

How to take the product?
Patients take them by swallowing the supplied liquid (the organisms are barely visible), or adding it to another drink. The Primobiotics dose is 1-60 HDCs, given every 1-4 weeks. The usual plan is to start with a dose of five HDCs – fewer in young children. It may take up to 6 weeks to see positive indicators and six months to fully determine that it hasn’t helped. When found helpful, the length of treatment has yet to be determined.

What are the costs?
The costs (directly from the company) are $100 for 1–10, and an additional $25 for each additional 10. The maximum charge is $175 for 40 HDC. Above that there is no additional increase in charge. Shipping is usually $35-65 but for Western US and Canada, it may be $80-100.

What are the downsides?
Constipation should be taken care of before initiating the use of HDCs. There may be some digestive upset with mild abdominal discomfort and some changes in bowel movements. Hyperactivity or insomnia lasting for a day or two are experienced by less than half of recipients.

If, after the first dose there are no positive or negative effects, the dose is increased as the optimal dose is established. Some individuals may show indications that a dose is ‘too much’ – with a more robust digestive discomfort or hyperactivity/insomnia than is usually felt as part of the initial response, in which case the dose is reduced to the minimal number.

What if a worm doesn’t pass?
According to Dr. Baker, a worm ‘sticking’ is a rare and benign event that can be treated with a dose or two of appropriate medicine.

Discussion
Note that HDC is not an autism ‘cure’. Rather, it can be useful as a treatment for the myriad of co-morbid conditions that can cause signs and symptoms related to ASD. Perhaps that is why Dr. Baker reports a ~50% success rate, after recommending this therapy to nearly all of his chronically ill patients. “What’s the alternative?” he would ask.

Though he eschews fearlessness about his willingness to offer advice, Dr. Baker has assumed a significant amount of responsibility in this endeavor; from cultivating the critters, to teaching others how to breed them, to sending out his own ‘farm-fresh little dudes’. He has personally answered emails, and he even called one of our parents who had concerns.

Interested practitioners are working together to educate and gather experience, in order to optimize this intervention. Specific probiotics are indicated, as well as evaluating progress, and even examining  unusual stools that document the gut ‘reset’. For many, the question will be, “What to discontinue first?”

Conclusion
Doctors who have assumed the challenge of treating patients with autism must remain open to all treatments, and recognize that it is the PATIENT who we are treating, not a specific disease. Some interventions, like GcMAF, were helpful, but are no longer available. Others, like antifungals and antioxidants, have taken time, and we’ve gotten pretty good.

Our patients have been satisfied with the service. Within a couple of months, two of five children have already shown positive responses, with improved behavior and communication. Treatment appears to be a safe, effective and reasonably priced way to assist patients with significant GI and / or allergic challenges.

Published recently in the New York Times:
Too Clean for Our Children’s Good?

For those who wish to read more and utilize another HDC source, here is BiomeRestoration.com

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.

Back to Back to School Issues for Autism and ADHD

Friday, August 11th, 2017

Forget pencils and notebooks. Here is my take on the most important items that children who exhibit signs and symptoms of ASD and ADHD really need to make it through the coming season:

10. A weighted vest, and other such functional products. Neural systems are on overload, so any/all sensory reducing strategies need to be dusted off and utilized. My son, a former Special Ed teacher, reports that one of his favorites was Chewelry.

9. A special request for an IEP meeting to review everything agreed upon in the last IEP, and how the child has progressed. This can be especially important for the children who are losing the diagnosis. Being placed with role models is preferable to being the ‘one’.

8. A written, visible schedule. The previous school year’s busy agenda needs a re-boot. With non-preferred activities about to consume more time, acceptance and self-control become paramount, so clear expectations are a good start.

7. Sleep. Likewise, the body’s internal rhythms have gone on a summer vacation. Warm epsom salt baths are great to pave the way at bedtime. Chamomile is fine, and more difficult problems may be ameliorated with the administration of melatonin. Essential oils on the soles of the feet can be quite effective without the use of medication.

6. Supplements and medications. Children with ADHD are often given drug ‘vacations’ during the break. Appropriate dosing and timing may have changed as the summer progressed, so try getting things started a week or so early.

5. Healthy food. Unfortunately, schools do not often assist in this endeavor. If junior has been slipping off the diet, or eating too much junk, get back to basics.

4. An app to disable the iPhone. Really. The time spent on iPads, computers and video games needs to become severely limited.

3. Playtime. It is very difficult to transition from a season of freedom to one of academic drudgery and endless therapy sessions. Going to the park, ballgames, and other outdoor athletic activities is a basic part of being any kid. Even though physical activity is not as preferable as that smartphone, try to make it happen.

2. Soap. Stress cleanliness and get the child into the habit of washing their hands. To the extent that the school will cooperate, tissue dispensers, hand sanitizers and bathroom etiquette could provide some barrier to the onslaught of cooties.

1. A big dose of time and patience. As students fit into the new school year, so do teachers, administrators and other professionals need time to understand each child’s strengths and weaknesses.

VACCINATIONS?
For parents who are confused about administering childhood vaccinations, consider drawing blood ‘titers’. For those who have already had some inoculations, this is a measurement of how immune the child ALREADY IS to measles, mumps, rubella, varicella, etc. Your doctor can order levels of IgG directed against those diseases. High levels will not be accepted by the Public Health Department, so families will still need a ‘personal’ exemption. However, the already-immune child can be proven safe – as well as protecting their classmates.

Everyone remembers that first day back at school; anxiety, fear, excitation, and dread. The assault on the senses, social stresses and academic expectations are an even more tremendous hurdle for students with challenges in those very areas.

Most of all, parents’ love and understanding gets us all through those first inglorious days and weeks.

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Brian D. Udell MD
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