Posts Tagged ‘Complementary and alternative treatments’

Fecal Transplant as an Autism Treatment

Sunday, June 3rd, 2018

The prestigious New England Journal of Medicine recently published an article entitled, Fecal Microbiota Transplantation for Primary Clostridium Difficile Infection. It is likely that parents of children with ASD, who exhibit gastrointestinal difficulties, will ask, “Can we use this to help Junior recover?”

The answer is a complicated, “Maybe. But, more research is needed.”

The study looked specifically at ‘C. diff’ – one strain of bacteria, not to be confused with parasites, fungi, viri, or other nasty cooties. The follow up was a mere 70 days. In children with yeast or other such distress, recurrence may appear weeks, months, or even years later.

Recent Literature
According to the Fecal Transplant Foundation, the treatment, “was first documented in 4th century China, known as “yellow soup”… there has never been a single, serious side effect reported…”

2010
Pyrosequencing study of fecal microflora of autistic and control children
Dr. Feingold, “examined the fecal microbial flora of 33 subjects with various severities of autism with gastrointestinal symptoms, 7 siblings not showing autistic symptoms and eight non-sibling control subjects… The results provide… a compelling picture of unique fecal microflora of children with autism with gastrointestinal symptomatology.”

2012
This review concluded that FMT, “is now arguably the most effective form of Clostridium difficile eradication… potential value in ulcerative colitis… as well as previous unexpected applications, such as obesity, diabetes and several neurologic disorders.”

2013
Fecal Microbiota Transplantation: Indications, Methods, Evidence, and Future Directions
“Most institutions utilize fresh feces, have adopted an approach of using highly filtered human microbiota mixed with a cryoprotectant and then frozen… with dramatic shifts in recipient gut microbial communities noted after transplantation… The route of administration … can be naso-duodenal, transcolonoscopic, or enema based…”

2014
A research paper that summarizes, “FMT is a highly effective cure for RCDI (recurrent Clostridium difficile infection), but increased knowledge of the intestinal microbiota in health maintenance, as well as controlled trials of FMT in a wide range of disorders are needed before FMT can be accepted and applied clinically.”

2015
Fecal microbiota transplantation broadening its application beyond intestinal disorders
The authors covered earlier works and noted, “FMT is a promising approach in the manipulation of the intestinal microbiota and has potential applications in a variety of extra-intestinal conditions associated with intestinal dysbiosis.”

2017
Microbiota Transfer Therapy alters gut ecosystem and improves gastrointestinal and autism symptoms: an open-label study
A rather complicated 2-1/2 month protocol resulted in, “an approximately 80% reduction of GI symptoms at the end of treatment, including significant improvements in symptoms of constipation, diarrhea, indigestion, and abdominal pain. Improvements persisted 8 weeks after treatment… behavioral ASD symptoms improved significantly and remained improved 8 weeks after treatment ended. “

Discussion
Signs and symptoms of gastro-intestinal distress ought to be present when seeking such treatment. This may appear obvious, but oft-times the gut has already been addressed and healed. Or, the primary cause(s) of the autism may originate from elsewhere, such as metabolic, genetic, toxins, etc. This complicated intervention may be superfluous.

One potential harm of fecal transplantation is The Unknown. What might the tiny viri, of which we know little – other than their ability to transform cells (cancer, cell death, immunity) – do to the recipient as regards potential long term danger?

Another risk is The Known. Can transferring bacteria from one person to another cause harm (immediate or delayed), due to allergy or other incompatibility?

Prior to his untimely demise a few years ago, in a personal communication with the intrepid Dr. Jeffrey Bradstreet, he lamented that the process was extremely resource intensive (to assure safety) and subject to recurrences, after as little as 3 months.

Conclusion
Earlier, Dr. Feingold noted, “If the unique microbial flora is found to be a causative or consequent factor in this type of autism, it may have implications with regard to a specific diagnostic test, its epidemiology, and for treatment and prevention.” FMT research helps enforce the gut-brain connection that has been noted in autism since Dr. Leo Kanner described the condition 80 years ago (although his Freudian underpinnings seem to have obfuscated his patients’ GI issues).

Autism consists of a variety of mysterious signs and symptoms. In all of the studies performed to date, there is a relatively short followup period, not necessarily reflective of an affected child’s time frame. It is difficult to ascertain whether regression, aggression, poor sleep, diarrhea, constipation, sensory overload, etc. are due to a specific organism or a different mechanism. Accurate knowledge the intestinal microbiota is paramount to assess efficacy and prevention of recurrence.

As costs, resources and safety become established with other disease entities, and practitioners learn how to effectively administer the protocol, this type of treatment may take a more prominent role in treatment of Autism Spectrum Disorder.

* My previous article on this subject appears here.

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.

Medical Academy of Pediatric Special Needs Conference – Spring 2018

Sunday, March 18th, 2018

The Fall 2017 conference was ‘hurricaned’ out, so it’s been a year since I reported on the semi-annual 3-day scientific meeting of the Medical Academy of Pediatric Special Needs. This post will focus on the two most controversial topics – one, a treatment, and the other involving a popular new diagnosis.

Medical marijuana.
The less psychoactive, and legal part of pot – CBD (cannabidiol) – has been available for a couple of years now. Our experience at The Child Development Center, and the consensus of the group, was that it may be helpful for seizures, but perhaps less so for aggression, stimming and sleep. With no serious side effects, however, except for price (for high quality, measurable concentrations), it could be worth a try.

Much more effective, according to Dr. Michael Elice, are products that contain a measurable amount of THC (tetrahydrocannabinol). The presentation covered his experience with CBD+THC = medical marijuana. Utilizing the Autism Behavior Checklist as a measuring tool, he noted significant reductions in irritability, ‘lethargy’, stereotypy (stimming) inappropriate speech, and hyperactivity for a small number of children. To be fair, he also presented a child whose symptoms worsened with treatment. Overall, Dr. Elice told the audience that this intervention can be quite helpful for aggression and negative behaviors, though not for the ‘verbal diarrhea’ that many recovering children exhibit.

I inquired about the paucity of literature supporting medical marijuana, and studies that describe abnormal brain development when administered to youngsters. Dr. Elice responded that 1) The affected children’s brains are already demonstrating problems in development, and 2) Compared to the conventional meds, cannabis seems more efficacious with fewer side effects

No protocol was offered… the correct form, concentrations of THC/CBD, timing, and best mode of administration have yet to be elucidated. For physicians in states where pot is not legal, this treatment is not a realistic option. Even where there are medical exemptions, the process is resource intensive and tedious.

PANDAS/PANS 
Auto-immunity that affects a young child’s brain in an acute fashion, has been a popular diagnosis of late. Participants were treated to a full day of discussion by the most famous clinicians and researchers in the field. The room was packed.

The first speaker of the day was Dr. Aristo Vojdani, an Israeli researcher who practically invented food allergy testing. In fact, he began his presentation by declaring that he has learned the weaknesses of his earlier work, and the misconceptions about those tests. His take home messages were 1) Group A streptococcus is only one of many environmental trigger that contribute to symptoms, 2) Many pathogens and food components cross react with brain cells to cause problems, and 3) Accurately defining such antibodies and which receptors are affected is necessary to remove the environmental triggers.

Dr. Madeline Cunningham presented her modern view of molecular mimicry – “the sharing of antigenic determinants between the host and invading organisms.” The heart, brain, and other tissues can become the targets of the body’s response to environmental pathogens or toxins. Identifying the reactivity of brain proteins – the Cunningham Panel – may not be specific to strep, and helps explain disparate results. Tics, OCD and other neurologic difficulties are the result of a weakened blood-brain barrier and cross-reactivity.

Dr. Tanya Murphy presented, Antibiotic Treatment in PANS, Panacea or not? The specific signs and symptoms of PANS and PANDAS were elucidated. The role of Group A strep as a precipitating agent was emphasized. Specifically the rise of ASO (antistreptolysin O) often precedes the rise AntiDNAse B, but a positive culture for the organism is the best evidence. The successful role of antibiotics in general, and which ones seemed to work best was covered in detail.

A panel discussion involving these esteemed experts completed this incredibly interesting day.

Conclusions
Practicing functional and integrative medicine nowadays, with insurance stipulations and conventional dogma, presents unique challenges. The pediatric version faces even more obstacles, due to uncertainty of diagnosis, non-conventional treatments, and the vaccination issues. Without this Pediatric Fellowship, such work would be even more frustrating. The sharing of our collective experience regarding the epidemic of children with ASD and ADHD has taken diagnosis and treatment to newer and more modern levels of understanding.

As in previous years, the most valuable part of these conferences is the esprit du corps and networking of experience and ideas.

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.

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.

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.

Finally, An Anti-Anti Reflux Study

Sunday, October 1st, 2017

Perhaps my theory is full of water, but this seasoned pediatrician’s belief is that the price that modern society has paid for the successful ‘back to sleep‘ campaign has been an increased incidence of gastro-esophageal reflux (GERD). The practice was introduced to Western medicine at the end of the last century, to reduce Sudden Infant Death Syndrome (SIDS).

When newborns are kept solely on their backs, acid, mucus and food may be more likely to slosh all the way up to the back of the throat, eventually leading to the tubes that are supposed to drain to the middle ear. That has led to an increasing number of infections (otitis media), and an explosion of antibiotic use in very young children.

So, is it the reflux, the treatment of the reflux, the consequences of the reflux, or the treatment of those consequences that increases an infant’s risk of developing signs and symptoms? Aggressive behaviors, hyperactivity, lack of focus, sensory issues, and various gut disorders are commonly ascribed to ASD. Such are the complications woven into the stories of many parents interviewed at The Child Development Center.

The Literature
The practice of placing children on their back was based on observations in other countries, and theories about characteristic electro-encephalographic patterns characterizing those with increased risk of SIDS. Studies in the Netherlands confirmed the observation, and led to the AAP recommendations. No doubt, this strategy has worked for SIDS. However, could the emphasis on alteration of those sleep patterns – related to breathing – have a non-intended effect on other CNS development, as well?

Subsequent research has confirmed the increase in reflux related to infant positioning. The knee-jerk reaction by modern pediatricians has been the issuance of an Rx for antacids, in some form, from Tums to Nexium. Vitamin and mineral absorption becomes impaired. I have previously documented the pitfalls of this intervention.

This week, JAMA reported that, “… infants prescribed antacids to manage acid reflux, or spitting up, under age 1 had more bone fractures later in childhood.” Calcium absorption is believed to be the culprit. “There was a dose-response relationship between fracture hazard and duration of treatment with PPIs. Those taking them for a month or less were at a 19% greater hazard of bone breakage than infants who did not take the suppressors. Those taking the drugs for 60 days to 150 days were at 23% greater hazard and those taking them longer than 150 days were at 42% increased hazard.”

Discussion
The medical establishment altered the environment in the 1990s when we repositioned babies. Consequences have included plagiocephaly (flat head), torticollis (tight neck), and feeding difficulties. Then, we re-set the field again with antacid preparations. Present literature warning about these pharmaceuticals is probably just the tip of the iceberg.

Environmental change + Susceptible Individual = Alteration from Expected Norm

As a practicing neonatologist, nearly all of our ‘premies’ suffered up-chucking of some sort. I never ordered Prevacid, Zantac, Pantaprozole, etc. in the last century – it wasn’t available. Assiduous positioning and a small amount of Bethanecol (a drug to increase gastric tone) worked great. Ear infections in the first years of life were rare, and doctors seldom resorted to antibiotics. And, we didn’t see much autism in the follow-up clinics.

Conclusions
The Safe to Sleep® campaign offers lots of useful advice. SIDS has decreased by 50%. Some common sense is needed, however. For example, it probably is not necessary to stress the ‘supine position only’. Babies will usually drift to their sides, anyway, especially as they get older. And, if a responsible person is close, it’s pretty safe.

When reflux is diagnosed, simple positioning and an appropriate evaluation should precede any intervention that involves medication. If recurrent infections appear, the placement of ears tubes can mitigate the requirement for further rounds of drugs.

Is it really necessary to keep all infants on their back, all of the time? The ramifications of this policy need to be re-examined, as they may apply to the epidemic number of children with autism.

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.

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.

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Brian D. Udell MD
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