Archive for the ‘News-Maybe-Worthy’ Category

Another Alternative Autism Treatment

Monday, May 6th, 2013

Because of the relentlessly increasing incidence of ASD, and the relative ineffectiveness of many of the present protocols, alternative therapies continue to appear on the horizon. Some are completely new, such as Bumetanide. Some are re-introductions of previous regimens, such as chelation. And, some are relatively new therapies that had previously been used in other relatively resistant conditions, such as cancer. Treatment with GcMAF is an example of that.

The following is an explanation of the theory of GcMAF therapy for autism:

Part 1 – GcMAF:
Gc stands for the Group specific component globulin (a blood protein, produced in the liver and also made by the immune system). One of it’s actions is to move vitamin D throughout the bloodstream. It also enhances the body’s resistance. MAF stands for macrophage activating factor. Macrophages are immune system cells that surround, and then eat, cellular debris and invaders (bacteria, viri, ?fungi). Click here to see how this works.

According to Japanese manufacturer Seisai Mirai, GcMAF “occurs naturally in our bodies and instructs macrophages to destroy cancerous cells and foreign invaders.”

Part 2 – Nagalase:
Another concept in understanding this treatment is the enzyme Nagalase (α-N-acetylgalactosaminidase). Nagalase breaks apart the Gc protein – the precursor for the major macrophage-activating factor (MAF), therefore lowering levels of GcMAF (so, there is a reduction in the body’s ability to fight and clean up).

According to Dr. Bradstreet, a well-known ASD practitioner, a majority of his patients have been found to have high levels of this enzyme, which he has attributed to “the presence of viruses and… a weakened immune system.” A Belgian GcMAF producer writes, “Our immune system is always under attack so, in a healthy body, normal levels are considered to < 0.9. Readings higher than 4 are regularly found in cancer patients. Readings > 0.9 and < 3 are commonly found in autistic children.”

Part 3 – Testing:
The ‘workup’ would start by a physician ordering routine labs, Vitamin D and nagalase levels. In the US, this can be performed at Health Diagnostics and Research Institute. The company sends a kit with information, and the $65 blood test is sent back to their lab in New Jersey.

Part 4 – Treatment:
There was a product, listed as ‘probiotic’ on ebay, which sold it as an oral supplement for $125 plus $47 shipping. The instructions were to mix it in 32 oz. yogurt, and take ~3 oz. daily, or ~$17/day – for ? days. Hmmm… well, you can’t get it any longer, anyway.

Seisei Mirai describes the production process here.

The length of therapy? One site claimed, “Autism children can improve at five weeks with substantial improvements at 8 weeks… But everyone is different.” Another, “Allow 24 weeks plus of GcMAF for: Autism (85% improve, 15% eradication)… Remember everyone responds differently. We can’t say how you will respond.”

Costs of subcutaneous or IV injections, according to one producer are, “One vial contains 2.5ml of gcmaf that is enough for 8 weekly injections of 0.25ml and cost 600 euros plus 60 euros delivery…” Starting at a half of a dose for a month or so, that would come to ~$3,000-$5,000 for ~ 6 months, plus doctor visits and followup blood testing.

Part 5 – Risks:
There are always risks when treating pediatric patients with blood products, and when there are no long-term studies. Almost all of the clinical work has been performed on HIV, hepatitis B and cancer patients, which may or may not have anything to do with ASD affected children. The only ‘published paper‘ is basically a chart review, which is not unimportant, but not well accepted by the scientific community. Claims that GcMAF has cured cancers and HIV have been brought into serious questioning. Most of the positive information comes from companies selling the product.

Temperature elevation has been reported in some patients, which means that febrile seizures could be possible in young children. Hyperactivity, increase of stimming, agitation and aggressiveness (even with low dosage), which disappeared after discontinuing GcMAF has been reported - a common finding in many of our present protocols.

To date, only a few professionals are reporting on this treatment for ASD. There ought to be some more definitive information available – especially on those patients who were getting this therapy a decade ago.

Part 6 – Benefits:
So far, there are anecdotal reports of improvements in most signs and symptoms that are usually ascribed to autism; including cognitive abilities, attention and focus, learning and understanding, receptiveness and awareness of the environment, receptive language, expressive language, social skills, hyperactivity, fewer stereotypies, more cooperative and compliant.

That this may benefit even older patients is very encouraging.

Final word (so far):
The use of this compound that may help symptoms in selected ASD patients helps our understanding of the importance of 1) Vitamin D and 2) the disrupted immune response. Both have been implicated as important findings in autism. Present protocols which utilize energy enhancement, promote G-I health and traditional therapies can prove to be less expensive and invasive with more expected results, especially when an early diagnosis is made and treated.

There is just so much more to do before doctors can recommend such a non-proven treatment, and so much that parents need to understand if/when they decide on such a course. As opposed to one press release’s title, GcMAF represents only the beginning of the beginning in autism treatment.

Addendum:
At a recent organizational meeting, it was overheard that the dose is significantly lower than previously reported. This requires further investigation, explanation, and experience.

Hope and Understanding the New Autism

Sunday, May 5th, 2013

Stories describing new relationships occurring within the autism epidemic appear every day. Families wonder about their significance; whether they, in some way, can better understand why their children are affected by the condition (? older fathers, overweight mothers, living near highways, premature births, anxiety, copy number variations, etc.) and the significance of new treatments appearing on the horizon as it applies to their situation.

For example, the report of a “vaccine” FOR autism attracted attention recently.
The good: The thinking goes that killing Clostridia (an especially nasty cootie) with this anti-biofilm product could reduce autistic behaviors in many patients. Importantly, it validates “complementary and alternative” medicine’s insistence on the gut-brain connection in autistic behaviors.
The bad: It’s only been tested in rabbits.
The ugly: “The vaccine might take more than 10 years to work through preclinical and human trials, and it may take even longer before a drug is ready for market…”

Regarding treatment, UC San Diego recently reported “Antipurinergic Therapy Corrects the Autism-Like Features in the Poly(IC) Mouse Model”.
The good: The drug, suramin, targets a cell messaging system that produces a metabolic response to stress. “According to a new theory, autism is strongly linked to this pathway… Scientists in the U.S. found that the drug corrected 17 types of abnormality linked to autism in genetically modified mice, including social behaviour problems.”
The bad: It’s only been tested in mice.
The ugly: Mice aren’t men.

At the SFARI conference this past week in Spain, research was presented that supported the environmental theories of causation.
The good: There were significant presentations reporting associations with air pollutants and insecticides. Also, the topics of proper prenatal and pre-pregnancy vitamin and mineral intake were popular offerings.
The bad: ”The new studies showed only associations and couldn’t prove causality, and each factor itself likely accounts for a small portion of the risk for autism, researchers say.”
The ugly: ”Genetics likely account for about 35% to 60% of the risk, many researchers say.” Genetics accounting for susceptibility is not that helpful until the downstream abnormality is identified.

The report of placental changes signaling an increased association with later autism got a fair bit of press this week.
The good: The test “…yielded a 92% specificity rate for predicting ASD risk status — and …yielded a 99.9% specificity rate. The differences between the 2 groups were amazingly, awesomely different.” The earlier the red flag, the better.
The bad: “… this test will not be able to identify all individuals who might develop autism.”
The ugly: If we don’t do anything about the red flags that we see already (“Let’s wait until he’s older…”), is this information that helpful?

Another recent article that points to early involvement was Deviance in fetal growth and risk of autism spectrum disorder in the American Journal of Psychiatry.
The good: ”… poor fetal growth was more strongly associated with ASD with intellectual disabilities than without. Regardless of fetal growth, preterm birth increased ASD risk.” I repeat, the earlier the red flag, the better.
The bad: In my many years caring for high risk premies and diabetic babies (the very small and very large), when I was Director of our Follow Up Clinic, ASD was not being recognized/diagnosed.
The ugly: Ditto to the last ugly.

The most important points that we can glean from such literature are:

1. More recognition of the epidemic, and therefore more research that will lead to treatments – eventually, even if it’s just avoidance of the toxic offenders.

2. Earlier recognition of red flags that a child may be at-risk, with earlier diagnosis, instead of “he’s a boy – they talk late.” Hopefully that means earlier interventions.

3. More recognition of the medical nature of the condition.

 

Top Ten Autism Stories of 2012

Friday, December 28th, 2012

There were lots of reports about celebrities endorsing research, early brain scans, early blood tests for autism, various ‘genetic tests’ for autism, the flu during pregnancy influencing autism, environmental risks, some promising treatments, some treatments shown to be ineffective, associations with overweight and older moms, older dads, and the usual ups and downs of hopeful stories.

Here is my top ten list for the most important stories which have appeared in autism news this year:

10. The Medical Academy of Pediatric Special Needs provided the first scientific meetings in order to elevate and legitimize the speciality of treating children with developmental challenges.

9. More states mandated appropriate insurance coverage for autism, including Ohio, Alaska, Michigan, Alabama and Washington.

8. The new DSM V criteria were approved. There continues to be a great debate over whether more or less individuals will receive services.

7. iPads, etc. apps took a major place assisting ASD patients. Although some controversy exists, it appears that they are more helpful than not. It is best when the device is used to help communication, rather than as a babysitter or ‘stim’-machine, where the patient watches the same video (or piece of one) over and over.

6. The advocacy organization Autism Speaks ranked Paul Shattuck’s study as one of the top 10 research advancements this year. “Postsecondary Education and Employment Among Youth With an Autism Spectrum Disorder” was published in June in the journal Pediatrics. “Higher income and higher functional ability were associated with higher adjusted odds of participation in postsecondary employment and education.” Who am I to argue with the experts?

5. ABA gained even more standing as a key treatment for autism, and was recognized with a TIME magazine award. “Children diagnosed with autism spectrum disorders… showed changes in the way their brains process human faces and objects… It’s a hopeful sign that it’s possible to halt some of the brain changes linked to autism and possibly even reverse them.” In my experience, combining therapy with biomedical intervention is even more successful.

4. Dr. Martha Herbert published THE AUTISM REVOLUTION: Whole Body Strategies For Making Life All It Can Be. Dr. H is a great scientist and caring individual who has changed the paradigm of ASD, bringing reason and scientific thought about the disorder into the 21st century.

3. Are there really more ASD affected individuals or are we just recognizing it / diagnosing it more often? The CDC reported that the number of children with autism had increased to 1/88. The government weighed in on this one, and people started listening. Even the AAP admitted that autism is an epidemic.

2. Reports of an Asperger tendency in the Connecticut shooter. Thank goodness that the media actually acted responsibly, focusing on the tragedy of the victims. Sanjay Gupta did a great job of explaining the distinction between a medical disorder and psychiatric illness. Although that difference won’t be appreciated by everyone, clarity was restored.

1. And, the most important story of 2012… is the improvement and progress that your child experienced, however obvious or perceptible.

Let’s get to the causes and effective treatments and in 2013 make even greater strides in this modern epidemic.

Promising Autism News

Sunday, December 16th, 2012

Patient’s families, acquaintances and colleagues frequently supply autism stories and ask my opinion about them. Focusing on treatment, I have found the recent research, A randomized controlled trial of bumetanide in the treatment of autism in children, in Translational Psychiatryto be the most compelling. This information may represent a path to some of the most promising medical alternatives available to address the ‘stop-calling-it-autism‘ epidemic.

The authors first reported their protocol for ASD 2 years ago in an article entitled, The diuretic bumetanide decreases autistic behavior in five infants treated during 3 months with no side effects.

At this point, I hasten to further explain, lest the less-than-scientific and/or more-than-willing-to-take-advantage minds out there drum up similar sounding explanations and desperate parents jump at not-exactly-the-same-thing therapies. Proceed at your own pace (and feel free to question and/or correct me in comments), but here is the line of thinking that this theory proposes:

The brain functions as it does by sending and receiving chemical and electrical messages. For a variety of reasons (genetic<->environmental), an alteration occurs that affects the neuron’s ability to correctly move chloride in and out of the cell membrane. If that ion builds up inside the cell, the neurotransmitter GABA doesn’t work as it should, leading to altered inhibitory connections resulting in modified pathways in the brain of affected individuals, and many of the downstream behaviors that follow.

To test that approach, the investigators gave 5 patients (4 boys and 1 girl), ages 8-11 years, a powerful diuretic medicine (Bumex ®), that specifically lowers intracellular chloride, every day for 3 months. Five (well-accepted) rating scales were assessed, before and after treatment. For the most part, there was significant improvement in the patients’ ‘autism’. Not all areas showed improvement in all of the children, and it was observed that the younger ones did better.

Fast forward to the present research involving 60 patients (50 boys, 10 girls), ages 3-11 years, who were randomly chosen to either receive the same powerful diuretic medicine or placebo for 3 months, with autism scoring before and after that time, and again 1 month after treatment was discontinued. Three (well-accepted) rating scales were utilized. Statistically significant improvement was best documented when the ‘most severe’ cases were not included in the evaluation. The principle side effect was a mild, treatable, short-lived reduction in blood potassium. One set of results in the study revealed an increase in the autism scores 1 month after discontinuing the protocol, which begs the question, “Does the treatment last?”

Why I like the protocol
Intracellular chloride concentrations are higher in younger patients, helping to explain why the young are the most affected, and achieve greater success with this treatment. It might elucidate the observation that there are a number of disparate treatments which have appeared to improve various behaviors in autistic patients. The chelating, metal-removing protocols may similarly alter ions within cells. Although other diuretic agents work in a different manner, just moving water around cells may lead to similar, but less effective improvements. Treatments that enhance energy production might be helpful in moving chloride ions. GABA is directly related to muscle tone, which is an important sign in ASD patients. Oxytocin, which has been reported to improve some symptoms, also affects chloride concentration. This therapy targets inhibitory functioning, which appears to be a clinically significant problem (everything goes in, little comes out). If cellular chloride concentrations are affected by genetic and environmental differences, this could account for the various presentations of the disorder that we call autism.

Don’t try this at home
The treatment is only at an experimental stage. At this early juncture in our knowledge, we need to recognize that the child should have a normal electrocardiogram, serum electrolytes, and a healthy liver and kidneys. Side effects can include dehydration, orthostatic hypotension, hypersensitivity, cramps, low tone and activity, diarrhea, myalgia, arthralgia, nausea, or dizziness. The physician’s desk reference also lists headache, hyperuricemia, hypokalemia, hyponatremia, hyperglycemia, azotemia, and increased serum creatinine. Excessive urinating, loss of toilet training and bedwetting may increase. Electrolyte levels in the blood may need to be followed closely.

Proceed with caution
Finally, we should proceed with caution with this possibly promising new therapy. Bumetanide is a drug for treating severe congestive heart failure and is not presently approved for use in children. Therapies that we already use help many patients recover without as many risks, and the most affected and older patients seem to gain the least benefit.

Melatonin, Autism and Dr. Oz

Tuesday, December 4th, 2012

Mehmet Oz… plays a doctor on TV

I spend a great deal of time and energy convincing my patients to administer melatonin to their autistic children. I wish that parents would admit to more sleep problems, so the natural supplement would get used more often. It helps biorhythms, sleep, REM sleep, memory and mood. There are multiple studies in the literature to demonstrate safety and effectiveness. I have previously documented much of that information, and the children who take it generally improve.

Along comes our friend, Dr. Oz, who recently asked, “What is the most misused sleep aid that people use?” One answer from the audience, “Alcohol.” “That is a very good answer, but it’s not the one I’m looking for,” offered the good doctor. “It’s melatonin.” How does he know that? The only study I could find (pubmed, google scholar) that actually documented this answer:

dimenhydrinate (Dramamine)   21%
acetaminophen (Tylenol)           19%
diphenhydramine (Benadryl)     15%
alcohol                                            13%
herbal products                             11%

Another article listed Nyquil, Sominex, Nytol, Tylenol PM, and Compoz. Why didn’t Mehmet talk about these commonly used products? Maybe because some of them are his sponsors?

So, in the first place, Dr. Oz is just plain wrong. But, let’s see what other important information the professor proffered.

“It affects our sexuality! When are women most likely to desire sex? Summer.” A blog named 88 Strange-But-True Sex Facts omitted that one. Actually, most births occur in September, making winter the most prolific baby-making season. Oops, he’s wrong again.

“Darkness elevates melatonin, and that depresses your sex drive.” Well, even if that were true (couldn’t find the reference), what would that have to do with an autistic child? “One milligram is all you need.” Oz, you are no wizard. Lots of patients report improvements with 3, 5 or even 10 mg. doses. The one accurate thing that he did say was that it should be taken at the same time every day, even weekends.

“Let’s talk about what’s really happening inside the brain.” Then, Dr O and a female audience member wearing a lab coat, put on rubber gloves (looks VERY medical), and use an IV bag with fluorescent green liquid to “demonstrate” what happens. This is simply bad show-and-tell. Mehmet, just because an explanation “makes sense” doesn’t mean that there is a shred of scientific truth.

“Now we’re goin’ to talk about what is wrong with it… don’t want to do things like kill your libido…” (couldn’t find reference). The host then points out that “valerian root, ginseng and GABA are actually effective…” Dude, do you do any fact checking at all? Valerian root contains more than 14 compounds, including phenols and alkaloids that may cause problems in people taking other medications.  Ginseng - The most common side effect is trouble sleeping (insomnia). And, although GABA may be helpful for some, it is poorly documented and I have found that, as a supplement, it produces an excitatory effect in more than a few patients.

This is not medical information, it’s a television show. My advice to Dr. Oz: Stop delivering your opinions as gospel and go back to selling green coffee beans.

Pregnancy, the Flu, and Autism

Sunday, November 25th, 2012

This blog is about what we don’t know about pregnancy and the flu as it relates to the epidemic of ASD. The popular press recently re-reported one specific finding from an article in the medical journal Pediatrics, entitled Autism after Infection, Febrile Episodes, and Antibiotic Use During Pregnancy: An Exploratory Study. Does that title make it look like the flu during pregnancy increases the risk of autism in the offspring?

ABC News, ABC News, Reuters, The Huffington Post, and just about every other news agency loudly declared this small, incidental finding as if it were some solid medical fact. I doubt that most readers went farther than the title, and so now there is another confusing piece of information in the quagmire of ignorance that presently surrounds this enigmatic condition.

What article really said:
The Danish researchers looked at the records of ~100,000 8-14 year-olds who were in the national registry from 1996-2002, of which < 100 fit the ASD diagnosis. The key variables – ASD, Fever, and Antibiotic use – were reported by (very non-specific) telephone interviews during the pregnancy or shortly thereafter.

1. Mild common infections and fevers were not associated with autism
2. Evidence “suggested” that there was a 2X increase in ASD when there was a maternal influenza infection
3. Prolonged fever “caused” a 3X increase of ASD
4. The use of various antibiotics during pregnancy was potential risk factors for ASD (BTW, did any of the popular press report this one?)
5. The final conclusion was “the few positive findings are potential chance findings.” (I didn’t see this reported, either.)

What is known about this situation:
There is surprisingly little information about the flu and autism. An earlier study (1990) questioned viral-type illness during gestation as a possible cause of ASD. Also, there are models which seem to correlate brain abnormalities in the offspring of infected pregnant animals. The evidence is not strong in humans, however, so more studies are required.

Maternal fever from other causes has also been implicated as leading to ASD in children. There are even concerns about whether fever-reducing medications are a culprit in this epidemic.

The CDC continues to recommend flu shots during pregnancy. There is very little information about which part of the pregnancy is more important or risky (that should matter), or specifically searching for ASD as an outcome measure.

What should your family do about this latest information:
Well, some good consequences of this VERY WEAK science is that it does tie autism to inflammation, highlights the epidemic, and gives readers pause about whether the flu shots could be related to autism as well. As in most of the other studies which show increases in ASD tied to other common occurrences such as the use of oxytocin for delivery, increased maternal weight, increased paternal and maternal age, smoking, drinking alcohol, hot tubs, and women who attend sporting events (that’s just a joke), it doesn’t really explain anything.

In the blurb where the Pediatrics journal documents “What this study adds“, the editors should have written “Very Little“.

Where to Start when Autism is Diagnosed

Sunday, July 22nd, 2012

The first challenge that parents encounter when faced with a child who may not be developing in a typical fashion is getting a correct diagnosis. One doctor says “PDD-NOS,” another claims “Just a speech delay and some ADHD,” and yet another specialist suggests ”Let’s wait and see.” We are knee-deep into an autism epidemic, Ladies and Germs! If your child produces few words by 15 months (or displays a loss of words), has problems with eye contact or socialization, exhibits repetitive behaviors and has signs of core hypotonia (central weakness), you are dealing with the red flags that signal ASD.

The top Google searches for what to do about your suspicions include an inaccurate (at least, dated) list of signs and symptoms, an accurate reference article by the NIH, a parent guide that offers good advice, a fairly helpful (but less-than-practical) step-by-step guide, a webMD primer, and several columns expressing sympathy and empathy. What they all seem to have in common is the advice that parents need to learn everything they can in order to help their child. While that is an admirable and helpful pursuit, isn’t it more common, when a family member is struck with a complicated medical condition, that a trusted medical professional is pursued in order to assist in the best course of action? Doctors take note – you have been left out of the loop.

Where to start:

1. Forget about all of the other opinions and seek a physician who understands that “high risk” for autism means close observation and initiating therapies to address the developmental condition ASAP. If the child is simply a “late bloomer,” so what? Unfortunately, this is often the most difficult step. Generation Rescue’s website is a good start, and the emerging Medical Academy of Pediatric Special Needs is working on providing significant resources.

2. Parents desire to do everything they can, within reason, to help their child. In an abundance of caution, initiating intervention at the earliest possible age can be therapeutic at best and reassuring at least. ’Kick-starting’ speech and language and/or assisting developmental milestone acquisition with physical therapy are some great ways to get started. The family will become more comfortable about the diagnosis, understand ‘the journey’ better, and will frequently get to observe some quick improvement.

3. A popular reflex after searching the web is for parents to give the gluten-free/casein-free diet “a try.” Talk About Curing Autism offers a great deal of helpful information on this intervention. While this step may be important, there are some pitfalls that accompany this decision. If a child who is put on a casein-free (milk protein) diet is very sensitive to soy, the diet may not appear to be ‘working’, if there was a change to soy milk. Likewise, if the child is eating lots of peanut butter, for example, and is allergic to it, the diet may not appear to be helping. Finally, if the child has no problem with dairy or wheat, the diet won’t be helpful. Also, dietary intervention sometimes takes time (months) and patience before improvements can be seen in communication or behavior.

4. If you haven’t done step #1 yet, it belongs here: Find a competent autism practitioner who understands and has TREATED autism (not just diagnosed it). If you don’t do this step, you are getting into territory which can result in little improvement, significant regression, or a sense that you are not doing “everything that can be done.” An appropriate medical workup should include a blood count, liver, kidney and thyroid function, nutritional health, and gastrointestinal testing. Blood, urine and stool samples may be required in order to gather such valuable and pertinent information about the patient.

5. Make sure that the child’s overall medical condition is clear. Simply because the child appears healthy, don’t forget that they are relatively non-verbal, resistant to pain and have a narrow range of expressive behaviors. How do we really know if the child is healthy unless appropriate lab work has been collected and reviewed so that your child is in top shape? I had a patient last week who was mildly anemic. Now, it may not seem like much, but, why worry about HBOT (which is an expensive and resource-intensive intervention that brings oxygen to distant tissues), when all a patient may have needed was a bit more iron in their diet? Similarly, gut-related signs and symptoms are rampant in ASD, and an astute practitioner needs to ferret out and treat such maladies.

6. Follow a protocol. This is one of the most difficult parts of the initial treatment, because apparent regression can follow even the most uncomplicated interventions. For example, the negative behaviors that may result from bacterial or fungal ‘die-off’ when strong probiotics are initiated is frightening to families and requires coaching and counseling in order for the patient to achieve G-I balance. This step alone has discouraged too many parents from continuing biomedical intervention. As we increase cellular energy with supplementation, I frequently advise parents, “The side effect of giving a patient more energy is that the child will have more energy!” For aggressive or disruptive children, this is no small matter and there may need to be some changes or additional supplements to handle that alteration. In practically all areas of medicine, following protocols and altering them as things change is the hallmark of a successful course of action.

That’s it. Just a few steps that should be taken once the diagnosis is entertained to insure that, by today’s standards, everything that CAN be done is being done for your potentially-affected child.

Probiotic Use in Autism Spectrum Disorder

Sunday, July 15th, 2012

The following is the text that I sent to all of my patients at The Child Development Center of America this week:

“Although I have been taking a vacation (first one in years – like all of you!), I have been staying close to my staff and patients through emails and calls, when necessary. So I am fully aware of the iFlora recall, and I wanted to write to inform you how we should proceed.

First, we have been reversing autism in hundreds of patients over the past several years by using low-risk, highly effective protocols. Before I employed the combination of probiotics and oral glutathione, helping children with diet alone was a very slow and not-so-successful practice. 

As all of my patients are aware, the probiotics help establish normal gut flora and the glutathione increases cellular energy so that new connections can be made in the central nervous system. Almost all of you have seen improvements and even recovery in your children, and so my practice has continued to grow at a time when most conventional doctors are telling you that your children are doomed to years of ABA and other therapies, special education, few social improvements, with the only hope of improvement being a ‘chance’ recovery. 

In order to establish a consistent protocol, I use very few products. The supplements that we have in our office are sold at their cost plus the shipping and handling that is required. I am not a vitamin (or probiotic) salesman. I don’t make the products; I choose products that are simple, natural, safe and effective. 

Unfortunately, in this case, the manufacturer has reported that a possible salmonella (an organism that can cause diarrhea and other illnesses) contamination, due to the presence of Galactooligosaccharide (GOS). There have been no reported complications, and the warning is just that – a warning. In response, we have taken a look at what comes through our office, and we are happy to take back ALL bottles – opened or not – for a full refund. 

I am explaining all of this because I want my patients to continue to employ this system for autism recovery. Every food or product that we take ourselves or give to our children is subject to problems. The fact that I use so few products makes our job easier and SAFER for the patients because there aren’t so many items to evaluate. Just think, if all of the parents gave whatever probiotic they ‘discovered’ on the Internet, how difficult it would be to evaluate improvements, complications or recalls.

At this time, if your child is doing well and the lot # is not on the list, I would continue to use that product (if it came from our office). Whether the product is on the list or not, if you are concerned, then, sure, don’t give it. In the meantime, I am asking that you use another over-the-counter probiotic that you can buy at the drug store. In this manner, your children will continue their course to better health and recovery.

In short, WE ARE ON TOP OF THIS situation. Our patients are doing fine and you all have immediate access to ME through Karen and Daylin, who will contact me immediately if there is a problem. I will return to the States on Tuesday, July 17th. Next week, I will be happy to see any patients who are having a problem that you think is related to this recall, call you by phone, or answer your emails.”

What I have learned from this experience:

  1. Even the most benign-appearing supplements can potentially be dangerous. Notifying the pediatrician about any product that your child takes is an important step in assuring continued good health.
  2. Fortunately, we keep precise records about the supplements that we supply to our patients, so that we can identify any child who may be at risk in such a situation.
  3. Parents, likewise, need to keep a close eye on the bottles and packaging that accompanies any supplement that they obtain from other retailers, or from the Internet.
  4. My patients are the greatest… they are well-informed and up-to-date on much of the literature about ASD. Plus, in this case, it was one of our patients who notified us that they saw the news about this voluntary recall.
  5. My staff is fantastic. With emails (in English and in Spanish) and phone calls, we were able to quickly apprise patients of the situation and offer advise.
  6. When choosing any products that I recommend or supply, I will make sure that the company acts in a responsible and proactive manner to professionals and patients alike. Physicians need to be alerted about any potential problems as quickly and efficiently as possible, and given guidance about how to proceed.

ADHD and Autism

Sunday, July 8th, 2012

There are a plethora of physical problems that may accompany being an ASD patient. Sometimes referred to as ‘co-morbidities’, meaning “one or more disorders in addition to a primary one”, I prefer to think of the additional diagnoses as part of the autism spectrum itself. G-I problems, eczema, allergy, hyperactivity, apraxia, sensory disorders and behavioral conditions may each present as a single, separate pediatric medical condition. However, when such problems arise in ASD, I do not believe that they are separate at all. To effectively help ASD patients, diagnosis and treatment MUST include the whole picture. Or else, as many parents have experienced, their children go from one specialist to another, sometimes addressing the single problem, sometimes not even that. But NEVER – in my experience – addressing the autism itself.

ADHD encompasses a unique medical history and pathophysiology that is still the subject of much debate. Lectures and books offer various and sundry opinions, depending on the author’s background and point of view. Originally coined ‘hyperactivity’, the diagnosis has been expanded to include ‘impulsivity’ and ‘inattentiveness’ outside the range of normal for the child’s age.

In a similar manner, when the parent of an ASD patient describes their child’s (often disruptive) symptoms, depending on the practitioner, various theories and treatments are offered. Pediatricians tend to offer stimulant medications such as Ritalin or Adderall, neurologists may wish to focus on behavioral therapies, and psychiatrists sometimes suggest Abilify or Risperdal. There are several problems with such a variety of approaches.

Many times, I treat very young children who have been prescribed 2 or more stimulant and/or psychotropic medications. Often, I find that parents see only incremental or no improvement from complicated pharmacologic protocols. Worse, I encounter youngsters who suffer from many of the various medications’ side effects; such as tics, over- or under-eating, violent outbursts and sleep disturbances. Furthermore, what studies are available to assure parents that such medications are safe, especially long-term, and especially when they are prescribed in combination? “There are no studies to show…” is an oft-used phrase espoused by the conventional medical community to downplay the assistance offered by alternative and complementary practitioners. That doesn’t seem to apply when a doctor orders focalin, lithium and Prozac for a disorderly child. When a four, five, or six year-old child receives potent medications – what medications will be required by the age of nine, or twelve, or fifteen years and older?

Another approach is to insist that ABA is the only proven – and therefore necessary – therapy for the negative behaviors that are encountered in ASD patients. Such advice poses great difficulties for families who either 1) do not have private insurance or 2) their carrier does not cover this intervention. Sure, OT, PT, and/or S&L treatments have value, but they were never intended to address all of the behavioral problems that often accompany the ASD diagnosis.

Rather than merely declaring that the ADHD is “just another symptom of the autism”, patients who are ‘on the spectrum’ deserve an appropriate medical workup. Those suffering from impulsivity really need to have their gastrointestinal health evaluated. When kids “act like they have ants in their pants,” sometimes they actually have ants in their pants (that is, fungus, harmful bacteria, or parasites). When parents are concerned about constant activity, the medical workup needs to include thyroid and other metabolic studies (such as calcium, magnesium and vitamin D levels), in order to rule out treatable conditions. If the major problem is lack of focus, the professional should rule out sleep disturbances, dyslexia, problems with eyesight or an inappropriate educational setting.

Taking a detailed history and performing a thorough physical examination often provides clues as to why a child exhibits unusual behaviors. Then, even if ALL of the ADHD symptoms do not resolve with targeted interventions, there is enough abatement of extreme behaviors that, hopefully, less or even no medications are warranted in very young children. The traditional therapies that children receive also seem to work better when underlying medical problems are discovered and addressed.

Additionally, young children deserve to be evaluated by other professionals who might offer hearing therapy, RDI, neurofeedback, hippo therapy, and other valuable alternatives, which can be quite helpful. Over-the-counter remedies such as pycnogenol, tryptophan, magnesium or phosphatidylcholine can be useful by decreasing the anxiety that may exacerbate behaviors.

By taking such a holistic approach to the ASD patient with ADHD symptoms, the use of medication may be delayed, decreased, and even eliminated from the complicated course that families with autism must navigate.

Vaccine Awareness

Friday, June 8th, 2012

I can’t make this stuff up. One day after I pointed out that the CDC caused/found a ‘pseudo-epidemic‘, this report popped up on my Pediatric Radar Screen:

CDC vaccines for children might have been improperly stored

The Office of the Inspector General analyzed a sample of programs with the highest volume of vaccines ordered in 2010 and found that vaccines stored by 76% of providers were exposed to inappropriate temperatures for at least 5 cumulative hours over the 2 weeks. (No word on how many OVER that number of hours).

Medical News reporter Kristina Fiori story wrote, “Childhood vaccines administered via a free federal program may be inappropriately stored, which could affect their potency and efficacy, according to government inspectors… The American Academy of Pediatrics, which wasn’t involved in the study, said in a statement that it ‘encourages all practices to continue monitoring vaccine storage and handling… The AAP noted that despite these issues, the vaccines “were not found to be unsafe, and revaccination of children is not needed.”

So, the Academy, which wasn’t involved in the study, knows that the vaccines are safe. How do they know that?! The story went on to explain that although the potency could have been affected, the poor kids who got the stuff won’t have to get an extra shot. Hooray for those children. I wonder, though, if the shots were incorrectly stored and administered to a more affluent community, if the CDC would have made the same recommendations. I mean, they said the inoculation might not work. If the children need them so much, why wouldn’t they need the missing dose? Maybe it’s the $3.6 billion that is paid to those public programs.

Then, there is this statement: “The report also revealed that 13 providers stored expired vaccines together with unexpired ones, increasing the risk of handing out the wrong vaccine.” Are you kidding me? Has anyone gone out and looked at the outcome of those children who received the expired or incorrect products? We’re in the middle of an autism epidemic now, and this could be very important information. Does anyone think that the “studies that have shown vaccine safety” used old or incorrect product?

I won’t belabor this point any longer other than to officially complain that, as a pediatrician and as a citizen, I find this stuff appalling. As an advocate of sensible vaccination protocols, these kinds of revelations make it really difficult to convince the public that they are protected or safe.

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Brian D. Udell MD
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