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MAPS Spring 2013 Conference

Sunday, March 24th, 2013

This past weekend marked the third Medical Academy of Pediatric Special Needs Conference, which was held in Costa Mesa, CA. I have made sure to attend every one. This time, I had the added challenge of traveling on my damaged and recently repaired left foot. But, thanks to the help of my beautiful and patient wife, Jackie, I managed to fly, hop, crutch and wheel across the country.

What started out as the “Defeat Autism Now!”(DAN!) movement, then morphed into the Autism Research Institute (which continues to support autism research and provide needed information and support for families and individuals with autism spectrum disorders), has finally become a full-fledged medical society “for the treatment of children with autism spectrum disorders and chronic special needs.”

These courses provide the required CME credits to attain a MAPS fellowship certification. This educational experience prepares practitioners from all over the world to deliver state-of-the-art care. Qualified and experienced doctors and other professionals offer detailed scientific evidence and clinical information in order to further understanding and treatment. We review older therapies, some of which may still have value, the most common protocols that the participants presently utilize, and the emerging technologies that could lead to better treatment.

The advanced courses that I attended included the following discussions:
(Day 1): Hormones & Neurodevelopmental Disorders, led by Dr. Anju Usman. Covered subjects included the CNS, HBOT and treatments such as galantamine, phosphatidyl serene, propanolol, cortisol, oxytocin, secretin, the endocrine system, calcium, the adrenals, and hormones. We also learned about remedies from plants, foods and other cultures.
Evaluation & Treatment of Older Children was presented by Dr. Dan Rossignol, who gave one of his stellar presentations thoroughly reviewing the scientific literature that helps support our various treatment protocols. Case presentations with enthusiastic audience participation rounded out the afternoon.

(Day 2): Gastrointestinal & Nutrition. Dana Laake (Dietician-Nutritionist) reviewed Advanced Nutritional Assessment including labs, signs and symptoms, and special diets (all of them, I think). Dr. Elizabeth Mumper immersed us in G-I testing and discussed “clinical pearls” – what practitioners should look for to help patients with symptoms due to an unhealthy gut. Dr. Rossignol reviewed the pertinent literature and more clinical cases. Dr. Jeffrey Bradstreet taught us about testing and treatment options for autistic gastrointestinal disturbances. He concluded his talk with a thorough discourse about fecal transplants. No shit.

(Day 3): Cutting Edge & Novel Treatments. There were lots of experts, lots of treatment possibilities, and lots of opinions. Need I write more?

The MAPS conferences are no boondoggle. Classes go from 8-to-6 for three days, with formal testing at the end of those long sessions. The most important functions include networking with doctors from all over and discussing cases – just like your children – from the youngest, to the most challenging and complicated. This information adds immeasurably to our individual clinical experience.

What’s new is that your children – young and old, disruptive or spaced, apraxia or echolalic, unfocused and anxious, suffering from seizures or repeated infections – are being discussed, reviewed and considered as patients who deserve appropriate medical attention.

MAPS participation grew by a third this meeting, but that is still not enough personnel to address the burgeoning patient load. It’s a great feeling to know that each year we are getting closer to the causes and cures for this ever-increasing epidemic.

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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Conferences, Diets, Earliest Red Flags, HBOT for ASD, Patient experiences | No Comments »

Treating Autism – Real Medicine for a Real Medical Condition

Thursday, August 16th, 2012

Parents, you can’t have it both ways. Since ASD is truly a physical problem, it should be expected that real medicine is sometimes required in order to treat the situation. I am writing this in response to the numerous websites that claim not only improvement, but cures from products with the names such as ‘Focus’, ‘Calm’, ‘Attention’, ‘Healthy Gut’ or the like. If supplements and vitamins were the only key to curing autism, there wouldn’t be an epidemic.

When I began treating HIV infected patients in the last century, doctors weren’t sure 1) what AIDS was, 2) whether it was even a real disease, 3) what to do about it or 4) whether anything could be done at all. Patients trekked to Mexico for grape leaf therapy or sought alternative practitioners who offered vitamins and nutritional supplements. Sound familiar? Eventually, it was discovered that 1) HIV was an infection, 2) it was caused by a new virus, 3) treatment required anti-retroviral medications and 4) lives could be prolonged and complications prevented by aggressive treatment. Nowadays, alternative medical professionals can assist by improving general health and nutrition, pain, or additional complaints. It takes MEDICINE to really treat the primary condition.

All medicines involve risks and may produce unwanted symptoms. Occasionally, other drugs are required to treat those side effects. Even ‘simple’ aspirin for rheumatoid arthritis can lead to stomach ulcers and bleeding that might possibly require surgery. Cancer chemotherapy is expected to cause nausea requiring potent anti-emetics and nerve damage which could possibly be irreversible.

Liposomal oral glutathione has made a huge difference in my autism practice. It is inexpensive, comes in liquid form, can be given daily, and I can assess the effectiveness with a simple medical examination. By noting the improvement in muscle tone, I can assume that the patient’s energy production has become more efficient. Improvements in speech and language, eye contact, and cognition usually follow within weeks. It’s just a tiny protein – very natural – and, when given in small, increasing doses, it has predictable results. That is usually the easy part. However, there are two complications that require detailed explanations and counseling.

The side effect of increasing a patient’s energy is that the patient has more energy! It sounds simple, but stims can become much more apparent, more repetitive and are a cause for concern. The brain is waking up. I wish that I could control just the sleeping parts, but we haven’t come that far yet. New stims may emerge and old ones may return. Teenagers usually lose most of their self-stimulatory behaviors, anyway, so the acquisition of speech and language and improvements in autistic ‘fog’ are the fundamental goals of therapy in young children with ASD.

Even more concern comes from an apparent increase in ‘yeasty’ behaviors. My practice has become quite successful in treating symptoms such as rashes, diarrhea, constipation, sleep disturbances, regression and ‘silliness’ with very low dose fluconazole, which is an anti-fungal medication. Yeast overgrowth in the gut is a significant problem with autistic patients anyway, so possibly increasing that problem by administering oral glutathione causes parents a great deal of anguish. There is an abundance of ‘advice’ on the web and among parents about this effect.

Also, there is often a visible ‘die-off’ effect from the administration of this medication. Patients can exhibit the same ‘yeasty’ behaviors that initiated the therapy. I often use this reaction as a clinical clue that we are the right track. These symptoms typically abate with 1 to 2 weeks of treatment, and activated charcoal (to trap the poisons that dying organisms frequently excrete) helps to ameliorate that effect.

The medication does not ’cause’ liver damage; there are only rare reports of an associated liver toxicity. For this reason, I always palpate the patients’ abdomen and examine their eyes and skin for signs of jaundice. With prolonged use (greater than 3-6 months continuous), a comprehensive metabolic profile is ordered to insure that there is no enzyme elevation, which is a laboratory measure of liver integrity. With the thousands of doses that have been administered, there have been no such complications in our practice.

Another anti-fungal medication, oral nystatin, is often suggested as a superior alternative since it is minimally absorbed in the body. However, this choice is not without it’s own complications; including oral irritation and sensitization, diarrhea, nausea and vomiting, G-I upset and other gut disturbances. More importantly, in my clinical experience, this therapy simply does not work nearly as effectively as the fluconazole. Then, there are the ‘natural’ anti-fungals such as circumen (turmeric), citrus seed extract, berberine, uva ursi, oregano and the like. Not only do I find that these remedies are not successful in killing yeast, each one has it’s own potential complications. I have not found them to prevent fungal growth unless there is significant improvement in gut health.

Great strides have been made in the treatment of autism by utilizing this protocol of oral glutathione, combined with appropriate nutritional support and addressing G-I health (and, as always, providing traditional S&L, OT, PT and ABA). I believe that the addition of fluconazole to treat the complications of this low-cost, low-risk regimen is a small price to pay to help improve and recover so many affected individuals. And, I intend to continue my research to find safe, acceptable, effective alternatives.

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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Patient experiences | 5 Comments »

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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Posted in >ALL<, Alternative and Complementary Medicine for ASD, News-Maybe-Worthy, Patient experiences, Vaccines | 2 Comments »

Stem Cell Transplant for Autism 3

Monday, April 30th, 2012

The condition currently designated as ASD is epidemic. Reports about the alarming numbers abound, but it doesn’t seem to stick. “Is there really an increase in actual cases?” is the most common question that I get asked about my medical practice, even by professionals. From my perspective, media reports and journal articles can’t stop “exposing” the recent increase in measles – 3 times as many cases as last year. The rise in such a preventable infectious disease is regrettable and dangerous. However, it isn’t necessarily occurring in non-vaccinated children, it represents a couple hundred cases – not tens of thousands of patients – and no child has died (or suffered reported permanent damage). That contradiction leaves some families with an autistic child feeling lost and neglected by the conventional medical community and so they seek ‘miracle’ cures.

Stem cells have been successfully transplanted into corneas since 2003. In 2005, the FDA approved, and in 2006, “Neurosurgeons and physicians at Doernbecher Children’s Hospital, Oregon Health & Science University… performed the first transplant of purified human fetal neural stem cells into the brain of a study participant…” who suffered from a rare, inherited brain condition. The material came from dead human fetuses, in the hope that the new tissue would replace a missing enzyme in affected patients. In that study, performed on 6 patients, a billion stem cells were directly transplanted into the patients’ brains and steroids were administered for a year. Although the safety of the project was demonstrated, the ability of the new tissue to reverse that condition has not been documented. Research was discontinued and the company that makes the product hopes to perform the procedure on less-sick patients in the future.

Compare that carefully controlled study to the procedures that are offered at the various Stem Cell Transplant Centers that reside outside the US. Such protocols use cells of various origin (fat, blood) and various injection sites (lumbar puncture, veins) with various additional medications (antibiotics, steroids) on various patients (ages, sex, level of ASD).

Stem cell therapy is experimental and only in its earliest stages of proficiency. Specifically for ASD, which is an enigmatic, multifactorial, multi-system condition with a widely variable presentation and outcome, there is no research to document improvement and only anecdotal evidence that it is either helpful or safe. A conclusion – a scientific one – CANNOT be reached with this level of information. So, the family that chooses this endeavor is working on faith, the (limited) experience of others, and luck when it comes to “the best course of action.”

In addition to betting on “whether” the treatment might “work” (as always, don’t expect miracle cures, just expect miracles), the concerned parent must consider:

1. The cost of Stem Cells and implantation (>$20,000), as influenced by:

a. Which cells lines will be harvested and grown?

b. How the cells are delivered to the patient (artery, vein, spinal fluid)?

c. Other medications, laboratory testing, procedures, or anesthesia if necessary?

d. Complications, and there are never no complications.

d. Insurance – not covered!

e. Travel, including hotel stays.

2. Alternatives

a. Conventional - this should be the first therapy once an autism diagnosis is established or suspected. It includes a neurologic evaluation, a thorough medical evaluation, appropriate laboratory testing and follow-up. This should be followed by Occupational, Speech and Language, Physical and Behavioral Therapy as it applies to your child’s level of function.

b. Biomedical – this will assist many patients, especially the younger ones, toward recovery or significant improvement, especially when accompanied by conventional therapies.

c. HBOT – this therapy may be chosen by many parents as an earlier adjunct to the other biomedical techniques or when they see their child continuing to fail to meet social, academic and developmental milestones and demonstrate significant behavioral concerns.

d. Other – including RDI, Listening therapies, NAET, Sensory therapies, Neurofeedback, Hippotherapy, etc.

3) Opportunity costs. $20,000 = 3 months of 25 hours/week proven or combination therapies; 4 weeks of summer camp for 6 years; more than 1 year of assistance services (cleaning, caring, tutoring) in your home; 1 used, low pressure HBOT chamber on eBay; 75 high pressure, high oxygen HBOT ‘dives’ in a safe, reliable, clean Center; 4 MNRI™ conferences, many years of neurofeedback, lots of NAET, or ten years of care at The Child Development Center of America (that’s me), including labs, supplements and medications. That dollar figure also equals the low estimation of 1 year of extra costs for each child with Spectrum Disorder.

4) Risks, which will be covered at the conclusion of this series.

In the US, a cord blood bone marrow transplant to treat sickle cell disease costs approximately $250,000 to $500,000. Since stem cell transplantation for ASD is not being studied at any US institution, parents seek care in Mexico and other Central America countries, Europe, China, South Korea and the Ukraine (more to follow, I’m sure). Depending on the Center, costs vary, starting at over $15,000 (various sites, parent’s information) for treatment alone (not including travel). Patients are required to remain for between 1-2 weeks for follow-up.

That concludes some basic background information that ought to be considered in order to make an informed decision about this complicated topic. The next post will sum up all of this and offer some advice.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, HBOT for ASD, Patient experiences, Special Therapies | No Comments »

Stem Cell Transplant for Autism 2

Monday, April 23rd, 2012

Previously, I discussed the potential that stem cells can exhibit to differentiate into useful tissue. Families interested in curing, reversing or overcoming symptoms of their child’s autism with this technology ought to be knowledgeable about whether the process works for other medical conditions. Unarguably, even by those who perform the procedure for autism, the evidence is in it’s earliest stages.

Current Stem Cell transplantation that is medically utilized (United States):

Stem cells are useful when bone marrow requires rejuvenation after chemotherapy or radiation to wipe out cancer cells.

Pretty close to acceptance:

Heart attacks with cardiac damage

Ongoing investigations include:

Bladder repair / replacement

Retina repair

Cornea replacement

Strokes

Spinal cord repair. FDA approval for a study. A recent citation entitled, Human Umbilical Cord Blood Stem Cells Infusion in Spinal Cord Injury: Engraftment and Beneficial Influence on Behavior actually refers to rodent recipients.

Central Nervous System Conditions such as Multiple sclerosis or Parkinson’s Disease

Evidence (not necessarily experience) lacking:

Autism Spectrum

Cerebral palsy

Brain injury

Other Central Nervous System Conditions (e.g., Alzheimer’s)

The information will advance at a rapid rate, so my advice is to discuss the information as it pertains to your child, with a knowledgeable, independent and trusted practitioner.

1. Only consider human trials. We’re talking about a loved one here. A recent Cancer Research article was entitled, Human Neural Stem Cell Transplantation Ameliorates Radiation-Induced Cognitive Dysfunction. Although it looks very promising, the procedure was performed on rats. I can’t help thinking how easily someone with a vested interest in influencing a particular outcome might use that headline in order to justify or provide evidence of stem cells’ efficacy.

2. Surf wisely. Do your own research. Since much of that involves the ‘net, you are observing edited presentations of patients who are only like your child in their families’ desire to help heal their child. Are the images you watch of male or female children? What are their ages, and other co-morbid medical conditions? Did they present after vaccination (as always, an impossibility according to the AAP), like your kids, or were the children atypical since birth? Did they have GERD, or frequent antibiotic usage, or abnormal stooling since they came home from the hospital? What other treatments, such as antibiotics or steroids, were given with the transplant? Anecdotal evidence is very difficult to evaluate from youtube.com or parental testimonials. Editing is the whipped cream that can convince hopeful parents to take the plunge (and often, music is the cherry-on-top).

3. Learn when Stem Cell Treatment didn’t work. The first questions I ask when presented with any autism protocol are, “Who didn’t get better?”, and of course, “Who got worse?” These procedures are being performed in foreign countries. Even if, as is the usual contention, the criteria for certification or cleanliness are as stringent as they are in the US, the reporting agencies may not be. Centers should provide well documented outcomes and transparent (and reproducible) statistics. Follow up studies are scant. Since I know that many parents have grave concerns over administering oral melatonin to assist sleep, I can’t imagine how those families deal with this level of investigation.

I am always interested to learn from patients who have had the procedure performed on their children, some multiple times, and some who are looking to do it again. In the limited population that I have examined, the children appear to respond the same as with most biomedical treatments in that the more affected the child, the more treatment(s) is required. I have not yet noted more improvement than in those children who were treated with less complicated biomedical interventions.

Next up: Choosing a Stem Cell Center

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Posted in Alternative and Complementary Medicine for ASD, HBOT for ASD, Patient experiences, Special Therapies | No Comments »

Old Autism Tales

Sunday, February 12th, 2012

Recently, a very caring, observant and apparently well-read Mom who is “only interested in ‘natural’ therapies” for her moderate-to-severely affected 10 year-old son asked, “What about focalin?” Um, that’s not exactly a homeopathic remedy. Likewise, I spend a great deal of time counseling other parents about the safety of a particular therapy, as opposed to the terrible stories that they have encountered on the web. So, I have put together a list of my top autism tales… stories which appear and get quoted and re-quoted until they become issues for my practice, as far teaching families the truth, not made-up fairy tales.

10. When he/she gets hungry enough, the child will eat (a particular food, or enough food).  Neighbors, grandparents and other family members often offer this advice.  This is not true for autistic children. They will starve before they eat that crunchy (or mushy, or smelly, or whatever) stuff sitting on their plate. First, fix their autism, then we’ll get the picky diet worked out.

9. If you give melatonin, the brain won’t make any. There are lots of melatonin myths. I addressed them in a previous blog.

8. “I know that ‘x-y-z’ fact is true, because it was written by a doctor.” First, I have found that many of the stories that parents provide are not written by a doctor at all. If you are going to really consider a therapy for your child, especially an invasive one, you ought to get a sound scientific opinion. Just because doctors have been wrong about ASD, doesn’t mean everything that we say is incorrect. More importantly, the Internet is rife with misinformation that needs to be evaluated. In this blog, I try to be careful about my medical citations when I make an important point. As I have written in another blog, I may read all that I can about plumbing, but you don’t want me fixing your toilet.

7. “Sugary foods cause yeast in the gut.” I have a previous post about this one, also, but it bears repeating. Simple sugars are handled by insulin in the blood. Slightly more complex sugars like sucrose are broken down into simple sugars in the stomach with acid and water. Complex carbohydrates, undigested food and bad bacterial overgrowth are the problem, since the slow breakdown creates a substrate for fungal growth. Similarly, yeast in foods does not promote yeast, as long as the patient is not allergic to it and it gets digested. When you eat a mushroom, you won’t grow the fungus in your intestines.

6. “Children mainly seek the foods to which they are most allergic.” Although it often appears that way, it’s not necessarily true. Lots of children are quite allergic to stuff that they have never seen – like garlic or brewer’s yeast, for example. The point about autism is that the patient has become allergic to crazy things in the environment and so the body creates antibodies against foods to which they haven’t ever been exposed. The converse also appears to be true; as we improve the child’s general health, everything that they are sensitive to improves, including foods that they now consume in great quantities.

5. “The child is ‘stimming’ because of…” – anger, frustration, anxiety, fear, desire, happiness, etc. The reason that a patient ‘stims’ is because the hard wiring in their brain is not the same as in neuro-typical people. The affected child’s narrow range of expressive behaviors gets manifest as a repetitive movement that may or may not represent what they are truly feeling. I had one young man who ran screaming toward the TV when SpongeBob was on. “He’s afraid of SpongeBob,” explained the Mom. If he were really afraid of the cartoon character, why wasn’t he running away from the screen? One of our parents said that she thinks that her kid’s ‘stims’ occur “whenever he is bored. So I make him empty the dryer.” That sounds like a good idea.

4. “I don’t have to worry about my child escaping because… he’s never done it before… the doors are all secure… he would be afraid to leave… someone is always watching her.” Roughly half of children with ASD between the ages of 4 and 10 attempt to elope. This rate is nearly four times higher than for the children’s unaffected siblings. Of children with ASD who attempted to elope, ~1/2 succeeded, 2/3 had a close call with traffic and 1/3 had an issue with water safety.

3. “I know he can do that… (say “Daddy”, point to an object, behave properly) ’cause he does it when he wants to!” That’s what makes the child normal. As patients improve, they are able to perform tasks because they are getting better wiring and so the activity becomes second nature, instead of it being a major chore for the poor kid.

2. Homeopathic remedies won’t harm my child. There are plenty of chemicals in many non-FDA approved formulations. Just because you don’t need a prescription, it doesn’t mean that a) the stuff is safe or b) it will or won’t work. It would be preferable to do all of your care under the umbrella of a good, caring, competent doctor.

1. My doctor said that all of this biomedical is a bunch of hooey so that the DAN! doctors can make more money as they prey on helpless families. Parents of autistic children are left with a great deal of responsibility which requires research, treatment, therapy, trips to various specialists, loss of personal time, and tons of money. If the traditional medical community even did a half-decent job of listening and helping understand this epidemic, there wouldn’t be a cottage alternative medicine industry.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Diets, Patient experiences, Sleep | No Comments »

Autism and the Environment Part 3-The Present

Friday, November 25th, 2011

Coming into this century, there was still a debate about whether ASD was increasing or were doctors just adding more patients because of broader criteria or previously unrecognized symptoms? The CDC has pretty much answered that one. So have school teachers and administrators, Speech and Language therapists, and any other child care professionals over the age of 40. Autism Speaks has spent a great deal of resources trying to pin down the genetics that are ‘causing’ the disorder. Well, genetics ain’t causing it, the environment is; and family studies have, for the most part, succeeded in identifying susceptibility (for example, siblings, male sex, advancing parental age).

The most clarity about this epidemic (we can call it that now – especially since there is no official definition of  the word) has come from research performed by docs such as Drs. Robert Hendren, Jill James and Judy Van de Water. Then there are the practicing DAN! practitioners, especially Drs. Bradstreet and Rossignol who have been brave enough to publish their clinical and research experience. My hero (she has many other admirers) is Martha Herbert, MD, PhD. Her neurological knowledge and background has helped establish structural findings consistent in autism, especially white matter changes in the brain. Her practitioner (and practical) side has noted the improvements that patients have made, the sad state of the environment that plays a role, and the community of parents who are fighting to find guidance.

Dr. Herbert has challenged the conventional paradigm by declaring that ASD looks more like a whole body disorder that also affects the brain. That notion is consistent with the observation that there are many autisms, that the susceptible individuals could be the children born in this millennium especially, that there are other symptoms and signs that don’t involve the central nervous system, and that patients can recover function. Thanks, Martha.

What does this mean for your ASD affected child? It means that there is an approach and protocols that can be applied to specific patients in order to improve their condition. The air, food, water, shelter, clothing and medications that we are now using are all suspect and require closer scrutiny. The ASD patient should be carefully examined for G-I health, sleep patterns, nutritional intake, and of course, neurologic manifestations. A search needs to take place for ongoing inflammation. Even if a specific abnormality is not the cause of autism, oxidation sets up a vicious cycle leading to poor downstream function. All of a patient’s systems need to be checked in order to help correct a malfunctioning network. Attempts should then be made to re-invigorate poorly functioning body engines. And finally, therapies should be directed at teaching (or re-teaching) the previously damaged pathways.

Most practicing neurologists appear to be completely ignorant of the fact that ASD is not a fixed genetic disease. Conventional scientific literature is now documenting the disordered state of the nervous system, the paucity of genetic variation where there should be complexity, the presence of inflammation where there shouldn’t be, and the resulting clinical picture that we call autism. Hopefully, that will result in more specific testing and a greater ability to target therapies and reverse the processes that lead to altered function. I can’t wait.

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Treating Molluscum in Autism – One Mom’s Story

Monday, November 21st, 2011

Molluscum Contagiosum is a skin rash that looks like a lot of tiny warts and it is caused by a virus (aptly named the molluscum contagiosum virus). It is spread by skin to skin contact (yes, your child can get it at day care). The incubation period (how long it takes from the time of contact until the bumps appear) is 2- 7 weeks and the rash can last for up to 6 months or longer. Wikipedia and Medscape (among many others) have plenty of information on diagnosis and treatment. I am quite surprised that no literature exists that links this  skin condition to ASD, but it feels as there are lots of patients in our practice who do suffer from this (itching, discomfort, infections, bleeding, not to mention it  looks alarming and it’s contagious). Perhaps it is because ASD patients suffer from autoimmunity, and so viral infections are more likely. Certainly, affected individuals who also exhibit expressive language delay and experience various sensory issues represent a particular challenge for the autism doctor.

Treatments involve ‘burning’ the lesions with chemicals, extreme cold, various skin medications, herbal medications, lasers, surgery and oral preparations. Honestly, I have not found any one treatment to work better than another, and dermatologists seem no better than parents at knowing what to do. With that in mind, I have one Mom in our practice who has had a fair amount of experience in this arena, and her blog might be helpful to our wonderful readership:

Treating Molluscum Contagiosum: Our Mini Saga by RCB

First I tried zymaderm: http://molluscum-contagiosum.net. Good pix on this site, so it helps to identify if this is indeed what your child has. It is cheapest to purchase one vial from www.vitacost.com, which worked well for one daughter, and eliminated it. But, it just controlled it for the other child, and although it didn’t eliminate it, it appeared that it prevented spreading (as in, if I stopped using it, the virus continued to spread).

I used this protocol throughout: .5 -1 C vinegar and 1-2 tbsp bleach in bath water. This controlled the secondary bacterial related infection as well as not sharing towels, changing towels aft each use, changing underwear 2x per day and PJ bottoms everyday, washing all items in hot water, plus bleach (I tried to use whites), if possible.

I also tried the following:

Homeopathic thuja – traditional treatment for warts
Tried: tea tree oil (be careful you are not applying the strait concentrate, it will burn)
Tried: apple cider vinegar directly/overnight w/bandaids
Tried: homeopathic sulfer – a purging remedy
Tried: aloe gel
Tried: monostat-type cream, a yeast related therapy, as this virus can be associated with an overabundance of yeast
Tried: immunity boosting items, including probiotics and vitamins

Another suggestion, which seems to work for some types of this condition, and possibly adult molluscum (which is often STD related) is expressing the extremely contagious “white” center, (sorry to be graphic here…) like “popping” a pimple, and using alcohol or tea tree oil, but this didn’t work for my child’s lesions (the centers couldn’t be expressed).

The biggest nightmare? We  finally broke down and went to the dermatologist, who treated about 15 of the lesions with blister inducing treatments. Couldn’t send our child to school, she couldn’t even sit on the potty from all the painful blisters. Those lesions were treated, but the treatment has left scars, didn’t treat the root of the problem, and the virus didn’t go away. There are several other conventional suggestions we didn’t try because I was nervous about immuno-suppressive treatments, but we would have tried them if I hadn’t found the right remedy.

What FINALLY worked was… Sovereign Silver first aid gel! I had read that colloidial silver taken internally worked, but before I tried that, I got this gel (in desperation) from Whole foods. It works great for cuts, too. It contains homeopathic argentum metallicum (never heard of it in traditional homeopathy), in a base of silver-related items. I believe my success with this gel is as a result of my daughter’s individual constitution, and I just hit on the right remedy for her. Go figure.

Doctors tell a medically-related joke that, if you don’t treat MC, it will go away in about 6 weeks, but if you DO treat it, it will take about a month-and-a-half. This Mom’s journey might help a bunch of patients, it seems inexpensive and safe, and I would suggest giving it a try. As always, I am eager to hear other advice and I would be happy to post any patient experiences that will add to the knowledge.

TheAutismDoctor Addendum… I have found this EmedicineHealth webpage to provide an interesting review of possibly useful medicines that have been reported.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Patient experiences, Special Guests | 2 Comments »

Autism and the Environment Part 2-The Last Century

Monday, October 31st, 2011

Rimland - Bettelheim

Conditions with an incidence of 1 per 5,000-10,000 people don’t get much attention – by doctors, the populace or the press. That is, unless patients exhibit curious features (Elephant Man) or other really interesting characteristics (My Left Foot). You don’t see movies about people battling their asthma or lupus, but the savant in Rain Man fascinated us. So, at the time when stories of heroism and struggles with adversity were becoming popular, medical science was pretty much leaving the parents of children with ASD to their own devices. Even as Dr. Lovaas demonstrated that nearly 1/2 of affected children could show significant improvement, psychiatrists continued pontificating about poor parenting and neurologists declared that infantile autism was a fixed disorder of the brain which left sufferers with a life of mental retardation. In the latter half of the 20th century, electroshock therapy was a common treatment for self injury.

3.  A real break in the state of illiteracy was offered by Dr. Bernard Rimland as early as 1964. He had the temerity to publicly declare that the cause of his own child’s autism was due to other-than-poor child-rearing and offered evidence for the possibility of recovery from the condition. In the 1960′s, he became the founder of the Autism Society of America and the Autism Research Institute. He assigned a neuro-developmental cause to the disorder and helped give lots of parents hope for their affected children. That’s the good news. He documented a 6,000 percent increase in autism and implicated mercury and the measles virus vaccine as a possible cause. That’s the bad news. I’m pretty sure that the powerful drug companies and AAP at the time (or at present) didn’t (don’t) want to expose the medical profession as a culprit in a new medical condition. Even Dr. Leo Kanner acknowledged Dr. Rimland’s findings and came to change his original views that laid the blame on unaffectionate parenting.

4. In 1976, Dr. Mary Coleman, a noted neurologist and author of The Autistic Syndromes, documented “an unusual exposure of parents to chemicals in the preconception period” in a series of 78 autism patients. Twenty children were from families with chemical exposure; four were from families where both parents had such exposures — seven out of eight of those parents as chemists.

—…since the incidence of individuals exposed to chemicals in all related occupations in the United States is… 1.1. percent of the population … to find that 25 percent of any sample has had chemical exposure is quite startling… Attempts to identify a particular chemical toxin to which many parents were consistently exposed in our sample failed; the parents recalled exposure to a great multitude and variety of chemical agents with no one chemical or classification of chemicals singled out in the data.

5. In 1981, —Thomas Felicetti compared the occupations of 20 parents of autistic children, 20 parents of ‘retarded’ (sic) children and 20 parents of “normal” children who were friends and neighbors. —”The results did, in fact, suggest a chemical connection… Eight of the 37 known parents of the autistic children had sustained occupational exposure to chemicals prior to conception… Five were chemists and three worked in related fields… The exposed parents represent 21 percent of the autistic group. This compared to 2.7 percent of the retardation controls and 10 percent of the normal controls.”

“—The data, subjected to statistical analysis, demonstrated a chemical connection…The results of this study point in the direction of chemical exposure as an etiological factor in the birth of autistic children.”

In spite of mounting evidence of a possible environmental connection to infantile autism, Dr. Bruno Bettelheim, with an authoritative German accent and compelling storyline about Nazi concentration camps won over audiences and professionals with his insistence on the “Refrigerator Mother” theory. To demonstrate, try viewing the ‘doctor’ on Dick Cavett (something like Oprah) in 1979. His performance on the show is a clear example of style over substance – a good story versus a more complicated and scientific analysis – leading to incorrect popular theories and even influencing medical thought.

6. By the beginning of the 21st century, two somewhat differing theories about ASD were taking shape. Autism Speaks and others were helping to fund universities who wished to explore the genetics of this disorder, and other researchers – led by Dr. Martha Herbert – began to explore the disorder in a more holistic light.

 BTW, all of this will lead to how we help your children… to be continued…

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Chelation, Diets, Patient experiences, Vaccines | No Comments »

Vitamins for Autism and Hyperactivity ?

Sunday, September 11th, 2011

Mention vitamin treatments for developmental problems and you will get plenty of raised eyebrows and non-believing looks. Well, first, if you think that ASD or ADHD are basically  genetic diseases that can’t be treated, such an intervention will certainly make no sense. Second, since the traditional medical community has spent so little energy or resources understanding nutritional intervention for anyone, especially children, a paucity of information on this topic for neurologically affected children will certainly follow.

There are other websites which explain how to evaluate the ‘correct’ intake of each vitamin, especially conceding the differences between RDA, RDI, and DRI. Suffice it to say that, at present, labels display nutritional information which informs a consumer how much of some nutrient is in a particular product compared to how much of said nutrient it takes to stay well, based on a 2000 calorie diet. Of course, that assumes a healthy adult individual, so the values don’t really pertain to most of my practice, or your children.

I have personally cared for many children from all around the world who have lived in absolutely the most abject circumstances. Places where austere would be considered a luxury. Even in the most impoverished conditions, or in the most hopeless children’s home, it takes a great deal of deprivation to create changes affecting the central nervous system. It’s called brain-sparing, which refers to the body’s resilience and ability to feed the brain, at the very least. Such youngsters develop symptoms, to be sure, called “Failure To Thrive”. Nutritional intervention and therapies have specific effects on these patients. However, their maladies are NOT the modern manifestations of ASD and ADHD that have affected 1/5 of today’s children.

Here’s what I want parents to understand: Eleven (yeah, right, 11!) Nacho Cheesier Flavored  Tortilla Chips provide half-a-meal’s worth of calories, a meal’s worth of fat,  and contain over 25 ingredients. MSG is listed in the top half. The ‘food’ contains artificial colors “including red 30, blue 1, yellow 5″ plus “natural and artificial flavors…” What does that mean? Well, for one, it means more glutamate (non-sodium monosodium glutamate), since the food industry is allowed to label it that way. This nonessential amino acid (and ingredients like it) definitely affect the central nervous system and could play a key role in modern developmental problems.

Recently, a mother asked me to check on some ‘organic’ crackers that contained products consistent with her child’s allowable diet. There were also 5 ingredients listed which were “added to improve freshness”. Organic? Really? I observed another (ADHD) patient go absolutely bonkers in my office last week. The Mom, who is an intelligent, observant and involved parent, perceived that the problem was that his stimulant medication dose was wearing off. We then had a conversation about what the child ate for breakfast, and it became clear to her that – perhaps – the food may have had just as much to do with his behavioral changes as the medication. Or, at least, by optimizing his nutritional intake (and minimizing the poisons) there wouldn’t be a need to alter the stimulant drug. We don’t even think that the food that we give our children is affecting their behaviors. What the tobacco industry did to poison the population of the 20th century, the mega-conglomerates that feed us are doing now. Tactics such as having professionals tell us that a product is safe or others who use statistics to blind us from the problem, as in “What epidemic?”.

“Vitamins, Shmitavins” you say? Optimizing nutrients for all children will result in their best growth and development. Ideally, it should be tailored to provide the correct amount of nutrients for each kind of metabolism. We still need a lot of research to answer all of the questions. In the meantime, children who are diet restricted – for whatever reason – ought to have their intake evaluated in order to optimize the nutrition that they should be getting based on today’s information, considering their particular G-I health. That is where a DAN! doctor can assist the family in choosing the best supplements which pertain to their particular child. One size does not fit all, especially when high doses might cause harm or a child’s underlying condition may demand a special intervention.

Please read the labels – not just for “nutritional information” but ingredients, as well. If it contains the word “artificial”, it’s not food.

Let’s get cracking on the basic problem and I will continue to discuss nutritional particulars in later blogs.

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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Diets, Patient experiences | 2 Comments »

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Brian D. Udell MD
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