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Environmental Toxins and Autism

Sunday, June 16th, 2013

Advancements aside, the 21st century is experiencing the perfect storm, as far as infant development is concerned. Minor genetic variations that would have gone unnoticed in a less toxic world have resulted in vulnerability to certain presumably ‘safe’ foods, materials and the environment. Sometimes, if the stuff is harmful enough, it apparently might not even take impairment in identifiable detoxifying mechanisms.

The possible offending substances are ubiquitous, and the myriad of potential deadly combinations is infinite, making specific identification difficult. Although such discourse often turns to childhood vaccinations, that controversy only plays a part in the complicated matrix of possible poisons that lead to ASD.

Some may appear benign, such as the artificial sweetener aspartame. A more obvious culprit could be prozac in the water, or medications taken during pregnancy. Studies in California and Texas warn of pollution and childhood developmental problems. Plastic is in everything now. Then, there are the consequences of antibacterial (mis)management that have led to resistance and an abnormal gut-brain loop. Steroids are administered to make the animals more productive.There are new electrical fields, more powerful old ones, and increasing reliance on such energy sources. There are local energy fields in our houses and our pants and our ears. Remember that nuclear thing a couple of years ago? It was across the world, but the world is round.

This past week, the journal Pediatrics published research implicating levels of lead that were previously thought to be innocuous “…were associated with lower reading readiness at kindergarten entry. The high prevalence of elevated <LEAD> warrants additional investigation in other high-risk US populations.” Additional investigation?

Here is some of what the CDC recommended 8 months ago:

  • Experts now use a reference level of 5 micrograms per deciliter to identify children with blood lead levels that are much higher than most children’s levels…
  • … CDC is no longer using the term “level of concern” and is instead using the reference value to identify children who have been exposed to lead and who require case management.
  • … The new lower value means that more children will likely be identified as having lead exposure allowing parents, doctors, public health officials, and communities to take action earlier to reduce the child’s future exposure to lead.
  • What has not changed is the recommendation for when medical treatment is advised for children with high blood lead exposure levels. The new recommendation does not change the guidance that chelation therapy be considered when a child has a blood lead test result greater than or equal to 45 micrograms per deciliter.

There are so many disconnects between what we are told by government agencies, what we are fed by mega-food producers and big pharma, and what we experience as the ASD epidemic unfolds. Suspicions become heightened and less-than-scientific theories evolve and abound. The parents of children affected by developmental challenges continue to visit practitioners who appear clueless as regards their specific challenges. Often, doctors with broader points of view are derided and dismissed as kooky by those “in the know”.

Important information and treatment is available. Unanimity of opinions would be great, but there is a great deal more knowledge that needs to be achieved in order to make specific recommendations. “State-of-the-art” in ASD treatment has yet to be defined. Families are left discover the most useful course for their child suffering with an autism diagnosis. Parents can’t fix the outside environment, but they can do something about the internal one.

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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Autism Therapies, Chelation, Diets, Earliest Red Flags, Patient experiences, Reversing autism, Speech and Language, Vaccines | No Comments »

Reflections at the End of the School Year from the Mom of a child with ASD

Sunday, June 9th, 2013

Some of you may remember me from my first guest blog entry a few years ago. This was where we were on our journey back then: http://www.theautismdoctor.com/a-moms-journey-with-autism/

Here’s how incredibly far we’ve come…

This year, for the first time, the end of school and the completion of another grade does not scare me or send me into a frenzy of fear. In the past, the beginning of June sent me reeling about what skills Benji continued to lack and how unprepared he seemed for the next grade. Instead, this year, I reflect upon what a miraculous year it has been and look forward to what the next year will bring.

This year, Benji has learned that the world isn’t only black or white, but sometimes also gray.

  • He is now able to draw conclusions, especially when eaves dropping on my conversations.
  • He understands when he makes me angry, really angry and even tries to make it right. We argued one evening a few months ago before I left him home with my husband. All was forgiven when I woke him up the following morning for school and found, “I love my mommy and can’t wait to celebrate her birthday next week” written on the white board in his room.
  • He understood that his grandmother was dying although no one told him. He insisted on speaking at her funeral and spoke with the grace and eloquence of an adult, not a nine year old on the Autism Spectrum. He sensed his father’s sadness, as well as his grandfather’s loneliness and sought to help each one.

This year, Benji has gained the confidence to do things and go places without me. At first it was a restroom in a restaurant. Later, it was a birthday party. More recently, it was a roller coaster!

This year, Benji has established real friendships and finally feels comfortable enough in his own skin to go on ‘playdates’ without me. He knows exactly which children he feels comfortable with and has a knack for always finding the “calm, kind ones.”

This year, through hard work on all of our parts, more of the missing pieces were found and new connections were made in Benji’s brain. He participated in an autism research study that required him to attend both school and four hours of intensive therapy each day. That therapy was 65 miles from our house. Perhaps he has more resilience than certain experts predicted 4 or 5 years ago.

This year, after participating in the research study, Benji was evaluated by Dr. Udell. According to Dr. Udell, Benji has achieved the optimal outcome when one has ASD,  he is now considered in  ‘residual state.’  To us that means that he is no longer defined by his autism, but it is an important piece of the amazing kid he has become.

Is our work finished? Of course not… social issues are still a work in progress. Reading comprehension isn’t as strong as it could or should be. Overreactions are sometimes still a stumbling block. However, the issues that once seemed overwhelming and impossible to deal with are are all manageable now.

While watching Benji and his first real friend ride a roller coaster at Universal Studios a few weeks ago, I realized that Benji has learned to ride the roller coaster of life, and is now able to take the ups and downs as they come. Gone is the little boy who cried if I didn’t push his stroller in the same direction each and every time we went for a walk. Gone is the toddler who refused to drink from anything but the garden hose when we finally mustered the courage to throw his bottle in the garbage. Gone is the kid that didn’t sleep through the night for the first seven years of his life. That kid has morphed into one who is remarkably perceptive, compassionate and kind. Funny, several years ago (before meeting Dr. Udell), we were told that Benji lacked the capacity for empathy. We were told that we should take him home and love him rather than waste our money on unproven therapies. Thank goodness we opted to ignore that advice.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Patient experiences, Reversing autism, Special Guests | 1 Comment »

The A.L.A.R.M. Surveillance and Screening Algorithm For Autism

Sunday, June 2nd, 2013

A mainstay in pediatric training has been the evaluation and documentation of infants with a tool known as “The Denver Developmental”. Developed 40 years ago, the test was updated in 1992, and has been used as a yardstick for ‘normal’ maturation of babies and children up to the age of five.

The assumption of this examination is that earlier diagnosis of delayed (mostly physical) development could result in earlier diagnoses and treatments for maladies such as genetic problems, syndromes of multi-factorial origin, cerebral palsy and ‘slower than normal’ progress. Problems are then referred to a geneticist, neurologist or other pediatric subspecialty for evaluation and possible intervention(s).

With the epidemic proportions that ASD has been appearing in the world’s children, it’s time to move this tool down the list of screening tools, or re-revise, or even fashion a superior diagnostic examination that better addresses the present problem. To be sure, the AAP has offered the A.L.A.R.M. guidelines, which were “…developed to establish standard practices among physicians, to simplify the screening process, and to ensure that all children receive routine and appropriate screenings and timely interventions.”

Autism is prevalent
The incidence has increased dramatically since 2006, but the subtle deviations from typical are stressed.

Listen to parents
Do pediatricians really need the “L” word?

Act early
Rather than merely stating that doctors should recognize the ‘Red Flags’ as suggested, it might have been more useful to learn them. Maybe this should have been the “L” word.

Refer
Why can’t pediatricians diagnose, begin an appropriate ‘workup’ and suggest appropriate interventions?

Monitor
Follow up your patients. Good advice.

The conventional pediatric community has failed to stress that there ARE early interventions that may lower a young child’s risk of autism by recognizing early red flags and addressing them in a biomedical way. How many times have parents heard the pediatrician pontificate, “He’s a boy… late talker… a second child… she’s spoiled… you need to speak one language…”? I know these excuses, ’cause I used to employ them. And worse, “Let’s wait until three years, and we will know more.” What is the family waiting for, and what would be the harm of earlier therapies? Many moms and dads have just started S&L therapies on their own, only to see remarkable improvements in a short period of time. The pediatrician’s response? “See, I told you there would be speech!”

So, what are the present screening recommendations?
Developmental surveillance should be performed at all well-child visits from infancy through school age, and at any age thereafter if concerns are raised about social acceptance, learning, or behavior.

  1. Recommended developmental screening tools include the Ages and Stages Questionnaire, the BRIGANCE® Screens, the Child Development Inventories, and the Parents’ Evaluations of Developmental Status.
  2. Because of the lack of sensitivity and specificity, the Denver-II (DDST-II) and the Revised Denver Pre-Screening Developmental Questionnaire (R-DPDQ) are not recommended for appropriate primary-care developmental surveillance.
  3. Further developmental evaluation is required whenever a child fails to meet any of the following milestones: babbling by 12 months; gesturing (e.g., pointing, waving bye-bye) by 12 months; single words by 16 months; two-word spontaneous (not just echolalic) phrases by 24 months; loss of any language or social skills at any age.
  4. Siblings of children with autism should be monitored carefully for acquisition of social, communication, and play skills, and the occurrence of maladaptive behaviors. Screening should be performed not only for autism-related symptoms but also for language delays, learning difficulties, social problems, and anxiety or depressive symptoms.
  5. For all children failing routine developmental surveillance procedures, screening specifically for autism should be performed using one of the validated instruments.
  6. Laboratory investigations, including audiologic assessment and lead screening, are recommended for any child with developmental delay and/or autism. Early referral for a formal audiologic assessment … Lead screening should be performed in any child with developmental delay and pica…

And the present clinical practice recommendations:

  1. Genetic testing in children with autism, specifically high-resolution chromosome studies (karyotype) and DNA analysis for Fragile X, should be performed in the presence of intellectual disability (or if intellectual disability cannot be excluded), if there is a family history of Fragile X or undiagnosed intellectual disability, or if dysmorphic features are present. However, there is little likelihood of positive karyotype or Fragile X testing in the presence of high-functioning autism.
    How would you know if 2 year-old has ‘high-functioning’ autism?
  2. Selective metabolic testing should be initiated by the presence of suggestive clinical and physical findings such as the following: evidence of lethargy, cyclic vomiting, or early seizures; presence of dysmorphic or coarse features; evidence of intellectual disability cannot be ruled out; or if occurrence or adequacy of newborn screening is questionable.
    How about adding gastro-intestinal disturbances?
  3. There is inadequate evidence to recommend an electroencephalogram study in all individuals with autism. Indications for an adequate sleep-deprived electroencephalogram with appropriate sampling of slow wave sleep include clinical seizures or suspicion of subclinical seizures and a history of regression (clinically significant loss of social and communicative function) at any age, but especially in toddlers and preschoolers.
    Get that? EEG not necessary.
  4. Recording of event-related potentials and magnetoencephalography are research tools at the present time, without evidence of routine clinical utility.
    Drs. Rossignol and Frye might disagree. It certainly could be of more value than a plain EEG.
  5. There is no clinical evidence to support the role of routine clinical neuroimaging in the diagnostic evaluation of autism, even in the presence of megalencephaly.
    Get that? MRI not necessary.
  6. There is inadequate supporting evidence for hair analysis, celiac antibodies, allergy testing (particularly food allergies for gluten, casein, Candida, and other molds), immunologic or neurochemical abnormalities, micronutrients such as vitamin levels, intestinal permeability studies, stool analysis, urinary peptides, mitochondrial disorders (including lactate and pyruvate), thyroid function tests, or erythrocyte glutathione peroxidase studies.
    Get that? Alternative treatments not necessary. Well, maybe they would be if it were your child.

The AAP has sounded the A.L.A.R.M. Now the doctors need to listen.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Earliest Red Flags, Reversing autism, Speech and Language | No Comments »

GERD and Autism

Sunday, May 26th, 2013

Gastro-esophageal reflux (GERD) is a disorder in which the stomach contents slosh back up into the esophagus (tube that goes from the mouth down to the stomach).

When GERD happens in newborns and infants, it may be diagnosed as ‘colic’, it may be ‘silent’, or there may be problems that persist beyond the first few months. There are often a great deal of ‘spit-ups’ that occur, especially after a child is placed in the recommended face-up position. A refluxing neuro-typical child may cough or otherwise note their distress by wiggling or turning. When children start to get thicker formulas or solid foods, their symptoms can diminish and eventually disappear.

When GERD affects a person who has decreased sensitivity to pain, it may present clinically as a behavioral disorder. Affected babies may not smile or pay attention. When the situation occurs in children who are extra-sensitive, the affected baby may cry ‘for no reason’ or scream in excruciating pain. Sleep may be affected. Socialization can become difficult. When liquid refluxes up into the ear canal, infection may ensue. Antibiotics are then certain to follow.

Dr. Arthur Krigsman, a respected gastroenterologist has noted the frequent association between gastric and other symptoms with a condition called eosinophilic esophagitis, indicating inflammation in the area of question. Dr. Krigsman has written, “Reflux is a symptom, not a primary diagnosis—it occurs because something is not going right. If the intestines are unable to move food effectively from the mouth down to the anus, then it comes up as reflux. <<Low>>  motility in the gastrointestinal tract in ASD children is so common that almost all of those I have scoped have some degree of clinical (but not necessarily histologic) reflux.”

A common treatment for this set of signs and symptoms is the prescription medicine Prevacid. This drug is in the category known as proton pump inhibitors. The idea is, if you make less acid, that won’t cause the pain associated with reflux. That implies that it’s the acid that causes the symptoms. Research notwithstanding; heartburn relief is certainly a clinical reality, given the number of GERD remedies that are sold each year. However, PPIs are supposed to address too much stomach acid, which is rarely if ever the formally diagnosed in adults, let alone children.

For pediatric relief, however, a respected multi-center group recently concluded, “This study detected no difference in efficacy between lansoprazole and placebo for symptoms attributed to GERD in infants age 1 to 12 months… lower respiratory tract infections, occurred more frequently with lansoprazole than with placebo.” Get that? Lower respiratory infections occurred MORE frequently with this PPI. Antibiotics are certain to follow, again.

What are we supposed to do about it? A 21st Century workup. The first step is to determine an accurate diagnosis before prescribing non-approved and potentially dangerous medicines. Testing whether antacids are effective is a good start. The diagnosis may be documented with a scope, an x-ray or a probe that checks pH. Then, there is testing for food allergy, which is real, at least in children. Avoidance of highly allergenic substances results in healthier bodies with improved core tone, normal gut flora and fewer aggressive behaviors. For premature infants, we neonatologists often prescribed an old standby called bethanecol, which proved safe and effective. It’s a medicine that promotes increased tone for the muscles leading into the stomach, thus resulting in symptomatic improvement in a much more physiological manner – not by altering the acidity of the contents, but by preventing the occurrence of reflux. Also, probiotics appear to promote a healthier cycle and less G-I problems, from decreased reflux to improved nutrient absorption to relief of diarrhea or constipation.

Who said that it is OK to mess with the acid-base balance of the stomach, and the bacteria that live in our bodies and there won’t be increased and unknown risks to the patient? The bowel-brain connection has been established as an important entity in health for many years. A disruption of that system has created one of the groups of signs and symptoms that we presently call ASD.

There are many new toxins in the 21st Century, and PPIs for infant colic/reflux is one of those new protocols that has caught on without much documentation of long term safety, including checking for associations with ASD. Perhaps it is the GERD, or the colic of unknown cause, or PPIs, or the infant who has low core tone (including the muscles of the diaphragm and esophagus), but it seems that during an epidemic as ubiquitous and devastating as autism, this association is key to our understanding and ability to help.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Autism Therapies, Diets, Patient experiences, Sleep, Speech and Language | 1 Comment »

Food for Thought about Autism

Friday, May 17th, 2013

The goal of biomedical treatment is to optimize health in order to minimize inflammation, prevent disruptive behaviors, enable normal development, and allow the traditional therapies to take hold. This is the story of one of our parents who became a believer after getting rid of the offending nutritional fare.

After our son was diagnosed with autism spectrum disorder, I spent about two weeks in a very dark place. As soon as I stopped feeling sorry for myself, I knew I needed to try to be as strong as I could so that I could help our son. About six weeks after our first visit with Dr. Udell, we received all of the test results for food sensitivities. My son had been a great eater (this is a story for another time) until we found out he was highly allergic to peanuts; then, after experiencing anaphylaxis at 17 months due to eggs, food became a MUCH bigger problem. He had pneumonia for the first time in February 2012, which was frightening. We were told that he suffered from Reactive Airways Disease and that he would be sick for quite a few years. I had such a difficult time just accepting this news, so I researched solutions. He was on a regimen of Singular, Xoponex, and Pulmicort in the nebulizer and, if it got severe enough, oral steroids. Our son was always ill. Sick so much that people did not believe us. This year, my son was on steroids (either oral or inhaled) from October until March, but he was still not better. One of the fill-in pediatricians proclaimed, “He is on too much medicine to be this sick!”

This past March, after our follow-up appointment for biomedical treatment, we started our son on a high dose probiotic and Diflucan. At that visit, we received a long list of items for our son not to eat. My husband and I decided to dive head first into this and get rid of his beloved bananas and Lorna Doones (cookies). I was skeptical about the food changes because any time you hear the word autism, GF /CF diets are soon to follow. I am not sure if the food, the probiotic or the Diflucan changed our son but something did and he has not had any more respiratory issues. I am not a Dr. but as we noticed our son changing with all of the new protocols, he became a healthy 3 and a half year old little boy. No steroids for 7 weeks and counting.

Back to my son’s food issues. He never got back to eating fish and chicken, as he did in his infancy. He eats a lot of pouches from Earth’s Best or Plum Organics. He drinks a smoothie in the morning but, since we had to change to rice milk, we provide Silk protein drink and soy yogurt. I went to my local health food stores (the big box ones are so expensive) and found Annie’s Gluten Free Bunnies, Crunch-master cinnamon sugar crackers, Enjoy Life sugar cookies and Home Free little sugar cookies. We had to bribe him with toys to get him to try new foods, but it worked. Now, we have a few items to take when we go out, so he can feel like a normal kid.

Quick tips for giant food changes. Talk to your local health food stores and see if they can order selected products for in-store purchase. Often, they will offer a discount if you order a case or more. Check out Amazonmom.com (it’s free) where you could get discounts on baby and kids items, make sure to sign up for their ‘subscriptions and save’ programs. The pouches from Plum Organics are $1.79 at Babies R Us and they are shipped to me for $12.46 per dozen, a savings of $9.02. The Enjoy Life cookies list for $4.69 a box, but through Amazon they are $2.84. Not everything is cheaper at Amazon, but with the expense of a GF/CF/egg/nut etc. diet, every little bit helps.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Autism Therapies, Diets, Earliest Red Flags, Patient experiences, Special Guests, Speech and Language | No Comments »

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.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Autism Therapies, News-Maybe-Worthy, Patient experiences, Reversing autism, Special Therapies | No Comments »

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.

 

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Posted in >ALL<, Autism Therapies, Conferences, Earliest Red Flags, News-Maybe-Worthy, Reversing autism, Special Therapies, Speech and Language, Vaccines | No Comments »

Cranial, Sacral, Vagal and other Pathway Therapies for Autism

Sunday, April 28th, 2013

In the previous century, I had occasion to train in Philadelphia, where I became acquainted with the treatments provided at The Institutes for the Achievement of Human Potential. The disorder that attracted my interest was cerebral palsy and the neurological outcomes of various protocols were the pursuit of my personal investigation.

At the time, I believed whatever the Hippocratic elders declared to be true, so I sided with the AAP on the issue of efficacy. “On the basis of past and current analyses, studies, and reports, the AAP concludes that patterning treatment continues to offer no special merit, that the claims of its advocates remain unproved, and that the demands and expectations placed on families are so great that in some cases their financial resources may be depleted substantially and parental and sibling relationships could be stressed.” When I interviewed parents who sought those services, I simply thought of them as unfortunate families who were desperate, but ignorant of medical facts. I no longer think that confused families who get relief wherever they find it are just misguided. Their experiences add to my knowledge, and patients deserve my appropriate support.

In one fashion or another, the aim of such therapies is to re-invigorate dormant, damaged, or otherwise under-functioning or unused neural pathways, so that they will/can wake up, grow, mature, lay down proper connections and so function properly. This usually involves physical input of one sort or another; from massage, to acupuncture, to electrical stimulation, to sound activation, to visual excitation. Similarly, there seems to be a consistent requirement for practice (as in, more parental work & time and/or practitioner visits) in order to solidify progress.

One of my earliest severely affected ASD patients was a great kid who suffered speech apraxia and experienced the best relief from CranioSacral therapy. “How can I believe in that stuff?” Well, in one case there was a parent and child who claimed improvement. I recently cared for a 6 year-old who was prescribed prozac for obsessive compulsive stims. Which therapy is safer? Which is harmful? Effective? (eyes of the beholders). Which treatment advertises to actually address the core problem, and isn’t just a weak Band-Aid, at best?

I am no expert on the many treatments that excite the spine, spinal cord, associated nerves and ultimately the whole CNS. Certainly, some of the various “alternative” treatment centers may take exception to comparisons because of ‘this or that’ technicality. I don’t have an issue with their services, however. Parents hoping to help their developmentally challenged offspring will continue to seek such treatments. Doctors who scoff at such thinking can’t really understand their dilemma. Pediatricians, neurologists and psychiatrists wishing to lead the medical team that helps to recover function in children should consider all reasonable treatment protocols. Programs can be checked for safety, documentation of efficacy (if possible), be performed by practitioners in good standing with their community, who keep records of their services, have referrals from other patients and don’t experience outrageous complaints.

To the extent that all traditional therapies, biomedical evaluations and treatments, and other alternative protocols are safe and do not deplete the family’s resources, they can play a part in the puzzle that assists problem children. As in all other medical epidemics, as the scientific community becomes more precise in diagnosis and effective protocols, the ones that work will take hold and others may be retired or find their way address other enigmatic conditions.

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The Autism Doctor’s New Office

Sunday, April 21st, 2013

This is it, Dr. Udell’s primary office. I want to treat patients for years and years to come, but I don’t want to move any more (got a many year lease).  I originally envisioned The Child Development Center of America as a central facility for parents to get answers and therapies. As we have grown, the practice has assumed situations with increasing responsibilities. There are so many disciplines required to achieve an optimal outcome that it seemed that parents would seek such a service and providers would wish to participate.

The reality of the autism spectrum epidemic is that there are so many moving parts required that the various goods and services really can’t exist in any one place. My colleagues around the country seem to be experiencing a similar situation. Some ‘DAN!’ practices combine general pediatric services (adult treatment, even), usually requiring the support of health insurance personnel. Universities and their associated clinics such as The MIND Institute generate a great deal of research. Other practitioners take on therapies requiring added responsibilities such as OSHA or other regulatory agency’s oversight and approval. Some practitioners teach and leave well-trained staff to experience more participation in patient care.

ABA, OT, PT, S&L and the myriad of therapies that aid improved outcomes tend to be local, even in people’s houses, and take time. Alternative protocols take time and resources. For most families, there is also homework to get through and school projects, etc. At this time, the multidisciplinary village that attends to developmentally challenged children is the iPhone scheduling system of diligent moms and dads; even if they are separated, as are the great majority of ASD families.

The Child Development Center has settled into a really comfortable, brand new office in Davie, FL (think Bergeron Rodeo), with friendly neighbors and easy highway access. The same fish tank, toys and toy box. Even more cameras and flat screens. There’s an even better railroad station playroom for the kids and a new computer station. (Parents, please tell us when you don’t want the children exposed to Wii or TV, and we will hide those amenities). In such a comfortable setting, we get to observe the patients enjoy the experience and be as much like their normal selves as possible.

The medical conditions falling under the autism diagnosis now affect more than 2% of infants, children, adolescents and adults. The disorder is nearly a complete mystery. Is it genetic, or the environment? Or both? Is it really even an epidemic? Presently, there are so few doctors who choose to study in this specialty. The pediatricians, neurologists, psychiatrists, allergists, gastroenterologists, dermatologists, immunologists, geneticists, and epidemiologists agree on very little. Parents turn to treatments with less scientific testing or validity and unknown risks.

My purpose has become more simple. Autism spectrum disorder is a combination of signs and symptoms that, if recognized early and properly treated by appropriately trained medical personnel, is amenable to effective treatments that are available today. Physicians can be an important part of the team that helps recover form and function. The Child Development Center hopes to serve as a model to help other doctors assume ASD care.

In a previous story, I took great pride writing about my beautiful office and friendly staff. That has not changed. Only the location – we’re just down the street.

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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Patient experiences, Reversing autism, Special Therapies, Speech and Language | No Comments »

Understanding Genetic Results for ASD and ADHD

Sunday, April 14th, 2013

In addition to diagnosing health and disease in infants and children, pediatricians are also teachers. We are frequently asked to give advice about child rearing, schools & classes, strengths and weaknesses. It’s even more complicated with developmentally challenged patients. But, deciphering the multisyllabic and acronym-filled jargon that permeates the medical literature required for special kids makes the task even more demanding. Heck, we even call Autism ‘ASD’ (and, we shouldn’t even be calling it autism).

Some genetic problems are quite obvious and seem clearer to understand, such as Down’s Syndrome – Trisomy 21 – involving a whole extra chromosome. Others are quite complicated, such as Prader-Willi/Angelman syndrome, in which the type of autism depends on the patient’s sex and the aberration on chromosome number 16. Many of the problems are in-between. Geneticists and neurologists generally recommend testing for Fragile X, Rett’s disease and genetic microarray in their abbreviated and misguided autism ‘workup’. Parents who have gotten their child’s chromosomes tested have heard that, “The tests were normal.” However, that lab may hold the information to the key ingredients involved in their child’s autism.

The Basics
Humans have 46 chromosomes inside the nucleus of each cell. There are 22 pairs (numbered 1 through 22) plus the sex chromosomes. X+X = female. X+Y = male. Each chromosome has a “short” arm, designated “p” and a “long” arm “q”. Genes located on the chromosomes code for proteins that perform various functions throughout the body; including building, breaking down, cleaning up, defense, and the interplay of feedback mechanisms that attempt to assure homeostasis.

Fragile X
According to the CDC, Fragile X syndrome (FXS) is the most common known cause of inherited intellectual disability. Since the abnormality exists on the X chromosome, males are more likely to be affected than females, who have another X chromosome that appears to lessen the severity and emergence of symptoms.
The abnormality is said to be caused by a mutation in the FMR1 gene, which has to do with forming CNS connections. A piece of the X chromosome has too many segments of C-G-G (base pairs, which make up genes and are located on the chromosomes). The abnormally expanded CGG segment prevents the gene from producing the correct protein and disrupts nervous system functions and leads to the signs and symptoms of fragile X syndrome.
Repeats of greater than 200 are considered positive for the syndrome. However, at The Child Development Center, we have been keeping statistics that indicate that, perhaps, repeats of even 20 or more can be associated with autism. We hope to publish our experience about this finding. This is why we are interested in the actual “Fragile X” results, rather than the parents’ explanation that, “The doctor said it was normal.”

Rett’s Syndrome
The MECP2 gene that causes the abnormality is located on the X chromosome, so boys often don’t survive. The protein that the gene produces is important in brain development, both in primary production and as it affects other genes and their protein products.
The proportion of cells in the CNS that are affected by the genetic defect appears to determine the various presentations and severity of symptoms.
Although Rett syndrome is a genetic disorder, most cases are random mutations without apparent cause.  And, in some families of individuals affected by Rett syndrome, there are other female family members known as “asymptomatic female carriers.”

Copy Number Variations
This is the information that gets reported from the ‘microarray’ test. A thorough explanation can be found here. More than 15% of patients presenting to developmental pediatricians have some type of this genetic variation.
The results are reported as duplications, deletions and translocations of very small segments of a specific chromosome. Recently, a patient who was told that the child’s chromosomes were “normal” had this report, “Two Separate Copy Number Variations Identified: Both of Unclear Clinical Significance (Interpret with caution). No known deletions/duplications currently associated with human diseases were detected… An approximately 416 kb gain (duplication) on chromosome 3 at 3q.13.13 was detected… In addition, an approximately 189 kg loss (deletion) at band 10q21.3 was detected…”
The autistic child had a duplication of one segment of the long arm of chromosome #13, and a deletion of a portion of chromosome #10. Both of those pieces of genetic material have been identified with genes that code for known proteins but the parent was totally unaware of the significance. The family was referred for genetic testing and counseling.

These are the types of genetic variations that may have been totally insignificant in the previous century. However, if the parent had been born in this century, or the child in the previous one, they might be the affected individuals. Copy number variation is perhaps the most compelling evidence of susceptibility to autism.

All of the research and experience detailing genetic alterations only represents a small number of the increase in number of patients affected by ASD. Neuro-typical parents may carry the same genetic variation as their affected child. Born in this toxic century, the fragile fetus, infant and child represent the “canaries in the coal mine,” who cannot detoxify properly. Humans are not fruit flies and we did not spontaneously mutate in this century. Even with genetic variation, the environment remains the primary culprit.

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Brian D. Udell MD
2751 Executive Park Drive
Suite 201
Weston, FL 33331
Office phone – 954-873-8413
Fax – 954-384-2287

Email bdumd@childdev.org
Website http://www.childdev.org

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