Posts Tagged ‘ASD advise’

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

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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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Autism Therapies, Reversing autism | No Comments »

More M-B12 FAQs

Sunday, March 31st, 2013
mb12

30º angle

Search Engine Statistics @ TheAutismDoctor.com indicate that many readers come to this venue looking for ‘B12 shot’ information. Since you can read that first round of explanations here, I will use this post to add to our B12 frequently asked questions knowledge base.

Can you have too much? I had the opportunity to hear Dr. Neubrander‘s opinion about this at the recent MAPS conference. He compared responders with higher-than-expected levels of vitamin B12 to insulin resistance in diabetes mellitus; where pharmacologic dose, rather than physiologic dosages of sugar-lowering hormone may be required for optimal effects. Interestingly, drugs such as Prevacid and Tagamet, which are frequently prescribed for many ASD patients with GERD, can interfere with B12 absorption. Furthermore, when there are problems such as stomach and small intestine disorders, B12 levels may be reduced, reducing cognitive function.

According to the National Institutes of Health Office of Dietary Supplements ”no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals”. In clinical trials, vitamin B12 supplementation did not cause any serious adverse events when administered in very high doses for 3 to 5 years. When there is kidney failure, liver disease and some blood diseases, B12 levels can be high, but it’s not the other way around.

High cobalt levels (as in methylcobalamin, as in MB-12) have also been reported as possibly leading to neurologic symptoms. Some artificial implants in adults have been implicated. In one study examining metal levels, cobalt was not implicated as a factor in autism, however. Other reports did not show significantly elevated blood or hair levels in ASD. And, recent papers even reported a slight decrease in cobalt in ASD patients. Possibly, the bottom line is to measure blood cobalt in patients receiving ‘shots’ who are not responding, but getting plenty of MB-12.

What is the best way to administer MB-12? Since it is a water soluble vitamin, getting the compound into the body is pretty straight forward. Sublingual, intranasal spray, liquids, gummies and lollipops will all raise the MB-12 levels. However, excretion is very prompt and so repeated doses throughout the day (and night) would be the only similar manner to the subcutaneous route. There isn’t literature other than anecdotal information that documents similar improvement to the preferred route. Even the advertisements for Dr. David’s Original B-12 Patch only claim superiority to pills.

The subcutaneous injection is the most common, documented, successful method of administration. Our experience at the Child Development Center has been that expensive anesthetic creams such as EMLA are rarely required or even that helpful. “After the child falls asleep, apply to the skin, mark the area and wait 45 minutes?” Many a parent has fallen asleep themselves waiting for that. The idea is to get the liquid into the most likely tissue to let it leak out into the circulation, so a 30º angle with a tiny needle into the upper outer area of the buttocks is great.

If this preparation works, it should be thought of as insulin to a diabetic. For some reason, those parents, and the children, accept that reality (of shots) more freely. So, the parent who complains that “Every time we even enter the room, he wakes up,” or “It’s impossible to give it to her,” is simply in denial. If you want the child to improve, and B12 shots have a fair chance of being part of that improvement, then do what is necessary.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Asperger's Syndrome, Autism Therapies, Chelation, Diets, Reversing autism | 1 Comment »

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 »

Student Request for Autism Information

Monday, March 18th, 2013

I get a great deal of requests from students around the world to assist with their research papers. Because these questions are asked so frequently, I decided to post the latest inquiries with my responses, which I think will help all readers.

Dr. Udell,
 I am a Junior in high school. For my advanced placement English class we were assigned to write a research paper. I have decided to write about the rise of children being diagnosed with Autism. If is isn’t an inconvenience I would greatly appreciate a response to my questions below:

1. According to the CDC one in 88 children are diagnosed with Autism. What factors have contributed to this sharp increase?  
A. Toxic environment acting on susceptible fetuses and infants. This is by far the most important reason for the increase.
B. Better recognition.
C. Broader range of signs and symptoms included in the diagnosis.
D. Inclusion of some genetic syndromes such as Fragile X and Retts syndrome.

2. Is this issue global or more centered in the United States?
I see patients from all over the world, including the Middle and Far east, India, Africa, south America, Central America, Europe. Although most countries have not reported as high an incidence, there is definitely a world wide increase (think toxic world).

3. What are some of the ramifications seen by this increase now, and what are some long term effects on society if this trend continues?
A. Increased need for early recognition.
B. Increased need for services and useful interventions.
C. Increased need for physicians suspecting the diagnosis and research.
D. Future increased needs for adult services and appropriate living facilities.

4. What are some proposed solutions to this issue, and what preventative measures can and are being taken?
A. High index of suspicion with earlier diagnosis and interventions.
B. Recognizing toxic environment and reducing toxic load.
C. Use of successful medical interventions at earliest possible times.
D. Healthier pregnancies with better nutrition and less toxic exposure.
E. Finding genetic and other markers of risk for prevention.

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3 More Autism FAQs

Saturday, March 9th, 2013

In addition to the previous ’frequently asked questions about autism’ blogs, and in a continuing effort to present the problems that most concern parents about their autistic child, here are some more commonly voiced queries:

Q: How can I stop those annoying stims?
A: First, parents need to decide why the child is stimming. As I previously described, stims are mostly communication, so caretakers want to better understand what the patient is trying to say. Try duct-taping your mouth, and tell me that you wouldn’t make unusual-appearing movements of the rest of your body and head, or make vocalizations.
The more annoying that the parent considers a stim, the more likely that the child will use that to gain your attention. “Is something wrong?” “Do you want something” “Let’s go over here and play with this.”
If the child is stimming because of boredom, try directing to a purposeful activity. If the stimming is due to excitement (watching the same part of a video), try re-directing to a different activity. Children are not learning when they are watching the same video over and over. Discontinuance is best accomplished by saying, “You can do that 1 more time,” or “3 more minutes,” rather than saying “Stop doing that!”
Finally, learn to pick your fights. I have witnessed behaviors that only bother one parent, don’t appear to disrupt, or aren’t even much different from what neuro-typical children do. These are the behaviors that can be ignored. Don’t forget, with time, stims will appear, change in complexity or character, re-appear, morph into something else and mostly disappear.

Q: Why are these biomedical treatments interfering with the child’s academic situation?
A: When children are made to ‘wake up’ from their autistic fog, the world becomes more annoying, and focus is difficult. Most biomedical interventions cause an initial period of difficulty for the patient. As there is increased awareness, anxiety can become a problem. Focus and anxiety highlight immaturity, and so behaviors can deteriorate.
About their child’s change in behavior, one patient complained that, “I traded black and white for shades of gray.” Hey, that’s what life is about. Two year-olds tantrum, three year-olds test your patience, and 4-5 year-olds learn to manipulate their parents. Do you really want to go back to the time when your good little boy didn’t bug anyone?
This is why biomedical interventions that improve the patients’ health and well being must be combined with traditional therapies such as Speech and Language and ABA. Since Dr. Spock, there have been volumes written about how to raise a ‘normal’ child. One or two books describing what to do about a particular behavior or type of autistic child only scratch the surface of what it takes to raise ASD-affected children. We all know that there are many types of autisms, meaning that there are multiple reasons for the behaviors that complicate development.

Q: How can we finally get our child to use the bathroom?
A: The first step in toilet training is producing a healthy gut. If the pH of the poop is in the acid range, it’s almost impossible for a patient to NOT withhold. To test that theory, put a drip of vinegar on your rectum and see what happens. Constipation is best helped with more fluids, fiber and probiotics. If the child can’t ‘go’ after 2 days, I prefer glycerin suppositories (Miralax is a no-no). Loose, wet, frequent stools need to be evaluated for bacterial content and yeast, with appropriate treatment depending on the results of testing.
After ~3-1/2 years, I find that the best method is to take advantage of autistic patients’ love of schedules. Take the number of times that the child ‘goes’ per day and add one. So, a child who produces, say, 2 stools per day should be put on the potty 3 times throughout the day. Start with only 5 seconds and work up to 30-60 seconds of just sitting there. More time is unnecessary (and boring – leading to opposition), as is constant prodding and rewards for compliance. Same times – every day –  on the potty – and voila, many children will get the idea.
I am sure that other parents and experts have their solution, so feel free to post them if you have experience with further suggestions.

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Posted in >ALL<, Asperger's Syndrome, Autism Therapies, Diets, Patient experiences | 1 Comment »

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Brian D. Udell MD
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