Posts Tagged ‘CF diet’

Return of the Yeast Issue

Sunday, August 6th, 2017

It has become a ‘given’ lately, in the ASD-alternative-medicine world, that successful treatment protocols often involve antifungal medications. So, when the Child Development Center offers our advice, too often we assume that parents have a thorough knowledge of this common complication in patients with autism.

What is the evidence for this form of medical intervention for ASD?
TheAutismDoctor.com has presented a variety of stories about how overgrowth of yeast can interfere with typical development:

In a two part series, A Yeast Story, 6 years ago, The Autism Yeast Connection highlighted the mechanism by which the critters take over the intestinal flora. The symptoms appear to start with increased ‘fog’ (not attending), then progress to include increase in ‘stimming’, sensory processing disorders, silly behaviors, regression in speech, disturbed sleep, increased ‘OCDs’, and reduced gastrointestinal health.

In the second part of that piece, I offered my view that, the major cause of fungal overgrowth appears to be more of a poorly digested food problem than simple sugars (not to be confused with the observation that too much sugar heightens hyperactive behaviors). However, the overuse and ubiquitous use of antibiotics must be an overwhelming contributor to this phenomenon.

Get Your Child Off the Couch and Out of the House pointed out how constipation leads to slowing down the entire body ecosystem, making outdoor play a chore. Less activity can further deteriorate the situation. Warm, wet, dark, stationary places (a non-motile gut) make an excellent home for yeast, which robs nutrition, alters the immune system, and creates toxic byproducts. In addition to probiotics, healthier foods, and anti fungal preparations, adequate muscle activity will push the food along.

Poor motility in the smooth muscles in the gut that could lead to reflux, or constipation, and possible yeast overgrowth, was discussed in A Brief Discussion of Mitochondrial Function and Autism.

I have written about complicated treatments, such as Stem Cell infusions, Fecal Transplants or Hyperbaric Oxygen chambers, where patients can still benefit from the recognition and treatment of recurring signs and symptoms of yeast – the extreme therapy notwithstanding.

Even standard protocols, such as B12 ‘shots’ can go awry when fungus has overtaken the gastrointestinal tract, as discussed in When Methyl B12 Doesn’t Work for Autism.

Earlier this year, in The Challenge of Challenging Behaviors, I warned that disruptive, aggressive, or self-injurious behaviors first needed to be evaluated from a GI point of view, lest the patient end up on multiple anti-psychotic medications that merely mask the underlying problem.

‘Die-Off’ in Autism Treatment detailed the journey that ensues when pharmaceutical medications are administered to deter the fungus. Complications can be addressed with the judicious use of activated charcoal. Furthermore, the use of nystatin and saccharomyces boulardii may be considered, or needed, if liver function is not optimal. Plus, natural antifungals, probiotics, and probiotics can be of value for prevention.

The Chronicity of Autism, presented documentation of one family’s journey to a successful outcome, by paying very close attention to GI health, and treating yeast when the symptoms suggested.

My 2014 holiday salute to the condition concluded with, “Yeast in the G-I system is one of the few causes of the signs and symptoms of autism that CAN be successfully treated with safe and effective supplements, diet and medication. This is a great time to provide natural anti-fungals, such as apple cider vinegar, garlic oil, olive leaf, etc., to the extent that products are palatable and well tolerated.”

Our experience with antifungal treatment was documented in Anti-fungal Treatment for Autism? The conclusion was that medications can have serious side effects and drug interactions. Present practitioners should follow a written, rigorous protocol and document progress. Appropriate followup laboratory testing should be performed. Other sources of inflammation should be explored and addressed, as well. Under a physician’s care, with the parents’ full understanding and consent, within 2 or 3 short courses, a simple, oral, antifungal medication was well-tolerated, and effective in reducing many symptoms that are generally assumed to be ‘autistic’.

Conclusion
This list is provided to document our experience with thousands of patients. There is solid scientific and clinical evidence for those who are new to the diagnosis, or parents who wish to explore the possibilities that yeast may be affecting your child’s development,

The hyperlinks (and hyperlinks to hyperlinks) should help convince even the most skeptical of professionals that this is a safe, effective treatment for signs and symptoms associated with ASD.

The Chronicity of Autism

Sunday, July 23rd, 2017

Be prepared. Knowledge that recovery from an autism diagnosis is possible should be accompanied by an awareness of the time and resources that must be invested.

The journey is characterized by periods of advancement, stagnation, and sometimes, regression. Success is more likely when professionals diagnose and treat medical issues, and traditional therapists ingrain proper development.

Depending on the degree of difficulty with oro-motor functioning, useful speech may take quite a while. Socialization is encouraged and more play with other children and leads to maturation. Some of autism’s related signs and symptoms, such as sensory issues, repetitive thoughts and behaviors, and gastro-intestinal issues may be at issue for years.

Secondary symptoms that may have been less obvious often come to the fore, such as ADHD, obsessive-compulsive behaviors, or anxiety. Medical specialists, such as psychiatrists, gastroenterologists, or endocrinologists are frequently sought to evaluate and treat co-morbid conditions.

The following is a sample of emails that have taken place over the past 6 months with a wonderful family, who are only able to manage yearly visits:

3/10/17 Cameron is on the following medicines…
His speech is great after ENHANSA and b 12 .
Just since last 3 days His focus has gone and is completely disoriented .
Has started repeating his play and is stuck to do the same thing all the time. Movement wise has become slow.
The therapist tells me could be sensory and compliance.
We had done flucanazole full of jan and Feb.
He is totally off sweets and ENHANSA is working great. Just don’t know y the focus has reduced…

3/17/17 Flucanazole again. Been just 25 days?
Wouldn’t it be bad for his liver?
And do I give it along with the ENHANSA or should I discontinue the ENHANSA?

3/22 Will stop the deplin, but I think it’s all after the ENHANSA. So it is yeast related.
He starts school on coming wed. Thus more stress!
ENHANSA has given him speech but now stressed about behaviour.

3/23/17 Cameron suddenly has stopped listening and has started zoning out.
So lethargic in his posture. Wants to lie down on the floor. Sometimes pushes his friends.
Will stopping the ENHANSA help? As it is definitely due to yeast. I don’t want his school to pick up his case in the first month itself.
Have stopped deplin today. Flucanazole is on.

3/23/17 I have got this letter from a well known pediatrician here…
The school has allowed us to send his meals from home. So no stress at that end.
We have already received the digestive enzymes and kept them handy.
The dr here is aware of Cameron’s diagnosis, but has not mentioned it to the school. We will take it as it comes.
Speech is fantastic with ENHANSA. Lot of spontaneous talking all the time. Clarity has come with L-carnosine. Deplin did help a lot with comprehension and there were no tics for 2 months.
Just can’t understand what happened a week after ENHANSA . Cold and a runny nose for a week ’til we started flucanazole…. Stopping ENHANSA hope the speech doesn’t reduce. Cause we won’t be able to start it again ’til vacations then…

3/25/17 Cameron had leakage of stool without even increasing the magnesium.
So I have not given him the extra dose. Today his behaviour was slightly better. Like 10% improvement.

3/28/17 Cameron has calmed down a bit after stopping the ENHANSA and deplin.
Currently he is on… Do let me know if any alterations to be made.
Also he has started repeating sentences and words. From movies. And robotic speech is slightly back.

3/29/17 First day of school.
Keep him in your prayers.

4/7/17 Cameron has calmed down and the tics r also not to be seen in the last 2-3 days.
Melt downs have stopped completely.
Worry :- repeating sentences, and not comprehending questions. Giving weird answers to any question. Focus not there… ENHANSA caused the flare according to me. So I feel we should not start it ’til… school breaks for 2 months. So all trials can happen during that time.
Do let me know about the b 12 shots too. As the speech has diminished by like 50%. He only answers when needed or forced to.

4/23/17 I feel the deplin had helped Cameron a great deal wen we had started it.
His comprehension of language and focus had increased a great deal. So will definitely re-start.
Main concerns :-  Spontaneous speech.  And comprehension of language. Focus.
Nalrexone I am applying religiously every night on his wrist.

4/25/17 Cameron stopped diflucan on 22 nd. And has been complaining of stomach ache.
Stool has been passing once a day .
Deplin is on.
Today the therapist felt that he was not focussing at all and was giving all weird answers. Which was not the case last week. Is all this regression always there after stopping the diflucan? Or is it just one off day.

4/26/17 New Laboratory Results

5/4/17 Cameron’s second round of diflucan is on.
And since yesterday he has started complaining of a stomach ache all the time.
He is passing stool twice a day and quiet loose .
Today he has barely eaten any food and is complaining immediately after 4-5 spoons of his dinner.

5/6/17 Cameron has been complaining on cramps in his stomach.
In a day 2-3 times and at night, too… fever, itching in the pelvic area and sore throath since yesterday nd now constipation.
I have started the fiber today. It’s extreamly hot here…
He’s not eating well since last 2 days and is very lethargic too. Didn’t go to school on Friday.
I have started activated charcoal.
Just worried that I hope this diflucan doesn’t effect him in the wrong way as he is not eating enough. This is something I had read so was thinking would be related to a die off.

6/4/17 Cameron breaks from school in a few days. 
Just yesterday and today I have noticed lack of focus and a few melt downs. Also severe stench in his poop and while passing gas. (for which I gave him activated charcoal today). We r scheduled in 2 weeks and blood tests follow.
Was wondering if I should start the diflucan now (hope it does not effect any Results in the blood test) or should we again give the ENHANSA a try?
Current meds and supplements: D3 2000, Fish oil, Probiotics, Gluthatoine, Deplin, L carnosine, MVIs, Magnesium, Vit c 500, Naltrexone cream…

7/10/17 Cameron has resumed school. Stomach is now fine.
Slight bloated though, but has lost his appetite completely. He is eating half of what he used to eat last to last week. Main issue is chewing. Takes an hour to eat an apple. Seems less energetic. Could be the heat here also but I feel he doesn’t have the strength. As is asking to be carried on steps and even out of bed wants to be carried. (carrying him has come almost after 1.5 yrs , after we met u first)
So I think it’s more related to energy. He seems v lethargic. Inspite of sleeping 10-12 hrs of good sleep. Do u think we need to start the b12 now?

7/11/17 I’ve stopped ENHANSA completely. It’s not for Cameron.
His behaviour is worsening.
I gave him 2 spoons of magnesium yesterday like advised last time by you.
I am out of town for 3 more days. Will go home and start diflucan 6 weeks again.

7/22/17 I started Cameron on 6 weeks of diflucan as he had started flapping and hitting everyone.
It’s been one week and he is much better.
We also started him on 2 capsules of vayarin. I can’t see any major change but it’s not harming in any way. So should we continue with that?

Discussion
Sometimes, such interactions are via phone and/or with our staff, but close attention to change, some patience, and accurate, appropriate interventions are often successful.

Specialists, therapists, and parents get used to what works, what doesn’t, and what hurts their individual child. Intelligent, warrior parents seek to leave no stone unturned. Eventually, the good times outweigh the challenging ones. And the challenging ones get less so.

For many families, the patient no longer meets criteria for ASD.

Conclusion
The most satisfaction comes as we appreciate the affected person’s strengths, and continue to work with those not-yet-acqired social skills.

All the work pays off. The children are loved, and love back. A way through the forest seems to appear. Life settles down, even for the most affected patients. Perhaps the parents’ greatest frustration is the understanding that intelligence is not the issue, and that there is a whole person inside.

A Tale of Two Studies – About Autism

Sunday, June 25th, 2017

June 2017
Two quite different papers were published recently, which together directly address important aspects regarding our understanding about diagnosis, prevention and treatment of autism.

The first article is entitled, “Functional neuroimaging of high-risk 6-month-old infants predicts a diagnosis of autism at 24 months of age.” An earlier diagnosis – much earlier – might be on the horizon if this interesting MRI study holds true.

The algorithms are very dense. In fact, I had to ask my neuro-radio-pathologist friend to help me interpret the data, and he said the math gave him a headache! For example, “… a total of 974 functional connections in the 6-month- old brain that showed a relationship with behavior at 24 months and were different between groups. Together, these functional connections constituted <4% of the potential 26,335 total functional connections studied…”

It’s not anatomy, i.e. structure that was evaluated, but the workings of neural pathways, implying that autism (some forms of it, anyway) is present in the brain at a very early age. Autistic behaviors that could be predicted and, possibly successfully prevented or reduced, included social interaction, expressive language, and repetition, among a number of other important parameters.

This evaluation represents a new generation of ‘machine-based learning’, which itself begs further scrutiny. There was a small sample size, and questions remain about the reliably of testing an infant’s thoughts, while inside a moving, noisy environment. The bottom line is, there was high sensitivity and specificity for predicting signs and symptoms at 2 years.

A complementary investigation, published elsewhere, happened to appear this month. It is entitled, “Randomised trial of a parent-mediated intervention for infants at high risk for autism: longitudinal outcomes to age 3 years.” As in the other paper, younger siblings were chosen as subjects, due to their 20 times increased risk of developmental challenges. In similarly aged infants and toddlers, there were improved overall outcomes in the treatment group.

The authors wrote,”… that a very early intervention for at-risk infants has produced a sustained alteration of subsequent child developmental trajectory; reducing prodromal autism symptoms into the second and third years of life to a total of 24 months following end of the intervention.
(Possibly useful data in response to beneficiaries’ requests for insurance coverage?)

Discussion
It is reassuring to observe that, “Earlier diagnosis can lead to appropriate preemptive treatment with improved outcomes,” has become a model of research. Authors of the MRI piece wrote, “Given the known plasticity of the brain and behavior during the first year of life, together with the absence of the defining features of the disorder, intervention during this presymptomatic phase, before consolidation of the full syndrome of ASD, is likely to show considerably stronger benefits compared with later treatments.”

Conclusion
Such analyses ought to shape new treatment paradigms for this exploding epidemic. As similar attitudes become more commonplace, it ought to behoove conventional medicine to look at this evidence-based approach, and start doing more appropriate assessments for patients diagnosed with ASD.

Of course, “further study is required.” In the meantime, information is accumulating that, even a pre-emptive diagnosis seems prudent.

Is there an Autism ‘Smart Gene’?

Sunday, May 28th, 2017

When evaluating new research, it is important to:
1) Determine if the conclusion makes sense (regardless of statistical values), and
2) Review documented evidence – both pro and con.
That brings me to an article that recently appeared in Nature Genetics, entitled,  ‘Genome-wide association meta-analysis of 78,308 individuals identifies new loci and genes influencing human intelligence’.

Are People with ‘smart genes’
more likely to have Autism?

The Study
Combining data from multiple studies, researchers identified hundreds of minor genetic variations associated with IQ, including many new ones. “The identified genes are predominantly expressed in brain tissue… “

“Significant genetic correlations were observed with 14 traits… Moderate, positive genetic correlations were observed with smoking cessation, intracranial volume, head circumference in infancy, autism spectrum disorder and height.”

The authors concluded, “These findings provide starting points for understanding the molecular neurobiological mechanisms underlying intelligence, one of the most investigated traits in humans.”

The Good
In this study, autism is linked to intelligence, rather than a decades-long belief that, “ASD just used to be called mental retardation.”

This finding offers hope that patients who can successfully shed the sensory and social stigmata, have an additional IQ cushion to achieve success.

The Bad
The story, as generally reported in the media, was represented by this British news headline, “Autism is linked to intelligence: People with ‘smart genes’ are more likely to have the disorder”. To say the least, that’s not accurate.

The manner in which the data was collected and analyzed is complicated. Really complicated. Multiple, convoluted arguments for validation were offered, begging the question, “Why so much information manipulation?”

It is always suspect when science over-emphasizes the contribution of genes to intelligence. Comparable information has been misused for over a century, to ‘select’ for superiority. Therefore, even when discussing this knowledge as it applies to the world of autism, such assertions could prove pernicious.

The Ugly
This finding, if accurate, might represent a future net loss in human intelligence. Given that 2% of males are presently affected, with many who suffer significant impairment to typical socialization, possibly resulting in fewer ‘good’ qualities that make it into the total pool. Autism could be ‘culling the herd’ of ‘smart genes’, if the tide of this epidemic is not stemmed.

Conclusion
Our understanding of how genes lead to visible effects, due to the event(s) in which they are involved, will underlie our future understanding of human development, as well as autism.

Professionals who care for children with ASD are never surprised when parents claim that their kids are bright. It appears that there are other, multiple disturbances in central nervous system processing that lead to symptomatic challenges.

At the least, this association helps confirm such observations, and might provoke novel strategies for discovery.

Parents Helping Other Parents Battling Autism and ADHD

Sunday, May 21st, 2017

The First Warrior Parent
More than 5 decades ago, Dr. Bernard Rimland observed his son’s unusual development, and was determined to understand the cause and treatment of a rare condition called autism. So began a more modern view of the condition, which addressed the tide of children who began appearing with similar challenges. His work started a movement that has ultimately morphed into The Medical Academy of Pediatric Special Needs.

At that time, the predominant cause of autism, promulgated by self-taught psychologist and media darling, Bruno Bettleheim, was the ‘refrigeratory mom’ theory. His experiences in Nazi concentration camps led him to believe that a lack of love in their environment could cause a child to turn off the road to typical human development. Dr. Rimland said, “No way,” and along with other like-minded professionals created biomedical workups with useful interventions.

It took another three decades until Jenny McCarthy popularized that viewpoint, with her outspoken experiences, fighting the medical profession to get proper care for her son. What progress has science made since that battle? Only a few brave professional parent practitioners, such as Drs. Dan Rossignol, Julie Buckley, Anju Usman and Nancy O’Hara, have taken up the slack.

Advancing the Combat
So, in that vacuum has arisen a number of other parent warriors. These are intelligent, dedicated, caring individuals, who have researched the data and applied various treatments to their children, often, trying it out on themselves first. They have observed various amounts of success, depending on their child’s specific difficulties. Some achieve remarkable results, and wish to pay it forward.

One day recently, I got into an interesting email discussion about Transcranial, Red/Near-Infrared Light-Emitting Diode Therapy. That determined Dad found a difference in his own clarity by moving the light from front to back. Wasn’t that OK to try on his child?

Just a few hours later, I had a conversation with a Mom who has been witnessing positive results using Ionized water. Her child was making significant progress, and this generous lady wanted to offer the product – for free – to other parents. “We can help so many more!”

One father has observed improvement with a particular form of Acai berry. Other parents have found good results with MMS, CBD, THC+CBD, Sauna, and Essential Oils, among other treatments.

Few Victors, So Far
I was telling this story to an experienced Mom, and she declared, “See how desperate we are!” Those who vilify Dr. Andrew Wakefield’s heresy over the possible danger of some childhood vaccination protocols ought to consider Dr. Leo Kanner’s role 80 years ago, which established a misguided psychological point of view.

Modern medicine has implicated genetic problems, but doctors fail to order appropriate testing; brain abnormalities, without getting diagnostic labs; and environmental factors, yet there exists little research to establish therapeutic strategies.

New Strategies
The reality is that, both professionals and parents, are experimenting on the children. Without proper studies we cannot know eventual outcomes, of even the most ‘benign’ interventions. We are now learning about conditions that are not only carried from one generation to the next, but 2 generations away. Real science takes time.

A common factor among many of the treatments that I encounter is some form of gut adjustment. Many of the specific supplements help while they are being administered and do not appear to be toxic. However, much of the research has been documented only in other species or conditions, and requires additional scrutiny.

Advice to Medics
Parents, who see progress in their own child, then in others, simply want to guide more families in the same boat. But, you are all NOT in the same boat. Some kids are older or younger, some girls or boys, others with metabolic, genetic, immunologic, gut conditions and various combinations that are different from child to child. SAFE is not SAFE for all, as we have learned from the vaccination dogma.

Even those strategies that work may require additional patient evaluation and testing. If a parent sees untoward effects, watch closely for such important signs, such as dehydration or an extensive rash. By discussing these interventions with a functional doctor, a child stands the best chance for advancement.

‘Alternative medicine’ strives to be inclusive, but the response by professionals to adopt non-conventional strategies may take a bit longer to take hold, as evidence becomes more clear. We are fighting on the same side.

Thanks, Moms, for Your Special Attention

Sunday, May 14th, 2017

There are some great fathers out there, to be sure. Dads, don’t get me wrong, I’ll give you guys your due in June. I’m not judging and I have no idea how I might have done with such a challenging journey as raising an autistic child. I am simply reporting my observation that, by far, the majority of amazing caretakers out there are the mothers.

Dr. Martha Herbert has often begun her scientific presentations with a story about a friend whose adult child awoke from anesthesia and spent hours speaking normally with her mom. The daughter knew how difficult of a child she was and how much hard work her mother had done to get her to this point. After falling back to sleep and re-awakening, the daughter again exhibited her autistic personality. Dr. Herbert uses this example (plus more genuine scientific evidence) to teach that there seems to be a reversibility to ASD, and we have yet to even look at the problem in the right manner (as a whole body disorder). Her message is for moms to keep trying, as will SHE, until there is an answer.

Jenny McCarthy’s “mother warrior” credo has helped recover many children, I am certain of that. Her message has been that the general public cannot necessarily trust conventional medical thinking about the diagnosis, etiology, treatment, and prognosis for this epidemic. You can’t blame her for seeking answers for her son and all of the other children with autism.

So, in many of my posts, I write about planning, medication, special diets, supplements, and therapies. For the moms out there, that’s preaching to the choir. I’m only enumerating such chores as I detail the work that every ASD patient requires. I have learned most of my art – about toilet training, time management, addressing stims, GF/CF, cluster classes, IEPs, sensory conditioning and much much, more – from the insightful and relentless mothers who are determined to help their child recover.

Thank you. Thank you all for letting me examine and help care for your children. It has been one of the best experiences that I have ever had in my professional life.

The only piece of advice that I’ll offer in this post is this, take some time out for yourself and your spouse. I said “some”, ’cause I know that it is sometimes impossible. But, it needs to be more than “none”. The number of intact families in this practice is even lower than the national average.

At this time of year, mothers seek advice about how to continue administering their children’s pharmaceutical protocol, in camp or on vacation. The diet, vitamins, and medications that require prescriptions – all in order to get on a plane. Then, there is the plane! I’m not quite sure how families are able to get anywhere with all of the work that is required.

Mothers are special. Mother’s Day is certainly a deserved holiday.
Moms of Autistic Kids?
Lucky children.

Flu Shots in Pregnancy May Increase Autism Risk

Sunday, December 4th, 2016

jamaThe Journal of the American Medical Association recently published a study entitled, Association Between Influenza Infection and Vaccination During Pregnancy and Risk of Autism Spectrum Disorder.

Whispering Down the Lane
Health News from NPR, Fox News, Medscape.com and even the American Academy of Pediatrics echoed each other, claiming the paper offers proof of the flu vaccine’s ‘safety’ when given during pregnancy.

Do these reporters really read the research? I reviewed the same literature, and decided that the title of this post should highlight the opposite position.

Results
1. “…maternal influenza infection during pregnancy was not associated with increased autism risk.”
If a pregnant woman gets the flu, the child is considered safe from the standpoint of developing ASD. This is not necessarily supported by other research (1 , 2, 3, 4), but this finding provides some level of comfort.

2. “There was a suggestion of increased risk of autism spectrum disorders among children whose mothers received an influenza vaccination during their first trimester…”
At the earliest time in gestation, many women may not be aware of a pregnancy, which might be risky, if they receive the ‘shot’. Fudge factor: “…the association was statistically insignificant after adjusting for multiple comparisons, indicating that the finding could be due to chance.”

3. “Our findings do not call for vaccine policy or practice changes but do suggest the need for additional studies.”
Is that explanation supposed to make that make families feel more comfortable about this issue? How about this? One of the principle authors “…received research grant support from GlaxoSmithKline, Sanofi Pasteur, Merck, Pfizer, Protein Science, MedImmune, and Novartis.”

Other literature
Research demonstrating effectiveness of the vaccine, especially in the face of a specific epidemic is the principle motivation for the recommendation to vaccinate in pregnancy. The publications from the beginning of this century have demonstrated efficacy and safety for the mother and the baby. Previous studies have also shown an increase in small or preterm infants associated with influenza during pregnancy.

However, there is a lack of research regarding ASD outcome when flu vaccine is administered, and pharmaceutical industry funding is ubiquitous.

The flu shot is not recommended for children under the age of 6 months. It is advocated for pregnant women. So, it’s OK if you are a fetus? The use of acetaminophen for a fever, which is certainly a known complication of ‘shots’, has been identified as a possible contributor to ASD.

Conclusion
Whose interests are being served by the widespread use of these vaccinations? For the very old or infirm, it seems a reasonable option. Concerning the immunocompromised, even if herd immunity could be achieved (~90% vaccinated), that would only cover only a handful of the possible viral pathogens that exist – with new ones popping up every day.

The product generates billions of dollars for the drug makers. Money used to fund studies, such as these, needs to come from completely independent sources.

The present study indicates a slightly increased risk of autism from a flu vaccination given early in pregnancy. Since there is less evidence that the flu, itself, leads to significant developmental disorders, it appears that more information needs to be made available in the face of the modern autism epidemic.

Autism vs. Insurance

Sunday, November 13th, 2016

insurance4If insurance is a wager to cover the expenses incurred due to some rare, catastrophic event, then health insurance is only a distant cousin. It’s betting how much you will owe hospitals and doctors when you are un-well. For people who will never get sick or injured, medical coverage is unnecessary.

However, for an increasing number of modern families, an autism diagnosis will become a reality. The lifetime costs range from ~$1.5M – $2.5M, or more. Actuaries know this, of course. Presently, and for the foreseeable future, to the extent that is ‘allowed’, coverage will be significantly limited for medical conditions that fall under the ASD banner. It’s the insurance business.

How Not to Cover an Autism Claim
An underlying principle is that, the longer it takes to pay, the more interest is generated on a company’s reserve dollars. Any excuse to deny, therefore, can improve profitability.

Since coverage is provided based on the type of diagnosis, the more specific and verifiable, the less likely likelihood of a disagreement about expected costs. Autism is neither a precise entity, nor can it be confirmed with scientific instruments.

Even the usual and customary therapies, such as ABA, OT, PT, and Speech&Language are disputed. Insurance plans have gone kicking and screaming into paying for those proven services. Plus, the practitioner must possess the credentials that are acceptable to the payor. Barriers are erected at each step along the way.

Getting reimbursed for a proper workup can be difficult. An MRI or EEG may be customary, but not a genetic test or food allergy panel. Successful patient outcomes are not as convincing as university research. Funding for a study on dietary effects on behavior based on laboratory evidence carries little profit motive.

For ASD, the primary on-label medications are very potent and potentially harmful. Due to formulary limitations based on cost, practitioners are even instructed to prescribe a more dangerous drug over others that might be better tolerated. More effective and less expensive supplements are not even considered.

The Folate Example
For over a decade, variations in the genes that propel an important metabolic pathway have been tied to problems in patients with autism. That has not deterred insurers from denying reimbursement to the accepted testing laboratories – and increasing charges for out-of-pocket expense.

Utilizing a relatively inexpensive supplement, a recent study has demonstrated, “…treatment with high-dose folinic acid for 12 weeks resulted in improvement in verbal communication as compared with placebo…”

Not surprisingly, insurance companies refuse to pay for this medicine, either.

Conclusions
Families of patients with ASD already know that they must pay out of pocket for many of the treatments. If they work great, it’s worth it.

As new insurance products take shape, it may be a good opportunity to lobby nascent companies for improved coverage of all autism treatments that show validity. Showing a cost savings matters more to companies that intend to stick with an insured.

Measuring markers of autism, such as folic acid metabolites, for diagnosis and results of treatment, will go a long way toward discovering – and getting reimbursed for – newer interventions.

The role of prevention cannot be overemphasized. Our external and internal environments must be scrutinized. More appropriate standards created and implemented for safe food, air, and water, should reduce the cost of all health insurance.

Recess is Important for Special Needs Students, Too

Sunday, September 25th, 2016

An Open Letter to School Officials

There are developmental states between having autism and having had it. It’s analogous to the ‘pins-and-needles’ feeling following a limb injury, for example, but preceding a more complete recovery.

During that healing phase, there may be muscle weakness and nervous incoordination; dysfunction about which little can be done, other than being patient. So it appears to be with children who have achieved useful speech and a degree of socialization that enables them to join the general student body.

Leftover signs and symptoms may include immaturity (difficulty transitioning to non-preferred work, impatience, non-compliance, etc.), ADHD conduct, and aggression. It is not uncommon for pupils affected with residual ASD, therefore, to display unacceptable behavior. In a Gen-Ed setting, meltdowns may tax and even infuriate staff.

When asked about their favorite activity at school, most children answer, “Lunch,” or “Recess.” Since students can’t be denied the former, personnel may turn to withholding the latter from those who misbehave, in order to instill respect and compliance. That may be a big mistake.

Indoor activities and distractions have become the norm and consume large chunks of time. iStuff, therapies, homework, tutoring, etc. all keep youngsters out of the sun and fresh air. Physical isolation with limited calorie-burning is the last thing that children with language delay and difficulty sitting still need. Who gains from such punishment? Some kids prefer to avoid the anxiety of outside play. Perhaps, bullying is precipitating a breakdown? Others do not appear to object, at all, by such censure.

Techniques to instill self control that may have been successful in previous centuries no longer apply to a neuro-diverse student body. Parents and professionals must collaborate to make sure that a proper and appropriate plan of action follows a display of maladaptive behaviors. Strategies that are more likely to be successful – and less detrimental – can be developed. Methods should be individualized, with the help of appropriate staff. Such an approach helps assure a more productive academic season.

Access to recess should be as important as lunch; maybe even more so, since so many children with challenging behaviors are on special diets and picky eaters, anyway. Just kidding, of course (but not really).just-kidding-jpeg

Processing Disorders and Autism

Sunday, September 18th, 2016

EEGleftThere are a number of newly-minted diagnoses that have been invented to explain many of the symptoms of the modern epidemic that covers autism.

They include:

 Sensory Processing Disorder
→ Visual Processing Disorder
→ Auditory Processing Disorder
→ Oppositional Defiance Disorder
→ Attention Deficit Disorder
→ Hyperactivity Disorder

→ Attention Deficit / Hyperactivity Disorder
→ Anxiety Disorder
→ Obsessive Compulsive Disorder
→ Explosive Disorder
→ Social Processing Disorder

Diagnosis:
These conditions frequently display such similar general patterns that, depending on a practitioner’s inclination to be a ‘splitter’ or a ‘lumper’, the available treatment regimens could vary widely. For example, AD and HD are usually treated as ADHD, with stimulant medications, even though inattention, poor focus, distractibility and hyperactivity may arise from a variety of physiological conditions.

Likewise, aggression, obsessive – compulsive behaviors, and opposition are usually prescribed anti-anxiety medications, such as Risperdone, Abilify, Intuniv, or even Prozac and Zoloft.

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Some are more or less related, and others may be merely due to immaturity, therefore patience and time will yield preferable results.

Treatments:
It is not difficult to imagine that processing difficulties in vision, hearing, touch, and the other senses, can lead to signs, such as repetitive behaviors or ‘stimming’, to alleviate the sensory overload. Supplements, such as magnesium, turmeric, epsom salt baths, essential oils and even HBOT could address those issues, in addition to traditional therapies. Most parents of children with ASD own at least one trampoline.

Restricted interests and repetitive behaviors are core problems in patients with autism. They are not OCD, and the usual medications are rarely effective, even though the diagnosis prompts traditional physicians to prescribe higher, more frequent doses, and/or a combination of pharmaceutical preparations.

The recognition that processing difficulties underly these unusual behaviors has engendered the protocols that include ABA, PT, OT and other specialty therapies. They require significant resources, but have demonstrated improved outcomes. Certainly this approach is not as risky or potentially harmful as potent medications.

Anxiety appears to be a result of a combination of the other processing difficulties, and social processing disorder is as real as any of the other contrived diagnoses. Early socialization is, therefore, a useful intervention. The fewer pharmacological interventions, the less chance that they will poison the growing brain.

On another hand, certain abnormalities seem to be a result of difficulties in other-than-CNS processing. Aggression, opposition, and explosive behaviors are frequently gut-related. The recognition that autistic behaviors can be ameliorated by restoring the gastrointestinal microbiome has assisted many patients who have been suffering for years.

Conclusions:
The biomedical approach is unique in the treatment of this myriad of medical conditions because the basic assumption is that they are due to a variety of upstream difficulties.

The recognition that, in patients with autism, some neural pathways proceed down the right path, others stumble upon an incorrect route, some thoughts don’t propagate at all, while other symptoms are emanating from elsewhere, goes a long way to assisting patients in their improvement.

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Brian D. Udell MD
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