Posts Tagged ‘diet for autism’

Medical Academy of Pediatric Special Needs Conference – Spring 2018

Sunday, March 18th, 2018

The Fall 2017 conference was ‘hurricaned’ out, so it’s been a year since I reported on the semi-annual 3-day scientific meeting of the Medical Academy of Pediatric Special Needs. This post will focus on the two most controversial topics – one, a treatment, and the other involving a popular new diagnosis.

Medical marijuana.
The less psychoactive, and legal part of pot – CBD (cannabidiol) – has been available for a couple of years now. Our experience at The Child Development Center, and the consensus of the group, was that it may be helpful for seizures, but perhaps less so for aggression, stimming and sleep. With no serious side effects, however, except for price (for high quality, measurable concentrations), it could be worth a try.

Much more effective, according to Dr. Michael Elice, are products that contain a measurable amount of THC (tetrahydrocannabinol). The presentation covered his experience with CBD+THC = medical marijuana. Utilizing the Autism Behavior Checklist as a measuring tool, he noted significant reductions in irritability, ‘lethargy’, stereotypy (stimming) inappropriate speech, and hyperactivity for a small number of children. To be fair, he also presented a child whose symptoms worsened with treatment. Overall, Dr. Elice told the audience that this intervention can be quite helpful for aggression and negative behaviors, though not for the ‘verbal diarrhea’ that many recovering children exhibit.

I inquired about the paucity of literature supporting medical marijuana, and studies that describe abnormal brain development when administered to youngsters. Dr. Elice responded that 1) The affected children’s brains are already demonstrating problems in development, and 2) Compared to the conventional meds, cannabis seems more efficacious with fewer side effects

No protocol was offered… the correct form, concentrations of THC/CBD, timing, and best mode of administration have yet to be elucidated. For physicians in states where pot is not legal, this treatment is not a realistic option. Even where there are medical exemptions, the process is resource intensive and tedious.

PANDAS/PANS 
Auto-immunity that affects a young child’s brain in an acute fashion, has been a popular diagnosis of late. Participants were treated to a full day of discussion by the most famous clinicians and researchers in the field. The room was packed.

The first speaker of the day was Dr. Aristo Vojdani, an Israeli researcher who practically invented food allergy testing. In fact, he began his presentation by declaring that he has learned the weaknesses of his earlier work, and the misconceptions about those tests. His take home messages were 1) Group A streptococcus is only one of many environmental trigger that contribute to symptoms, 2) Many pathogens and food components cross react with brain cells to cause problems, and 3) Accurately defining such antibodies and which receptors are affected is necessary to remove the environmental triggers.

Dr. Madeline Cunningham presented her modern view of molecular mimicry – “the sharing of antigenic determinants between the host and invading organisms.” The heart, brain, and other tissues can become the targets of the body’s response to environmental pathogens or toxins. Identifying the reactivity of brain proteins – the Cunningham Panel – may not be specific to strep, and helps explain disparate results. Tics, OCD and other neurologic difficulties are the result of a weakened blood-brain barrier and cross-reactivity.

Dr. Tanya Murphy presented, Antibiotic Treatment in PANS, Panacea or not? The specific signs and symptoms of PANS and PANDAS were elucidated. The role of Group A strep as a precipitating agent was emphasized. Specifically the rise of ASO (antistreptolysin O) often precedes the rise AntiDNAse B, but a positive culture for the organism is the best evidence. The successful role of antibiotics in general, and which ones seemed to work best was covered in detail.

A panel discussion involving these esteemed experts completed this incredibly interesting day.

Conclusions
Practicing functional and integrative medicine nowadays, with insurance stipulations and conventional dogma, presents unique challenges. The pediatric version faces even more obstacles, due to uncertainty of diagnosis, non-conventional treatments, and the vaccination issues. Without this Pediatric Fellowship, such work would be even more frustrating. The sharing of our collective experience regarding the epidemic of children with ASD and ADHD has taken diagnosis and treatment to newer and more modern levels of understanding.

As in previous years, the most valuable part of these conferences is the esprit du corps and networking of experience and ideas.

When Mom and Dad Disagree About Autism Intervention

Sunday, October 15th, 2017

Undoubtedly, the most stressful challenge that any family might face is illness in their child. Even in cases where treatment is established, e.g. acute leukemia, there are bound to be differences of opinion about which doctor, or hospital will do the best job.

When it comes to ASD however, even the diagnosis can remain in doubt. One parent, or a sibling, may have experienced “the same” symptoms, such as late speech or inattentiveness. So, the ‘watchful waiting’ advice from the pediatrician appears most prudent. A neurologist who observed your toddler for 70 seconds may have declared a normal – or dire – outcome. Who to believe? Then, there is the conventional medical community that continues to debate the condition and the ability of earlier recognition to alter the course.

Differences about the diagnosis
 Take an online questionnaire, such as the Autism Treatment Evaluation Checklist or Modified Autism Checklist for Toddlers. Although ‘experts’ may deem such surveying as ineffective, it is certainly a start. And, parents shouldn’t bother quibbling over whether Junior should get a “1” or “2” for any single answer. Observing suspicious tendencies may help convince a spouse, or doctor, that there could be real reason for concern.

 Listen to the advice of grandma or grandpa. They have raised other children, even if it was a different century. Try not to listen to advisors who have no responsibility for their opinions.

 If a therapist is already involved, ask what signs and symptoms they view as worrisome. It’s not their labels that you seek, but another professional opinion regarding suspect behavior.

 Don’t be afraid to ask the child’s teacher, or the school personnel, what they think might be different about your child. Academic staff are frequently the first to postulate a problem.

 Take videos of unusual behaviors. One parent may simply not have gotten to spend enough time to have observed a ‘stim’, or recognize activity as repetitive.

 Have the child evaluated by a trained professional. Then, insist on a precise diagnosis. Children with sensory processing, executive functioning disorder, and speech apraxia have autism.

Discrepancies about the next steps
So much inertia must be overcome to establish that first step, simply embracing traditional treatments can offer parents glimpses of improved development. OT (occupational therapy), PT (physical therapy), S&L (speech and language therapy), and ABA (behavioral therapies), must be given the time to reveal results.

At the very least, however, ask your pediatrician to make sure to perform some basic laboratory testing. Even if there is disagreement, how could it hurt to obtain a complete blood count, evaluation of nutritional status (calcium, magnesium, vitamin D, iron), and thyroid screening?

Opposition about biomedical interventions
Although the pull of the Internet is great, children are best served by contacting a physician who is involved in The Medical Academy of Pediatric Special Needs. Unfortunately, there are too few to adequately staff the burgeoning number of affected children, but, we practice state-of-the-art, evidence-based medical intervention.

By continuing our education within such a medical fellowship, and achieving a thorough knowledge of the science that appears in peer-reviewed journals, doctors have developed protocols that have been proven safe and effective. Although the costs are rarely adequately covered by medical insurance, the investment will last a lifetime. Literally.

Conclusion
Denial and delay are not in your child’s best interests. Doctors who are satisfied with the status quo will achieve that end. Modern thinking is that earlier intervention results in improved outcomes.

At The Child Development Center, our experienced and knowledgeable Practice Manager, Karen, has observed that families who seem to have the most success, “May not be on the same page, but are at least in the same book!”

Your child’s autism – Was it just a coincidence?

Friday, September 15th, 2017

Jodi’s Story

Born 3 weeks prematurely, and weighing only 5+ pounds, this beautiful child was at high risk for a multitude of problems. That might include apnea (periodic breathing), GERD (reflux), other feeding difficulties, a weak immune system, and developmental concerns.

Since Mom is a personal friend, I had already warned against getting the Hepatitis B inoculation prior to hospital discharge. In such a tiny baby, “What’s the rush?” There were absolutely no risk factors, yet the doctors were already irked by the mother’s non-compliance.

For various reasons, Mom’s attempts at breastfeeding were never supported by the medical establishment. However, she worked to save as much of the natural product as she could, and supplement whenever possible. As occurs so frequently lately, oral-motor difficulties did arise, and an inevitable path unfolded.

First, the pediatrician said that the baby, “Isn’t getting enough. Thicken with rice cereal and cut larger holes in the nipple.” When that failed to help, noisy breathing led to an Ear-Nose-Throat doctor checking the airway, which was fine. The ‘special formulas’ merry-go-round was boarded. The gastroenterologist suggested that it was a ‘food allergy’. What, exactly, could a 6-week-old premie be allergic to? Where is the evidence-based medicine on that theory?

Reflux was suspected and Prevacid was prescribed. That was when I stuck my nose back into the case. The upper-GI study actually showed that the baby had very poor esophageal motility, which was causing the noisy breathing and poor feeding. Positioning and a mild medication to foster more effective swallowing were ordered, and the baby thrived for the next few months. “What about the shots?” asked the pediatrician.

BTW, an earlier maternal Vitamin D deficiency had already been diagnosed by the obstetrician, though no intervention or followup had been suggested. With nutritional supplements and an appropriate probiotic, the baby’s eating, stooling and development were proceeding normally.

A couple of months later, Jodi had a temperature elevation. Antibiotics were administered, but when that failed to ameliorate her fever, another round of medications was ordered for a ‘urinary tract infection’. By the third course of meds, the child exhibited a severe penicillin rash, and I said, “Enough!”

Only one week after this, the doctor was badgering the mother to, “Get up-to-date on the childhood vaccination schedule.” A nurse was about to give the usual 1-year cocktail, but Mom called me right before the injection. I told her to pay the bill and shoot the contents into the waste basket. Apparently, none of the office staff or professionals that day were aware of the past month’s complicated medical course. “Sorry,” was their response.

Jodi is now becoming a toddler; walking, talking and acting like any neuro-typical kid. That could be thanks to our mild interventions, in spite of them, or simply a merciful act of God. Regardless, we didn’t play any part in causing harm by making unsubstantiated diagnoses, utilizing potent drugs not really meant for infants, or doubling down on an already-taxed immune system.

And, she is slowly becoming up-to-date on an appropriate vaccination schedule, so the ‘herd’ is protected.

Discussion
As a Special Needs Pediatrician, how many times have I heard the opposite story? The Child Development Center frequently cares for children with gut problems, repeated ear infections, eczema, and/or asthma, etc., who are constantly sick and receive antibiotics for practically every complaint. The vaccinations seem to be more important than a workup for persistent medical problems. The prudent practitioner would do well to delay the recommended schedule, gaining more trust from appreciative parents.

Autism is an epidemic. There is no study on high-risk infants who receive 3 rounds of antibiotics within the first year, display immune intolerance (strange rashes, e.g.), then get inoculated by a concoction of potent antigens, shortly after a (probable) viral illness. There never will be. What committee on human experimentation would let a child take that risk? Don’t tell me about “The studies show…” Doctors, use common sense.

Why is there so much autism? A generally-accepted scientific explanation is that diseases occur when susceptible individuals become exposed to environmental stress. Why doesn’t every child have this issue? Isn’t 1/68 enough? Think of the bubonic plague in 12th Century England. Everyone didn’t die.

Conclusion 
As introduced to a generation through Jenny McCarthy’s books, and recently documented in An Unfortunate Coincidence, there ain’t no such thing as a genetic epidemic.

This very personal journey is followed by too many families. We need more research, proper advice, and most of all, additional well-trained trained professionals for prevention, earlier diagnosis and useful interventions.

For the pediatrician who exclaims, “Well, I don’t know much about autism,” it’s time to pick up a book (or journal).

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.

Rerun: Autism Apraxia and the Oboe

Sunday, July 16th, 2017

Shortly after starting speech therapy, it is not uncommon for our parents to be informed by the professional that their child has speech apraxia. Here’s the thing, the child does not have autism AND an inability to produce words. In the vast majority of cases, it’s part of that child’s presentation of autism, not a separate diagnosis.

This story is my analogy for how this mysterious condition can be best understood:

I can’t play the oboe. I probably never will. But, if I wanted to, it would probably take, like, 6 months just to be able to produce a single note. Then, maybe after 1 year – if I practiced every day – I might be able to play Three Blind Mice. Poorly.

My brain did not come preprogrammed with instructions about the correct embouchure to play a double-reed instrument (or any wind instrument, for that matter). So, I would have to practice that movement of my lips. My lungs were never used to delivering short blasts to fine-tune output. I would have to practice that, also. Then, I would have to figure out some way to combine a number of physical feats at the same time in order to deliver that first squeak.

It wouldn’t matter how many times my teacher told me to play a song. It wouldn’t matter if she raised her voice and implored me to do a better job. Perhaps a different teacher would get me more motivated? I might get frustrated with my lack of ability and stop trying for a while. I could start making horrible sounds just to make something come out, and then the teacher would say that I’m not trying or I’m doing it wrong. Instructors would become very disappointed if I started to bang on surfaces with the oboe – just to make any sound come out.

That is exactly how it must feel for children with ASD who cannot speak. When a neuro-typical infant starts to babble and imitate words, it is because they already have human speech hard-wired into their cerebral cortex. Toddlers don’t think about, or really even practice speaking. It just comes.

Think how much more work it takes for a young child to let the caretaker know that they want juice, if they cannot speak. Infants simply cry and the parent offers a variety of choices until they hit on the correct one. Later, certain cries indicate a desire for food, not a toy. Without speech, a toddler pulls the adult to the refrigerator or opens it himself in order to communicate his wishes.

The child is not simply being lazy. It would be much easier to do it the way the typically-developing sibling does… “JUICE” or “Juice, please” or “Mommy, I want juice!” The parent who says “I know he can speak ’cause he does it when he wants to,” is missing the point. That is what makes the child normal – we all do what we can when we want to, to the extent that our abilities allow. The ASD child speaks when he absolutely must, and then only when every circuit is working correctly.

Likewise, for language to increase, pathways need to be laid down so that the activity can take place as part of a much more complex social environment and therefore more often and (hopefully) appropriately. Then, the electricity has to flow so that the circuit is completed and results in the correct sequence of events. It takes practice, desire, and an ideal set of circumstances. Many times, parents report that their child said some complex combination of words and ask, “Where did he/she learn that?” Well, they are apraxic, not deaf.

By getting a patient in the best physical condition, the routes can be laid down. By supplying enough cellular energy, the circuits fire. By supplying S&L, OT and ABA, the child gets to practice. Parent’s love and encouragement supplies the desire to try. That takes a great deal of work by all parties involved.

I will never play the oboe, but, thankfully, the majority of ASD patients eventually speak (in practice, the number is even higher because of the younger age of diagnosis and appropriate interventions). Of course, that is just one part of their complex story. The goal is not to play solo, but to be part of a symphony.

Speech Apraxia and Autism Misbehavior

Sunday, May 7th, 2017

This week (May ’17), Penn State researchers claimed to have disproven a generally-accepted premise with an article is entitled, Tantrums are Not Associated with Speech or Language Deficits in Preschool Children with Autism.

The Study
The authors retrieved information from a previous data collection, which was not intended for this purpose, and reviewed 240 cases. Children, who were 15 to 71 months old, “… whose mental age was sufficient for verbal communication but who lacked speech did not have more tantrums than children with adequate speech. In fact, children with an expressive language age at or above 24 months had more tantrums than children whose speech skills were below 24 months.

Their conclusion is the exact opposite of what we all suspect. “Our findings and those of others do not support the belief that preschool children with autism have tantrums because they cannot speak or because their speech is difficult to understand.”

Discussion
In autism, THE toughest sign to successfully ameliorate is a patient’s inability to produce spoken language. Indeed, professionals who have chosen this undertaking will attest to significant challenges. Proven medical protocols are few, though anecdotal ones abound.

The second most difficult expression of ASD is immature conduct, including tantrums. Behavioral intervention is the proven successful treatment. Conventional medical protocols invoke potent pharmaceuticals with significant side effects and variable results, so alternative strategies have emerged.

For years, parents and professionals, alike, have accepted a direct relationship between these two disturbing symptoms. There appears to be general agreement that, as children get older and smarter, they are increasingly frustrated by their failure to adequately communicate. There is a 30-year body of literature that supports this position.

Why were the findings of this paper
so counterintuitive?

This perspective is supported by substantial research, as well. The authors argue, “The reason may in part be because of the effectiveness of interventions… which use behavioral techniques to teach children to use words, and not inappropriate behaviors, to communicate.”

In other words, if language improves through successful therapy, a child may still have tantrums if that issue is not addressed, per se, as well. Those patients who do not get adequate socialization skills continue to resort to outbursts, in order to get needs met.

The publication lacks several key elements. ‘Tantrum’ is used as an outcome measure, begging the question of whether more serious issues, such as self-injury or aggression, were considered in the definition. Medication usage was not documented. Perhaps, patients who were most disruptive received more drugs without relief or even negative side effects? Additional medical issues were, likewise, omitted from the data. In the diverse ASD population, this could be a highly significant variable.

Conclusion
The outcome of this paper could have been that children who have better language skills are more likely to have tantrums! The authors were careful to leave that out. Plus, the closing sentence includes, “Our findings do not diminish the importance of evidence-based interventions…”

If, as the paper asserts, the reason for fewer tantrums was an individual’s type of intervention, then the conclusion seems to be that Functional Communication Therapy is useful for tantrums due to autism.

Or, one might deduce that each individual diagnosed with ASD is so different in their physical and mental state, that there is no certainty, at this time, to explain why this group showed a null relationship.

Is it true? Could tantrums, “… in large part be intrinsic to autism and not driven by developmental processes, such as language.” Is it important? Why? Perhaps, such insight could provide a more effective and efficient window of treatment options. Furthermore, there is general agreement that traditional measures can play an important role in remediation.

Stem Cell Therapy for Autism… cont’d

Sunday, April 9th, 2017

As doctors try to understand and consider various emerging therapies for patients experiencing signs and symptoms of autism, the question of Stem Cell therapy has come to the fore. A Duke University professor barreled onto the scene, recently, with a pronouncement that sounds like a cure, even though it’s not.

Understanding the study
The project is Clinical Trial to Evaluate the Efficacy of Umbilical Cord Blood to Improve Outcomes for Children with Autism Spectrum Disorder. This was the first phase. The goals were to determine safety, and to evaluate the usefulness of a variety of tests to assess whether the treatment works.

Does giving a child’s own cells, which were collected from the umbilical cord at birth, back into their bloodstream, result in any adverse events? The report broadcast on CNN focused on a 7 year-old who seemed nearly OK, playing with her older, neurotypical sister. The treatment had taken place a couple of years earlier.

Dr. Joanne Kurtzberg, one of the researchers, proclaimed, “We saw improvements in 6 months…” She used the word curative twice in the same sentence, even though her point was ignorance of that outcome. She concluded the interview with, “of course we have to do a placebo controlled randomized trial to answer the question…” The Dad was more realistic, as he commented, “The autism is still there…”

The research involved 25 children, 2 – 6 years old, who had banked cord blood available. “Significant improvements in children’s behavior were observed,” in the majority of children, and “were greater in children with higher baseline nonverbal intelligence quotients.”

“Assessment of adverse events across the 12-month period indicated that the treatment was safe and well tolerated,” claims the abstract. In fact, agitation was a common complaint, requiring additional medications, as the infusion was administered. The authors admitted, “As an uncontrolled open-label study, it is not possible to determine whether the observed behavioral changes were due to the treatment or reflect the natural course of development during the preschool period.”

Discussion
When considering such an extreme treatment, the primary driving force should be the child’s degree of involvement with their developmental challenges. If your youngster is proceeding on an acceptable trajectory, 1) Is it worth the known, and unknown, risks? and, 2) What improvements are you actually seeking? In this study, as in other successful biomedical protocols, the less-affected patients showed the best improvement.

This investigation was done under rigorous conditions by highly trained university personnel, and utilized the patients’ own cord blood. Do stem cell centers around the world offer a similar degree of confidence as regards cleanliness, safety, follow-up, or the ability to handle emergencies? Are outcomes the same when using fat cells that have been turned into stem cells (explained in my previous blogs on this topic)?

The type of autism has got to be a factor, as well. Would a patient with a significant chromosomal variation or metabolic disease, for example, experience the same improvement?

On a positive note, it is encouraging to observe that the conventional research community implicitly concurs that successful treatment involves “modulating inflammatory processes in the brain addressing the reduction of body inflammation to improve ASD.”

Conclusion
We all wish to see a real breakthrough in autism treatment. It appears that stem cell therapy may represent a significant advance. But, that is all that it will represent. Children will still have yeast, and need follow-up labs, and ABA, and Speech therapy. Stem cell intervention seems to represent another, maybe better, certainly more costly, alternative protocol.

Thankfully, Phase II, a randomized, controlled study to assess efficacy, is now underway.

ADHD Medication Guide

Sunday, January 8th, 2017

As the academic season becomes more challenging, The Child Development Center is often asked about the various pharmaceutical preparations that are suggested by doctors, behavioral and academic personnel. Specific medicines are frequently prescribed for symptoms that include poor focus and attention, hyperactivity, distractibility, fidgeting, not listening, a short fuse, and lack of self control.

As parents ponder this important decision, here is a useful list to improve understanding and address frequent concerns, in decreasing order of potency and side effects:

Prescription
Methamphetamines

Names: AdderallDesoxynAdzenysDianavelEvekeo, Dexedrine, ProCentra, Zenzeti
Plus Lisdexamphetamine (Vyvanse)

Class – Stimulant, Amphetamine
Comment: These were the first generation of stimulants. They are the most addictive, bring about appetite suppression (‘diet’ pills), create sleep disturbance and growth suppression. Families should consider using these when less potent preparations fail.

Methyphenidates
Names: Methylin, Methylphenidate, Ritalin, Concerta, Daytrona, Quillivant, Quillichew, Aptensio
Plus Dexmethyphenidate (Focalin)

Class –  Psychostimulant, Methylphenidate derivates
Comment: There are actually only two choices in this category, as well. The theory of using stimulant medications for ADHD is that affected patients experience a paradoxical reaction to the invigorating effects that neurotypical individuals would sense.

From a chemical standpoint, all of these names pare down to just 4 compounds. They share these common features:
DEA – Class Rx Schedule 2. Therefore, your doctor will be very careful about documentation and prescription handling, and will require followup visits.
The choices here are usually driven by the formulation; available as a liquid, chewable, patch, pill, or capsule configurations.
Plus, manufacturers offer a myriad of confusing dosage options; from 1, to multiples of 5, to multiples of 10, to multiples of 18 milligrams.
When the medications start to wear off, there is often an increase in negative behaviors. For this reason, dosage and frequency are crucial to produce the most effective amelioration of symptoms.
However, insurance companies have become very restrictive in the preparations that they will cover, and out-of-pocket costs are high. When trying to achieve the optimal medication schedule, such stipulations complicate making the best clinical decisions.
The medical risks of any of these preparations include a myriad of cardiac maladies. The AAP no longer recommends a pediatric cardiology evaluation. This is not a good idea, and once a patient demonstrates that they will continue to take these prescriptions, The Child Development Center refers to the appropriate specialist.

Atomoxitine
Names: Strattera
Class – Non-stimulant
DEA Class – Rx
Comment – Frequently vaunted as THE ‘non-stimulant ADHD medication’. Besides an increased risk of suicidal ideation, significant growth inhibition and sudden death, in my experience, it has never been a useful choice. Really, don’t bother with this remedy.

Phosphatidylserine
Names: Vayarin, PS 100
Class – Non-stimulant
DEA Class – Medical food
Comment – The active ingredient is a natural fat that is supposed to aid cell-to-cell communication in the brain. The name brand contains an omega 3 oil, and requires a prescription. The over-the-counter product might be preferable if the patient is allergic to fish or soy.

Non-Prescription Stimulants
Despite a 2004 study that demonstrated that nicotine was equivalent to methylphenidate in ADHD symptom reduction, the practice has not become popular due to the inability to control the patch dosage and skin discomfort. However, the effects of caffeine may provide a reasonable alternative. At The Child Development Center, pure caffeine is chosen over coffee, tea or other products that contain a multitude of other ingredients, in order to objectively assess the results of administration.

Conclusions
1. The most important factor in deciding on treatment is a precise diagnosis, which requires a thorough history, physical examination, and appropriate laboratory testing. A doctor cannot simply look at your child and declare that they have ADHD.

2. Medication administration continues to be offered to younger and younger children. Deferring pharmaceutical intervention can mitigate against the most significant side effects.

3. When stimulants are initiated, it is not unusual for parents to observe that, either the med doesn’t work quickly as expected, or that the child acts like a ‘zombie’, or that the child exhibits even more hyperactive behaviors.

4. Although this guide is presented in order of medicinal ‘strength’, whether a product works depends on a myriad of factors. Preparations that are lower on the list may be far superior to more potent formulas. Plus, the mere observation that the child is sitting still does not necessarily reflect that real learning is taking place.

5. Research continues to demonstrate that appropriate behavioral therapy is a useful and effective treatment.

Autism Literature Review 2016

Sunday, December 18th, 2016

In the face of an exploding incidence of childhood developmental abnormalities, scientific knowledge is sorely lacking. These are my top picks for the most useful human research that improves our understanding about the cause(s) and treatment(s) of these conditions.

Genetics
The Journal of Developmental Behavioral Pediatrics published research that demonstrated, “… ASD rates were 11.30% and 0.92% for younger siblings of older affected and unaffected siblings, respectively… Risk remained higher in younger boys than girls regardless of the sex of affected older siblings.”

Environment
As the Zika virus epidemic has emerged, new research has appeared, noting Aerial spraying to combat mosquitoes linked to increased risk of autism in children.

Incidence
A new study was published documenting the increased incidence of ASD in preterm births. “These results can be used to help show the importance of adequate prenatal care to help reduce the prevalence of preterm births, which can hopefully help to reduce the prevalence of ASD.”

Diagnosis
Appearing in this year’s literature was an article describing a new blood biomarker for autism. “In this discovery study, the ASD1 peptoid was 66% accurate in predicting ASD.”

General health
Perhaps not surprisingly, a recent study documented significantly shorter life span for patients with ASD. However, the reduction was an alarming 18 years.

Biomedical Treatments
The credibility of diagnosing medical issues and addressing abnormalities in systems throughout the body was boosted in an article by Drs. Frye and Rossignol (president of The Medical Academy of Pediatric Special Needs). This year, I achieved fellowship status in that learned body of clinicians.

Nutrition
Low vitamin D levels are ubiquitous in the practice of Special Needs Pediatric Medicine. Breastfeeding moms should supplement. The problem may stem from low levels in the Mom.
For those skeptics who ask, “What do vitamins have to do with ASD?” there is this study, Randomized controlled trial of vitamin D supplementation in children with Autism Spectrum Disorder.

Speech
Using high dose folinic acid may provide significant relief for our patients who suffer from speech apraxia. The main challenge is acquiring the supplement at an affordable price.

Early Intervention
In spite of last year’s US Task force on Autism declaration that early screening is not warranted, research in November’s Lancet concluded, “long-term symptom reduction after a randomised controlled trial of early intervention in autism spectrum disorder.”

Prevention
A study in the Journal of the American Medical Association concluded, “Use of antidepressants, specifically selective serotonin reuptake inhibitors, during the second and/or third trimester increases the risk of ASD in children, even after considering maternal depression.

In June, evidence supporting an another pharmaceutical connection to autism was presented. “Prenatal acetaminophen exposure was associated with a greater number of autism spectrum symptoms in males and showed adverse effects on attention-related outcomes for both genders…”

Conclusions
Why does it seem to be taking so much time for useful human studies to appear? Dollars for basic research depend on funding agencies’ understanding of this enigmatic condition. Plus, it takes more than a billion dollars to develop any new medication, so ASD is a very risky proposition.

Then, there is the Bettleheim effect (he popularized the ‘refrigerator mom’ theory), the Wakefield effect (any new idea about autism becomes suspect), the vaccine effect (just talking about ASD leads to this controversy), and the continued debate about whether there even really IS an epidemic.

However, practically everyone, nowadays, knows some family that is touched by this developmental disorder. We must continue to hope that progress will accelerate in response to the reality of a condition that affects so many of our children.

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.

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Brian D. Udell MD
6974 Griffin Road
Davie
FL 33314
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Email bdumd@childdev.org
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