Archive for the ‘Sleep’ Category

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.

Getting the Most from Behavioral Therapies

Sunday, March 26th, 2017

The ever-increasing number of children who experience significant developmental problems requires a proportional addition of skilled professionals for assessment and intervention.

At The Child Development Center, we have noted the emergence of certain patterns of treatment choices. Intelligent, involved parents express their concern about the paucity of well-trained professionals, the cost of treatment, the lack of insurance, and frustration with the speed or course of their child’s progress.

Applied Behavioral Analysis
The general consensus is that the proven protocols of behavioral intervention are most likely to result in significant symptom reduction in patients with ASD. As reported in the 2001 publicationEducating Children with Autism, “teaching parents how to use pivotal response training as part of their applied behavioral analysis instruction resulted in happier parent-child interactions, more interest by the parents in the interaction, less stress, and a more positive communication style. The use of effective teaching methods for a child with autism can have a measurable positive impact on family stress. As a child’s behavior improves and his or her skills become more adaptive, families have a wider range of leisure options and more time for one another… To realize these gains, parents must continue to learn specialized skills enabling them to meet their child’s needs.”

Why does utilization of ABA lag behind other treatments
in so many regions around the country?

The prevalence of children with autism is outstripping the number of qualified, interested therapists. Economic pressures appear to dictate direct provision of services by paraprofessionals who are properly supervised. Therefore, the most efficient providers frequently observe, evaluate, and mentor the less-experienced staff. For-profit companies may find such practice difficult to maintain.

Insurance companies regularly find a way to weasel out of their commitments, many times in spite of outside mandates or even advertised benefits. Denial of payment for services may take the form of incorrect coding, credentialing, and timeliness of payment. Providers are, therefore, less likely to accept their (lack of) coverage.

There are a variety of types of behavioral intervention; including DTT, EIBI, PRT, VBI, DIR, TEACCH, OT, Sensory Integration Therapy, Speech Therapy, and PECS. Devotees of each claim superiority of their strategy. Such a smorgasbord may confuse even the most attentive parent.

Discussion
Recovery from the major challenges that accompany an autism diagnosis is an exhausting journey for the whole family. Traditional therapies are the proven tools to enable a successful transformation. They are an important consideration that must be offered to every patient. Parents should use their common sense, plus their unique understanding of the child, to assess whether the plan of action really applies. Does the suggested intervention make sense? Does the child ‘click’ with the therapist(s)?

When professionals continue to insist that 1) you are not doing the right thing at home or 2) your child can’t improve in some particular function, it’s imperative to seek additional assistance. Maybe the provider is correct, but little progress will occur if the parties continue to debate.

I often advise parents who are concerned about some ‘magic’ 25-40 hour ABA requirement, that a good OT, or PT, etc., has learned to be effective by utilizing a variety of techniques. Therefore, you can add up the various interventions, and will frequently find that you don’t need to feel guilty about that numeric stipulation.

As children improve, the challenges of proper socialization and self-control become the most difficult and lingering concern. This may require an entirely new and unique skill-set to come to the fore.

Conclusion
All interested professionals; including chiropractors, acupuncturists, alternative and traditional practitioners, can be important members of the village trying to get your child on the right track. Because the present state-of-the-art is in such flux, the correct combination of traditional and alternative protocols provides the best chance for a successful outcome.

A(nother) Laboratory Test(s) for Autism

Sunday, March 19th, 2017

A key piece of the autism puzzle appears to have been confirmed in an article published this week in the Public Library of Science Open Access Journal, Computational Biology. The title of the article is Classification and adaptive behavior prediction of children with autism spectrum disorder based upon multivariate data analysis of markers of oxidative stress and DNA methylation.

The news has already been reported in popular media as “A Blood Test for Autism“. Here is my clinical interpretation.

The Study
The data was collected from patients in previous studies, and included 83 children, aged 3-10 years, with ASD. Utilizing very dense, complicated statistics that were based on biochemical laboratory data, researchers identified neurotypical vs. autistic individuals, who already had the diagnosis, based on conventional developmental testing.

The chosen pathways evaluated abnormalities in methylation, an epigenetic function, and detoxification.

Specificity and sensitivity were very reliable, “96.1% of all neurotypical participants being correctly identified as such while still correctly identifying 97.6% of the ASD cohort.”

Discussion
Contrary to what the headlines proclaim, this is not a single test; it’s research material that is based on a number of not-yet-readily-available laboratory findings.

The biomarkers represent a final common pathway, not necessarily a cause. Although the data correlated with autism ‘scores’, it really wasn’t meant to discriminate for the various kinds of developmental challenges, such as those children who are mostly aggressive, immune, apraxic, or suffer gastrointestinal abnormalities.

Such an analysis begs the question, “Can it be used for prospective improvement – to follow course of the condition?”

Conclusion
The modern epidemic of childhood autism is extremely complicated and difficult to pin down for research purposes. This study renders a modern means to evaluate a myriad of variables. The metabolic pathways under scrutiny represent a confirmation of the roles of genes and toxins.

As with other ‘earliest diagnosis’ studies, this paper serves to solidify the concept that earlier diagnosis should lead to earlier interventions, with improved outcomes.

For those of us who are practicing ‘alternative’ medicine, it is comforting to rediscover that the treatments included in our modern arsenal of biomedical protocols are consistent with these findings.

Observations on an Autism Workshop

Sunday, March 5th, 2017

March 5, 2017.
Yesterday, I had the opportunity to be part of a panel for the South Florida Autism Charter Schools‘ medical workshop. In attendance were ~50 parents, and a group of 9 professionals; including dentists, a pediatric neurologist, an Ob-Gyn, a pediatrician, a psychologist and behavioral therapist.

My role was to answer questions regarding the biomedical approach to ASD.
Here are some of the things that I learned:

Parents are extremely frustrated by the lack of available services for special needs patients. “He’s too big for our MRI machine,” or “They do not know how to handle her aggression,” were common complaints. Frankly, the presenters had few useful suggestions that the families hadn’t already attempted.

Therapists and administrators wanted to be sure that parents take advantage of all available means for relief, such as following up with a medication schedule, and notifying appropriate personnel about serious issues in a timely manner.

There was a general dissatisfaction about the medical community’s lack of understanding regarding special needs families. Since the panel was composed of busy professionals willing to give up a Saturday morning, they were basically ‘preachin’ to the choir’.

Everyone agreed that the ideal situation would be a ‘one-stop shop’ for patients to get all necessary testing and treatment. Cancer Treatment Centers of America, for example, advertises that availability, and many facilities now afford such service. It may be some time before supply catches up to the demand, for special needs children, however.

I enjoyed an in-depth discussion with Dr. Jose Berthe about the proper time, types of evaluation, and medical interventions, as girls with developmental challenges get older.

Dr. Yadira Martinez-Fernandez contributed her comprehensive knowledge of autism and cardiac health. Affected children who suffer genetic or other complicated disorders, or who take certain medications, may be at an increased risk, which can be ascertained by appropriate evaluation, such as blood pressure monitoring, or an EKG.

The dental experts reviewed their approach to oral health; from how to get a successful visit, to evaluation and treatment of the common symptom of teeth grinding.

Dr. Carrie Landess provided her unique perspective and valuable insights, as a pediatric neurologist who is also the parent of a child with ASD.

My good friend and colleague, Dr. Linda Colon, offered several practical solutions for the challenged families’ concerns. The general pediatric community would find a great deal more cooperation from families, were they to adopt her thoughtful and empathetic point-of-view toward the autism epidemic.

Dr. Moodie, the Executive Director, is a fireball. Her experience, knowledge, insight, and dedication is leading to tangible changes in the care of children with developmental difficulties.

Conclusion
Parents want – and deserve – more answers, better service, and faster roads to improvement for their special needs children. The South Florida Autism Charter School is doing a great job in providing a tangible means toward those ends.

Processing Disorders are Autism

Sunday, February 12th, 2017

With all of the professionals who care for individuals experiencing signs and symptoms that are presently classified as ASD, it isn’t surprising that the organization of problems reflects the point of view of each discipline.

To the extent that nomenclature describes identifiable, clearly understood pathways, it can improve our understanding of function (or the lack thereof), as it relates to structure (but not necessarily vise-versa). Often, however, researchers utilize long, complicated terms that merely restate the obvious. Such designations may not provide additional insight, which is sorely needed if we are to reverse the named condition.

Selective eating disorder = picky eater

Visual processing disorder = sees things differently

Auditory processing disorder = hears things differently

Sensory processing disorder = feels things differently

Oppositional defiance disorder = responds to everything the opposite way

Attention deficit disorder = won’t focus on non-preferred activities

Hyperactivity disorder = can’t sit still

ADHD = both of the above

Sleep disorder = takes longer to fall asleep, wakes up frequently, or both

Social anxiety disorder = uncomfortable around others

Obsessive compulsive disorder = repetitive behaviors and restricted interests

Cognitive processing disorder =?Executive functioning disorder = ?Motor planning disorder = ?expressive language deficiency = ?receptive language disruption = ?doesn’t (appear to) learn/listen/remember.

Discussion
Each of these labels accurately reflects some condition frequently experienced by individuals with ASD. Professionals may utilize such information to address a patient’s issues, but it can be quite confusing when complex jargon is invoked to explain an intervention to the family.

“Why is my child exhibiting this aberrant behavior?” Until much more research identifies actual, measurable, specific physiological states, my response is, “Signals sometimes go to the right place and can perform the appropriate function, the wrong place and lead to an incorrect response, or just bounce around and diminish.”

At least, an understanding about, and explanation of, similar terms utilized by other disciplines would ease parents’ concerns that, “Somebody missed something,” about their child.

Conclusion
I recently spoke with a mom who was told about a feedback loop issue in her child with motor planning deficiencies and sensory processing difficulties. Each therapist provided a valid diagnostic label. I suggested that she focus on the skills required in order for her 4 year-old to play with other children.

Rather than invoking esoteric, complicated language as to theoretical cause, the focus should be on assisting patients’ ability to achieve required skills, such as spontaneous speech, self-control, eye contact, motor proficiency and socialization.

Smooth, efficient processing between our body and brain is the goal. In human development, when systems fail to mesh in the correct fashion, what we observe is called autism.

Good Doctors for Autism and ADHD

Sunday, January 15th, 2017

The Best Autism Doctors has been a popular story on this website. My point was that patients need a competent clinician, and that ‘BEST’ is not necessarily relevant, necessary, or attainable for each child. Considering these issues will help a parent make a more informed decision.

All doctors
‘Good’ doctors thoroughly address your specific problems, so their knowledge and abilities are of upmost importance. Patients expect a clean, well-run office, with friendly, competent, respectful staff and up-to-date equipment.

We want caring clinicians who give us the time to explain our problems and really listen. Patience is key. We expect calls to be returned, especially regarding test results – with kind, compassionate responses. We want to be able to refer this professional to others.

Autism specialists
The qualities that make an effective doctor for patients with ASD and ADHD should also include the following:

Adequate observation by the treating physician. Remember, if you’ve seen one child with autism… Personnel trained to recognize ASD may not necessarily consider metabolic or gastrointestinal conditions, so collaboration with the doctor is paramount.

Up-to-date labs, individualized for each patient, with regular testing should be performed. A recent study demonstrated that traditional specialists  “… fail to order tests that should be routinely performed and often order tests that are not routinely indicated yet are neither benign nor inexpensive. Recommended molecular genetic tests are often not ordered.”

Doctors who successfully treat patients with ASD have an extensive education, experience, and devote the time to rigorous continuing education. For parents wishing to go to the ‘best’ autism doctors, membership in the Medical Academy of Pediatric Special Needs should be prerequisite, until some better medical society comes along.

Especially regarding the expenses associated with an autism diagnosis, supplements need to be made available at a fair price. There are thousands of products that claim better toleration, improved absorption, fewer side effects, etc. Your ‘good’ clinician is best suited to make the correct choice. Also, there should be a willingness to explore alternative preparations that make sense.

Interventions that are tailored, not only to a patient’s symptoms, but reflect underlying, treatable problems. As one protocol fails to demonstrate effectiveness, the approach should be altered – sometimes frequently. Professional explanations, appropriate literature, and use of web information goes a long way to reducing the confusion of this difficult developmental diagnosis.

Close follow-up of the clinical course, response to treatment, and childhood development can fashion an improved outcome. Therefore, some method of reasonable response time to emails, phone calls, etc. is an important feature.

‘Good’ doctors show a willingness to collaborate with the traditional therapies and therapists. An experienced staff, who frequently are well-versed in autism, can be a great resource regarding such advice. Parents frequently have questions about issues, from academic environments to alternative treatments.

Regarding the use of supplements and medications, “starting slow and going low,” offers the best opportunity for the parents – the patient’s expert – to report positive and negative results. Complex and/or confusing protocols may lead to more negative results than necessary. Parents should understand specific directions, with as few changes as possible prior to instituting another shift.

‘Good’ autism doctors advise about the efficient use of resources. There are a myriad of interventions, from affordable and readily available vitamins, to expensive hardware and complicated procedures. Due to a paucity of repeatable research, the doctor who studies all possibilities, and understands a family’s resources, can give the best advice. Also, referral and willingness to collaborate with appropriate medical sub-specialists will streamline the process of recovery.

Conclusion
Indeed, even the BEST autism doctor may not be able to assist a severely affected patient. Understanding and effectively treating speech apraxia, repetitive thoughts and behaviors (scripting and stimming), and aggression may be beyond our science, at this time.

This does not mean that parents should not continue to search for better treatments, but that a reasonable workup by a competent, caring clinician who persists in exploring ongoing problems may provide the most effective treatment available.

Becoming a good doctor for this mysterious diagnosis is not so much,
“Thinking outside the box.”
Successful results occur when professionals
Connect the dots • — • — •

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.

TheAutismDoctor’s Top Stories

Friday, December 30th, 2016

As I have previously explained, I produce this blogpost for 4 principle reasons; to learn, to teach, to offer a middle-ground, and to ventilate about the less-than-state-of-the-art medical care offered to patients with autism and ADHD. Here are my picks for 2016’s most useful stories:

January
In An Autism Prevention, we learned about medications taken during pregnancy that could be contributing to the autism epidemic. Pharmaceutical preparations that have become ubiquitous in this century are suspect. Reducing their intake could result in a decrease in the number of new cases.

February
Americans With Autism Act. This was my opportunity to blow off steam about a local fight to get a student with ASD the necessary and deserved services. The outcome was in direct conflict with decades-long evidence that ABA works.

March
I often give advice about the difficult problem with Speech Apraxia. This article lamented the sad state of affairs regarding scientific identification of the problem, let alone workable solutions.
(Happily, this situation has been somewhat addressed in this recent, randomized study utilizing folinic acid.)

April
Vaccination Redux was this year’s best effort to explain my position on the childhood vaccination schedule. What can I say? The problem won’t be resolved by bullying or vaccine industry-supported research. BTW, I am not against childhood vaccinations.

May
Folate Issues. Folic acid has been in the news throughout the year. This story was about too much of a good thing, if taken during pregnancy. Obviously this vitamin, and the pathways that are involved, are very important to our understanding of the autism mystery.

June
The importance of Genetic Testing in Autism was my opportunity to spread the word that a modern medical workup should include appropriate laboratory testing, including a chromosomal microarray. The subject material is dense, but key to understanding one group of autisms.

July
Acetaminophen and Autism presented scientific evidence to warn about the casual us of this potential culprit. Four studies were made available, so pregnant women should take note, and seek more acceptable alternatives for relief.

August
In Digital Devices and Autism, I expressed my opinion to the frequently asked question, “Is it OK to give junior the iThing?” Children who seem to gain real academic benefit are few. Mostly, iStuff provides no imagination and no socialization, fueling core deficiencies in ASD.

September
Processing Disorders and Autism, crystallizes a decade of my understanding about this set of childhood developmental and physical disorders.
By connecting the dots about the various maladies that affect patients, such as sensory processing, GI problems, and low core muscle tone, we achieve a greater understanding about the causes, and downstream behavioral effects.

October
Just in case pediatricians haven’t noticed the epidemic, and because the US Preventative Task Force has recommended against formal testing, I continue to write at least one Early Signs post each year, to enlighten the unenlightened.

November
Medical school exposes students to very-little-to-zero information about alternative healing services; such as chiropractic, naturopathic, and homeopathic remedies. This story was about my research and experience as relates to the turmeric plant. Its antioxidant properties have helped our patients with gastrointestinal, behavioral and even developmental challenges.

December
A bit of levity. I have spent months perfecting the 12 Days of Autism Christmas.
Perhaps, next year I’ll attempt to furnish new lyrics for Dreidel, Dreidel, Dreidel.

Conclusion
This is TheAutismDoctor’s year-end opportunity to rediscover the polarized world of Special Needs Pediatric diagnosis and treatment. My articles take a great deal of time, study, and thought. So, they are all important to me, and should be helpful for families and professionals, as well.

Practicing Pediatric Special Needs Medicine

Sunday, December 11th, 2016
staff2016

(L-R) Karen, Lisa, Dr. Udell, Isabella, Dr. Sherry, Ashly (Front) Julian & Jovi

I’m not a big fan of posting patient testimonials. Fake news is in the news, and it’s pervasive. Plus, it seems unlikely that any practitioner would post negative information about their own practice.

On the other hand, many Googlers, my wife included, see such information as valuable insight into how the doctor practices. Readers may gain confidence that a visit could be a worthwhile pursuit. Here is a sample of this year’s correspondence at The Child Development Center:

Feeding
It is now 4 weeks since she started accepting solids foods, both during feeding therapy and at home. I was so exited that I decided to lower her puree intake as the days kept passing; to the point she was on straight solids for the past 2 weeks.
She is also talking way more than ever, which it is also a change that occurred at the same time she started eating solids. She is expressing herself in 2- 3 word sentences.

We are happy that the unusual behavioral issues receded and please send us the gluten-free letter so the nurses office can have it on file as they need it.

Speech
My child is doing well. He started singing and talking more, but his stomach is bloated for a few days already, any suggestions?

Yes, she is babbling more and using more consonant sounds.

She is doing well in her ABA and lets talk program.  She is reading short phrases and spontaneously saying one to three words with some cueing.  Saying more than 50 words and singing a bit.

She is babbling more and  is now mimicking certain animal sounds…in her own way. 🙂 She  is  also practicing no and is babbling a lot under her breath. She is not saying any words consistently, but I feel like we’re almost there.

I have amazing news to report. I am not sure if it is coincidence, but I put him on a very strict Gluten free/Casein free/Soy free/Sugar free diet this past Saturday he started talking!!!! He is mostly repeating when I prompt him, most of the language is prompted and a lot of it is not completely clear, you can make out what he is saying though. Very similar to when a child first starts talking. He has said in excess of 70 new words in the past 2 days, not including words he is repeating!!!! I am so excited.

The child is saying Mom and Dad in context!!!! She’s been  practicing both for a few days and now says it when she sees us…

Methyl B12 injections
That would be great if you could check if we previously tested for MTHFR. If not, I think I’d like to test for it… Also is there a way to further check for B12 deficiency?

She is doing great with her b12 shots in combination with folinic acid. I noticed improvements after the first shot.

Naltrexone
… We also decided to continue with the LDN because we believe it’s working. It seems as most of the remaining “fog” has lifted, he’s more social, more aware, has better eye contact and his processing seems better (even though there’s still room for improvement)…

He has been taking the Naltrexone nearly a month now. I do see improvement as far as expression and vocalizing full sentences when asked a question. I also feel his vocabulary has also expanded.  It may not be drastic but I feel he has improved since he has been taking the Naltrexone.

We are at 6 weeks of LDN. This has been the key it seems like. It seems in the past week vocabulary has been off the charts! It’s great! One thing I can recommend is the pharmacy makes a big difference.

Health
Just wanted to let you know that my child is doing great. I noticed his cholesterol finally went up to 157. He is labeling now, he started asking with his words for juice, cookie, outside etc. every day a new word. The school therapist came out to tell me how he is like a different child. He is responding to give me hi fives. I just wanted to thank you for bringing him back. He is such a smart little guy and I can see his little personality emerging. He is even fighting back his big sister when she takes his toy away.

I think he is doing well with the Levothyroxine 37.5 mcg. Maybe you can ask for 25mcg 2x a day so they don’t give me 50mcg pills. 

Started NAC 2 weeks ago. First week with 1 capsule. She responded very well. We noticed increased receptive skills, more independence, increase ability to answer questions and more spontaneous speech. She also has not had any accidents since we started (potty). No negative behaviors or stimming was noted. I started 2 capsules on week 2. First day great. Second day increased irritability… 

I had this urge to share this info with you this morning, partly because it’s so positive and also because we are seeing things we’ve never seen, since he’s been on the Vyvanse.  The picture is of him playing soccer with his dad this morning, after he made his own scrambled eggs for the first time. This is a first!
He just seems a lot more motivated and wants to do more things.
In general, a lot of improvements to celebrate. The downside, which you did mention to me were all spot on. For him it’s loss of appetite (positive, oops) and also he is very emotional. Any little issue can set him off and have him in tears.
His teacher briefly mentioned seeing improvements too, more calm and focused.
So, so far so good and I feel like I made the right decision in giving meds a go.

Following your advice, I asked the neurologist to do a new VEEG. Guess what..! You was absolutely right…! He’s still having seizures internally, even though they’re not perceived to the eyes…..the activity is mostly coming from his brain left side… The doctor also asked me for your email address to get in touch with you and provide you with more detailed information…Ps. I feel blessed for having you as my son’s doctor…

Sleep
Clonidine did not work in keeping him asleep. We tried it for 2 weeks with no success. Discontinued. Benadryl with melatonin is what we’re giving him now. It helps him fall asleep very easily, although kept him asleep about 50% of the time. He’d wake around 2-3 am looking for mom or dad and have difficulty falling back asleep. We’ve started locking him in his room at night after bedtime routine (with melatonin and benedryl and picture schedules) and he’s stayed asleep the last 2 nights! 12 hrs last night! Fingers crossed for continued success.

He slept all night and is happy and full of energy today. Thank you!

Sensory
I wanted to tell you what the child did today. Taking him for a haircut is a horrific experience. We are all on the floor holding him down – 4 of us- while he struggles and screams. It has always been like this. Well, today, I took him myself to the barbershop… He walked in and went right to the chair and got up there and put the apron over his lap.  I sat down and pretended to read magazine. Praying!   The two barbers ( one cut, the other stood in front of him) and started using clippers. He sat there and did great!!! 15 minutes total – we were in and back out in the car!!  I never even got up out if chair!!  A miracle!   Hair looks great!!  Can you believe it!!  I’m so thrilled!!

He is actively engaging all his OT/SP skills daily to which EVERYONE that knows him is astounded by the change in him.

You don’t have to write me back but from the first day,  Neuroprotek has made a difference! I’ll keep you posted,  thanks so much. 🙂

Yeast
He’s back on diflucan for almost 2 weeks now and overall much better.

We have seen tremendous improvement since starting the Fluconazole last week. The child has been more engaged and is no longer stuck in his room playing with only his trucks. He is much more vocal, interactive and responsive to his environment and we have had many playful back and forth conversations and games with him. His articulation has improved also, and I can understand him again. He is talking more, initiating more and analyzing his surroundings and comments from other people in the house!

He is doing a lot better!!!! His stomach seems to be much better anyways and much happier guy overall. I actually got the diflocan filled only today so I will touch base in the next few days. I love you all and I’m so grateful that my child is in the right hands now and on his way to great things.

Poop
Ever since we started the vitamin c , his poop is soft and easy to push out.

… Our child has been doing quite well. She is now TOTALLY potty-trained and is doing well at her new school which is accommodating her in inclusive classes. So now we are focusing on her speech. 

She had a great soft BM within just a few hours of the first dose of the lactulose. She was so happy she shouted Yay! Thank you again Dr Udell!  We are so glad to have you in our life!

This evening he went to the bathroom. A full size sample. I attached a photo. (I get lots of pictures of BMs).

Education
Sending you some pictures of the homeschool room.  We started on 1/4/16.  My child was able to sit through 3 1/2 minutes of calendar time on that day.  As of today, she is up to 19 minutes of calendar time, with a goal for the year of 20 minutes.

The teacher told me today that for the first time he asked for water, fully engaged with the class and the activities, play in the kitchen – he made pizza and served his classmate, fully verbal interact… she put tears in my eyes.

Just wanted to send you a video of him reading (“memorized”) the brown bear book. He’s talking a lot and wanted to share. Hope all is well.

Wanted to share great news. He scored above average in Reading Comprehension and average in Math. He was promoted to first grade with no issues. Next year he will be in a Gen Ed classroom for 90minutes, 5 days a week. He will also share specials and events with his Gen Ed class.
We would like to thank Dr Udell and his wonderful caring team! We feel blessed!

Guidance & Communication
Thank you for all your help and advice…

I will be so grateful thank you so much for all of your guidance and help my chid is doing much better each day and I know this journey is going in the right path.

Let me know your thoughts.  Thanks again Dr. Udell.  I am so grateful for your dedication and knowledge.

Dr. Udell – thank you for getting back to us so soon. I will communicate with the office tomorrow.

Thank you for always keeping my child’s best interest at heart.

Thank you for all you do for my little girl and for the rest of your patients!
I have referred you many times in past few months because I believe you are saving so many kids when no one else will.

You need to be a part of a contest for one of the highest quality websites
on the net. I’m going to recommend this site!

Conclusions
Of course, not all of our work results in such positive stories. However, by answering the calls and emails, and staying up-to-date with the science and the families, we continue to have an increasing number of children who experience improvement, if not complete resolution, of their childhood developmental challenges.

Many thanks to my amazing families, the patients, and our wonderful, caring staff.

Pediatricians and Autism

Sunday, November 6th, 2016

“I think that your toddler may have some signs of autism. That’s a complicated subject. I’ll give you a referral for…”

Sound familiar? Was that the first time that you heard what you (or your spouse) had suspected from a medical professional?

This story is not meant merely to ventilate. Education is the goal. The challenge is how to get an uninterested, overworked, under-reimbursed, skeptical group of intelligent individuals to pay attention. We are standing in the middle of the childhood epidemic of our time, and the professionals continue to worry that there aren’t enough vaccinated kids! It’s insane.

That was the ventilation part.

Education
At the first sign of a thyroid problem, e.g., a doctor doesn’t just send a patient straight to the endocrinologist. Rather, a baseline blood level is ordered, the results are evaluated in the light of the patient’s signs and symptoms. Next, the clinician is expected to explain all pertinent information, and refer to the most relevant specialist.

In the case of developmental delay, it seems that such a protocol is rarely followed. Even the expert (neurologist, or developmental pediatrician) seldom follows a prescribed course of action. An EEG and MRI? That depends on the family’s insurance status. Chromosomes or genetic testing? The usual advice is, if you aren’t having any more children, that won’t be necessary. Or, “The results won’t matter, anyway.”

External factors such as these should not be the determining factor in the 21st century workup of any patient, let alone a child whose growth is not proceeding in a normal fashion. A previous post details the top ten things all pediatricians should know about ASD. There is a workup to be done.

After a visit with the neuro-developmental doctor, a follow-up examination should take place with the ‘main’ practitioner, who ought to become the child’s medical advocate, rather than the parent. Pediatricians who believe that a family is ignorant or ill informed about the use of an off-label treatment need to learn more about all of the options, in order to assist the family in such decisions.

Discussion
This year (Jan-Nov, 2016), there were eight articles in The Journal of Pediatrics specifically about ASD. That is less than one significant article per month in our major pediatric publication.

Autism Spectrum Disorders and Metabolic Complications of Obesity
Autism and antidepressant use in pregnancy
New rapid autism screening test
Applied Behavior Analysis as Treatment for Autism Spectrum Disorder
To Screen or Not to Screen Universally for Autism is not the Question: Why the Task Force Got It Wrong
Predictive Validity of the Modified Checklist for Autism in Toddlers (M-CHAT) Born Very Preterm
Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability
Comorbidity of Atopic Disorders with Autism Spectrum Disorder and Attention Deficit/Hyperactivity Disorder

The best way to address this present state of outworn medical attention is to fund and publish more research. This involves a paradigm shift in the diagnosis and therapy of ASD. The condition is of multifactorial origins and consists of a variety of signs and symptoms that can be ameliorated.

Pediatric residencies must adopt a new clinical rotation for this important malady. Practitioners who do not believe that, in complicated medical conditions, their role should be ‘captain of the ship’, might consider other medical specialties that do not carry this type of obligation.

Conclusion
It is simply not enough for a present-day pediatric clinician to exclaim, “Well, I don’t know much about autism.” The preferable, and intelligent answer should be, “I’m going to have to do a bit of study about this condition. They didn’t teach us about this in med school, but it seems important.”

Perhaps parents can use this essay to inspire/challenge your doctors to develop a modern attitude toward this medical mystery.

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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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