Posts Tagged ‘autism puzzle’

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.

12 Days of Autism Christmas

Friday, December 23rd, 2016

On the first day of Christmas, my practice sent to me…

A bunch of kids who got better from ASD.

On the twelfth day of Christmas, my practice sent to me…

12 Who started speaking

 11 Picky eaters

  10 Toe walkers

    9 Happy flappers

     8 From foreign countries

      7 Poopy pictures

       6 Sensory seekers

    — 5 With ADHD

         4 Terrible tantrums

          3 Bad biomes

           2 Red rashes

and a bunch of kids who got better from ASD 😉

Happy Holidays, Everyone

With much love and hope from Dr. Udell
and the staff at The Child Development Center©

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.

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.

Curcumin for Autism and ADHD

Sunday, November 27th, 2016
Turmeric plant

Turmeric plant

Over the past year, The Child Development Center has been successfully utilizing a natural supplement (Enhansa®) that appears to be improving the health of our patients’ gastrointestinal system, body and mind.

The turmeric plant and its product, curcumin, have been the subject of a number of media reports, lately. How can the preparation help patients with ADHD and ASD?

Turmeric subsoil stems>powder>curcumin molecule

Turmeric subsoil stems>powder>curcumin molecule

What it is
Turmeric is part of the ginger family, mostly known for its role as the main spice in curry. Curcuminoid compounds are utilized to treat a variety of medical conditions; including auto-immunity in the blood, rashes in the skin, problems with the gut, parasites within the body, and disorders of the liver, kidney, and brain.

Why it works
Many doctors ask, “How can one chemical help so many diverse conditions?”
An emerging theme in the practice of modern medicine is the ability of an affected body part to heal itself. Such a belief has been central to other therapeutic sciences for a long time. In that paradigm, natural substances that promote repair are at least as important as medicines that attack a presumed cause.

Turmeric contains curcumin, which possesses antioxidant and anti-inflammatory properties. Given that the compound successfully accomplishes those tasks, improvements in the efficiency and function of any organ throughout the body should be understandable.

How it is administered
Various preparations have been marketed as the ‘best’ formulation; including pills, crushed, with/without taste, and offerings from numerous manufacturers. Powder with black pepper is popular.

Similar to most medications, it is best to go ‘low and slow’. As the patient displays individual tolerance to a given pattern, the dose and/or frequency can be adjusted.

Effects
We have received lots of emails describing a variety of results – mostly positive, some negative, all instructive:
I have noticed great improvements in cognition and language with your suggested supplement. She seems a little more irritable, but the the gains are so good.
-The curcumin has been amazing. Improved language and cognition. Significant improvements.
-He felt warm for two days, but never registered a fever. He is doing amazing in school! He is now sitting with the other kids and doing his seat work. According to the school staff, they have witnessed attempts to talk and word approximations. The ABA therapist visited him at school yesterday, and reported the same. She is extremely pleased with his progress, and we are as well. I’m going to send you a picture.
-Our child reacted well to the turmeric and LDN compound. At first we thought he had a reaction to it, but he was getting sick. We have continued on the path and he seems to be reacting nicely. He is babbling much more and mood has improved…
-This supplement has been amazing so far at 75 mg bid. Her focus and sustained attention and receptive language are much improved and all her therapists across the board have noticed!
-It has been amazing. Improved language and cognition. Significant improvements.

Side Effects
I also wanted to ask, his poop has turned yellowish, it used to be dark brown. Is this normal with the supplements?
Changes in the color of urine and stool are due to the intense yellow color.
Our child was on the product for two days and an intense rash developed around his eyes! I stopped giving it, and it is slowly getting better.
Rashes are the most common side effect, so far. Reducing the dose often improves the problem, but close medical supervision is paramount.

Conclusion
As with all medical interventions, your child should be under the care of an experienced practitioner who can make specific recommendations. It is impossible to test all brands. Patients and problems are so diverse that, generally, doctors stick with the supplements with which we become most familiar.

When given to the appropriate population, with close followup of the clinical course, adding curcumin to the treatment protocol appears safe, and can provide significant improvement for patients with ASD.

cumin

Cumin plant, powder, seeds

By the way
Curcumin is not cumin, which is a different spice that is derived from seeds. Both products are used in curry. They share many similar flavoring and medicinal properties.

 

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.

Signs of Autism in an Infant’s First Year

Sunday, October 23rd, 2016

neighborsAs a neonatal-perinatal specialist, I have been responsible for the health of tens of thousands of the smallest, sickest, and most vulnerable patients. Plus, in the past decade, I have focused on learning about, diagnosing, and treating children who are affected with the newest childhood developmental epidemic, Autism Spectrum Disorder.

It is fair to say, then, that my observations have a degree of validity not necessarily found by simply shopping around town, when parents seek answers about their child’s condition. Special needs pediatric medicine is my natural state. little-leoSo, while walking our Yorkie recently, as I was exchanging pleasantries with a neighbor, I couldn’t help but ‘examine’ the infant in the carriage. “Is this kid developing correctly?” I thought. “Are there red flags? What further questions would I want to know, short of becoming a nuisance, to help the family?”

Here is my list of key questions to best assess whether I should encourage a parent to further explore their infant’s development:

Pregnancy:
What is the age of mother and father?
Perhaps it isn’t the assisted pregnancy (in-vitro fertilization, etc.) that is the problem, since that has not been scientifically proven. But, an advanced maternal or paternal age have been shown to represent a significant association.
little-thought-cloudNo need to ask, however; I can ascertain that information by checking with my wife.

Has there been any medication use, but especially tylenol and psychoactive substances, even if they were prescribed by a doctor.
little-thought-cloudMaybe that’s too nosy.

Labor & Delivery:
Was it a full term pregnancy?
Contrary to some theories, I do not believe that pitocin (intravenous medicine given to enhance contractions) is a related issue. Rather, the fact that labor is prolonged may be due to hypotonia in the fetus, and he/she is not contributing in the tug of war. So, ‘Failure to Progress’, and late deliveries are a particular concern. Conversely, if the child was preterm, that is a significant risk factor, as well.

Did the child go home from the hospital with Mom?
This information could open up a host of possible associations, from the early use of antibiotics to birth defects.
“Why are you asking so many questions, Doc?”

Newborn:
“Well, I’m just interested. Did the child breast feed?”
Answers in the negative that are due to ‘poor suck’, breast milk ‘intolerance’, or GERD definitely increase the number of red flags related to those children who demonstrate future developmental concerns.

Infant:
Does the child have to go to the doctor often?
Numerous visits to the pediatrician or specialists imply an underlying medical problem, including asthma, eczema, feeding and stooling problems, which are frequently associated in children with autism.

Did the baby have plagiocephaly (flat head), torticollis (wry neck), or a large head size? Does he make good eye contact and follow a moving human face? In the second half of the first year, does the baby crawl/walk OK? Is there vocalization?
little-thought-cloudSkip the interrogation, I can observe many of those signs for myself.

Conclusion:
When the majority of answers are of concern, there may be enough warning signs to warrant further exploration. On one single day last week, I took care of 16 children who had criteria consistent with ASD. We don’t need more patients with autism. Something is just wrong.

Your neighbor should not be making developmental assessments, even if he is TheAutismDoctor. Pediatricians can, and must, do more to examine your infant’s development and help stem the tide. The only question should be, “What does your doctor think?”

For the clinician who may complain that this line of questioning causes unnecessary apprehension for Mom and Dad, my reply is that they are worried, anyway. Rather than help, a practitioner’s cavalier dismissal that, “I wouldn’t be concerned about that,” carries little substance in the face of this wide-ranging malady known as ASD.

The AMAZING Siblings of Patients with Autism

Sunday, October 16th, 2016

siblingAt the Child Development Center of America, it is our custom to request that parents bring the patient’s neurotypical siblings. Staff and interns can learn to appreciate the differences. I get a sense of the challenges faced by the children who are affected. An added bonus has been our observation that some of the most heroic family members are child’s brothers and sisters.

It never ceases to amaze me that even the youngest sibling will play with, fight with, endure – and teach – their affected friend. There is no correction, no repetition, and no prompting. It’s true love – even if they take each other’s stuff.

Brothers and sisters demonstrate patience and perception about the other’s wants and needs. It is a constant reminder of the important role these sometimes forgotten family members play in the affected child’s development. Their maturity frequently exceeds their chronological age.

One parent recently provided this beautiful essay written by the 11 year-old sister of a very affected patient, who has only recently begun to seek and interact with others and with his environment. Without being asked, here is what Jillie wrote:

jillie-barton   An autistic kid’s brain is like a computer keyboard. A keyboard has a chip that sends signals to the other keys. A fixed one sends a message to the keyed it gets there. When you press the key a letter appears on the screen.
  But a broken one doesn’t. The chip sends a message down the right route. But the right route isn’t working right, so the message tries to find another way.
   But the message doesn’t get there. So when you hit the key nothing happens.
   It’s sort of like an autistic kid’s brain. the brain sends a message down the nervous system. But the route isn’t working correctly. So the message tries to find a new way. But sometimes it works.

Discussion
Siblings of children with autism are the subject of a number of scientific studies. Twenty years ago, one paper described, “Sibling encounters provide a unique opportunity for such children to learn about social relationships.”

A decade ago, another study demonstrated …”strong and positive changes in joint attention and modest changes in social behavior for the latter…” but lamented, “however, the results did not provide strong evidence for generalization of increased social interactions to different settings.” Who cares? A buddy is a buddy. Another paper that year, Teaching Pretend Play Skills concluded, “… the child with autism may benefit from sibling-oriented interventions

In 2007, Sibling Interaction of Children with Autism: Development Over 12 Months showed, “… social interaction and imitation in children with autism and the special role that sibling interactions can play.”

Literature describing family challenges followed. One study summarized, “When siblings were dissatisfied with differential parenting, quality of the sibling relationship was compromised.” Another concluded, “treatment programs may need to address parental stress, which in turn will help optimize treatment outcome for the child and the family.” In Siblings of individuals with an autism spectrum disorder, the authors wrote, “Adolescents engaged in more shared activities and reported more positive affect in their sibling relationship when their sibling with ASD had fewer behavior problems… For adults, more shared activities were observed when the sibling with ASD was younger in age and had fewer behavior problems; greater positive affect in sibling relationships was predicted by greater parental support.

This year, several papers arrive at similar conclusions involving, “contradiction. Participants recognized difficulties (decreased parental attention, extra responsibility, bothersome behaviors, communication difficulties) and positive aspects (became empathetic, loved and appreciated the child, realized the experience was life-changing) of living with a young person with ASD. Younger siblings frequently reflected on childhood experiences, wished they could play together… Adolescent siblings learned life lessons from the experience, talked about life changes when ASD was diagnosed, and seemed introspective and protective toward the young person with ASD. Male siblings often wished they played more often while growing up with the young person, and frequently mentioned the child/adolescent’s aggressive behaviors; female siblings focused on relationship and communication difficulties of the young person ASD.”

Conclusion
Brothers and sisters get it. Preteen Jillie gets it! Her description of processing difficulties is spot on. Perhaps, one day, it will be the sibling of an affected child who will make the key discoveries for effective remediation of the signs and symptoms displayed in Autism Spectrum Disorder.

I Watched Vaxxed

Monday, October 3rd, 2016

I am not against childhood vaccinations.

I have expressed that opinion in more than a few blogposts. Nonetheless, it appears that more information is needed, and controversies must be addressed, before the gods of modern medicine can simply dismiss the thousands of parents who feel that their child developed autism shortly after one of the childhood inoculations.

genrescue2016

(L-R) Jenny, Jacqueline&Chris Laurita (housewives of NJ), Nico&Davida LaHood, Del Bigtree, Dawn&Ryan Neufeld, Jodi Gomes

This week, at the Autism Summit, Jenny McCarthy expressed that same opinion in her opening video, and throughout the panel discussion. Frankly, I would not have even written this story if there wasn’t a controversy when an Express-News reporter was prevented from attending the conference. He wrote, “The summit is being put on by Generation Rescue, a non-profit led by Jenny McCarthy, an anti-vaccine activist.”

One of the panelists was San Antonio area District Attorney, Nico LaHood. “In a promotional video filmed in his office, LaHood said “vaccines can and do cause autism,” and has made clear he doesn’t accept scientific evidence as proof to the contrary.” Another celebrity was Del Bigtree, the producer of Vaxxed.

So, I paid my four bucks, and watched the movie. Del Bigtree presents a compelling story surrounding the information supplied by CDC whistleblower, William Thompson, who claims that data that would have implicated vaccinations as a cause of autism was altered, so that the MMR would appear safe.

There is a fair amount of anecdotal and perhaps, overly dramatic presentations of individual case histories, which will turn off the ‘real’ scientists. Mr. Bigtree describes that as the conundrum as we, “…study the disconnect between science and parents.”

Dr. Doreen Granpeesheh, founder of CARD, appears as a credible expert. A nobel prize winner weighs in, adding validity to the story. After reviewing the data, a traditional pediatrician and family practitioner seem truly amazed – and changed their opinion about the safety studies. Cool, calm, and well-spoken, Wakefield looks to be anything but a raving zealot. His conclusion is that if the MMR were separated, that would be best solution and the issue of ‘herd immunity’ would not be breached.

I’m not against childhood vaccinations.
Hillary has declared, “The sky is blue and vaccinations work.” She doesn’t know, for sure, if they are safe for all, however. Why deliver an increasing number of antigens to an immature immune system? Why do we have a vaccine compensation fund? Why does the package insert say ‘seizures‘?

If such a movie only adds fuel to the fire, why not just refute the questions that are raised with a prospective, randomized, double blind study, considered to be the gold standard for proving efficacy and safety? Rather, people who even view the film are marginalized and considered kooky, conspiratorist, poorly informed, and ignorant.

The movie is considered to be the problem. Andrew Wakefield is the problem. Leo Kanner, a Freudian from the first half of the last century, assigned the diagnosis to the realm of psychiatry. Bruno Bettleheim, a media darling at the time, popularized the ‘refrigerator mom’ theory that persisted for another 30 years. We are still arguing if there even IS an epidemic. There is plenty of blame to go around regarding our confusion about this mysterious illness.

I’m old enough to have experienced neighbors, relatives and patients who have suffered serious consequences from childhood diseases, such as polio, measles, and congenital rubella. Furthermore, I am aware of the mountain of ‘scientific evidence’ that documents a lack of association to Autism Spectrum Disorder. In my own practice, the majority of parents do not feel that vaccines caused their child’s autism, and there are many children with ASD who never received any inoculation.

However, great concern is raised when there are stories, such as the mismanagement of vaccines in public clinics, and issues with government oversight connected to Big Pharma (documented in this movie).

This is one of the most polarizing issues that impedes real progress in our understanding of the epidemic of childhood autism. In the present circumstance, perhaps it was the fault of the conference organizers, not allowing a possibly negative story to emerge. This highlights the need for both sides to step back and listen to each other in order to uncover the truth.

Finally, I want to document that, I’m not against childhood vaccinations.

Categories Archives Links Contact Us

Brian D. Udell MD
6974 Griffin Road
Davie
FL 33314
Office phone – 954-873-8413
Fax – 954-792-2424

Email bdumd@childdev.org
Copyright © TheAutismDoctor.com 2010, 2011, 2012, 2013, 2014, 2015
All Rights Reserved