Posts Tagged ‘DAN doctors’

Ten Top Toys Not to Get Children Affected with Autism for the Holidays

Thursday, November 23rd, 2017

Maybe this list applies to all modern kids. Especially as regards offspring who are ‘on the spectrum’, our experience and perspective from The Child Development Center can assist gift givers with decisions about whether holiday offerings are consistent with recovering challenged children, as well as making them happy.

What Not To Get Junior for the Holidays

1. Toys that talk to your kid. It’s supposed to be the other way ’round. Imagination through a favorite dolly or stuffed animal, and self talking, represent practice in communication. If someone has to invent a robot that speaks, it should also prompt. Can you imagine that conversation?

2. Stuff that fosters repetitious behaviors. Scrubbing Angry Birds on a digital screen preys upon the fabric of the youngster’s repetitive behaviors. Similarly, devices that enable constant You-Tube video re-viewing foment restricted interests.

3. Most digital gadgets, unfortunately engender those problematic criteria previously listed (#1, #2). i-Things should be reserved for when the parents absolutely cannot attend to the child, rather than becoming a body appendage. And, whenever possible, use a timer to notify the child, “No more.”

4. Presents that are primarily intended for indoor use. There’s already plenty of entertainment throughout the house, and miniaturized for portable use. Encourage healthy outdoor play. That means added work for families of special needs children; but scooters, trampolines, swings and parks – even if your child just watches – are worth a great deal more than another box of Legos.

5. Too many items. While it’s important to promote variety, as witnessed through the oft-uploaded FaceBook album depicting an orgy of holiday presents, that superabundance cannot promote anything but indifference to a truly valued item. As many parents know, just getting a child who is affected with ASD to appreciate any toy is a victory.

6. It’s difficult to completely eliminate preferred playthings. We show our love by gifting pleasurable items. But, those who thoughtfully provide a child’s favorite Disney movie or Star Wars model (when they already have 4 that are similar) might find their special item tucked away for another occasion.

7. Pets that you, the parent, don’t want to take care of. Because, no matter what any other family member claims, the purchaser of the animal is the de facto feeder, caretaker and parent of yet, another ward.

8. Any toy that emits an annoying noise. Frankly, if it makes any noise, the buyer should listen to it, like, 75 times, to experience the real gift. And, ‘friends’ who insist on giving your child such an annoying offering, aren’t really your friends.

9. Even objects that you don’t think can become weaponized may turn into dangerous flying objects. But, those that start out that way are suspect. Sure, that lightsaber looks appealing and fun. But will little princess Leah be bonking brother Jimmy on the head with it?

10. Gadgets with an easily accessible battery compartment. Even when the power is kept in a secure section, Junior may figure it out, especially if reinsertion into a body part is their mission. But, as you are traveling to the ER, you will know that, at least you tried to protect the child.

Conclusion
The message is, think twice before plunking down your precious dollars that could be otherwise spent on valuable therapies, which are necessary to promote healthier development. As with neurotypical kids, the box may be as entertaining (and better play) as the toy inside.

Consider the child’s state of autism. Not unlike many other areas of a special needs child’s life, it’s not fair, but even purchasing gifts requires extra evaluation.

Is Big Pharma Knocking Off Functional Medicine Doctors?

Saturday, November 18th, 2017

I awoke one morning recently, to this shocking Facebook post: 77th Holistic Doctor Shot Dead In Her AZ Home With Her Entire Family.

Considering the violent circumstances surrounding this daunting list of clinicians’ deaths, including Drs. Jeffrey Bradstreet, John HicksRose Polge, etc., I wondered, “Are they coming after me, as well?”

Why I’m really not worried
A small, boutique practice, such as The Child Development Center, should hardly appear on any corporate radar screen. We have taken care of thousands of patients, while pharmaceutical companies can reach multiple millions utilizing propaganda and government access.

Planetary drug stores continue to fund and create new potentially harmful products. This grouping of functional physicians may just represent collateral damage.

Large drug companies possess the power to spread cancer in our collective being, death is but one eventuality. Considering Pharma’s great scientific strides, and enormous profits, someone ought to slip a ‘Fund for Diabetes Prevention Program’ message into the corporate suggestion box (paid for with some of the dough that insulin generates), rather than knock off a few holistic practitioners.

Any conspiracy talk is best minimized because the conversation usually devolves into a controversy regarding the childhood vaccination schedule. The Wakefield effect. More heat, less light.

The story, presented in a somewhat sensational manner, has appeared in more alt-thinking venues, such as ascensionwithearth.com, thescienceofeating.com, and healthnutnews.com. So, the message may simply be ‘preaching to the choir’, or considered ‘kooky’ and overly dramatic.

The local news station reported, “Police: AZ father kills wife, toddler, baby, himself in weekend murder-suicide…
Investigators believe the cause was financial issues. A co-worker… called police Friday after finding all four shot to death in a room.

Conclusion
I sincerely hope that these deaths are not part of some conspiracy. If it’s true, multinational drug companies are only shooting themselves in the foot, getting negative publicity that isn’t worth the effort. Pharmaceutical manufacturers are already entrapping us in a variety of ways.

So, I’m not getting a gun, or hiring a bodyguard. We’ve all got more substantial stuff to worry about, like getting kids with speech apraxia to talk.

The Perils of Home Treatment for Autism

Sunday, November 5th, 2017

Were it not for a lack of knowledge or, frankly, interest on the part of most of the medical community, parents of children with autism would be happy to relinquish their quest for appropriate treatment.

Too often, I listen to stories about pediatricians who have declared, “Well, I don’t know much about that ‘spectrum’ diagnosis. Let’s wait 3 to 6 months and see what develops.” Or neurologists who, after observing a patient for less than 5 minutes arrive at what they think is an accurate diagnosis, followed by little in the way of explanation, and even less effort to provide relief, other that a ticket to, “find a good therapist.” Then, there is the peanut gallery of mildly interested observers who implicate over-diagnosis and link the epidemic to anti-vaccination conspiracies.

That being said, the families who are left to fend for themselves in this void must navigate a sea of dangerous waters in order to find safe, reliable and effective protocols for children affected with ASD. These are some of the issues that frequently arise for those warrior-parents.

No matter how ‘benign’ the intervention, what works for one child might actually make another child worse. There are many different kinds of autism, including boys (aggressive) vs. girls, early vs. late (language regression), immune (rashes, constantly sick and antibiotics), gastrointestinal (reflux, bowel problems), and genetic variations. Furthermore, at any one point in time, speech apraxia, social isolation, sensory issues, or aggression might define a child’s autism. So, Dr. Google’s therapy du jour may not even apply to the present status of your offspring.

Will Junior actually take a supplement that was suggested on the Internet? Compliance issues are a major challenge among our patients at The Child Development Center. Children are usually very picky eaters, sometimes refusing to chew, or preferring to smell everything, and not likely to ingest another yucky concoction. The ‘best’ fish oil won’t work if your child won’t take it, so a better tasting, less expensive, well-tolerated version may be the better choice.

Costs can spiral out of control. Each affected child may take between 5 to 10 supplements/medications per day, often exceeding $300 per month. And, of course, it is not covered by health insurance. Can you really afford to give another remedy on the advice of a friend-of-a-friend-of-a-person-whose-kid-has-autism?

Complicated, expensive therapies are compelling. Parents who seek experimental, untested, and/or potentially dangerous regimens are not foolish or ignorant, they are frustrated and desperate. For the most part, unless your family has unlimited resources, your money is better spent on proven, conventional behavioral interventions.

Parents may not be aware whether item #2 on the list of supplements is actually amplifying item # 7, or nullifying. For example, notwithstanding manufacturers’ claims, digestive enzymes digest stuff. Probiotics, proteins, etc. work best when they reach their intended destination in the natural state, so some products must be given individually.

Home therapies do not take the place of a thorough medical workup by an experienced practitioner who demonstrates reproducible results. Vitamin D, e.g., is great, but high doses could be harmful. The child’s blood count, liver, kidneys, thyroid, and other metabolic functioning should be documented and followed when a fragile toddler is the recipient of pharmaceuticals of any kind, with potentially serious effects.

Conclusion
Rather than eschewing novel treatments, I am eager to become educated about patients’ reactions – positive and negative – so that my advice applies to each individual child, at a particular point in their recovery, targeted at the therapies that will take the patient to the next level toward independent function.

I have learned useful techniques from naturopathic, holistic, Ayurvedic, and just plain Mom-medicine. Epsom salt baths, attention to nutrition, probiotics, essential oils, and the like, can be quite helpful. However if you are experiencing a 2 year-old who is not making eye contact, a 3 year-old who doesn’t speak, or a 4 year-old who is banging her head, sooner or later you will get the most tangible results from a practitioner who can accurately identify, and treat, such serious challenges.

About regimens and treatments that some might say, “How can it hurt?” the most important lost resource may be time.

Fundraising for Autism Research

Monday, October 23rd, 2017

(Too) many years ago, our Regional Intensive Care Unit had the honor of hosting Audrey Hepburn. At that time, we were knee-deep in cocaine exposed babies, and the entourage stopped at the incubator of a 1 pound infant who was barely visible among the wires and tubes.

I asked the famous actress, 1992 recipient of The Presidential Medal of Freedom, and tireless worker for UNICEF, if she minded that the costs of this single child’s care were expected to exceed $1 million. “Wouldn’t you be able to feed an entire village somewhere?” Her surprising answer was, “There’s enough money for both, if we care to spend it that way.”

Fast forward to a recent NYC fundraiser for Columbia Presbyterian’s Transplant Initiative. I complained to my beautiful and patient wife, Jackie, that autism doesn’t receive the same kind of attention as other medical condtions. Frankly, I was jealous. There is enough money for both, if we choose to spend it that way.

There are presently ~117,000 people requiring an organ transplant of some type. There are over 5 million people with autism. In the past several years, I have attended, and been struck by, similar begrudging feelings at benefits for the Michael J Fox Foundation for Parkinson’s Disease. Sure, it’s important to give people a ‘second chance’ at life. But, have the children who are most affected with ASD, and their families, had any real first opportunity at normalcy?

Look, I’m not trying to compare apples to oranges, but it seems that ASD should be appropriately considered as THE childhood epidemic of OUR time. A great deal more is needed by way of funding for useful investigations. I am honored to serve as a Board Member in our local Autism Society of America – Broward County, but research and medical issues are for other institutions.

Increased collaboration among national organizations, including Autism Speaks, Generation Rescue, Talk About Curing Autism Now, Autism Research Institute, The National Autism Association, and local CARD groups, can only strengthen awareness and support.

Autism is stuck in a century-old paradigm of psychological causation. Lately, parents are offered a genetic etiology that leaves them with little hope. Disparate theories and alternate interventions require evidence-based research. That includes adequate vaccine studies – among other ubiquitous toxins – to identify those infants at possible increased risk for untoward consequences.

Acknowledgement of the successes that doctors, such as myself, are experiencing every day, needs to be appropriately studied and documented. It seems that more funding might be directed toward our work, were it not for all of the controversies surrounding an autism label. Unity among the various interested parties to support ‘N of One‘ treatments may help us attain that goal. That way, more toddlers would have access to earlier medical interventions, as well as conventional therapy.

Columbia’s Transplant organization’s motto is “We don’t just practice medicine. We change it.” Practitioners who are at the forefront of effective autism diagnosis and treatment feel that way, as well.

The Real Cause of Autism

Sunday, October 8th, 2017

Recently, these 3 headlines appeared on my iRadar Screens:

Genetics a Cause of Autism in Most Cases: Study
 Korean-American Professor Couple Identify Major Cause of Autism
 Could multivitamin use in pregnancy protect children from autism?

Yet, the research was entitled:

The Heritability of Autism Spectrum Disorder
Mum’s bacteria linked to baby’s behavior
Antenatal nutritional supplementation and autism spectrum disorders in the Stockholm youth cohort: population based cohort study

And, the papers covered the following data:

The examiners mathematically re-analyzed decades-old Swedish registry information that strengthened the association with genetic factors. About the findings the lead author has admitted, “our results do not give any information about specific genes or other direct causes. It only informs us that genes are important…. our study cannot shed any light” on the reason for higher rates.

This was published in Nature, entitled, Maternal gut bacteria promote neurodevelopmental abnormalities in mouse offspring. “The couple found that certain bacteria in the mother’s digestive tract can lead to having an autistic child. Furthermore, they found the exact brain location linked to autistic behaviors, which can be used to find a cure for autism.” Mice are not men.

Using a similar Swedish cohort as the first study, authors reviewed supplementation with multivitamins, iron and folate. They concluded that, “Maternal multivitamin supplementation during pregnancy may be inversely associated with ASD with intellectual disability in offspring.”

Discussion
All of the information first appeared in reputable journals. The stories took a turn through leading health and science magazines, and finally popular media announced theories as if they were dogma. Often, autism research is subject to the ‘telephone game’, resulting in overstated and oversimplified claims masquerading as explanations for complicated medical concepts.

Nevertheless, these investigations represent clues, directions to be pursued, possible new treatments and even prevention. It’s so confusing because they document only baby steps in this scientific puzzle.

Conclusion 
Rather than view these studies as disparate, an alternative perspective could be something like:
If autism is the result of a susceptible individual (genetic study) affected by an environmental stress (mouse study), then utilizing a metabolic intervention (third study) might make sense.

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

Friday, September 15th, 2017

Jodi’s Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Recognizing The Signs of Autism Recovery

Sunday, August 20th, 2017

As the autism epidemic has grown, so too, has the knowledge of professionals who shepherd treatment, and our recognition of success. It is helpful to offer predictive signs that reflect steady improvement. Due to the variations in autism presentation, there is no authoritative information about how long recovery takes.

However, it can be quite useful and encouraging for a parent to know that it is great news when a child who, after 9 months of treatment, is finally repeating words. It is just as important to understand that the lack of questions, or comprehension, is not pertinent at such a stage.

Patience is key – all affected families have already learned that virtue. But proper acknowledgement that the chid IS getting better should reassure families, hopefully adding a touch more perseverance to their storehouse of solutions.

The journey begins as the ‘fog’ lifts. Wandering should become exploration. New diagnoses do not suddenly ensue, they rise to the top of parental concerns.

It’s not apraxia AND autism. The lack of verbal communication ought to define that phase of autism. Speech arises as sounds, often verbal tics or ‘stims’, teeth-grinding, or screeching, progresses to occasional single words, more consistency, then more dependable expression.

At first, merely hearing the speech therapist say that your child is trying is a very positive sign. There is a pattern. Speak to yourself. Speak to toys. Speak to family. Sometimes, it make sense. Juice. Want juice. I want juice. Observe other children. Speak to safe children – older, younger, more docile. Sometimes, inappropriate.

The same arrangement can emerge with shorter, then longer, sentences. During this phase, parents may fear that the child doesn’t doesn’t comprehend, or is lazy. “He can do it if he wants to!” I think of it as paving newer, progressively wider, neural roadways. The quantum leaps in the appearance of knowledge, such as letters or numbers, are a result of the newfound ability to perform expressive language.

Repetition of words or phrases (echolalia, scripting) seems to be part of the fabric of the acquisition of this ‘skill’. If a child is supposed to say 1000 terms, e.g., and only has 300, they may say the same thing 3 times just to make up the difference, or repeat the last words that were spoken. (Neurotypical adults often do this, as well.)

Socialization will rarely ensue if these milestones, in some form, haven’t appeared.

Children who have repetitive behaviors and restricted interests do not develop obsessive-compulsive disorder. Yes, a youngster may appear to have OCD, but it’s the same problem they exhibited at 2 years of age. And, no pediatrician called it OCD back then. Furthermore, adult drugs for this ‘condition’ are dangerous and rarely perform as expected.

Sensory processing issues that involve hearing, vision, etc., do not develop into SPD. They may become highlighted at various points in the child’s recovery process as the cause of distraction or aggression. Stimming is frequently a symptom. Occupational therapy and other appropriate neural interventions can be quite helpful.

Likewise, lack of attention and focus, overactivity, and distractibility aren’t really a newly acquired ADHD diagnosis. This represents the remnants of an earlier autism. Signs and symptoms are only as subject to pharmacologic remedy as the resulting, appropriate anxiety.

Proper recognition of the challenging behaviors is key.
Does anyone know of a drug that would enable a 5 year-old to perform in a 2nd grade classroom?

Immaturity, tantrums, and difficult transitioning do not warrant a separate condition. Oppositional Defiance Disorder is a description. Behavioral interventions have proven value.

Conclusion
Some might be confused by my use of the word ‘recovery’. It depends on the definition. Subject to the age at the initiation of therapies (and a million other factors), The Child Development Center generally aims for a 3-to-6 year window, in order for a ‘typical’ patient to enter the general educational environment. There may be plenty of leftover challenging behaviors, as occurs in many of the other students in this century.

My point-of-view is that, 10 years after a crippling auto accident, the appearance of normalcy doesn’t erase the prior event. Five years following, however, the patient may experience muscle weakness and/or ‘pins and needles’. Such is the state-of-being for many of the children experiencing recovery in Autism Spectrum Disorder.

The Chronicity of Autism

Sunday, July 23rd, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

4/26/17 New Laboratory Results

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

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

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

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

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

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

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

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

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

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

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

Rerun: Autism Apraxia and the Oboe

Sunday, July 16th, 2017

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

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

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

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

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

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

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

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

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

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

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

A Tale of Two Studies – About Autism

Sunday, June 25th, 2017

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

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

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

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

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

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

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

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

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

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

Addendum:
This story appeared in October, 2017 Wall Street Journal:
New Tools Detect Autism Disorders Earlier in Lives

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