Posts Tagged ‘advice’

Back to Back to School Issues for Autism and ADHD

Friday, August 11th, 2017

Forget pencils and notebooks. Here is my take on the most important items that children who exhibit signs and symptoms of ASD and ADHD really need to make it through the coming season:

10. A weighted vest, and other such functional products. Neural systems are on overload, so any/all sensory reducing strategies need to be dusted off and utilized. My son, a former Special Ed teacher, reports that one of his favorites was Chewelry.

9. A special request for an IEP meeting to review everything agreed upon in the last IEP, and how the child has progressed. This can be especially important for the children who are losing the diagnosis. Being placed with role models is preferable to being the ‘one’.

8. A written, visible schedule. The previous school year’s busy agenda needs a re-boot. With non-preferred activities about to consume more time, acceptance and self-control become paramount, so clear expectations are a good start.

7. Sleep. Likewise, the body’s internal rhythms have gone on a summer vacation. Warm epsom salt baths are great to pave the way at bedtime. Chamomile is fine, and more difficult problems may be ameliorated with the administration of melatonin. Essential oils on the soles of the feet can be quite effective without the use of medication.

6. Supplements and medications. Children with ADHD are often given drug ‘vacations’ during the break. Appropriate dosing and timing may have changed as the summer progressed, so try getting things started a week or so early.

5. Healthy food. Unfortunately, schools do not often assist in this endeavor. If junior has been slipping off the diet, or eating too much junk, get back to basics.

4. An app to disable the iPhone. Really. The time spent on iPads, computers and video games needs to become severely limited.

3. Playtime. It is very difficult to transition from a season of freedom to one of academic drudgery and endless therapy sessions. Going to the park, ballgames, and other outdoor athletic activities is a basic part of being any kid. Even though physical activity is not as preferable as that smartphone, try to make it happen.

2. Soap. Stress cleanliness and get the child into the habit of washing their hands. To the extent that the school will cooperate, tissue dispensers, hand sanitizers and bathroom etiquette could provide some barrier to the onslaught of cooties.

1. A big dose of time and patience. As students fit into the new school year, so do teachers, administrators and other professionals need time to understand each child’s strengths and weaknesses.

VACCINATIONS?
For parents who are confused about administering childhood vaccinations, consider drawing blood ‘titers’. For those who have already had some inoculations, this is a measurement of how immune the child ALREADY IS to measles, mumps, rubella, varicella, etc. Your doctor can order levels of IgG directed against those diseases. High levels will not be accepted by the Public Health Department, so families will still need a ‘personal’ exemption. However, the already-immune child can be proven safe – as well as protecting their classmates.

Everyone remembers that first day back at school; anxiety, fear, excitation, and dread. The assault on the senses, social stresses and academic expectations are an even more tremendous hurdle for students with challenges in those very areas.

Most of all, parents’ love and understanding gets us all through those first inglorious days and weeks.

Return of the Yeast Issue

Sunday, August 6th, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Chronicity of Autism

Sunday, July 23rd, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

4/26/17 New Laboratory Results

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

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

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

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

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

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

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

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

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

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

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

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.

Screen Addiction Disorder?

Sunday, July 9th, 2017

Health professionals have coined a number of new-century terms in order to describe signs and symptoms that were previously unspecified. These have included, Sensory processing, Visual processing, Auditory processing, Executive functioning, Social anxiety, Oppositional Defiance, and Attention deficit – Hyperactivity disorders.

How About Screen Addiction Disorder?
It’s SAD.

Everyone, it seems, is glued to their gadget. We seek instant gratification about the latest Facebook post, email updates while at dinner, or even read and write texts while driving. These, and many more self-absorbed behaviors are magnified in autism.

The Child Development Center has treated a stream of youngsters who come in, balancing as many as 3 screens at the same time, in order to maintain self-control. In patients with ASD, repetitive behaviors and restricted interests are part of the fabric of their developmental disabilities. Why provide them with a tool that preys on their most serious weaknesses?

The two most common answers are 1) “It makes them happy,” and 2) “They are incredible with technology.”
1)  Kids don’t know what’s good for them, and 2) The software is great with the user, not the other way ’round. Even the youngest toddler can navigate a You Tube video or play Angry Birds.

Discussion 
Two recent NY Times op-ed stories got this discourse started. They were, First, Relax and Let Your Kids Indulge in TV, and Why Some Men Don’t Work: Video Games Have Gotten Really Good. Surely there is irony in these two stories appearing the same day?

The former opinion was written by an Australian mental health doctor and mother, who waxed nostalgic about the ‘good old days’, sitting around the TV with the fam. She wrote, “I find myself passing on to my children the addiction, at a time when this topic has become a focus of parental guilt and judgment.”

Wrong century, wrong technology.
“Family Ties” ≠ “Mortal Combat!” And, Phil Donahue ≠ Twitter.

The latter story was based on a publication in The National Bureau of Economic Research entitled, Leisure Luxuries and the Labor Supply of Young Men. The authors concluded that, “… innovations to gaming/recreational computing since 2004 explain on the order of half the increase in leisure for younger men, and predict a decline in market hours of 1.5 to 3.0 percent…”

The Times article quoted, “Adam Alter, a professor of marketing and psychology at New York University who studies digital addiction, highlighted the fact that, unlike TV shows or concerts, today’s video games don’t end.”

“Most forms of entertainment have some form of a stopping cue — signals that remind you that a certain act or episode is ending, like a commercial or a timer. Many video games don’t have them… They’re built to be endless or have long-range goals that we don’t like to abandon.” If this phenomenon is true for able-bodied young men, then this ought to be a cautionary tale for those who are even more susceptible.

I warned about this addiction previously. Repetitive viewing of videos and games does not promote imagination or socialization, which are core skills especially lacking in autism. Modern children spend little enough time outdoors, so a burning desire to get back to the iPad leaves athletic skills and exercise sorely neglected. Sound sleep suffers, as well.

Conclusion
If your child is neurotypical, the condition is problematic. The usual approaches to achieve balance can be successful (as long as the family isn’t experiencing the same syndrome). The author of the ‘TV is good’ piece claims to have found that ability to get her kids on nature walks and back home to watch informative documentaries.

Parents of children with ASD know this digital dilemma well. Reasoning, bribery, even physical punishment is fruitless. It takes hours of ABA to extinguish this seemingly obsessive-compulsive behavior.

This advice is offered to alert new parents, who may simply wish to entertain, or offer an early academic background. If the concern is that your child may suffer a ‘digital gap’, there will plenty of new iStuff coming out all of the time. It’s best to wait until there is a level of discipline and restraint.

We see evidence of Screen Addiction Disorder in all kinds of individuals, but it’s worse in patients with autism. It’s SAD. Treatment is difficult, prevention is the best strategy.

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

Fathers and Autism

Sunday, June 18th, 2017

The diagnosis of autism seems more difficult for the Dads. We are simply not wired to easily accept deviations from expected norms. For the entire gestation, through the first 15+ months, it’s mostly Mother who is feeding, going to medical visits, and communicating with the new child. So, when development lags and socialization ceases to flow, there is often an extra bit of frustration and disappointment.

This is an ode that I wrote 5 years ago, updated for today’s families who affected by autism:

Warrior Dads. Concerned Dads. Curious, watchful, insightful. Patience.
Sometimes, not so patient.
 
Hard working Dads. Smart… trying anyway. Good husbands… trying anyway.
Sometimes, it works.
 
Miniature cars. Trains. Crayons. Getting them in just the right order.
Spinning. Wheels. Fans. Is that a ‘stim’?
 
Sleep – please. Poop – ?too little ?too much
Toilet training. Communicate!
 
Catch. Football. Soccer.
Maybe, have to wait a little while.
 
Education. Vacation. Camp.
IEPs.
 
Movies. Computers. iPads. iPad Apps.
Youtube. Too much repetition?
 
Wii. xBox. Video games.
On to another (non-preferred) activity. 
 
Decisions. Schools. Therapists. Drugs.
Opinions. Treatment options. Vaccinations. 
 
Doctors. Specialists. Alternative doctors. Naturopaths.
Homeopaths. Chiropractors. Nutritionists. B12 shots.
 
Appointments. Medications. Therapies. Supplements.
Money. Money. Money. More money.
 
Rare Holidays. Vacations. Exercise. Hobbies.
Planning for Restaurants. Shopping. Errands. 
 
Looking for Smiles. Playing with Toys. Chase.
Bouncing. Lots of bouncing.
 
Swimming. Horseback riding. Pet turtle.
Dr. Udell’s fish tank.
 
Finding activities. Yoga for kids. Summer camp scholarships.
Sensory friendly films. Thanks, Autism Society, and other local organizations.
 
Missing Cheeseburgers. Pizza. Mac & cheese. P&J.
Gluten free/ Casein free – Are these French Fries OK?
 
Sisters, brothers, grandparents, in-laws, cousins.
Peers. Precious few friends. 
 
Homework. Practice. Play. 
Worrying. Teaching. Learning.

 It’s all good. You’re a great Dad.
Happy Fathers Day !

© theautismdoctor.com

The Challenge of Challenging Behaviors

Sunday, June 11th, 2017

The Child Development Center has been experiencing a rash (dare I say, “Epidemic”?) of children who present with poor socialization, decreased attention requiring prompting and redirection, sensory and/or oppositional issues, extreme rudeness, dark thoughts and threats, obsessive activities, immaturity, and aggressiveness (physical, verbal or both). The children are not ‘autistic’. And, it’s not ‘just ADHD’.

One parent of such a child recently wrote that he was saddened by these disturbing developmental conditions in his otherwise amazing kid. When children do not ‘come out’ the way that we had anticipated, it brings heartbreak and disappointment.

Extremely disruptive displays are not merely frustrating.
They can be embarrassing and even cause depression.
In today’s world, that has become the journey of (too) many parents.

What Doesn’t Work
Corporal punishment was the traditional mainstay for ‘making children behave’. Thus, grandparents often complain that today’s parents are not firm enough. First, the price that is paid by utilization of either verbal or physical punishment is self-esteem – by both parties. Abusive actions, offhandedly employed in the last century, may prompt a Child Protective Services visit in this one. Second, affected youth appear to experience increased pain resistance. Eventually, that form of discipline goes unnoticed. Third, such a reaction is the exact opposite what we are trying to instill.

In the past months, we have examined a number of children whose medical pharmacopeia appeared proportional to their age. There was a 7 year-old taking three medications, and one teen was already getting Abilify, Risperidone, Geodon, Valproic acid, and Lamectal, among other pharmaceuticals. And, her psychiatrist was suggesting more. When does it stop?

I am certain that parents and doctors arrive at such multiple combinations of drugs honestly. Each symptom is met with another medicine. The patient is then drowning in chemical soup. What is the plan?

What Can Work
A medical workup is required. The prescribing physician is obliged to follow levels of anticonvulsants (for symptom adjustment), liver and kidney function (for drug elimination), blood count, and nutritional status.

In given patients, practitioners should consider fungal overgrowth, PANDAS, or Lyme disease. Screening for toxic substances has been a recent addition to our armamentarium. So new, perhaps, that such data is not necessarily that helpful, yet. Likewise, genetic technology has become available that better determines how patients metabolize various pharmaceutical preparations, but usefulness in clinical practice remains limited. To the extent that an astute clinician determines an underlying problem(s), great strides can be made toward amelioration of some disturbances.

Behavioral interventions are the proven treatment. It takes a professional therapist to get challenging children to display self-control. Common sense dictates that such juveniles require absolute consistency. One pre-adolescent demonstrated an uncanny ability to mock my consultation. Perhaps, the parents were thinking, “Now, you see how rude he is!” when they laughed it off. Regardless, their response validated the child’s disrespect.

One parent has developed her own form of pre-vigilance. Mom is able to ‘sense’ when her kids aren’t able to concentrate, and provides relief at the earliest sign of distractibility.

Rather than additional pharmaceutical preparations, doctors should consider which ones to decrease or discontinue. The list often contains drugs that were instituted for behaviors that are no longer at issue. Additionally, it can be helpful to consider less toxic medications or even supplements when the status quo is not doing the job.

Conclusions
My diagnosis is that such challenging children have escaped ‘traditional’ autism. It’s not obsessive-compulsive disorder, Tourette’s, schizophrenia, bipolar disorder, sensory/visual/auditory processing disorder, oppositional defiance disorder, etc.
It’s processing disturbances caused by our toxic environment acting on susceptible individuals.

Finding relief may be exasperating, with periods of improvement and regression. This is when patience and the knowledge that the child has the capacity to achieve necessary skills to ‘make it’ need to take precedence. Some parents choose home-schooling, special schooling, and less-than-hoped-for academic situations. Some must resort to medications.

This alteration in childhood development is not FUN. For many, it’s parenthood in the 21st Century. Consider that the best course is to ‘first, cause no harm’.

Sleeping Sickness Medicine for Autism?

Tuesday, June 6th, 2017

‘Game-changer for autism’:
100-year-old drug reverses symptoms, study finds

Recent headlines, such as those, have stimulated the submission of a fair number of emails that went something like this…

Dear Dr. Udell,
I saw this study on the internet.
I would like to try this medicine for my child. What do you think?

Dear Parents,
After further consideration, here are my observations about this serious pharmaceutical intervention:

1. What is suramin?
It is a chemical that was invented to cure parasitic diseases. The dosage used for autism has been significantly reduced.

2. What was the actual paper?
This treatment is based on a unique approach to autism, and it represents a preliminary test of whether this drug might be safe and effective for common signs and symptoms of this emerging epidemic.

There were 5 patients in each group of 4-17 year-old boys, who were either given a single dose of the medication, or placebo. Outcomes were measured in the first week, and 6 weeks later. There were generalized improvements in many areas. As blood levels decreased over time, so did some advances. Surprisingly, progress was seen in speech apraxia, even in 2 older children.

The drug was well-tolerated, except for “a short-lived, self-limiting rash.”

3. How does the drug work?
The authors explained, “One approach to addressing the challenge of many etiologies of ASD is to define a common pathophysiology that can contribute to the core diagnostic symptoms, regardless of the initiating genetic and environmental triggers. We hypothesized that there is a conserved cellular response to metabolic perturbation or danger that is shared by all children with ASD… in mice produced a treatable metabolic syndrome…” The administration of a medicine that adjusts for an alteration in RNA and DNA manufacture, and energy production, “…corrected both the behavioral and metabolic features of these genetic and environmental mouse models of ASD.”

4.  How is it administered?
INTRAVENOUS PUSH. From the results of this research, it would appear that doses may be required every ? 1-2 months for ?? months? This is not for the faint of heart.

5. How much would it cost?
The drug, alone, appears to cost less than $50, depending on the source. If it is found to be successful, let’s see how the powers-that-be jack up the price. Plus, there would be additional charges of IV administration and followup testing.

6. What labs must be followed?
That remains to be discovered with increasing experience and research.

7. What are the long term effects?
Ditto #6.

Conclusion
This medicine may simply share many of the same properties as the myriad of other gut-altering treatments. Positive results require frequent administration, and ‘tolerance’ to therapy sometimes makes them less effective.

However, the use of suramin is based on a different paradigm (how cells respond to stress) that takes into account the diversity of possible causes of autism, both environmental and genetic. That such a new direction in research is being explored is exciting and hopeful.

For now, families need to continue to be patient. Especially in children, interventions that are so invasive and potentially harmful require more study and followup, in order for parents to make a truly informed decision.

Is there an Autism ‘Smart Gene’?

Sunday, May 28th, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Brian D. Udell MD
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