Archive for the ‘AD/HD’ Category

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).

Early Experience with Helminth Therapy in Autism Treatment

Sunday, September 3rd, 2017

Gastrointestinal issues are one of the most common co-morbidities in patients who experience signs and symptoms of ASD. Treatments have included prebiotics, probiotics, antioxidants, cathartics, detoxifying agents, antibiotics, antifungals, human fecal materials, and others. Singly, and in combination, they have resulted in sometimes limited success and frequent relapses.

Furthermore, patients with ASD suffer a variety of allergic and autoimmune conditions, including rheumatoid arthritis, food sensitivities, asthma, and eczema.

Filling that therapeutic void is the coming world of helminths. It is a unique form of gastrointestinal/allergy treatment, now being popularized by a highly respected pediatrician, Dr. Sidney Baker. At The Child Development Center and other Developmental Clinics, treatment with HDC is becoming an additional strategy for patients with autism.

What is helminth therapy?
According to the NCBI, it is “The treatment of immune system diseases by deliberate infestation with helminths. This therapy is partly based on the HYGIENE HYPOTHESIS which states that the absence of parasites increases immune dysregulation because of the lack of stimulation of REGULATORY T-CELLS.”

As researched and reported early in this century in Science, “The induction of a robust anti-inflammatory regulatory network by persistent immune challenge offers a unifying explanation for the observed inverse association of many infections with allergic disorders.”

As unappealing as it may seem, the rat tapeworm, Hymenolepis diminuta cysticerci (HDC), is considered a mutualist, providing benefit to the host without causing longterm harm. Out-of-the-box thinking by a few functional medicine doctors has taken the following course:

Chronic illness is an expression of autoimmunity
Gut problems and allergy in autism are a form of chronic illness and autoimmunity
HDC interferes with autoimmunity
Provide HDC for chronic illness, including autism

The Protocol
In our practice, an email is sent with the parent order form, directions explaining how to administer and store the HDC upon arrival, as well as some background information. I send a request and a summary of the medical history. After reading all of the information provided, the parents contact Dr. Baker, and the product is sent to the home.

How to take the product?
Patients take them by swallowing the supplied liquid (the organisms are barely visible), or adding it to another drink. The Primobiotics dose is 1-60 HDCs, given every 1-4 weeks. The usual plan is to start with a dose of five HDCs – fewer in young children. It may take up to 6 weeks to see positive indicators and six months to fully determine that it hasn’t helped. When found helpful, the length of treatment has yet to be determined.

What are the costs?
The costs (directly from the company) are $100 for 1–10, and an additional $25 for each additional 10. The maximum charge is $175 for 40 HDC. Above that there is no additional increase in charge. Shipping is usually $35-65 but for Western US and Canada, it may be $80-100.

What are the downsides?
Constipation should be taken care of before initiating the use of HDCs. There may be some digestive upset with mild abdominal discomfort and some changes in bowel movements. Hyperactivity or insomnia lasting for a day or two are experienced by less than half of recipients.

If, after the first dose there are no positive or negative effects, the dose is increased as the optimal dose is established. Some individuals may show indications that a dose is ‘too much’ – with a more robust digestive discomfort or hyperactivity/insomnia than is usually felt as part of the initial response, in which case the dose is reduced to the minimal number.

What if a worm doesn’t pass?
According to Dr. Baker, a worm ‘sticking’ is a rare and benign event that can be treated with a dose or two of appropriate medicine.

Discussion
Note that HDC is not an autism ‘cure’. Rather, it can be useful as a treatment for the myriad of co-morbid conditions that can cause signs and symptoms related to ASD. Perhaps that is why Dr. Baker reports a ~50% success rate, after recommending this therapy to nearly all of his chronically ill patients. “What’s the alternative?” he would ask.

Though he eschews fearlessness about his willingness to offer advice, Dr. Baker has assumed a significant amount of responsibility in this endeavor; from cultivating the critters, to teaching others how to breed them, to sending out his own ‘farm-fresh little dudes’. He has personally answered emails, and he even called one of our parents who had concerns.

Interested practitioners are working together to educate and gather experience, in order to optimize this intervention. Specific probiotics are indicated, as well as evaluating progress, and even examining  unusual stools that document the gut ‘reset’. For many, the question will be, “What to discontinue first?”

Conclusion
Doctors who have assumed the challenge of treating patients with autism must remain open to all treatments, and recognize that it is the PATIENT who we are treating, not a specific disease. Some interventions, like GcMAF, were helpful, but are no longer available. Others, like antifungals and antioxidants, have taken time, and we’ve gotten pretty good.

Our patients have been satisfied with the service. Within a couple of months, two of five children have already shown positive responses, with improved behavior and communication. Treatment appears to be a safe, effective and reasonably priced way to assist patients with significant GI and / or allergic challenges.

Published recently in the New York Times:
Too Clean for Our Children’s Good?

For those who wish to read more and utilize another HDC source, here is BiomeRestoration.com

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.

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.

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 !

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