Posts Tagged ‘Attention deficit’

Some Thoughts on Alternative Medical Alternatives to Autism

Sunday, November 22nd, 2015

Dr. Udell & Vicki Martin RN

This month’s Autism Society of Broward Speaker Series featured autism expert, Ms. Vicki Martin, who gave an interesting and thorough discussion assessing the medical causes of behavior in ASD, and my talk covering some of the latest biomedical treatments for autism.

Purpose – Improve our Understanding of the Range of Treatment Possibilities
Doctors get questions about these more-than-off-label treatments quite often, so it’s necessary to be current about the literature in order to give a learned response. It’s like homework.
I have an opportunity to give something back to The Autism Society of Broward. It has been my pleasure to have served on this Board for over 6 years. This not-for-profit (and, trust me, we have very few $) organization brings services, such as yoga, sensory-friendly movies, and golfing, etc., to the family level.
Public speaking is always a networking opportunity. There are parents who may not know about The Child Development Center of America and how simple protocols may improve outcomes, especially when they are combined with the traditional therapies. Attendees ask questions and learn about our medical practice.
It’s fun to discuss these topics, and more interesting than reviewing epidemiological data that questions whether autism is an epidemic.

Topics of Discussion
These were not necessarily chosen because they are truly the most recent or popular, but mostly because they have been hyped a great deal, lately, by social and other media.

Improvements have only been accurately documented, so far, in ASD patients with seizures. Any other use of the product at this time is purely trial-and-error, and the safety of hemp oil extract safety in children has yet to be proven. To the extent that patients may be able to take equivalent dosing, more information will emerge. The myriad of patients who try it, however, complicates evaluation about efficacy.

Helminth Therapy
While this unusual treatment of administering live organisms to successfully restore-reset immune function has been documented in adults with specific conditions, as concluded in a recent review, “Studies are neededto move helminth-related interventions that show promise in animals, and in phase 1 and 2 studies in human beings, into the therapeutic development pipeline.”

Chlorine Dioxide (CD)
Following up on that ‘worms or elimination of worms?’ question was a discussion about Chlorine Dioxide (CD) treatment. I ain’t sayin’ that it cannot/does not work in some individuals, but there are problems.
1. The science is weak and contradictory. There is no supporting research for terms, such as “Parasitological Vaccinosis.”
2. The main proponents, so far, are, the mother of an affected child, and scientist with questionable credentials.
3. Treatment can be risky.
4. Treatment involves a fair amount of resources; including frequent administration (every hour, sometimes), adjustment of dose, and which specific sites on the body to administer a dose (systemic, eyes, ears, rectum, etc.).

This peptide, which is produced in the brain, has been called the ‘love hormone’, and has been shown to be deficient in some patients with ASD. Animal models have demonstrated improvement, though humans haven’t responded the same way.

The most recent prospective, controlled, double-blind crossover study that involved 31 patients, demonstrated improvement. This has not necessarily been the experience at The Child Development Center of America, where it has been used for over 4 years, yet only a handful of parents continue to administer the product.

Transcranial Magnetic Stimulation
This type of mechanical device has been used for over a decade outside of the US, but has recently received FDA approval as a device for “major depression in adults who failed to improve on medication.” This is an expensive treatment option, in the range of $6,000 – $12,000 or more, and requires daily 1/2 hour treatments.
Adverse effects are listed as fainting, possible seizures, pain or discomfort, mania, changes in cognition, and transient hearing  and memory loss.

A recent review stated, “Though preliminary data suggests promise, there is simply not enough evidence
yet to conclusively support the clinical widespread use of TMS in ASD,
neither diagnostically nor therapeutically.”

Essential Oils
There is a paucity of literature to support the use of these products for patients who exhibit signs and symptoms consistent with ASD. On the other hand, they are relatively safe, have been around since the beginning of civilization, and do not cost a great deal to try. Furthermore, there are many studies demonstrating improvement in processing with occupational therapy and other ‘sensory diets’.

As in many of the other treatments, this has demonstrated the least improvement in our most apraxic and/or disruptive individuals.

Present medical therapies are woefully inadequate.
Many treatment options have been offered, but few have undergone sound scientific scrutiny.
Parents, desperate to help their non-typically developing child will be tempted to pursue less-than-helpful, less-than-safe protocols.
For the lesser affected patients, many forms of treatment will help.
For the most affected patients, such protocols offer only spotty improvements.
More research is needed. Physicians, who are in the best position to understand the complicated science, must understand the variety of presentations of autism and the myriad of treatment options in order to give families the best advice.

Doctors Failing to Understand Autism

Sunday, November 15th, 2015

When faced with the unknown or uncertain, physicians will often rely on language that, while sounding scientific and medical, just restates the obvious or says nothing helpful at all.

“I’m not aware of any literature on that topic.” Does that mean that the clinician has read everything and there isn’t any, or is the doctor displaying ignorance? A better answer would be, “Let me read about that and I will get back to you.”

“I don’t want to give you a diagnosis at this time.” It’s not up to the physician to decide. At least,  there could be a presentation of possible diagnoses, with the statement about a workup and interventions that the parent can initiate.

“It’s eczema. I’ll prescribe a steroid cream.” What is causing the skin rash? And, steroids will temporarily clear up any skin condition.

A 3-year-old wanders in circles and does not play with other children. “It looks like your child has developmental delay.” Stating the patently obvious is a frequent technique to deflect the physician’s lack of knowledge. The oncologist wouldn’t just say, “It’s a lump.”

“It’s not speech apraxia.” If a toddler wants to communicate and cannot say any intelligible words, that IS the name for that symptom. The converse situation occurs when the professional says that child has autism AND speech apraxia. It’s autism.

“I’d like you to come back in 6 months to see how the child is doing.” If that is the only reason that the doctor has for your return, he should be paying YOU for the visit.

“It’s not autism, I’d say more like PDD-NOS (pervasive developmental delay – not otherwise specified).” The DSM 5.0 has been published. The medical establishment has spoken. If a child exhibits repetitive or unusual behaviors and has communication delay, it’s Autism Spectrum Disorder.

“Those special diets are risky and can lead to nutritional deficiencies.” How about checking nutritional status with some appropriate lab testing? Better, check is as part of the initial workup, especially in picky eaters.

“He’s a boy… You speak two languages… She’s spoiled… Your grandfather was that way, etc.” We are in the midst of an epidemic. The child should be thoroughly evaluated for ASD.

“Studies have not shown significant results.” That depends on what research the practitioner chooses to read and believe. And, whether a treatment is worthwhile is best determined from the parents’ point-of-view.

“We can give medication to get rid of those ‘stims’.” One, repetitive behaviors are often communication, so reprimands may cause even more frustration. Two, those drugs are potent and have serious side effects.

“We can give medication for that anxiety.” One, nervousness is frequently appropriate. The affected child is concerned about not having the skills to join the group. Simply depressing the child’s response is not necessarily a good thing. Two, those drugs are potent and have serious side effects.

“We can give… Miralax for constipation… Zantac for refluxantibiotics for everything.” How about a thorough evaluation of why?

“It’s not anything to be concerned about.” The number one lesson that any pediatrician should learn is, “Listen to your mother(s)!” Worrying is part of their job. The child’s physician should perform an appropriate evaluation.

“Those ‘autism doctors’ are just quacks who will waste your time and money.” The parents can see progress for themselves. Families will continue to search for answers when traditional therapies alone do not seem sufficient.

The parents of today’s children who show signs and symptoms consistent with the epidemic of ASD are often more well-read than the doctor. These questions should spark interest on the professional’s part to offer more than lip-service to such a serious situation.

A Brief Discussion of Mitochondrial Function and Autism

Sunday, November 8th, 2015

Previously only of interest to researchers and a few doctors, this topic has become a popular subject to families of children affected with signs and symptoms that are grouped as Autism Spectrum Disorder.

Click to see the action…

The amount of information is dense, complicated by the myriad of bodily processes that are involved. Genetics, energy production, chemical reactions, membrane potentials and movement along the electron transport chain are basic to the understanding of these cellular organelles, called mitochondria.

Learning normal cell anatomy and function is a prerequisite to understanding what can go wrong and why.

There are discrete diseases of mitochondria, in which the specific steps involved in making energy don’t perform correctly. Additionally, there are numerous conditions caused, or exacerbated by, mitochondria functioning in some imperfect fashion, including autism.

Considering that mitochondria are the cells’ batteries, suboptimal functioning results in symptoms that reflect the particular organs that are affected.

Poor motility in the smooth muscles in the gut, e.g., could lead to reflux, or constipation and possible yeast overgrowth.
Weakness in the skeletal muscles may lead to poor core tone, developmental delays such as unusual or absent crawling, and eventually strength and energy as well.
Organs, such as the liver, that detoxify and so require a great deal of energy would not function optimally. A vicious cycle could ensue, as power stores become even more taxed. Additional potentially harmful substances would likely be less tolerated.
Throughout the nervous system, constant communication is necessary for proper perception. Affected individuals could exhibit various unusual sensory issues. Likewise, perhaps, there might be disturbances of motor function leading to atypical movements.
Poor energy function in the brain, which has to manufacture and reabsorb neurotransmitters, make electricity, grow new brain and prune the older, may lead to difficulty processing signals; therefore memory or focus would appear inadequate.

With an increased index of suspicion after a thorough history and physical examination (including the family history and review of systems – other than the chief complaint), a physician may decide whether to pursue laboratory and other appropriate testing.

Specific mitochondrial diseases are best addressed with diet and necessary medication, depending on the primary signs and symptoms and the affected organs.
In patients with ASD, in whom research has demonstrated low reduced-to-oxidized glutathione levels (GSSH/GSH), vitamins and supplements that address that situation, such as methyl B12, folate, SAMe (S-Adenosyl-methionine), cysteine and glutathione have led to improvement.
Mitochondrial ‘cocktails’ and supplements are popular; much of the work has been described here by Dr. Richard Frye.

The complexity of this topic is daunting, with much more research needed by universities and other scientific institutions. Armed with 21st century knowledge about mitochondria, doctors need to learn as much as possible, so that parents don’t have to figure all of this out on their own.

Lyme Disease and the Autism Spectrum

Sunday, October 25th, 2015

A disease described forty years ago due to a cluster of patients who appeared in the vicinity of Lyme, CT, has to be considered among the list of differential diagnoses when pediatric patients present with unusual developmental and other complaints.

Included on that list are PANDAS, specific neurologic disorders (e.g. seizures and cerebral palsy), chromosomal anomalies, mitochondrial disorders, and a myriad of systemic conditions, such as autoimmune ailments, G-I disease and skin rashes that ultimately may lead to symptoms and signs that fulfill criteria for ASD.

There is a complicated life cycle involving a deer tick that is infected with an unusual bacterial organism. When a human is bitten, those critters create problems throughout the human body.

The variety of symptoms are due to effects in multiple organ systems, including skin, internal organs, muscles, and neurons throughout the body. Fatigue and various CNS complaints are the most obvious and serious signs. In patients with ASD, Lyme may appear as regression or progression of aggressive and disruptive behaviors.
Recent recognition of the havoc that this infection wreaks on the immune system points to signs and symptoms in a number of modern autoimmune maladies.

The most reliable diagnosis is made when a two step protocol is positive. Using the same sample, a positive or equivocal enzyme test will lead to testing for specific antibodies. According to one commercial laboratory, their PCR test has the advantages of correctly identifying Lyme in small measure, and in a variety of tissues. Costs are approximately $300 to $800.
Unless there is specific and adequate documentation, insurance companies balk at paying for even the less expensive labs.

According to the CDC, “Laboratory blood tests are helpful if used correctly and performed with validated methods. Laboratory tests are not recommended for patients who do not have symptoms typical of Lyme disease. Just as it is important to correctly diagnose Lyme disease when a patient has it, it is important to avoid misdiagnosis and treatment of Lyme disease when the true cause of the illness is something else.”

Patients treated with appropriate common oral, or intravenous antibiotics in the early stages of Lyme disease usually recover. There is a controversy concerning the proper diagnosis of patients who fail to respond after 6 months.
The CDC prefers “Post-treatment Lyme Disease Syndrome” to the term, ‘Chronic Lyme Disease‘. There is also “Conventional medicine and the NIH have taken a particularly strong position, researching various treatment protocols with little evidence of value. However, those who continue to suffer seek additional relief.

When faced with the enigmatic and vague diagnosis of ‘Spectrum Disorder’, parents sometimes seek a more specific, treatable disorder, such as Lyme. Clinicians should elicit a history of possible exposure to infected blacklegged ticks. Though ASD patients are as likely as anyone to become infected, symptoms that begin in infancy and very early childhood are much less likely due to Borrelia.

The history, a particular rash, and an unrelenting deterioration of neurologic function should alert the astute physician to perform the appropriate laboratory testing.

Importantly, the information we learn from studying and treating Lyme disease has many similarities to our better understanding of autism, as well.

Tryptophan to Treat Autism

Sunday, October 11th, 2015

Tryptophan, which is a naturally occurring amino acid (a protein building block), has been found to be an effective treatment for several of the signs and symptoms of autism.

According to SelfNutritionData, the food that is highest in tryptophan is a particular species of Sea Lion*, followed by game meat and seaweed. Foods that we actually eat include spinach, fish and eggs. Milk is way down on the list. And, duck contains more than turkey.

Furthermore, as noted by WebMD, when taken in food, “Tryptophan has to compete with all these other amino acids. It waits in line to get through the blood-brain barrier and very little of it makes it across.”

A 1984 study about levels in autistic patients reported, “The blood serotonin level was significantly higher in autistic children than in normal control subjects… results suggest that autistic children have some defect in tryptophan-serotonin metabolism in the brain, which is responsible for the clinical manifestations and behavioral abnormalities of infantile autism.”

Following that, researchers who measured whole blood serotonin and tryptophan in ASD vs. neurotypical patients suggested, “… the possibility that increased gut production of 5-HT might cause…” elevated levels in the autistic population.

Subsequent researchers noted that their results, “… suggest that a low brain tryptophan availability… could be one of the possible mechanisms involved in the alteration of serotonergic function in autism.” Another paper concluded, “These serotonergic abnormalities in a brain pathway, important for language production and sensory integration, may represent one mechanism underlying the pathophysiology of autism.”

There is even evidence that suggests,”…the presence of a susceptibility mutation in the TDO2 or a nearby gene…” Recently, researchers wrote in Molecular Autism, “… decreased tryptophan metabolism may alter brain development, neuroimmune activity and mitochondrial function. Our finding of decreased tryptophan metabolism appears to provide a unifying biochemical basis for ASDs and perhaps an initial step in the development of a diagnostic assay for ASDs.”

Clinical Experience
To achieve higher CNS levels, it seems reasonable to administer 5-hyroxytryptophan (shown in the figure), which is available as a natural supplement. Using 5-HTP seems preferable, since there could potentially be a block at the first step. The dose varies from <50mg to 200mg per dose, and frequency may be up to 3 times per day. Obviously, administration depends on the individual patient’s age, size, diagnoses, etc.

Parents frequently report that melatonin shortens sleep latency (the time that it takes to fall asleep), but nighttime awakening can occur. By adding 5-HTP before bedtime, conversion to melatonin helps maintain sounder sleep.

Often, families observe that anxiety and subsequent frustration leading to aggression can be better controlled by administering this supplement on a daily basis.

Likewise, more focus and attention may accompany administration of tryptophan, making it one of the more commonly prescribed supplements in the ASD toolbox.

Side effects
As noted in the figure, one of the metabolites is melatonin, which influences sleep. Parents who notice that the child becomes less active or lethargic can simply lower the dose or frequency in order to mitigate that effect.

Patients who take SSRIs (prozac, etc.) may experience an exaggerated response. Therefore, caution is warranted in such individuals. Interestingly, this effect is sometimes useful when attempting to wean children off of those pharmaceutical preparations.

Rarely, individuals experiencing signs and symptoms of ASD actually get more hyperactive when taking this supplement. It’s difficult to understand this phenomenon, but by discontinuing the tryptophan, there is return to the previous state.

The experience of many parents has been positive, and this supplement has become a mainstay of biomedical intervention. My advice is to give it a try, about 1/2 hour prior to a high-anxiety event, such as church, a shopping mall, or restaurant, for example**.

*As an aside, 1 ounce of Stellar Sea Lion contains more than 2-1/2 grams of tryptophan, as well as selenium (498 % RDA), copper (97%), phosphorus (43%), iron (39%), and zinc (36%). Not available at Trader Joe’s.

**As in all things dealing with ASD and medical intervention, be sure to check with your physician prior to administering any supplement to your child.


Patient Testimonials about Biomedical Autism Treatments

Sunday, October 4th, 2015

Every so often, my beautiful and patient wife, Jackie, reminds me that the service websites that she searches contain letters and feedback from clients. “It’s not just advertising,” Jackie points out, “there are key comments that help me make my decision.”

In the spirit of helping other potential families decide about providing biomedical interventions for their non-typically developing children, here is some recent correspondence concerning the work at The Child Development Center of America. (names changed)

Letter from a teacher:
♥ …Also, just wanted to let you know-Billie is doing AMAZING! Therpist2 is wonderful with him. Therpist1 was lovely and worked well with Billie, however, Therpist2 has been getting him to do things that I did not see last year at all. He is trying to communicate more with me and with the other students. Billie is happy and engaged in learning when Therpist2 works with him. She is a lovely lady and so good with him. I am so pleased with what he is doing in class. Tomorrow we are going to show his science project during class – he did a great job on the assignment.
Therpist2 and I were brainstorming ideas for Billie to participate in the event at the end of the year….
Posting on Facebook:
♥ Doctors don’t know everything.
In February of 2011, the lead neurologist… told us that our oldest son (then 2.5 years old) would only continue to regress to the point where he’d become so aggressive we’d have to medicate him (which he showed no aggression at the time) and that he threw up every day bc he was autistic, cried all night bc he was autistic, and while he didn’t have a crystal ball, he said he’d probably eventually need to be institutionalized. He said he was 100% confident in his diagnosis.
Through reading and research, a second opinion and holistic approach guided by Dr Brian D Udell, extensive tests on food sensitivities and bacteria imbalances (due to antibiotic abuse from his previous pediatrician) a radical change in diet, faith and determination we reversed that diagnosis and restored his health.
♥ Fabio is responding well to the B12 shots. We are at 0.08ml three times a week for two weeks now and he is doing well. The better days are the days of the shot, then 2nd and 3rd day in between shots, he gets a little silly and extremely sensitive at the mouth area (he puts all his fingers in his mouth). Would it be ok to give him a shot every other day? I feel the effect of the shot wears out the days in between and as a result we see the silly behavior and sensitivity…
♥ Hi Dr. Udell, just wanted to show you an example of a good day for Bobby outside of all the movement you constantly see in your office… On a different (positive) note, see pic below at the School Award Assembly. Bobby walked up from the back of the cafeteria and up the ramp on to stage by himself, waited for all the other kids to get in position for pic and walked down. Huge difference from last year, he had someone with him the whole time. It was great to see all that independence growth from one year to the next!
♥ I just wanted to give you my perspective on what I am observing with Pat so you can understand why I am so adamant about increasing her dose back to the 3cc’s on Fluconazole.  She was a straight A student last year on this dose and is now struggling this school year.  I don’t know what it is about this medication but, it is magic for Pat and keeps her focused and on track.
Thanks for your help…
♥ Hi Dr. Udell. I wanted to update you on Darien’s behavior, constipation and my opinions on the Diflucan. We last saw you Sept 15.
On Sept 16, his behavior got him sent home from preschool for the day.
He was miserable Sept 17-19, constantly repeating “you didn’t say something?” and “nothing hurts?” And having tons of outbursts. The 19th was the worst. I took him to a first visit with his new play therapist and he was screaming and throwing things.
I started the Diflucan on Thursday the 18th. Stating Saturday the 20th, I have had my kid back again. He has been happy. The sensory stuff is still there but very toned down from last week. Overall, I have seen a HUGE improvement this week.  Huge…
♥ We are out of probiotics and have been for a week. We have noticed an increase in crying and pain with Robert. He also had loud farts with terrible smells.
♥ Jose is doing good. He pooped with the magnesium…
♥ I wanted to share this with you, it is about Henry and his horse riding therapy. He is doing a little better every day. Thank you for being part of our journey.
♥ Just some pics of Stan…he really is doing so much better with the htp. (5-hydroxy-tryptophan)
♥ Hello from Nassau! Sheena has been doing quite well since our visit. The Benefiber is WORKING !!!! She has a poop most days. It is formed but not hard, just pointy! … So she is doing well and we are grateful. Take care and see you in May.
♥ From a non-profit foundation “dedicated to providing …children in foster care with enriching activities, opportunities and experiences.” Here’s a great resource for all of us! “10 things every pediatrician should know about children in foster care”
♥ From Dr. Robert Melillo, author of Disconnected Kids, many tweets about “10 Things All Pediatricians Should Know About Autism” and “The Law, Antibiotics, and Autism“.
Comments about this blog:
♥ Everything is very open with a very clear clarification of the issues.
It was definitely informative. Your website is very useful.
♥ I like the valuable info you provide in your articles.
I will bookmark your blog and check again here frequently.
I am quite sure I will learn a lot of new stuff right here! Good luck for the next!
♥ I read a lot of interesting articles here. Probably you spend a lot of time writing.
Patient services:
♥ Hi Dr Udell, Karen & all your wonderful staff… for your help in the process of getting Maria switched to a bus that has AC/Heat capability… We are so thankful to God for good people like you guys that care and have helped us in the journey of advocacy for our little ones so that they can have all the resources available to be able to become functional & exceptional adults someday…I demanded that they read the letter & reviewed the case again that they realized their mistake & even apologize for their ignorance. Maria can finally resume classes & continue to enjoy learning her ABCs. Thank you again, very much, for ALL THE WONDERFUL WORK YOU DO!
♥… We are just so eager to get his little gut ready for the LDN and B12 shots……again thank you for everything!!  Our regards to the whole staff….they are awesome. You definitely give parents hope…by taking the time answer all of our questions and concerns….we are so thankful… are amazing!!

Website inclusions:
♥ GraciesAutism
♥ Jacob Velazquez, pianist

Perhaps, I’m just ‘preaching to the choir’. For years, reknowned ABA guru, Dr. Doreen Granpeesheh, has spoken about the improved outcome when parents combine ABA with biomedical techniques. Similarly, prominent researcher, Dr. Martha Herbert, has emphasized the whole body conditions that can be addressed in this manner.

By combining the time-tested improvements from ABA, OT, PT and S&L therapies, plus other emerging techniques, doctors can learn to successfully treat children diagnosed with ASD.

Notes from the Autism Education Summit

Sunday, September 27th, 2015
theo and me

September 26, 2015 Dr. Theoharides and me

In the beginning of the autism epidemic, conferences included practitioners and families interested in assisting patients in their journey toward recovery. As the information has become more extensive and complicated, the needs and expectations of various parties have spawned more specific meetings.

Tufts University professor, eminent autism researcher and program sponsor, Dr. T C Theoharides, invited me to lecture at this year’s Generation Rescue conference in Dallas. It was a chance to speak to, and with, a worldwide audience of over 700 parents whose children had an ASD diagnosis.

An Alternative Biomedical Approach to Autism Spectrum
A group of ~ 50 ‘newbies’ attended. The topic was chosen because I wished to simplify the issues and offer hope that, despite what the conventional doctors have declared, recovery is possible.

The take home messages were:
1. Traditional medicine only offers bandaids for very complicated signs and symptoms. When the only tool that a person has at hand is a hammer, everything looks like a nail. The usual medications are very powerful with lots of side effects, and provide little in the way of genuine relief.

2. There is more than one way to skin a cat. Many of the other ‘DAN’ practitioners seem to utilize more complicated and expensive protocols, not necessarily superior to the approach that I find most successful. A basic workup was offered to identify laboratory variances indicating less-than-optimal health. Addressing those areas and improving energy with techniques that are not difficult to understand or institute, usually leads to significant progress.

3. Ultimately, autism really IS ‘rocket science’. There are multiple causes and a variety of presentations that even experienced practitioners are hard-pressed to understand and treat. By understanding the basics, parents can lead a team of professionals to get their affected offspring on the right track towards an optimal outcome.

Other Lectures
For 3 days, there was a full roster of presentations covering cause, effects and treatments. In addition to Dr. Theoharides, world-renowned researchers and practitioners, such as Drs. Dan Rossignol, Richard Frye, Jerry Kartzinel, and Anju Usman, gave their learned and extensive points-of-view about ASD.

It is my belief that sometimes the lectures were too demanding. Although the audience was quite intelligent and knowledgable, they seemed to expect more in the way of treatment options for their child, than basic science.

Jenny Group

Ryan Blair, Jenny, Jodi Gomes, Ryan&Dawn Neufeld, Jacqueline&Chris Laurita

Jenny McCarthy
Cue the music, lights, cameras, video screens and action! To this crowd, the lady is a rock-star. She definitely delivered a great message, filled with personal anecdotes, humor, empathy and hope. A panel discussion followed, consisting of famous, and not-so-famous, warrior moms and dads. This was certainly one of the conference highlights.

When I announced on Facebook that I was attending this conference, one of my ‘followers’ wrote, “I think I’m going to unlike this page now,” presumably because of the ‘misguided’ position of Generation Rescue regarding the issue of vaccine injury.  Talk about the polarized world of autism diagnosis and treatment.

Bottom line – I would definitely recommend this yearly conference to parents who have the time and resources.

Sensory Processing Issues in Autism

Sunday, September 20th, 2015

What do parents mean when they express concern that their child “has sensory issues?” Even the DSM 5.0 now lists sensory processing differences as a core diagnostic symptom. A new study appeared last week showing that children on the spectrum actually respond to odors differently.

Researchers “measured the non-verbal non-task-dependent sniff response concurrent with pleasant and unpleasant odors in 36 children—18 with ASD and 18 matched typically developing (TD) controls. We found that whereas TD children generated a typical adult-like sniff response within 305 ms of odor onset, ASD children had a profoundly altered sniff response, sniffing equally regardless of odor valance.”

SmellParents may notice that an affected child smells everything and displays unconventional preferences. Some children do not even notice yucky odors, such as oral liposomal glutathione, or refuse multivitamin preparations that seem to smell just fine.

Previously, such information has provoked the proposal of a new syndrome, e.g., Visual Processing Disorder, Auditory Processing Disorder, etc. Is this Olfactory Processing disorder?

The Other Senses

Vision – parents notice eye stimming, such as staring at ceiling fans, spinning wheels or video screens. Temple Grandin has even highlighted a problem with fluorescent lights; that the cycling annoys those who are visually affected. Therapies targeting this sense have been shown to be effective.

As a clinician, visual ‘stimming’ needs to be distinguished from absence seizures, which have a vastly different cause, treatment, and potential downstream behavioral consequences.

Taste – Many parents report that their children are extremely picky eaters. Sometimes, the problem is with texture (such as crunchy, mushy, etc.) or temperature. Patients who experience speech apraxia often have difficulties with oro-motor functioning. Chewing may be a problem that necessitates blended foods and even more restriction in variety and nutritional value.

Affected toddlers who continue to drink a great deal of PediaSure® are often either allergic and/or addicted to that product because of a leaky gut, and weaning can be a slow, difficult process.

Hearing – Sometimes, affected children put their hands of over their ears as a ‘stimming’ behavior.  It can be communicating avoidance and so affected patients are literally putting their ‘head in the sand’. Often, is it due to certain frequencies (another child crying, a siren) or amplitude (vacuum cleaner, hand drier) that seem to set off a negative or aggressive behavior.

Other times, it may be due to processing, when the child doesn’t turn to voices or their name. Weakness in cognition can be another underlying cause for this difficulty. In any case, and similar to the other sensory conditions, auditory processing is definitely disordered.

TouchTouch – It appears that many affected patients have issues about being touched. Parents may report that they can only cut the hair or nails while the child is sleeping, or not at all. Some patients have complained that their skin feels like it’s on fire, while others do not seem to even notice a significant trauma. Repetitive hand washing, or tantrums from a wet shirt may be symptom of this issue, due to the child seeking input, rather than this being an obsessive-compulsive behavior.

Challenges in this sense include proprioception – the unconscious perception of movement and spatial orientation controlled by nerves within the body – as well. Some children will bounce for hours – on anything from the trampoline to the doctor’s couch – to address this issue. Temple Grandin even invented her own ‘hug machine‘ to alleviate her difficulties in this sensory realm.

These are issues indicative of crossed/missing/inadequate signaling in the CNS. Interventions that decrease inflammation and produce more efficient metabolism improve health. That leads to changes in these sensory signs of autism; as well as speech apraxia, repetitive behaviors or aggression.

Therapies directed at reducing the patients’ sensitivities to the various and specific system that is impaired can help. They can range from Occupational Therapy to Spinal manipulation.

How about our ‘sixth’ sense?” Google describes it as “a supposed intuitive faculty giving awareness not explicable in terms of normal perception.” It’s probably present in patients with ASD more than we think.

Medical Marijuana for Autism

Sunday, August 30th, 2015

Families pose lots of questions, lately, about the use of cannabis products for children who experience signs and symptoms of ASD. This brief review explores the latest available evidence regarding experience, safety and efficacy.

A turn-of-the-century review about the pharmacology of cannabis products revealed two different types of receptors; one affecting neurons, and a second that acts in the immune system. This discovery led to products that are “… already used clinically, as antiemetics or as appetite stimulants… suppression of muscle spasm/spasticity… the relief of chronic pain and the management of glaucoma and bronchial asthma.” Other ingredients, the article proposed, “… may also have clinical applications, e. g. as appetite suppressants and in the management of schizophrenia or disorders of cognition and memory.”

Some useful reviews are available on the web, and even neurosurgeon Dr. Sanjay Gupta presented his learned point-of-view on a series of CNN special reports, entitled Weed.

The active ingredients include THC (tetrahydrocannabinol), the portion that produces euphoria, etc., and CBD (cannabidiol), which appears to have more medicinal effects. Both hemp oil and CBD oil are low in THC. 

For patients who have signs and symptoms of autism, their young age and sensory issues dictate only a few palatable forms of the product, which makes absorption – and blood levels – especially variable.

What improvements?
Anecdotal stories of better seizure control, decreased aggression, and increased communication appear throughout the autism community. The most famous product, Charlotte’s web, takes its name from a child with Dravet syndrome, which causes frequent convulsions, who demonstrated remarkable results that conventional medicines failed to address, and even led to severe complications.

What harm?
Little is known about the effects in children, especially those who are developmentally challenged.

On the other hand, little is really understood about the potential harm of stimulants, anti-anxiety, anticonvulsant and antipsychotic preparations, which are often prescribed by the conventional medical community.

What risks?
Parents frequently question whether their child will become addicted to the various supplements and interventions that physicians suggest. The answer to CBD oil may be in the affirmative, but depending on the symptom improvements, that may be of little concern.

Researching and reporting this information involves separation of the medical issues from all of the other stuff that surrounds this topic. Political, emotional, social, moral, legal and self-promotional issues are woven throughout the literature.

There are different forms of autism, various strains of hemp, diagnostic differences, and individual metabolism; any or all of which could be expected to produce a myriad of possible behavioral changes.

Even though 3/4 of physicians report being in favor of medical marijuana for needy patients, it is difficult to find practitioners to dispense these substances. Let’s not kid ourselves; we have little knowledge about the individual responses of normal people to psychotropic medications. The ASD population has far less ability to express emotion. This is basically, experimenting on children.

Based on the evidence so far, there is too little scientific evidence that it is of value for the ‘milder’ signs and symptoms of autism. Anecdotally, it appears to be quite helpful for intractable seizures, as suffered by some ASD patients. Any claims of superiority from one manufacturer to another would be difficult to verify.

If the medical community had more complete answers, families wouldn’t seek help elsewhere. For years, governmental interference from disparate agencies has crippled research for problems, such as Post Traumatic Stress Disorder, even in adults.

With the explosive increase in the numbers of individuals diagnosed with ASD, it would seem that a well-designed study to assess seizures, aggressive behaviors, anxiety, focus and communication in patients with autism should be in order.

Seven Critical Developmental Milestones for Autism

Sunday, August 23rd, 2015

Unless there is a change of heart by the powers-that-be, pediatricians will continue to leave concerns about developing autism in mom’s and dad’s hands. Since ASD is among the most common modern childhood disorders, here is an informal, but well-informed list of similar developmental variations, reported by parents of children who were later found to be ‘on the Spectrum’.

Who is at risk?
There are correlations with a positive family history for speech delays, ADHD, or autoimmune disorders, especially thyroid. Other factors include; being male, born small or prematurely, moms taking certain medications, and other health conditions (diabetes, obesity).

Not much can be done, obviously, for such situations, so parents may want to just keep a closer eye.

4 months
3monthUnusual, unrelenting screaming, or an extremely ‘good’ child – parents have reported both.

Observations about feeding are important. Moms should be concerned about a weak suck, difficulty breastfeeding, or signs of colic or reflux. For formula-fed children, frequent changes due to intolerance may cast a shadow for future development.

A diagnosis of ‘torticollis’ (a condition where the head is turned to one side), or ‘plagiocephaly’ (flattening of the head), may be an early indicator of poor muscle tone.

7 months
6monthUnusual stooling patterns, including constipation and/or diarrhea, may become evident, possibly requiring medical intervention. Persistent skin conditions, such as eczema, or other chronic illness, such as bronchitis, may join other red flags.

By this time, infants should be smiling, making sustained eye contact and turning to their name.

Muscle tone should be increasing and the child should show the ability to sit.

10 months
9monthCrawling is acquired and in a typical fashion, so that ‘army’ moves or asymmetry may be a worry. The child is typically babbling.

There should not be continued, prolonged, repetitive movement, such as rocking back and forth or head banging. Neuro-typical infants are usually watching all of the action.

13 months
12monthSome type of walking should be present and there ought to be 2 or three words.

The youngster should be exploring and showing interest in others.

The introduction of new foods is not a big struggle in most infants. Delays in any of the one-year-milestones demands an exploration by the pediatrician.

16 months
16monthThere should be added suspicion if there are repeated ear infections, or other chronic medical conditions. Also, any requirement for Miralax™ should raise concern.

Staring at wheels, ceiling fans, and other spinning objects is typically only for the briefest period of time.

Any loss of speech, or lack of progress by this age is a red flag.

20 months
20monthsIf a child has required evaluation by more than 3 doctors for medical conditions, a central theme, such as autism should be considered.

Also, parents will want to be on the lookout for children who are stuck on few foods, and/or certain textures. An addiction to Pediasure™ can be an important clue.

Children who do not seem to be keeping up with peers warrant further observation. So, for first-timers, advice from an experienced, nonjudgmental grandparent can be valuable.

24 months
24monthBy now, children are playing appropriately with toys, talking to them, and playing with others.

It would be unusual to observe lining up things, looking to the side, continuing to put their hands over their ears, or excessive toe-walking.

At this age, it should be possible to separate the child from a digital device.

Most of these signs, by themselves, are only an indication for increasing watchfulness. As behaviors persist when normal milestones are missed, concerns are heightened.

In our modern world, “Waiting until the child is three,” is not an option. The earlier that appropriate intervention is instituted, the better chance of shedding the diagnosis.

By noticing these variations in childhood development, a parent can speak to their pediatrician about formal testing for this problem.

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Brian D. Udell MD
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