Archive for April, 2017

An Autism Doctor’s Earliest Signs

Sunday, April 30th, 2017

In spite of an ever-increasing number of atypically developing children, and in the face of a plethora of evidence demonstrating that early intervention results in quicker resolution of problems, pediatricians continue to appear to be more concerned about whether the vaccination schedule is current.

Every day, parents relate stories about a doctor who said, “The child is NOT autistic. He has sensory processing disorder and speech apraxia.””Give it some time,” seems to be a common mantra. Are universities teaching this wait-and-see strategy?

What other medical condition is dealt with in such a fashion? No abnormal mole is considered too tiny to dissect. A small amount of blood coming from any orifice warrants the swiftest investigation. Furthermore, it is generally espoused that early identification and treatment is the best remedial policy, stimulating the appearance of screening programs for cancer and heart disease, for example.

I have examined thousands of high-risk infants, and the younger siblings of many ASD patients over the years. This is my top ten list of physical signs in the first 18 months that should raise suspicion, and demand answers, rather than a dismissive pat on the head, accompanied by a professional’s proclamation, “I wouldn’t worry!”

Your mother thinks that the baby, “… isn’t doing alright.”

There is an inability to successfully breastfeed, especially in highly motived or experienced women. La Leche League has promoted and instructed us all in better ways to get the milk flowing, but a new era of poor suck on the side of the infant has emerged. This could either be the initial sign of a problem, and/or part of a vicious cycle leading to unusual behaviors.

A child who exhibits gastro-esophageal reflux (heartburn), persistent colic, inconsolable crying, and/or severely interrupted sleep patterns may be displaying a red flag. Of course, mild cases could be due to individuality, parental indulgence or ‘milk intolerance’. In this century, think: a condition that deserves investigation, and thoughtful intervention. Prescribing Prevacid is not a workup.

Signs of poor core tone may include a twisted neck, flat head, or delays in motor milestones. In the previous century, doctors were worried about cerebral palsy. Now, it should be considered as a possible earliest sign of autism.

Likewise, the absence of crawling, or persistent ‘army crawl’ has been a documented occurrence in infants who later show ASD.

A breast-fed infant who poops less than twice per day, or a formula fed child who ‘goes’ more than 4 times should raise concern. Unusual stooling often indicates abnormal gut flora, causing direct inflammation and/or additional bacterial changes, and possibly further alters nutrition.

A very early ear infection, or any recurrent medical condition is notable. At the beginning of my 40-year experience with at-risk children, antibiotic use in the first year of life was only a fraction of the exposure that occurs in this century. Investigation of immune competence has everything to do with the modern epidemic, I am certain.

The likelihood of ‘food allergy’ in the first year of life is actually very low. When a pediatrician assigns noisy breathing or fussiness to this presumed ‘diagnosis’, beware that they are not practicing real evidence-based medicine.

After the first few months, infants will look at faces, follow, and later, begin to imitate. If social interactions, such as rolling a ball back-and-forth, do not emerge – and certainly if they disappear – the child needs to have a thorough medical evaluation.

Speech that begins, but does not progress is a worry. When language fades, it is never normal. Period.

Conclusion
Any of these signs could just be a benign variation of normal development. A few are reason for real concern, exploration, and early intervention.

I have presented similar information in previous posts. In addition to these physical signs, I have written about other high-risk situations, and associated factors that assist a physician in ascertaining a specific diagnosis. It sometimes helps to provide regular updates for parents to show their child’s doctor, in order to get things moving on the right track.

Getting a Special Needs Break

Monday, April 24th, 2017

Parents of children with developmental disabilities rarely get a break. Sometimes, it is not even possible to have a child watched for a couple of hours while shopping, taking care of your own health, seeing to the needs of other children, or running household errands.

As a practitioner who cares for patients with special needs, I often find myself with no one to care for my practice, when I’m attending a meeting or taking a rare vacation. The wedding of a dear friend in California recently highlighted this issue. Patients still get fevers, rashes, diarrhea and even seizures. Medications may not be working, or causing untoward side effects. Parents from all over continue to experience the frustration of dealing with the autism epidemic as it emerges in their part of the world.

Acute illness can be addressed locally by pediatricians, hospital emergency rooms, or urgent care centers. The main difficulty is that doctors are not trained in special needs care. Although they may be able to correctly diagnose and treat an ear infection, they are usually way too quick to prescribe antibiotics or fail to perform appropriate laboratory testing. With the increasing popularity of group practices, continuity of care is compromised. Often, children go from one doctor (or nurse practitioner) to another, further increasing confusion, and rarely getting to the underlying problem(s).

The Child Development Center of America
It would not be possible to keep up with all of the patients’ problems if it were not for a digital connection and web communication. Many mornings start with a picture of poop or an unusual skin lesion. It may not be as precise as touching and feeling the actual patient, but I have been able to handle a multitude of problems because of the Internet.

More importantly, I enjoy a great staff, led by our practice administrator Karen Vossen, herself the parent of two children with a diversity of medical problems, including autism. Ashly, at the front desk, speaks fluent Spanish, which is a must in such a diverse South Florida population. Likewise, Isabella, who interacts with the children, speaks additional foreign languages. Lisa, who handles the books (among her other duties), has four boys, including one who is doing great with his ASD. Leilani, our newest member, has experience with autistic children and hopes to become a speech therapist.

Most assuredly, I have a great family who understands my life’s passion. I am encouraged by my beautiful and patient wife, Jacqueline. She is the person who mused me into this amazing journey and constantly reminds me that my physical and mental health matter, as well.

Useful Strategies
First, in times of extreme stress and exhaustion, take a long, deep breath and congratulate yourselves on the ability to deal with so much constant pressure. We are all doing the best that we can for the children. Let’s not forget that maintaining our own wellbeing is paramount to assisting others.

Recharging the batteries by exercising, personal pampering, date nights and hobbies that take our focus elsewhere, even if only for a brief period, is a necessity.

Depending on the degree of a family member’s difficulties, respite care may be essential. In some states, the National Respite Network may be able to provide some necessary assistance.

The Autism Society and local chapters may provide a great source of support. Joining such networks can be especially helpful for parents of newly diagnosed children, letting families know that they are not alone in this journey. Local organizations, such as your state’s Developmental Disabilities Council or Family Services Agency (Broward 211 in Florida, e.g.), may be a useful choice.

Finally, try to find a good Special Needs practitioner and stay away from Dr. Google.

Conclusion
Although it’s not exactly the same problem, the challenge of finding help in this age of an increasing number of developmentally demanding children, complicated by a paucity of available resources, is shared by parents and professionals, alike.

FDA Warning About Autism Treatment

Sunday, April 16th, 2017

The FDA took the time, this week (4/2017), to sound an alarm about their notion of potentially dangerous off-label ASD treatments, by issuing, “Autism: Beware of Potentially Dangerous Therapies and Products“.

The consumer update begins, “One thing that is important to know about autism up front: There is no cure for autism. So, products or treatments claiming to “cure” autism do not work as claimed. The same is true of many products claiming to “treat” autism or autism-related symptoms. Some may carry significant health risks.” Really?

What are the approved therapies?
According to the document, the antipsychotic drugs Risperdal (risperidone) and Abilify (aripiprazole) are apparently not considered to be that dangerous. Increased death rates are noted in the Physicians Desk Reference, due to the the former medication. The latter pharmaceutical agent contains this caution, “A causal role has been demonstrated with antidepressant use and emergence of suicidality in pediatric patients and young adults…”

Clinically, patients who have taken these drugs have shown markedly increased appetites (leading to obesity), exhibited new tics, demonstrated a ‘zombie-like’ affect, and have been very difficult to dose correctly. Breast enlargement and lactation have been reported with these meds, as well.

What does the FDA consider dangerous?
About metal-removing therapy, “FDA-approved chelating agents are approved for specific uses that do not include the treatment or cure of autism, such as the treatment of lead poisoning and iron overload, and are available by prescription only.” So, this government organization has determined that environmental poisoning is not a cause of autism.

Hyperbaric oxygen treatment has been cleared by the “FDA only for certain medical uses, such as treating decompression sickness suffered by divers.” The document failed to mention that it has been proven effective for non-healing wounds and post-traumatic stress disorder, as well.

Clay baths, and “… various products, including raw camel milk and essential oils. These products have been marketed as a treatment for autism or autism-related symptoms, but have not been proven safe and effective for these advertised uses.” Don’t expect millions of dollars to be poured into research about the effectiveness of these innocuous interventions.

If you wish to utilize essential oils,
do so at your own peril !

Discussion
The medical literature continues to question the usefulness of Abilify or Risperdal for the treatment of signs and symptoms of ASD. But it is perfectly clear that, even the supporting literature never makes any statement about apraxic children. Stopping the banging doesn’t produce speech. Plus, socialization only improves to the extent that these ‘safe’ drugs reduce unusual behaviors or decrease aggression.

Moreover, the body systems that are in need of repair and optimization do not get addressed – indeed, are even masked – by such a pharmacological bandaid, which leads to further complications. Often, this makes the child with increased resistance to pain even more stuck with their autistic behaviors. Difficulties in the gastrointestinal, immune, and nervous systems, go unrecognized. Mitochondrial functioning is affected, compounding metabolic challenges in this vicious cycle.

Parents seek ‘risky’ therapies because of the inadequacies of the medical profession in just about every aspect of autism diagnosis, prevention, treatment and care. Rather than elevating autism anxiety over the dangers of mostly mild, possibly helpful, but unproven interventions, we would be better served by an honest evaluation about the overuse of the ‘on-label’ products. This is especially true in disadvantaged populations. When functional medicine doctors, such as myself, utilize these drugs, it is usually as a last resort, after explaining risks/benefits to parents, with close follow-up of the patients’ condition.

Conclusion
TV commercials tout incredibly risky medications, for diseases that range from restless leg syndrome to cancer. “Ask your doctor,” we are told, “if this is a good drug for you!” Then, a list of very scary side effects is enumerated. Well, you could just ‘ask your doctor’ if camel milk will cause seizures or death.

Parents of children with developmental challenges have plenty of work to do, just getting through each day. This useless memorandum will, most probably, simply be ignored. For those who feel that the consumer update was produced to pursue some financial and/or political motivation, and/or is another example of bureaucratic waste, you may feel compelled to address the (ir)responsible organization (click here).

Stem Cell Therapy for Autism… cont’d

Sunday, April 9th, 2017

As doctors try to understand and consider various emerging therapies for patients experiencing signs and symptoms of autism, the question of Stem Cell therapy has come to the fore. A Duke University professor barreled onto the scene, recently, with a pronouncement that sounds like a cure, even though it’s not.

Understanding the study
The project is Clinical Trial to Evaluate the Efficacy of Umbilical Cord Blood to Improve Outcomes for Children with Autism Spectrum Disorder. This was the first phase. The goals were to determine safety, and to evaluate the usefulness of a variety of tests to assess whether the treatment works.

Does giving a child’s own cells, which were collected from the umbilical cord at birth, back into their bloodstream, result in any adverse events? The report broadcast on CNN focused on a 7 year-old who seemed nearly OK, playing with her older, neurotypical sister. The treatment had taken place a couple of years earlier.

Dr. Joanne Kurtzberg, one of the researchers, proclaimed, “We saw improvements in 6 months…” She used the word curative twice in the same sentence, even though her point was ignorance of that outcome. She concluded the interview with, “of course we have to do a placebo controlled randomized trial to answer the question…” The Dad was more realistic, as he commented, “The autism is still there…”

The research involved 25 children, 2 – 6 years old, who had banked cord blood available. “Significant improvements in children’s behavior were observed,” in the majority of children, and “were greater in children with higher baseline nonverbal intelligence quotients.”

“Assessment of adverse events across the 12-month period indicated that the treatment was safe and well tolerated,” claims the abstract. In fact, agitation was a common complaint, requiring additional medications, as the infusion was administered. The authors admitted, “As an uncontrolled open-label study, it is not possible to determine whether the observed behavioral changes were due to the treatment or reflect the natural course of development during the preschool period.”

Discussion
When considering such an extreme treatment, the primary driving force should be the child’s degree of involvement with their developmental challenges. If your youngster is proceeding on an acceptable trajectory, 1) Is it worth the known, and unknown, risks? and, 2) What improvements are you actually seeking? In this study, as in other successful biomedical protocols, the less-affected patients showed the best improvement.

This investigation was done under rigorous conditions by highly trained university personnel, and utilized the patients’ own cord blood. Do stem cell centers around the world offer a similar degree of confidence as regards cleanliness, safety, follow-up, or the ability to handle emergencies? Are outcomes the same when using fat cells that have been turned into stem cells (explained in my previous blogs on this topic)?

The type of autism has got to be a factor, as well. Would a patient with a significant chromosomal variation or metabolic disease, for example, experience the same improvement?

On a positive note, it is encouraging to observe that the conventional research community implicitly concurs that successful treatment involves “modulating inflammatory processes in the brain addressing the reduction of body inflammation to improve ASD.”

Conclusion
We all wish to see a real breakthrough in autism treatment. It appears that stem cell therapy may represent a significant advance. But, that is all that it will represent. Children will still have yeast, and need follow-up labs, and ABA, and Speech therapy. Stem cell intervention seems to represent another, maybe better, certainly more costly, alternative protocol.

Thankfully, Phase II, a randomized, controlled study to assess efficacy, is now underway.

Seeking Real Autism Awareness

Saturday, April 1st, 2017

It’s the time of year for Spring walks, fundraisers, and other events to promote autism awareness. Heartwarming stories are featured in social and news media.

This is my wish list for true mindfulness of this 21st century childhood disorder.

A good start would be general acceptance that ASD is not ‘retardation’ dressed in modern nomenclature. Intellectual Disability is an even less precise diagnosis. And, most autistic people possess normal intelligence.

The public demonstrates increased understanding, and empathy, for families who experience this disability. There is no need to chastise the mom of a kid who is experiencing a meltdown at Walmart.

There should be general agreement that Hollywood’s interpretation of people with ASD is one-sided, at best.

We’ll know that we’re at the ‘next step’ when people stop asking, “Can you really get better from autism?” This is especially true for professionals.

Doctors need to buckle down, get their heads out of the sand, and take the time to learn about this condition. As the population ages, general practitioners, specialists, and sub-specialists will all need to understand how to care for such patients.

Research institutions recognize awareness by fulfilling their obligation to expand into every area of this epidemic. Professors willing to employ twenty-first century thinking can make a big difference.

Schools, already admittedly taxed by the demands of an evolving neuro-diverse student body, make a point of searching for improved means to address this growing population of our special needs population, as well.

Public servants can display their understanding by offering courses, services and information regarding appropriate response to citizens who react in an unfamiliar, or unexpected manner.

Choosing a career in one of the occupations that addresses the specific issues experienced by so many peers (or, even their own family) would be a worthy indication that young people are getting the message. Occupational, physical, speech, and behavioral skills are already valuable, sought-after professions.

From this doctor’s examining chair, real autism awareness is when my patients actually become aware. It is difficult to adequately express my satisfaction, and appreciation, when a mom writes about her kid who munched his first French fry, a toddler taking her first steps, or a child who says, “I love you.”

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Brian D. Udell MD
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Davie
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