Archive for the ‘Holidays & Vacations’ Category

Fundraising for Autism Research

Monday, October 23rd, 2017

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

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

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

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

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

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

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

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

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

When Mom and Dad Disagree About Autism Intervention

Sunday, October 15th, 2017

Undoubtedly, the most stressful challenge that any family might face is illness in their child. Even in cases where treatment is established, e.g. acute leukemia, there are bound to be differences of opinion about which doctor, or hospital will do the best job.

When it comes to ASD however, even the diagnosis can remain in doubt. One parent, or a sibling, may have experienced “the same” symptoms, such as late speech or inattentiveness. So, the ‘watchful waiting’ advice from the pediatrician appears most prudent. A neurologist who observed your toddler for 70 seconds may have declared a normal – or dire – outcome. Who to believe? Then, there is the conventional medical community that continues to debate the condition and the ability of earlier recognition to alter the course.

Differences about the diagnosis
 Take an online questionnaire, such as the Autism Treatment Evaluation Checklist or Modified Autism Checklist for Toddlers. Although ‘experts’ may deem such surveying as ineffective, it is certainly a start. And, parents shouldn’t bother quibbling over whether Junior should get a “1” or “2” for any single answer. Observing suspicious tendencies may help convince a spouse, or doctor, that there could be real reason for concern.

 Listen to the advice of grandma or grandpa. They have raised other children, even if it was a different century. Try not to listen to advisors who have no responsibility for their opinions.

 If a therapist is already involved, ask what signs and symptoms they view as worrisome. It’s not their labels that you seek, but another professional opinion regarding suspect behavior.

 Don’t be afraid to ask the child’s teacher, or the school personnel, what they think might be different about your child. Academic staff are frequently the first to postulate a problem.

 Take videos of unusual behaviors. One parent may simply not have gotten to spend enough time to have observed a ‘stim’, or recognize activity as repetitive.

 Have the child evaluated by a trained professional. Then, insist on a precise diagnosis. Children with sensory processing, executive functioning disorder, and speech apraxia have autism.

Discrepancies about the next steps
So much inertia must be overcome to establish that first step, simply embracing traditional treatments can offer parents glimpses of improved development. OT (occupational therapy), PT (physical therapy), S&L (speech and language therapy), and ABA (behavioral therapies), must be given the time to reveal results.

At the very least, however, ask your pediatrician to make sure to perform some basic laboratory testing. Even if there is disagreement, how could it hurt to obtain a complete blood count, evaluation of nutritional status (calcium, magnesium, vitamin D, iron), and thyroid screening?

Opposition about biomedical interventions
Although the pull of the Internet is great, children are best served by contacting a physician who is involved in The Medical Academy of Pediatric Special Needs. Unfortunately, there are too few to adequately staff the burgeoning number of affected children, but, we practice state-of-the-art, evidence-based medical intervention.

By continuing our education within such a medical fellowship, and achieving a thorough knowledge of the science that appears in peer-reviewed journals, doctors have developed protocols that have been proven safe and effective. Although the costs are rarely adequately covered by medical insurance, the investment will last a lifetime. Literally.

Conclusion
Denial and delay are not in your child’s best interests. Doctors who are satisfied with the status quo will achieve that end. Modern thinking is that earlier intervention results in improved outcomes.

At The Child Development Center, our experienced and knowledgeable Practice Manager, Karen, has observed that families who seem to have the most success, “May not be on the same page, but are at least in the same book!”

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

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.

Fathers and Autism

Sunday, June 18th, 2017

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

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

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

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

© theautismdoctor.com

Thanks, Moms, for Your Special Attention

Sunday, May 14th, 2017

There are some great fathers out there, to be sure. Dads, don’t get me wrong, I’ll give you guys your due in June. I’m not judging and I have no idea how I might have done with such a challenging journey as raising an autistic child. I am simply reporting my observation that, by far, the majority of amazing caretakers out there are the mothers.

Dr. Martha Herbert has often begun her scientific presentations with a story about a friend whose adult child awoke from anesthesia and spent hours speaking normally with her mom. The daughter knew how difficult of a child she was and how much hard work her mother had done to get her to this point. After falling back to sleep and re-awakening, the daughter again exhibited her autistic personality. Dr. Herbert uses this example (plus more genuine scientific evidence) to teach that there seems to be a reversibility to ASD, and we have yet to even look at the problem in the right manner (as a whole body disorder). Her message is for moms to keep trying, as will SHE, until there is an answer.

Jenny McCarthy’s “mother warrior” credo has helped recover many children, I am certain of that. Her message has been that the general public cannot necessarily trust conventional medical thinking about the diagnosis, etiology, treatment, and prognosis for this epidemic. You can’t blame her for seeking answers for her son and all of the other children with autism.

So, in many of my posts, I write about planning, medication, special diets, supplements, and therapies. For the moms out there, that’s preaching to the choir. I’m only enumerating such chores as I detail the work that every ASD patient requires. I have learned most of my art – about toilet training, time management, addressing stims, GF/CF, cluster classes, IEPs, sensory conditioning and much much, more – from the insightful and relentless mothers who are determined to help their child recover.

Thank you. Thank you all for letting me examine and help care for your children. It has been one of the best experiences that I have ever had in my professional life.

The only piece of advice that I’ll offer in this post is this, take some time out for yourself and your spouse. I said “some”, ’cause I know that it is sometimes impossible. But, it needs to be more than “none”. The number of intact families in this practice is even lower than the national average.

At this time of year, mothers seek advice about how to continue administering their children’s pharmaceutical protocol, in camp or on vacation. The diet, vitamins, and medications that require prescriptions – all in order to get on a plane. Then, there is the plane! I’m not quite sure how families are able to get anywhere with all of the work that is required.

Mothers are special. Mother’s Day is certainly a deserved holiday.
Moms of Autistic Kids?
Lucky children.

Speech Apraxia and Autism Misbehavior

Sunday, May 7th, 2017

This week (May ’17), Penn State researchers claimed to have disproven a generally-accepted premise with an article is entitled, Tantrums are Not Associated with Speech or Language Deficits in Preschool Children with Autism.

The Study
The authors retrieved information from a previous data collection, which was not intended for this purpose, and reviewed 240 cases. Children, who were 15 to 71 months old, “… whose mental age was sufficient for verbal communication but who lacked speech did not have more tantrums than children with adequate speech. In fact, children with an expressive language age at or above 24 months had more tantrums than children whose speech skills were below 24 months.

Their conclusion is the exact opposite of what we all suspect. “Our findings and those of others do not support the belief that preschool children with autism have tantrums because they cannot speak or because their speech is difficult to understand.”

Discussion
In autism, THE toughest sign to successfully ameliorate is a patient’s inability to produce spoken language. Indeed, professionals who have chosen this undertaking will attest to significant challenges. Proven medical protocols are few, though anecdotal ones abound.

The second most difficult expression of ASD is immature conduct, including tantrums. Behavioral intervention is the proven successful treatment. Conventional medical protocols invoke potent pharmaceuticals with significant side effects and variable results, so alternative strategies have emerged.

For years, parents and professionals, alike, have accepted a direct relationship between these two disturbing symptoms. There appears to be general agreement that, as children get older and smarter, they are increasingly frustrated by their failure to adequately communicate. There is a 30-year body of literature that supports this position.

Why were the findings of this paper
so counterintuitive?

This perspective is supported by substantial research, as well. The authors argue, “The reason may in part be because of the effectiveness of interventions… which use behavioral techniques to teach children to use words, and not inappropriate behaviors, to communicate.”

In other words, if language improves through successful therapy, a child may still have tantrums if that issue is not addressed, per se, as well. Those patients who do not get adequate socialization skills continue to resort to outbursts, in order to get needs met.

The publication lacks several key elements. ‘Tantrum’ is used as an outcome measure, begging the question of whether more serious issues, such as self-injury or aggression, were considered in the definition. Medication usage was not documented. Perhaps, patients who were most disruptive received more drugs without relief or even negative side effects? Additional medical issues were, likewise, omitted from the data. In the diverse ASD population, this could be a highly significant variable.

Conclusion
The outcome of this paper could have been that children who have better language skills are more likely to have tantrums! The authors were careful to leave that out. Plus, the closing sentence includes, “Our findings do not diminish the importance of evidence-based interventions…”

If, as the paper asserts, the reason for fewer tantrums was an individual’s type of intervention, then the conclusion seems to be that Functional Communication Therapy is useful for tantrums due to autism.

Or, one might deduce that each individual diagnosed with ASD is so different in their physical and mental state, that there is no certainty, at this time, to explain why this group showed a null relationship.

Is it true? Could tantrums, “… in large part be intrinsic to autism and not driven by developmental processes, such as language.” Is it important? Why? Perhaps, such insight could provide a more effective and efficient window of treatment options. Furthermore, there is general agreement that traditional measures can play an important role in remediation.

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).

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Brian D. Udell MD
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