Posts Tagged ‘hyperbaric chamber’

MAPS Fall Conference 2013 – Day 3

Saturday, October 5th, 2013
Last eve's Mojito Bar! We needed a break.

MAPS Friday Night Dinner

Saturday:

Allergies in Special Needs Children

Dr. Jeffrey Bradstreet – Introduction to Allergies in Special Needs Children
With a less-than-healthy intestine, there is loss of tight cellular junctions, allowing toxins and food proteins to be exposed to blood, leading to immune activation in susceptible individuals. Dr. B described inflammatory reactions in the gut and brain of patients with ASD. Eventually, behaviors, not merely mucus membranes, are affected. The presentation concluded with the case of an ‘allergy kid’ – a patient affected with autism who significantly improved with an aggressive workup and treatment of the patient’s immune system.

Dr. Dan Rossignol – Review of Nutritional Supplements for Allergies
…As always, a thorough, interesting and pertinent literature review. Supplements for allergies, which appear commonly in ASD patients, were reviewed. Seasonal behavioral regressions could be a clue to an environmental (over) reaction.
Dr. R discussed naturopathic supplements, many of which demonstrate equal improvement to the traditional anti-allergy meds.

Dr. Theoharis Theoharides – Allergy of the Brain
The question to be answered, “Is a Subtype of Autism an Allergy of the Brain?” Dr. Theo showed that activation of specialized cells (mast cells), could occur in the absence of allergens (including stress, organisms, etc.). He helped discover that the manner in which the mechanism works is much more complicated than previously thought, and how that process leads to inflammation.
Further evidence was presented that allergic diseases have influence on ADHD and ASD. Mast cells exist in the lining of the brain, and what happens when they are activated could lead to symptoms. He concluded with a therapy that decreases mast cell activation (Neuroprotek, officially not mentioned by name). Oh well, he says any profit goes to charity, and I believe him.

Dr. Michael Elice – Treatment for Allergies
I saw a presentation by this allergist ~ 6 years ago, and his philosophy really set the stage for how I think about ASD.
Taking a detailed environmental history was stressed. “Autism Spectrum represents a collection of system disorders that are treatable and recovery is possible.”
He discussed traditional allergy testing and buildup of tolerance, but that takes time. “With a low ‘specific dose ‘intranasal therapy, responses are often observed in 2- 6 weeks as opposed to the 4-6 month buildup. This type of treatment has resulted in decreased hyperactivity, improved sleeping habits, better socialization and loss of deterioration during allergen exposures.”

Dr. Anju Usman – Low Dose Antigen therapy, also known as Ultra Low Dose Enzyme Activated Immunotherapy.
This is a broad-based treatment that is meant to desensitize to allergens (a bit differently than Dr. Elice’s protocol). Dr. Usman talked about environmental pollutants such as inhalants, products, chemicals and bacteria as well as food allergies.
She described a couple of patients in whom this type of treatment improved skin, G-I, and some behavioral signs and symptoms.

Dr. Richard Frye – N-acetyl-L-Cysteine Treatment in Autism
This learned child neurologist described the recent good news about successful treatment with NAC. The preparation is utilized in mitochondria, requires energy, and detoxifies. He described the ability to detect the subsequently derived protein, glutathione, in autistic brains, especially in those areas that seem to be functioning incorrectly in ASD. This reaction is helped by folinic acid and B12.
I questioned Dr. Frye about the use of glutathione itself (instead of its precursor), such as that which we use at The Child Development Center. His response was that he wondered whether or not balance is achieved with an oral glutathione. Is that all, doc? Well, he helped me with some other patients.

Dr. Dan Rossignol – Update on Clinical Findings and Treatments
This was a review of the 2013 literature about ASD.
First, there was a discussion about the new DSM-5 definitions, which may change the reported incidence of autism.
Then, Dr. Dan gave his signature rapid-fire, research-paper-a-minute (literally, 39 papers reviewed in 45 minutes), insightful, clinically useful, understanding of that research.

Acceptance by the AAP and the traditional medical community is important because it will help patients. Doctors need to be more open-minded and respect our colleagues and the other professionals who are addressing the autism epidemic.

The MAPS conference has gotten very green, btw. All of the material was downloaded from the Internet, saving lots of trees (hundreds and hundreds of pages provided to ~120 participants).

This was a great conference with the most up-to-date scientific information provided by experts who are helping to recover many affected patients. Plus, there was lots of networking and brain-picking.

Home, sweet Fort La-De-Dale. Starting Monday, more patients and a bit more wisdom.

Day #1 (click)
Day #2 (click)

MAPS Spring 2013 Conference

Sunday, March 24th, 2013

This past weekend marked the third Medical Academy of Pediatric Special Needs Conference, which was held in Costa Mesa, CA. I have made sure to attend every one. This time, I had the added challenge of traveling on my damaged and recently repaired left foot. But, thanks to the help of my beautiful and patient wife, Jackie, I managed to fly, hop, crutch and wheel across the country.

What started out as the “Defeat Autism Now!”(DAN!) movement, then morphed into the Autism Research Institute (which continues to support autism research and provide needed information and support for families and individuals with autism spectrum disorders), has finally become a full-fledged medical society “for the treatment of children with autism spectrum disorders and chronic special needs.”

These courses provide the required CME credits to attain a MAPS fellowship certification. This educational experience prepares practitioners from all over the world to deliver state-of-the-art care. Qualified and experienced doctors and other professionals offer detailed scientific evidence and clinical information in order to further understanding and treatment. We review older therapies, some of which may still have value, the most common protocols that the participants presently utilize, and the emerging technologies that could lead to better treatment.

The advanced courses that I attended included the following discussions:
(Day 1): Hormones & Neurodevelopmental Disorders, led by Dr. Anju Usman. Covered subjects included the CNS, HBOT and treatments such as galantamine, phosphatidyl serene, propanolol, cortisol, oxytocin, secretin, the endocrine system, calcium, the adrenals, and hormones. We also learned about remedies from plants, foods and other cultures.
Evaluation & Treatment of Older Children was presented by Dr. Dan Rossignol, who gave one of his stellar presentations thoroughly reviewing the scientific literature that helps support our various treatment protocols. Case presentations with enthusiastic audience participation rounded out the afternoon.

(Day 2): Gastrointestinal & Nutrition. Dana Laake (Dietician-Nutritionist) reviewed Advanced Nutritional Assessment including labs, signs and symptoms, and special diets (all of them, I think). Dr. Elizabeth Mumper immersed us in G-I testing and discussed “clinical pearls” – what practitioners should look for to help patients with symptoms due to an unhealthy gut. Dr. Rossignol reviewed the pertinent literature and more clinical cases. Dr. Jeffrey Bradstreet taught us about testing and treatment options for autistic gastrointestinal disturbances. He concluded his talk with a thorough discourse about fecal transplants. No shit.

(Day 3): Cutting Edge & Novel Treatments. There were lots of experts, lots of treatment possibilities, and lots of opinions. Need I write more?

The MAPS conferences are no boondoggle. Classes go from 8-to-6 for three days, with formal testing at the end of those long sessions. The most important functions include networking with doctors from all over and discussing cases – just like your children – from the youngest, to the most challenging and complicated. This information adds immeasurably to our individual clinical experience.

What’s new is that your children – young and old, disruptive or spaced, apraxia or echolalic, unfocused and anxious, suffering from seizures or repeated infections – are being discussed, reviewed and considered as patients who deserve appropriate medical attention.

MAPS participation grew by a third this meeting, but that is still not enough personnel to address the burgeoning patient load. It’s a great feeling to know that each year we are getting closer to the causes and cures for this ever-increasing epidemic.

Where to Start when Autism is Diagnosed

Sunday, July 22nd, 2012

The first challenge that parents encounter when faced with a child who may not be developing in a typical fashion is getting a correct diagnosis. One doctor says “PDD-NOS,” another claims “Just a speech delay and some ADHD,” and yet another specialist suggests “Let’s wait and see.” We are knee-deep into an autism epidemic, Ladies and Germs! If your child produces few words by 15 months (or displays a loss of words), has problems with eye contact or socialization, exhibits repetitive behaviors and has signs of core hypotonia (central weakness), you are dealing with the red flags that signal ASD.

The top Google searches for what to do about your suspicions include an inaccurate (at least, dated) list of signs and symptoms, an accurate reference article by the NIH, a parent guide that offers good advice, a fairly helpful (but less-than-practical) step-by-step guide, a webMD primer, and several columns expressing sympathy and empathy. What they all seem to have in common is the advice that parents need to learn everything they can in order to help their child. While that is an admirable and helpful pursuit, isn’t it more common, when a family member is struck with a complicated medical condition, that a trusted medical professional is pursued in order to assist in the best course of action? Doctors take note – you have been left out of the loop.

Where to start:

1. Forget about all of the other opinions and seek a physician who understands that “high risk” for autism means close observation and initiating therapies to address the developmental condition ASAP. If the child is simply a “late bloomer,” so what? Unfortunately, this is often the most difficult step. Generation Rescue’s website is a good start, and the emerging Medical Academy of Pediatric Special Needs is working on providing significant resources.

2. Parents desire to do everything they can, within reason, to help their child. In an abundance of caution, initiating intervention at the earliest possible age can be therapeutic at best and reassuring at least. ‘Kick-starting’ speech and language and/or assisting developmental milestone acquisition with physical therapy are some great ways to get started. The family will become more comfortable about the diagnosis, understand ‘the journey’ better, and will frequently get to observe some quick improvement.

3. A popular reflex after searching the web is for parents to give the gluten-free/casein-free diet “a try.” Talk About Curing Autism offers a great deal of helpful information on this intervention. While this step may be important, there are some pitfalls that accompany this decision. If a child who is put on a casein-free (milk protein) diet is very sensitive to soy, the diet may not appear to be ‘working’, if there was a change to soy milk. Likewise, if the child is eating lots of peanut butter, for example, and is allergic to it, the diet may not appear to be helping. Finally, if the child has no problem with dairy or wheat, the diet won’t be helpful. Also, dietary intervention sometimes takes time (months) and patience before improvements can be seen in communication or behavior.

4. If you haven’t done step #1 yet, it belongs here: Find a competent autism practitioner who understands and has TREATED autism (not just diagnosed it). If you don’t do this step, you are getting into territory which can result in little improvement, significant regression, or a sense that you are not doing “everything that can be done.” An appropriate medical workup should include a blood count, liver, kidney and thyroid function, nutritional health, and gastrointestinal testing. Blood, urine and stool samples may be required in order to gather such valuable and pertinent information about the patient.

5. Make sure that the child’s overall medical condition is clear. Simply because the child appears healthy, don’t forget that they are relatively non-verbal, resistant to pain and have a narrow range of expressive behaviors. How do we really know if the child is healthy unless appropriate lab work has been collected and reviewed so that your child is in top shape? I had a patient last week who was mildly anemic. Now, it may not seem like much, but, why worry about HBOT (which is an expensive and resource-intensive intervention that brings oxygen to distant tissues), when all a patient may have needed was a bit more iron in their diet? Similarly, gut-related signs and symptoms are rampant in ASD, and an astute practitioner needs to ferret out and treat such maladies.

6. Follow a protocol. This is one of the most difficult parts of the initial treatment, because apparent regression can follow even the most uncomplicated interventions. For example, the negative behaviors that may result from bacterial or fungal ‘die-off’ when strong probiotics are initiated is frightening to families and requires coaching and counseling in order for the patient to achieve G-I balance. This step alone has discouraged too many parents from continuing biomedical intervention. As we increase cellular energy with supplementation, I frequently advise parents, “The side effect of giving a patient more energy is that the child will have more energy!” For aggressive or disruptive children, this is no small matter and there may need to be some changes or additional supplements to handle that alteration. In practically all areas of medicine, following protocols and altering them as things change is the hallmark of a successful course of action.

That’s it. Just a few steps that should be taken once the diagnosis is entertained to insure that, by today’s standards, everything that CAN be done is being done for your potentially-affected child.

Stem Cell Therapy for Autism – Final Word

Friday, May 4th, 2012

This has been a pretty exhaustive series of posts exploring and explaining the most recent developments in stem cell therapy as they pertain to ASD. These blogs are meant for parents who are considering the procedure (wiki isn’t helping entirely, right?), but many readers may choose this conclusion as their only ‘read’, which is fine. However, the extensive material in the preceding articles can assist parents who want to be better informed.

My goal was to review the current state-of-the-art regarding Stem Cell Therapy, in as neutral a manner as possible. The medical community is fairly dogmatic against high cost, potentially high risk procedures which have little scientific confirmation, and practitioners of such therapies are often labeled as charlatans who prey upon desperate families. My personal bias is, likewise, to be very suspicious of such miracle cures. However, as I have written previously, traditional medicine has so f*#%ed up the diagnosis, etiology and treatment of the condition we call autism that it is no wonder that parents seek assistance elsewhere.

The ‘pros’ of Stem Cell Centers can be found at websites such as this. The cons are exposed in detail at quackwatch. And, don’t forget the schlep to India. So far, this is my  dollars-worth of advice, “What would you do if it were your child, Dr. Udell?” – from a practicing pediatrician’s point of view:

One of the most troubling contentions that I have encountered when interviewing Stem Cell proponents is, “There are practically no risks to the patient because the type of cells that are now used (whatever type that they are using) are safe.” First, nothing that a doctor does is perfectly safe. I even have to counsel parents about the potential die-off from probiotic treatment that can result in regressive behaviors, lack of sleep, rashes, bowel problems and such. Second, there are other increased-risk modalities that often accompany stem cell treatment including; lumbar puncture, intravenous line placement, steroid usage, antibiotics or anesthesia. Third, “Studies have shown safety…” Since when did the Autism community believe that statement? And what about long-term complications? No one can answer that honestly, because no one knows.

This story is a clear example of the issue. In the past month, several children in my medical practice have suffered some especially disruptive behaviors. One particular beautiful child just got her caretaker (of 2 years) to quit because she broke the poor lady’s arm. Her mom said, “You know, I spoke to a woman who has lots of bucks, who had a child – although it was different sex, different age, different diagnosis – who said that there was an improvement with the therapy. Even if I got a small improvement in ‘Suzie’s’ (self-injurious) behavior, I would be glad to spend the $20K.” Now, I had to speak to this mother for 20 minutes to convince her to give a short course of steroids, and it was a struggle. What is the attraction?

Parents can be driven to the point of trying, literally, anything to create a break in the action, even if only is only temporary. Very few people experience or can even comprehend the complicated feelings of parents with severely affected children. That’s why this mom wasn’t considering transplant risks. “Just give me a light in the middle of the tunnel,” is a fair plea. What patients don’t hear about is when a treatment has failed or turned out to be a waste of time and money – there are no blogs about that. There is even one patient in our practice who developed ASD after a stem cell transplant (required for a different medical condition),

What should be happening? There should be more research centers, if not performing the procedure, at least collecting reliable data from the patients who have undergone the treatment. The patients need to be assessed in some formal way about their level of ASD involvement and improvement(s), if any. Those parents so set on going forward with the procedure should be enrolled in a proper setting with all the accepted standards. For those professionals performing the protocol, it’s the only way that they are going to be believed, anyway.

You can’t ‘buy’ your way out of ASD. I takes lots of love, time, work, perseverance and luck and involves a combination of treatments, especially targeting the social domain. Some improvements may take time to evolve into useful behaviors. Steps forward by an autistic patient tend to be incremental and require reinforcement and practice so that neuro-typical behaviors can become embedded into the personality.

No, I can’t recommend the procedure at this time. I can, however, understand how parents arrive at the decision to move forward with the treatment, but not without exhausting all other reasonable and better documented therapies. If you have the time and money and your child continues to be severely affected, at least be well informed and maintain reasonable expectations.

Addendum:

 January, 2014

I recently interviewed a parent who related the following story: “I was so thrilled after the treatment. The child was more calm than ever. I really had hope, for the first time in years.” 
“Would you do it again,” I asked?
“Well, no,” Mom said. “After about a month or so, all those gains in behavior were lost. That was too much money for such a short period of improvement.”

July 2014
Duke University Trial:
http://sfari.org/news-and-opinion/news/2014/experts-balk-at-large-trial-of-stem-cells-for-autism

“There’s no question Kurtzberg is the right person to do this,” says Emanuel DiCicco-Bloom, professor of neuroscience, cell biology and pediatrics at the Rutgers Robert Wood Johnson Medical School in New Jersey. Still, he says, “I think it’s early times.

Chelation Therapy as an Autism Treatment

Friday, April 1st, 2011

When asked about my unique practice, questions #3 or #4 involve: the “removal of heavy metals” and HBOT, and I have recently posted regarding the latter. According to the Autism Research Institute’s Parent Ratings of Behavioral Effects of Biomedical Treatment, chelation therapy is rated highest on the scale of effectiveness for biomedical treatments, involving greater than a thousand responders. Although such a survey is not regarded as highly scientific evidence, it is interesting because sometimes the patient might be correct. “Outgrowing” unusual behaviors and  “he’s a late talker” is pediatric advice for the last century.
So, let’s take a look at what they’re talkin’ about.

Why it might work:

The removal of toxins from the body is certain to aid in the improvement of a patient who exhibits signs or symptoms that are consistent with an offending agent. It may be mercury, which is the metal that has caused such a controversy in recent years. Even aside from the thimerosal which was in/wasn’t in, is in /isn’t in, did cause/didn’t cause whatever vaccine-implicated distress, there is some convincing evidence linking mercury to autism.

It may be lead. In my experience chelating lead-intoxicated children in the 1970’s, the presenting symptom was mental retardation, not autism. However, there is a great deal of peer-reviewed research that links lead to the incidence of ASD, both with proximity to highways and exposure.

Then there is arsenic, a toxic substance which is used in pesticides, which is yet another common metal(oid) that carries risk. Lots of that stuff in our environment. There really should be no argument that such toxins (and many, many more), which are potential causative agents for neurologic symptomatology abound and could affect humans.

Dr. Kenneth Bock lectures about the body’s ability to handle toxins being similar to holding a handful of red colored balls. Add some yellow ones, and orange, etc., and sooner or later the balls start to fall out of our hand. Following that metaphor, the body utilizes other means to contain the toxic load. Inflammation takes an energy toll, and so, perhaps, neurotransmitter production is ultimately affected. Especially in a nascent central nervous system, such as that in a fetus or an infant.

Poisons abound, the children represent the “canary in the coal mine” and there is this new neurologic-enterologic epidemic. Therefore, the removal of such agents has become a popular therapy.

Many disagree:

Dissenting opinions are in the majority. In 2006, The National Institute of Mental Health announced that chelation therapy would undergo a formal study, but that was called off in 2008.

Paul (I-never-met-a-vaccine-I-didn’t-like) Offit doesn’t like it (’nuff said). Additionally, chelation is not approved for the treatment of autism, so there are inherent risks involved when physicians undertake the treatment. I believe that there are even more risks involved when non-physicians (including parents) decide to tinker.

According to the literature, some children have even died from the intervention. One objection that the medical community is united upon is the practice of removing metals even when blood, hair, and/or urine levels do not indicate toxic levels. Plus, there are some protocols that only or mostly evaluate urine metals after administering challenging medications.

TheAutismDoctor Bottom Line:

Physicians need to agree on an “autism workup”. Some patients may require an evaluation for heavy metals, such as one who has been sucking on the lead weights inside the curtains, or the kid who puts everything in his mouth.

Dr. Anju Usman, a respected DAN therapist, believes that chelation helps break up the armor that nasty cooties in the gut produce to protect themselves. After documenting that a family understands that the child’s symptoms may be due to heavy metal intoxication, or the symptoms may improve from such a therapy, the risks are explained and recorded. Perhaps an EKG could affirm cardiac health and liver and kidney function should be examined. A physician then orders the chelating agent (usually EDTA, DMPS, or DMSA) that would be most likely to reduce the offending metal, and keeps detailed notes regarding results and appropriate follow up laboratory testing. Urine and stool output are documented every day during the intervention. That is a great deal more than has been done until now, but that doesn’t mean that things are always done correctly in the alternative medicine community.

All of this notwithstanding, my favorite method for removing heavy metals is to rely on Nature. The healthier the patient, the more likely it is that their own body will be able to excrete agents that cause damage – more like the rest of the earth’s already-poisoned population.

Hyperbaric Oxygen Treatment – A Final Word

Saturday, January 29th, 2011

What’s the bottom, bottom line? Just a second…(as my grandmother used to say)

In my practice, I spend time advising about HBOT and I try to accept that each parent is doing what they think will be best with the resources that they have (could have, wish to have) at their disposal.

There is one type of family who is considering this valuable resource  who is very serious about exploring complementary and alternative treatments which might help the child – even if miraculously – and don’t wish to involve medicines, especially conventional medicine, especially if that is what got their child into this predicament.

Another group of parents are those who have gone from one treatment to another – sometimes maybe too quickly to ascertain true results, and others who feel that they really gave whichever-treatment-of-the-year a fair try. HBOT is next on the list.

I care for a group of patients who come from foreign countries – starving for a shot at the box.

I also feel that there is, unfortunately, another type of family who is considering this valuable resource,  who is very serious about exploring complementary and alternative treatments which might help the child – even if miraculously – and don’t include (or continue to include) the traditional therapies.

The idea is, here, folks, to get the child more healthy so that the proven interventions will take effect better and quicker. All of the great Hyperbaric Centers will second this emotion.

See a pattern here? Right, there is no pattern. We’re people. Parents faced with impossible decisions. Would I recommend this treatment for my autistic family member? Optimally – and I mean optimally – resourced families. These are people who have the time and resources to add to their already busy schedule; full of the typical kids’ activities, and therapies and schools for the affected children, and cooking for a gf/cf dinner. If you could do all of these things – it seems that it could be worth the try. It is not a waste of time, even if it helps by assuring a family that they gave their child that alternative opportunity. If there is an incremental increase in language or behavior, so much the better as every bit of development in the right direction is part of the journey.

Less optimally resourced families. There are resources available to acquire insurance reimbursement and financial aid available in certain situations. Neighbors may have chambers to borrow and I have heard of parents’ groups trying to purchase equipment to share. My only comment here is that YOU BETTER KEEP THAT CHAMBER CLEAN. Kids are dirty little boogers and transferring cooties is not a good idea. There is a mild HBOT service that is being made available to a group of my patients. Frankly, I am taking this as an opportunity to help the children and the Center,  plus I will learn a bunch. For families who really want to try it, schedules can be adopted to include a month-at-a-time daily intervention cut into the normal schedule. The neuro-typical kids can do their homework at the Center or even receive extra attention from the waiting, now-available parent.

Barely resourced families. We work on the gut and energy production, plus the conventional therapies that have been proven to work, and lots of my patients have entered into “residual state” of Autism Spectrum Disorder. It appears that there is no “optimal time” to start HBOT, and plenty of recoveries have taken place in the absence of this treatment.

When in doubt about a complicated decision which involves expertise beyond MY training, I tend to go with an expert in the field, who has proven results AND  patients willing to share their journey. You do what every parent does for any of their children – learn as much as YOU can (about any medical condition) and then work with an experienced physician who you trust to do the best for the child. Medically speaking, the jury is “out” so far about this alternative treatment which attempts to address the ASD epidemic, so parents (as usual) will have to go with their gut and watch closely for symptomatic improvement as it relates to this intervention.

This concludes my multi-part series about this complicated medical intervention. For now.

Hyperbaric Oxygen Therapy for Autism Spectrum Disorder
Part I,
Part II,
Part III

Addendm:
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm364687.htm
http://www.ncbi.nlm.nih.gov/pubmed/21818676
http://www.ncbi.nlm.nih.gov/pubmed/22987458

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