Archive for January, 2011

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 speaking 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.

SPECT Scans and Autism Spectrum Disorder

Thursday, January 27th, 2011

If the holy grail of HBOT therapies is to promote new neural connections, then the gold standard of objective evidence could be this technology. Single photon emission computed tomography creates images of the brain which combine multiple 2-D views left by a special chemical (which is injected into a patient’s arm) – a radioisotope. Multiple pictures are taken from multiple angles and a computer reconstructs the image into the 3D views that you see. Images provide detail down to 1/2 inch – not as good a s some technologies but a lot less expensive (~$1,000 plus*).

So, when you combine the camera with the right type of tracer chemical -  to be taken up by brain tissue in relation to brain blood flow –  the radiologist can interpret brain blood flow. That would be, as noted in a previous post, the most tangible evidence that a patient has/could/would/may/should improve on continued HBOT therapy. In the best of all worlds, you would do a SPECT scan before starting HBOT, then after twenty sessions or so, you repeat the scan to see if there is improved blood flow to specific areas. Even in the absence of clinical improvement, that information may make a parent want to continue 40, 60, or more treatments. And conversely, if you see that there is no change in blood flow, it may help determine if treatments should continue. The parent may have seen improvements because of G-I improvement or sensory conditioning, but it may be less likely that the HBOT “did its thing” for the brain.

To choose such a protocol for a child would involve two times the anesthesia, more exposures to radiation (however small), more money, extra time to get the studies and lots of stress, I’m sure. However, it is a very interesting technology that may help a family better understand their child’s condition and reaction to the controversial and resource-intensive treatment of HBOT.

The question which is still unanswered is, “Does increased blood flow indicate or lead to or in some way promote (and in no way worsen) infantile autism?” There’s the rub. But, it’s the best information that we have for now concerning the usefulness of this expensive and time-consuming technology.Even done once, even without considering HBOT, the pictures could prove helpful.

*The costs will go up depending on the chemical that is injected, whether/type of anesthesia, interpretation by a trained radiologist and any other additions that they can think of.

One more post to go! (about this topic, for now)

Hyperbaric Oxygen Treatment Part IV

Sunday, January 23rd, 2011

According to all available scientific evidence, state-of-the-art treatment for Autism Spectrum Disorder  should include an appropriate medical workup, with treatment plans that include medical and  conventional behavioral therapies. As with all medical conditions, the patient (parent) tries to learn as much as they can about a subject, then speaks with various medical professionals (sometimes even second and third opinions), and then works with a trusted medical professional to “do the best for their kid” (we all want this, right?) .

Pediatricians view the child as a whole – that means that the family, their resources, and their situation are part of any proposed treatment plan.

And by resources, I don’t only mean financial abilities. One family might have 4 children with two parents and a housekeeper, while another is a single parent with an only child. And everything in between. Time, money, treatments and personnel can only be divided so many ways. So, the advice given by an involved professional will include such information.

I have several patients who have been offered “free” HBOT (various reasons) and my advice is to take the shot (I also have a bunch of other things that they need to do – but that’s another blog). Mixed results. One patient said that, after 20 conventional treatments, the most specific improvement in their young son was sleep (interestingly, this child cannot take melatonin). Adequate sleep leads to less morning fog leads to improvement in AM therapies – that’s good. One parent swears that his young son acquired remarkable improvements speech and language after HBOT. For this child, I haven’t formulated an opinion yet. Another parent of a moderately affected daughter says that G-I improvement and calming took place, and so she really seeks continued treatment. This unfortunate, beautiful child happens to be a  ”runner” and a “stripper”, so I can understand her treatment choice! Almost all of my experience with “mild HBOT” has come from patients who have tried it previously, usually not recalling much in the way of positive change. But, of course, if it were making their child better, they probably wouldn’t seek additional advice.

Positive testimonials about HBOT (both kinds) abound on the Internet. Negative information – even QuackWatch remains neutral so far.

Next up: SPECT scans

Hyperbaric Oxygen Treatment Part III

Saturday, January 22nd, 2011

How it works: Until more is known about the cause(s) of autism, the holy grail of treatment is to create new neural connections to overcome the apparent lack of typically functioning network linkages in both sensory and motor pathways. Various areas of the brain have been identified as “suspect” for inflammation, size/volume differences (including increases due to swelling and decreases due to poor growth), blood flow and toxic deposition. One way or another, oxygen under pressure does increase the amount of oxygen which is dissolved into your blood (not only the O2 that is always attached to a hemoglobin molecule in a person’s red blood cells). This is the extra oxygen that is supposed to nourish sick areas of the brain to improve blood flow, oxygenation of tissue and theoretically to promote new growth.

How else it works: There are additional improvements that patients experience when exposed to HBOT. First, the gut can become healthier, especially in children who (1) have not had intensive G-I evaluations and treatment, (2) there has been resistance to the usual probiotic and anti-fungal treatments, or  (3) the patient suffers from frequent recurrence of fungal infestations or other intestinal problems. Yeast and nasty bacteria generally do not like living in the atmosphere created by the hyperbaric environment. Additionally, there is often a lack of sensory integration and other behaviors related to seeking proprioceptive input that affect most autistic patients. Temple Grandin discovered that a simple ‘squeeze machine’ made her feel less anxiety. Behavior analysts (and parents and professionals) have known for years that weighted vests, small spaces and deep hugs help calm affected children. Pressure such as the kind that is felt in a hyperbaric chamber must feel very satisfying to many patients.

Most recent clinical research (Entries will be updated from time to time and when needed):

Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial

Improvement was seen… in the treatment group compared to controls in overall functioning, receptive language, social interaction, and eye contact; 30% in the treatment group were rated as “very much improved” or “much improved” compared to 8% of controls; 80% in the treatment group improved compared to 38% of controls. …significant improvements were observed in the treatment group in total score, irritability, stereotypy, hyperactivity, and speech, but not in the control group. In the treatment group compared to the control group… a greater number of children improved in irritability… sensory/cognitive awareness significantly improved in the treatment group compared to the control group… children over age 5 and children with lower initial autism severity had the most robust improvements. Hyperbaric treatment was safe and well-tolerated.

Randomized trial of hyperbaric oxygen therapy for children with autism

No differences were detected between HBOT and placebo groups across any of the outcome measures. The present study demonstrates that HBOT delivered at 24% oxygen at 1.3 atmospheric pressure does not result in a clinically significant improvement of the symptoms of Autistic Disorder.

Two research protocols utilizing mild HBOT. There were various differences in study design and implementation, to be sure, but one with positive results in multiple areas, and the other with improvement – in both control and placebo groups – that is to say, no difference from the HBOT.

“If we knew what we were doing, it wouldn’t be called research, would it?” (A.Einstein)

Up next: more medical stuff

Hyperbaric Oxygen Treatment Part II

Tuesday, January 18th, 2011

HBOT chambers that are used to improve the symptoms of infantile autism come in two flavors -

SOFT

and HARD:

The soft chamber is made of plastic, and the hard chamber is made of glass and steel.

The advantages of the soft chamber – also known as “mild HBOT” are:

Portable – can be kept in a home more easily

Less cost if long term use – can be purchased for home use

More flexible schedules – since it can be used in the home

The disadvantages (soft chamber):

Achieves lower pressures – 1.3 ATM (atmospheres or ~11 feet below sea level)

Oxygen nearly the same as room air (we breathe 21% oxygen, additional oxygen is usually supplied to get ~ 24%)

Appears more uncomfortable – only a small “lookout hole” and will have an odor (of plastic) for a quite a while

The advantages of the hard unit:

This was the original type of chamber used for the purpose of helping autistic patients

Can attain much higher pressures – even higher than 1.75 ATM (~24 feet below sea level)

Can attain higher oxygen levels (100%)

Doesn’t have odor or residual phthalates

?More likely to get covered by insurance

The disadvantages of the hard unit:

Really impractical for home use

Patient needs to go to HBOT center

Continued treatments will increase costs

So, hard vs. soft?: If a parent wishes to leave no stone unturned in their journey to recover their child, they may choose to try hyperbaric treatments. All things being equal (and they rarely are), I would go with the hard chamber first.

If you choose the soft chamber, and it doesn’t help, you will STILL want to try the hard chamber. If, on the other hand, you try the hard chamber first and it DOESN’T work, you can pretty much figure that the soft one won’t add anything to your search. If the hard chamber DOES work, well, you could still give a trial of the soft chamber to see if you get similar results. Or, like many patients, you could continue the hard chamber if you are seeing results.

Next in Part III, the science of hyperbaric treatments.

Hyperbaric Oxygen Therapy for Autism Spectrum Disorder Part I

Thursday, January 13th, 2011

As a pediatrician who practices developmental medicine with extra training in “DAN” protocols, I am often asked about my thoughts about Hyperbaric Oxygen Therapy – a treatment that involves putting the patient into a chamber that has increased oxygen and barometric pressure. This treatment is among the highest listed of the complementary and alternative therapies that parents believe have made a difference for their autistic child.

The subject is complicated so any parent will want to take some time to understand what it does and how they should go about getting the treatment for their child. This blog is starting as a 6 part series – and it may grow larger. Ladies and gents, it should take some time to present and explain all of the pertinent information.

First, the therapy is safe. Only some patients with difficult chronic ear infections could potentially have a problem with equalization, but a good center will be able to assess and handle such a problem. There is no risk of increased seizure activity as has been a concern on some circles. There are thousands and thousands of logged hours that have proven this point. Again, a well-equipped and well-staffed HBOT center will assess a child in such a manner that the parent should feel confident that their child is being observed in a safe environment.

Second, the parent who is concerned that their child “will never get in that thing” hasn’t seen how the children take to the chamber. They really do seem to be OK in there – they look forward to the sessions. Ya-gotta-c-it-2-believe-it.

Third, there are many reports of improvement in speech and language, disruptive behaviors, gastro-intestinal symptoms and general well-being when an adequate number of sessions are performed (depending on the center and the patient’s condition(s) – from 20 to 60 sessions , 1 to 1-1/2 hours per treatment). Therapy is usually done 5 days per week for one month at a time.

In Part II, I will discuss the two types of chambers. Stay tuned.

I Lost It Today

Wednesday, January 12th, 2011

In general, I’m a pretty hyper- and passionate doctor. I took care of premature babies for 25 years and, when faced with a medical problem in one of my tiny patients, I needed to act quickly and decisively. Those precious few moments could decide how a child would turn out for the rest of their lives; whether they might have mental retardation, cerebral palsy, chronic lung disease or any number of possible maladies. That was then.

So, today I was examining a four year old patient who has not been improving as much as I (or the parents) would have hoped. Speech and language continues to be the biggest challenge, though “stims” and lack of focus are certainly among the family’s chief complaints. The mom has tried many of the DAN therapies that I have suggested, and continues to do a great job getting the most out of her young son.

When faced with the mother’s wishes to “remain natural” in my further care, I sort of, well, wasn’t as kind or compassionate as I should have remained. My background as a “fixer” made me want to snatch the child out of her hands and do as I pleased with the further medical care. My explanations included trying to produce analogies so the patient could better understand my point-of-view, but instead they merely worsened the situation as the patient became upset that I was “talking down” to her.

The point that I want to bring to my patients and readers is this: Autism is a medical condition, and sometimes we need to use actual medicines to help. In some cases, the only way to tell if a medication will work is to try it out. This is not uncommon in ANY medical condition. Asthma is sometimes helped by inhalants, and other times by oral meds. When treating diarrhea, doctors will go from changes in foods, to supplements, to oral medications to stop the symptoms. Your doctor sometimes has to be trusted that he/she knows (and has discussed the risks of medication), and so the patients’ “investigation” into the safety of the intervention will be no more helpful, and will waste time as symptoms continue.

Anyway, I neither did a good job at making my points nor encouraging the patient that their child would be safe. Even at 60 years old, it’s still a “practice” and I can still improve. Thanks to all of my wonderful patients who listen to me, and even those who don’t.

I Stopped the Diet ‘Cause I Didn’t See Any Difference

Tuesday, January 11th, 2011

Here’s the scene: A really difficult patient comes to my office with many, many problems. “Stims” are way out of control. Language is at a bare minimum, if at all. Most importantly, the child looks sick!

So, I go about the usual sequence of intensive history taking, extensive physical examination, complete record review and appropriate laboratory testing. Through that process, which may take a month or more, I am able to ascertain what medical ailments the child is suffering and I speak with the family about the options for treatment. Each prescription is gone over in great detail with expected results from each approach to care and cure. This supplement may cause yeast die-off, this diet may lead to emotional disruption. Step-by-step the parents follow a well-thought-out course of action and, many times, are quite pleased as expected outcomes are met. The child makes real progress that hasn’t been seen in quite a long time and medications or supplements are increased when indicated and as tolerated.

Almost inevitably, however, the parents become less-than-satisfied that the progress is not as fast as the parent had wanted or expected. “He’s still not engaging in conversation”, “he doesn’t seem to make any friends” or “those stims are driving us crazy!” “Do you remember when all you wanted was to hear him speak?” I ask.  ”Yes, but there’s got to be more” is the disappointed answer. This is when I usually give my “sailing” analogy. When you keep pulling the wavering sail ever more tightly, the boat may go a bit faster, but you may also catch a new breeze and everyone gets disturbed by having to cross over to the other side of the boat. You may have gained a bit of speed, but was it worth the trouble? “Stay the course,” I plead, but sometimes to little avail.

The parent then seeks other methods of improvement. A supplement that I haven’t thought of (right). A new (or actually old) therapy that promises magic results. Another opinion from a frustrated web yenta. So, the parent follows that line of thinking for a while, and, many times, abandons the course of treatment that got actual, real, palpable results. Weeks and months go by, sometimes with some perceived initial improvement and slowly – slowly – the child gets sicker and sicker and returns to the state where I first met the patient. “Well,” the parent explains, “the diet wasn’t working any more so we decided to try ultrasound enhanced pinball with neuro-interventional patterning. The first $10,000 treatment seemed to help a lot, but the third round didn’t seem to do anything!”

Here’s the thing – people don’t write testimonials about slow, steady improvement. And, people don’t generally write about things that didn’t work, especially when they feel that they wasted a great deal of money. Also, I have noticed that the most vocal web mavins are the ones whose children have NOT recovered. On the other hand, as a doctor, I am able to identify real sources of inflammation and treat many of the issues that are leading to poor health. Combining biomedical treatments with the proven traditional therapies such as Behavioral, Speech & Language, Occupational and Physical Therapies DOES RESULT IN IMPROVEMENT. I have seen it from other practitioners and I have seen it with my own eyes.

So I thought the I would offer this bit of advice that I found on the Internet: “Many an opportunity is lost because a man is out looking for four-leaf clovers.  ~Author Unknown”

Me Thinks Thou Doth Protest Too Much

Friday, January 7th, 2011

Big news this week. Breaking news on CNN and most of the networks. Brian Deer, a British jounalist, has come out with a report that the previous work of Dr. Andrew Wakefield was not only incorrect, it was a fabricated lie!

Here is the concluding paragraph of Dr. Wakefield’s controversial paper: ”We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.” Wakefield, et. al.Copyright. © The Lancet Ltd, 1998. Volume 351(9103), 28 February 1998, pp 637-641

His mention of autism in that paper is only in reference to the pathology of the gut and the possible association with childhood MMR vaccination.

The Editors of The Lancet retracted the article in February of 2010: ”Following the judgment of the UK General Medical Council’s Fitness to Practise Panel on Jan 28, 2010, it has become clear that several elements of the 1998 paper by Wakefield et al. are incorrect, contrary to the findings of an earlier investigation.”

OK, the editors claimed that there were problems with the particulars of the data and so they felt that the paper should be retracted. Ten of the twelve authors also retracted their statements (although faced with loss of my medical license, I would probably have agreed to anything that the government offered). Dr. Wakefield himself has rebuttals to these assertions. But, let’s say for now that EVERYTHING that Dr. Wakefield’s detractors say is CORRECT. Why does Mr. Deer continue to beat this dead horse? Why not provide a little light, instead of so much heat? Why not follow, for example, the lack of quality control by the Glaxo Company and their felony conviction for distributing adulterated drugs. Does anyone really think that these kinds of shenanigans are not continuing? Or, how about Pfizer’s treatment of David Franklin, who complained about his company’s “aggressive tactics” in marketing a potentially dangerous drug? In 2002, the US Department of Justice recovered $1.2 billion in civil damages under the false claim act, of which healthcare awards were the vast majority.

Dear Brian Deer, why have you spent SEVEN years in this endeavor? What do you plan to gain by adding six more articles to your already well-publicized “research”? The polarization is already in place; there are those who believe that vaccines have caused their child’s autism and those who refuse to believe that anything that the drug companies do could be so egregious.

And, by the way, we still don’t know why there is a 600% increase in infantile autism in this century. Maybe you could research that next.

Attention Deficit and Hyperactivity in Children

Friday, January 7th, 2011

One of the most common developmental disorders is Attention Deficit/Hyperactivity Disorder (ADHD), which occurs with a frequency as high as 1/20 children in the US.  It impacts many aspects of behavior and performance, both at school and at home and, in the majority of patients, symptoms persist into adolescence and may even continue into adulthood. Patients tend to dislike tasks that require concentration or organizational skills and may avoid such specific situations.

More than 20 genetic studies provide evidence that ADHD is an inherited disorder. Most children with ADHD have a close relative who also has it.

The National Institute of Mental Health reports that about one-third of fathers who suffered from ADHD during childhood have children with it. Children with affected parents are three times more likely than other children to develop the disorder, and identical twins are both likely to be affected.

The characteristic features of ADHD—inattention, impulsivity, and motor hyperactivity—lead to impaired function in school, work, and social environments.  There is no diagnostic laboratory test for ADHD.  Furthermore, it is important to identify other conditions that may be responsible for symptoms or that coexist with ADHD and require treatment. Hearing and vision assessments should be included in the examination. In my practice, I also explore changes in bowel function and flora, and any allergies that may be causing disruptive behaviors. The most important diagnostic tool is an extensive clinical interview – not merely a routine visit to your general pediatrician.

Once your child has been diagnosed with ADHD, it is important to work with a health care team to develop an effective treatment plan. Medications include stimulants (including amphetamines), non-stimulants, antidepressants, antihypertensives, mood stabilizers and other CNS medications.  An interesting sign that can help determine whether stimulant medications will be effective is for a physician to assess whether the child gets better or worse with even a small dose of caffeine (or even nicotine patches have been advocated in some research). That way, it’s not just “hit or miss” when it comes to which of the myriad drugs to prescribe.

It is important to include behavioral therapy and social training to help minimize the use of medications, and hopefully maximize their effectiveness. The question of refined sugar leading to increase of disruptive behaviors has been debated for years. While scientific literature is generally inconclusive about this contributing factor, there are MANY moms who swear that their kids get “sugar shock” from certain foods. Personally, I am even more concerned about foods which contain a high amount of artificial coloring and flavoring. If there is a “#” (number) in front of the ingredient – it’s not food. Lots of preservatives in certain foods seem to exacerbate the problem in many of our chldren.

Overall, there can be a great deal of improvement in most of the children if the parents follow this suggested course of treatment: find an experienced physician, have a well-thought-out plan, be even more patient and follow the child closely.

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Brian D. Udell MD
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