COCKTAIL TREATMENTS: A NEW HOPE AND CHALLENGE

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AGE OF AUTISM: COCKTAIL TREATMENTS: A NEW HOPE AND CHALLENGE

01/15/2008

COCKTAIL TREATMENTS: A NEW HOPE AND CHALLENGE

By Pramila Srinivasan

Every morning, I wake up to my overflowing cabinet. This morning it is

GABA, 5HTP to keep him calm, fish oil, Phosphotidylserine, an

antifungal rotation, Kyolic, a prescription antiviral, Acyclovir, and a

puff of Oxytocin to help his anxiety. He has a couple of muffins made

of amaranth, his grain of the day, and drinks cultured vegetable juice

fermented with the probiotic of the daily rotation. Off he goes to

school.

Three times every day, his meals, his supplements, his medications, are

carefully tailored to careful observations of his functioning and

well-being. This is my one child, who suffers from gastrointestinal

disease, toxic overload, adrenal stress, immune dysfunction, and

neurological dysfunction. Some people call it autism.

A decade ago, I never researched the medical literature, I never

questioned the physician, and I never thought that there was any other

path that offered better hope for treatment. But then, I also used the

travel agent to reserve my airplane tickets, I used a tax accountant to

file taxes, and used the post office to communicate.

Life will never be the same again. My son reached his lowest point

some time around five years of age, and the Internet brought all the

information into my home along with other parents just like myself. All

of us had no answers from the mainstream medical establishment to

explain our kids' deterioration of mental and physical capacities. We

have a diagnosis label: autism spectrum disorder, that does not

describe anything about why our kids suffer immune dysfunction,

gastrointestinal disorder, toxicity, inflammation, adrenal issues, and

so on.

For those of us who believe that our kids have some form of

chronic, treatable condition, there are no biomarkers, no standard

protocols, no standard procedures, no established standard treatment

techniques. Perhaps there will never be a one-size-fits-all treatment

for autism. Just recently, there was an article in the Wall Street

Journal, " Lab Rats? " (by Geeta Anand, Dec 15, 2007),? a remarkable

story of some parents treating a child's cancer using a cocktail of

remedies (aka off-label use), with success. These individuals are our

heroes. They are breaking new ground. The article begins: " Each day,

Sam Hutchison swallows 44 pills, most of which weren't prescribed by

his physician. They were chosen by Sam's father, who devised the

treatment cocktail -- and tests many of the medicines on himself -- in

a desperate effort to save his seven-year-old son. "

Often, what validates breakthrough ideas is simultaneous discoveries of similar

notions from

independent sources. Here is a great parallel to the biomedical

community in autism -- whole community of parents, collaborating on

Internet groups to research medical findings,

consulting physicians of multiple specialties, trying treatments, and

sharing results. The case of cancer is important because it is a

condition where progress is more measurable and the physical symptoms

are better tracked. Autism is complex in this dimension as well.

Measuring progress involves a multidisciplinary approach that is prone

to subjectivity. It makes sense that cocktail treatments for managing

diseases that are easier to monitor will perhaps precede the

application to conditions that are harder to measure or track.

The promise of cocktail treatments for chronic illness is enormous. Cocktail

treatments have

the ability to address co-occurring conditions in a way that no single remedy

can. So many

processes in the human body are cyclical in nature and operate as interlocking

gears. Some

natural agents act in multiple ways and influence multiple processes.

There are anti-oxidants, detoxification agents, anti-inflammatory

agents that all play multiple roles. Drugs play multiple roles, and

cocktail approaches rely on the use of remedies to hopefully nudge the

body towards becoming capable of healing itself.

There are those who question the efficacy of these approaches, the

notion of recovery, the lack of double blind placebo controlled tests,

the danger of side-effects. These are all valid questions. There are

disagreements on the causation of autism: heavy metal toxicity,

over-vaccination, use of pesticides, overuse of antibiotics, in-utero

immuno-? or neurotoxicant exposures, and so on. For those of us on the

treatment path, each of our kids, we believe, has some subset of the

above exposures, and individual history and symptoms might help guide

treatment.

Yet the bulk of research funding is geared towards genetic research. Yes, there

is a genetic

predisposition to various conditions, but the earlier we stop obsessing over it,

the closer we

will get to actually learning how to treat our kids. If all of us

smoked cigarettes, only some of us would get sick from it. If gene

mutations are happening at such a rapid rate in an evolutionary sense,

there is probably, again, an environmental cause. At this point the

numbers are high enough that any in-utero determination of

susceptibility to autism is not going to help determine a course of

action. What would we do in practice? Give probiotics, fish oil and

delay vaccines to some of our kids? Abort fetuses? What would we do

with information such as: Your unborn fetus has a 50% chance of

developing medium severity autism, 40% chance of developing

anaphylactic allergies, 60% chance of developing ADHD, 2% chance of

brain tumor and so on?

Considering that several genes are possibly collectively

responsible for these conditions, it is likely that we will only get a

probabilistic estimate of different possibilities. In addition, they

would be inaccurate in not taking into account environmental and other

stressors that are often cofactors in these conditions.

Several chronic illnesses have a lot of elements in common: they are

multifactorial, the

causation is hard to determine, the severity lies on a spectrum, and different

individuals

respond differently to treatment. Perhaps there is commonality in

solving the treatment puzzle as well. Perhaps the treatment for many

chronic conditions would look very similar (challenging the multitude

of specializations in medical practitioners today).? We have changed

the way we share photos and videos and we have changed the telephones

we use to communicate. We are perhaps on the brink of changing the way

we treat disease.

Parents and patients are already changing course ahead of the medical

establishment.

We have gone a long way in pharmacological research and we do have

excellent products for managing acute illness and symptoms. However, we

face significant challenges in developing a treatment methodology based

on cocktail approaches. We have to look beyond double-blind placebo

controlled studies of single variables. We need more creative

approaches for learning how to manage disease using combinations and

schedules of existing remedies.? We need scientific methodologies to

formalize treatment arising from collaborative effort. We do not want

to continue to lose our children's future to bad experiments.

We need a new paradigm to address chronic disease management.

We need secure and well-designed databases for longitudinal tracking of

symptoms,

treatments, observations and inferences. In other words, we need tools for

patients to

manage treatment, and tools to effectively collaborate with multiple experts

and/or

professionals from diverse fields (from mainstream and alternative medicine,

apart from

other health care professionals, speech therapists, and so on).

We need methods to intelligently subgroup and summarize the findings to suggest

possible courses of actions for a patient based on his current state. We need to

be able

to match a patient with a similar responder anywhere in the world.

We need tools to mine the medical research to find articles relevant to a

patient and/or

his consulting physicians, based on his medical data, observations, and

priorities. We need methods to mine the body of patient data to compute

inferences about efficacy of treatment procedures as a function of

multiple domains, such as the patient's current medical status, his

emotional status, his past and present intervention regimen, genetics,

and so on.

We need methods to study and predict the progression of the

disease states. For example, can GI distress in an infant with autism

result in Crohn's disease? Does childhood emotional regulation

dysfunction evolve to a condition of mental regulation challenges in

adulthood, and so on.

We need resources to help patients and providers locate providers

of various therapies or interventions customized to their needs, and

optimize parameters that interest the patient: cost, location, risk,

and so on.

We need better methods to archive and share our collective knowledge, and help

each other with our experiences.??

We need state-of-the- art data sharing technologies to archive,

share and interpret medical imaging and signal data, and interface with

in-home and hand held devices.

We need models to integrate the body of knowledge in ancient and

alternative therapies to current science. We need databases that

combine our knowledge of nutritional, dietary, and drug oriented

approaches to interface with a treatment plan in a holistic model.

We need rules and methodologies to determine course of action in

the new paradigm where double blind placebo controlled studies do not

exist to answer the needs of a specific individual, taking into account

the collective data in the database. We need scientific methods to

design protocols for the patient for every intervention: the

therapeutic dosage schedule, the determination criteria for efficacy,

the stopping criteria, the maintenance dosage, and so on.

We need physicians to utilize their domain expertise and knowledge

of drug use to help patients manage their recovery using cocktail and

holistic approaches. Current medical approaches have come a long way in

the treatment of specific symptoms, instrumentation and surgical

treatments. We are at the threshold of transforming how we use our

medical knowledge to effectively manage disease. Autism, and other

chronic disease conditions need a novel approach to treatment. The use

of the Internet has brought the capacity to do researc, to everyone who

owns a computer. We have changed the way we make phone calls, the way

we make our airplane reservations, and we will change the way we manage

illness. Our children and our future depend on it.

--

Pramila Srinivasan, PhD, is an engineer who lives in Palo Alto, Calif.,

with her husband and 8-year-old with autism. She spends her time

between her child's treatments and developing technology to help

patients and caregivers manage chronic illness.

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