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
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.