One of the worst nightmares for any parent is to look into her child's eyes and see the light that was once shining so brightly be consumed by a chronic health condition.
Unfortunately, as more children are diagnosed with chronic diseases — 1 in every 2 kids according to some statistical models — that sad reality is becoming all too common in the lives of many families.
But in every darkness, there can be a light, and with every chronic condition there are people who find their way back to health.
One organization is working toward giving parents a glimpse of hope and to prove that children with a wide range of chronic diseases can get better through lifestyle choices, changes in environment, and personalized therapeutic approaches.
The Documenting Hope Project (DHP) is a documentary that chronicles an 18-month journey of 14 children diagnosed with at least one of seven chronic conditions: autism, ADHD/ADD, asthma, juvenile rheumatoid arthritis, mood disorders, obesity/type II diabetes and atopic disease/eczema.
Spearheaded by Beth Lambert, founder of Epidemic Answers, a non-profit, parent-run group dedicated to educating the public about the epidemic of childhood chronic illness, Documenting Hope will follow the children from diagnosis to recovery, tracking all of their treatments and interventions and their responses to them.
DHP plans to create a social and educational movement to demonstrate how a data-driven assessment of lifestyle and environmental factors combined with a tailored therapy can improve health outcomes and in some cases, totally reverse these diseases.
The project’s aim is to create a shift in the way we view childhood chronic conditions, and to ignite lasting change in our approach to healthy living and healing disease.
Recovery is Possible
One of the fundamental premises behind Documenting Hope is that much of the chronic illness affecting the nation’s children is not due to genetics or other intractable factors, but to poor diet, food allergens, exposure to toxins in the environment, oxidative stress, and psychosocial stressors---all of which are completely modifiable.
The project’s main message is that many childhood disorders are totally reversible despite the gloomy prognoses usually offered by conventional medical experts.
Documenting Hope “builds on the medical literature demonstrating the human body has the inherent capacity to heal; focusing on bioindividuality, helping to solve the problem at the level it was created, identifying the root cause and helping the patient get back to balance,” says Josie Nelson, the project’s program director.
“It is important to understand that Documenting Hope is not a study, as a study only measures one input with one output and has limited insight in understanding the root cause of disease system, but is a case registry. In a registry, one can analyze multiple and simultaneous factors focusing on prevention and reversal of disease.”
The recovery program will focus on assessing personal clinical needs using comprehensive assessments and “eight productive biomedical markers,” says Dr. Russell Jaffe, who is on the medical advisory board of DHP and is CEO and chairman of PERQUE Integrative Health.
All the children in the project will undergo nutritional, metabolic, gastrointestinal, genomic, environmental, developmental, structural, sensory, and energetic assessments, using methods that are non-invasive or minimally-invasive. The data from these assessments will guide the kids’ doctors toward creating personalized healing programs for each child.
Additional research tools will include brain imaging, gut microbiome profiling and gene expression studies, all of which will help provide a glimpse of how biological systems interact in illness and in health.
A Real World View
The families participating in Documenting Hope will give daily input to the project’s organizers based on observation of their children, including their eating and bowel movement patterns, observed progression or remission of symptoms and other lifestyle-related information. The children will continue to live in a community-based setting, where real life choices are measured and collected. This is not the tightly controlled context of a clinical study, but rather the observation of real children, in real families, living their real world lives.
The project aims to concentrate “upstream at the causes, instead of downstream to the symptoms. No protocol — just a personalized, integrative and inclusive variety of therapies that are properly sequenced and implemented in a way that is both reflexive and responsive, taking all the variables into account,” Nelson states.
To that end, each child will have a multidisciplinary team of health professionals, which will include a clinical care provider, day-to-day health coach, and medical mentors, all provided pro bono through the project’s collaborative master mentoring program.
The children and their families will benefit from oversight from experts, personalized therapeutic supports, and home and environment modifications. By leveraging the perspectives of multiple disciplines, the project organizers hope to help families find comprehensive and unified assessments of their childrens’ problems.
Dr. Jaffe stressed the importance of “having a master mentor, who is able to apply the information quickly and intensely and comprehensively.”
The recovery project is, “all about what you eat and drink, think and do,” Dr. Jaffe stresses. “The diet must contribute minerals, antioxidants, essential nutrients. Nature, nurture and wholeness.”
While the project is definitely “anecdotal” in the sense that there is no control group, no single isolated intervention, and no pre-defined outcomes, the organizers will be gathering large amounts of data. They will be drawing from parent questionnaires, health risk assessments, laboratory and non-laboratory assessments as well as the childrens’ self assessments.
Electronic health records will enable patients and clinicians to enter data collaboratively. Such intensive data collection allows the large volume of information to be tracked and analyzed in real time, taking into account all the variables that make up a real-life picture of human health.
In Dr. Jaffe’s eyes, DHP’s approach “will be the model of good science.”
DHP is part of a plan to create a world where health care becomes “well care,” and families can get the support they need to achieve the greatest health potential for their children.
Nelson envisions DHP expanding into an action-oriented social movement to help spread the message of heath and wellness.
Once the information from the Documenting Hope cohort is compiled, the key is to disseminate it to clinics and to the public, with the goal of aiding in the transition from our current “sick-care system” to a well-care system, focusing on “physiology before pharmacology. The project’s organizers want to see wellness-focused medicine become standard and routine, rather than a marginalized luxury or an afterthought once all the pharma options have been exhausted.
The project’s leaders plan on spreading the message of healing through broad media coverage, as well as a feature-length documentary film, followed by television appearances and Web-based education and training for clinicians and other online resources.
DHP plans to send its message to all levels within the healthcare establishment and outside of it. Organizers plan to publish manuals based on what they learn as far as effective interventions for helping kids with the various illnesses being studied.
Our purpose is to integrate “the science from the recovery program with grassroots media-enabled programs to help educate and support those looking to make lifestyle changes,” Nelson states.
More Tools in Our Tool Belt
Though one can dispute the specific numbers, there’s no doubt that more children are being diagnosed with chronic disease than ever before. Autism is diagnosed in 1 in every 42 boys, according to the Centers for Disease Control and Prevention. The problem will not be solved simply by putting more children on more meds.
DHP and other organizations around the country, such as the Center for Autism and Related Disorders (CARD), are spreading the message that reversal of these disturbing trends must include a serious focus on diet and lifestyle.
With treatment centers around the globe, CARD also conducts research, regularly setting new standards for early identification, screening and intervention to help young children with autism.
A cross-disciplinary executive summary recently published in the journal, Pediatrics, stresses that early identification of autism spectrum disorder is vital to ensure that children can access specialized evidence-based interventions that can help optimize long-term outcomes.
With autism on the rise, it is important to educate patients about signs and symptoms, like reduced levels of social attention and social communication as well as increased repetitive behavior with objects — all early markers of ASD between 12 and 24 months of age. Additional potential markers include abnormal body movements and temperament dysregulation. (Zwaigenbaum L, et al. Pediatrics 2015;136:S10–S40)
As practitioners, we need to talk to our patients about how lifestyle choices they make—consciously or unconsciously—affect the short-term and long-term health of their children. “Focus on the microbiome, breastfeed until the child reaches for food at the table, avoid cesarean sections, children should come out when they are ready,” Dr. Jaffe says.
He concludes: “What you think is the product of the past thought. The past is behind us, the future hasn’t happened, but in this moment, you can choose a different future.” It’s a core principle driving the team that launched Documenting Hope, and it’s one they hope to spread far and wide.
Together, we can help families bring back the light in their childrens' eyes for a better future.