Welcome, and thank you for visiting this website. I hope the information we have put together here regarding mental health and the ketogenic diet is helpful. This open letter is intended to explain who we are and why we have committed our family’s time and resources to this Foundation. It is our sincere hope to inspire researchers to continue investigating the metabolic/mental health connections, to inspire qualified clinicians to learn more about the interventions discussed here, and to inspire those who suffer mental illness to seek out qualified clinicians for help.
Our family’s experience with mental health seemed so shocking to us at first, until we realized our story is not all that unusual after all. We are a married couple with two careers and two independent, active, engaged and healthy teenaged sons. Both of our boys were reasonably successful in school, extracurricular sports, and community activities. We are involved parents, volunteering at the boys’ school and in our community and engaging with them at every opportunity. Like most parents, we gladly poured most of our resources into our children’s education and overall well-being. That was our life in a nutshell. We had no concerns about mental health struggles and the difficulties with current standard psychiatric treatments… until one day we did.
In the fall of 2017, our world turned on its head when our youngest son Adam experienced an acute onset manic episode at the age of 15. It was a bomb we did not expect. He was just entering high school. An honor roll student and athlete on his own accord, Adam was an easy-going kid who was well-liked by his peers, teachers, and coaches. No one could have predicted what was about to unfold.
Although Adam now describes an earlier period of latent depression that we did not recognize because he was still so high functioning, Adam’s first noticeable symptoms marking an abrupt change were insomnia and loss of appetite. As the quarterback of his freshman high school football team, Adam’s coaches who had known him for years through a middle school sports program also expressed a concern for an abrupt change in his cognition. Normally quick to learn and notoriously easy to coach, Adam was having difficulty remembering football plays and did not seem like himself. One morning during these early days of trouble we found him up in our family room at 2:30 a.m., with bright lights, unable to sleep. “My mind won’t stop racing,” he explained. Later, we understood the significance of his description. Racing thoughts is a hallmark of mania but we did not know that then. Things deteriorated quickly from there. Within two weeks of these changes, Adam was hospitalized for the first of what would eventually be many times in the ensuing two years for mania and psychosis.
We were not prepared for the difficulties that awaited us. After ruling out concussion and other traumatic brain injury or medical cause, and following gold standard psychiatry care and advice, antipsychotic and mood stabilizer medications were initiated on recommendation of the hospital psychiatrists. After discharge, Adam was seen by three caring and highly qualified psychiatrists in San Diego who confirmed the hospital recommendation to initiate medications, each with slightly different opinions on dosing and specific medications. We went with the best recommendation we had at the time. At first we were told, “He should be back to himself within 30-45 days.”
It did not work out that way. As the months ticked by, all treatment providers including psychiatrists and psychologists specializing in mood disorders and psychosis confirmed that Adam was experiencing continued and worsening psychiatric symptoms, even though medication doses were carefully monitored and slowly increased in hopes of relief. We waited. We carefully titrated to different medications. However, none of medications and talk therapy – the standard treatment for mental illness — were helping. Arguably, with crippling side effects and sedation, medications were complicating matters. But such was the standard of care.
We even went above and beyond the gold standard treatment. We tried everything which seemed reasonable given the severity of Adam’s illness. In addition to receiving psychiatric care, Adam was seen by his pediatrician for a full differential diagnosis process and also underwent a complete nutritional and functional medicine evaluation. We got second, third, and fourth opinions. We took him to an endocrinologist to have his thyroid evaluated, to no avail. Adam’s pediatrician confirmed what the hospital concluded: no ”medical” cause could be identified to explain his symptoms. We did genetic testing to understand Adam’s predispositions, and found some information about gluten sensitivity, and certain genetic snips making him more vulnerable to nutritional deficiencies. The functional medicine work-up also revealed some nutritional gaps and to address those things many supplements were added to his medication regimen. Based on all of this testing, we implemented some early dietary interventions (removal of gluten, addition of a litany of supplements and probiotics for gut health, etc) and prayed hard that the psychiatric medications and some of these other things would start to help him. Even though some of his nutritional and other biomarkers improved, Adam’s psychiatric symptoms did not budge. Anne, a practicing attorney for more than twenty years at the time, refocused all her energy, research capabilities, and resources into finding the best, most “evidence-based” potential treatments and specialists. We had access to the best of health care, but none of it seemed to make any difference.
This process was a parental rollercoaster. Along the research and treatment continuum, we would let some hope in with each new recommendation for a new medication, supplement, or other treatment, only to be replaced with crushing disappointment as our sweet son continued to suffer unspeakable mental symptoms. Words cannot describe how it was to watch him suffer, and the feeling of helplessness we as parents felt. Nothing we could find, nothing we could do, seemed to help him. Despite all medications and other interventions, he continued to endorse delusional thought process and described intrusive thoughts completely interfering with his ability to function in school and sports. It is really hard to explain to someone who has not gone through this. There are some who will read this blog who understand all too well.
Many of his friends, once so supportive but all young and likely just as confused by what was happening, slowly but surely distanced themselves from Adam. Social isolation is bad at any age but especially in teen years when peer support is so important. Feelings of rejection and loneliness compounded the devastation caused by Adam’s illness. As a parent, it was frustrating to know how much a child with other easier to understand illnesses benefits in the recovery process when they feel supported, and we watched while that peer support dwindled for our son. Faced with a diagnosis of a disabling treatment resistant thought disorder, we were terrified for our son and his future.
Although it did not feel like it at first, I now realize that we are far from alone. As it turns out, Adam’s difficulties with the current standard treatments for psychotic disorders is not unusual. A recent review of more than 6,500 patients with psychosis being treated with standard medications and demonstrated that only 4% of patients fully recover on standard treatments, considering the following three metrics: (1) symptom relief, (2) functionality in either work or school, and (3) quality of life and relationships. Far from unique, Adam is in the clear majority of people with psychosis which does not respond well to current standard treatments. Now I understand so much more about the difficulties families face, and how that ties into the homelessness problem where untreated mental illness is rampant. This is a beast of an illness.
Not wanting Adam to fall into that 96% of patients who do not recover, still grappling to understand how all of this could happen to our high functioning son, we continued to search for different ideas hoping to find more effective and potentially safer treatments. The medication side effect profile for the mood stabilizer and antipsychotic medications is sobering, especially for parents who previously only worried about antibiotic overuse.
Nutritional psychiatry is a popular subject in mental health circles today, and we researched many aspects of that subject with cautious interest not wanting to veer too far from the standard of care. But our research led us to articles being published by several credible groups and physicians world-wide on the ketogenic diet for neurology beyond epilepsy, for diabetes, for cardiovascular illness… and for psychotic disorders. Among them was a case report published by two physicians from Duke University Medical Center of a woman who had experienced a lifetime of psychosis, trying countless ineffective or marginally effective medications, and who made a full recovery from schizophrenia on the ketogenic diet prescribed initially for weight loss. And then we found even more evidence in support of the ketogenic diet for mental illness. We knew we needed a qualified psychiatrist and physician experienced with both Adam’s underlying illness and the ketogenic diet to see if it could help Adam in the same way.
There are only a few such qualified and knowledgeable physicians. Christopher M. Palmer, MD, is a Harvard Medical School psychiatrist and assistant professor with a clinical practice who has devoted his career to the treatment of those with treatment resistant mental illness. At the time of our crisis, we found him through an article detailing two promising additional case reports published in a reputable medical journal about resolution of psychosis on the ketogenic diet. In the article, Dr. Palmer described patients who had suffered symptoms similar to Adam’s which were equally resistant to medications. Like others before them, these patients experienced significant symptom relief when following the same version of the ketogenic diet more commonly used as an anticonvulsant treatment. One patient is described as experiencing full remission of psychotic symptoms and who is now off all antipsychotic and mood stabilizing medications, and the other experienced significant improvement of symptoms while in ketosis and with a careful, slow reduction in medications. On our research page, we list several other case reports and early promising trial results of the ketogenic diet for psychosis. Given the level of Adam’s suffering on medications and therapy, we had to try it.
Two years into our ketogenic journey, our family has learned a lot. I will blog here about our experiences in shorter entries in hopes that our experiences can help others. Adam will blog about his experiences as a teen going through all this. We are still on our road back to recovery with a robust treatment plan consisting of the medical ketogenic diet, careful medication management, exercise, meditation and mindfulness, individual and group therapy, education and as much social engagement as we can manage. It is hard work. There is no one single silver bullet. It is a years-long treatment commitment, and the ketogenic diet and these complementary treatment modalities do not provide an overnight fix. However, together with all of the other interventions, the ketogenic diet is a crucial part of Adam’s wellness and stability. I just wish it were easier for a 17 year old to follow the diet, in what can only be described as a potato chip culture!
Because of the importance of this issue we are committed to sharing what we have learned about psychiatry and the role that the ketogenic diet along with exercise, careful medication management, and other life changing interventions can play in recovering from the type of illness many previously believed to be hopeless for so many. So-called “treatment refractory” psychosis is NOT hopeless and we want others to know that. And our mission with this website is not to criticize the current standard of care or question medications and other treatment modalities which clearly can help some people. But for those who do not get better on medications and current standard treatment alone, and Adam is clearly not alone in that category, metabolic interventions like the ketogenic diet may provide hope. And the fact that the ketogenic diet does help with these psychiatric symptoms will hopefully open up an entirely new area of research, potentially leading to a better understanding of the cause of mental illness and more effective treatments.
We have a lot of hope for Adam’s future and his ability to recover because of the ketogenic diet and other strategies designed to improve his metabolic and mental health. When in ketosis and following his full treatment plan, despite the ups and downs that come his illness, Adam slowly but surely stabilizes and improves in ways he never did before on medications and talk therapy alone. There are many unknowns right now, which is par for the course with mental illness in general. How long will he have to follow the ketogenic diet? Will he always have to be this strict with what he eats? Can other complementary strategies help even further? We do not know yet, and we continue to work on it as our journey to save our son continues.
Although we do not yet know all the answers, we do know the metabolic interventions are helping him now in ways psychiatric medications alone did not. We also see on a daily basis the importance of stress management and social engagement. There is even research to support this basic truth. Friends can help in ways which is both intuitive, and evidence-based. I will blog about these concepts too, as I think it is important for people to understand how they can help by just being a good friend.
We hope that through The MH Paradox Foundation others can be equally inspired to seek out qualified clinicians who can help develop a similar treatment plan. The challenges we experienced in finding qualified clinicians to help implement this robust treatment plan will hopefully change as mental health professionals start to understand the importance of these interventions. We need more qualified clinicians willing to take this on.
And for those wondering or tempted to try this without qualified medical and psychiatric oversight… PLEASE DON’T. This is not a do-it-yourself intervention, even though it is called a diet and might sound easy enough. I will share some recipes and what I call “medical keto hacking” of recipes in order to make them MEDICAL keto friendly just so people understand how easy this at least from the standpoint of making delicious, nutrient-dense ketogenic foods in 3:1 or 4:1 macros. But in order to use this as an intervention for a serious psychiatric illness (or any illness for that matter), you will need qualified medical and psychiatric supervision.
Hopefully, by being open about our struggles, our travels through this most miserable area of medicine (no offense to psychiatrists but I think you will all understand), we can make this easier for others. We also hope to inspire “keto curious” clinicians to find out more about this treatment modality and its potential to help their patients. And while we are at it, we will try to have some fun together as we raise funds to support research into the details of these critically important metabolic interventions in an effort to move the field forward. Our first fundraiser will be on November 13, 2020 in San Diego, to support a pilot study of the ketogenic diet for psychosis to be conducted in affiliation with Harvard Medical School and Harvard’s psychiatric hospital, McLean Hospital, in Massachusetts.
There are too many people for us to thank for their help. Some key people are represented now on our Executive Board, our Advisory Board of Directors and our Fundraising Committee. Without this community, we could not make the difference we hope to make through this Foundation.
With all our love for Adam, compassion for all those who suffer like Adam, and hope for all,
Michael and Anne Rauch