When the Standard of Care Failed Her Son, Raffi, Miriam Kalamian had to Search for Her Own Answers

SMHP Board Member Continues Push to Make Therapeutic Carbohydrate Reduction an Accepted Option for Cancer Patients

Miriam Kalamian, EdM, MS, CNS is a nutrition consultant, educator, speaker and author specializing in the implementation of ketogenic therapies, and she’s a founding board member of the Society of Metabolic Health Practitioners.

Miriam’s focus on helping people use therapeutic carbohydrate reduction (TCR) to improve their health and quality of life grew out of an extremely difficult and painful personal experience involving her son Raffi, who was diagnosed with a brain tumor in December 2004.

Raffi was not quite five years old when doctors told Miriam and her husband Peter their son had cancer.

“We found out he had a brain tumor, the size of an orange,” Miriam recalled. “They told us it was inoperable, and that he’d need extensive chemotherapy.”

At that time, the only option offered, Miriam said, was 54 weekly chemotherapy treatments, which would take a heavy toll on Raffi.

“We went along with the standard of care, because there wasn’t really anything else offered. And he failed the treatment miserably. We just watched this chemo eat away at him, and to know there was nothing else out there that they could offer him was just devastating.”

Miriam searched for alternative solutions on the internet, but at the time, information about other treatments was sparse.

The next protocol doctors recommended involved 12 weeks of infusions of another chemo drug, which also failed to produce positive results.

“With no other options, we did the unthinkable,” Miriam recalled. “We started looking for someone who might operate on this tumor because it was pretty clear we were going to be losing him sooner rather than later.”

Raffi underwent a series of extremely risky surgeries, which bought them a little bit of time, but it didn’t fix the problem.

“So we were back, at square one, worse than square one,” Miriam recounted. “Now we had a tumor that had grown 25% beyond what they had resected.”

As a last resort, Raffi was enrolled in a clinical trial, which involved nine weeks of combination therapy involving drugs that are toxic to the kidneys. Even before the trial had reached the halfway point, Miriam realized this was another miserable failure.

Then one day Miriam was doing doing some online research on the drugs being used in the trial, when she stumbled on an article about research being done by Thomas N. Seyfried, PhD, involving the ketogenic diet in a mouse model of glioma (a type of tumor that occurs in the brain and spinal cord). In the article, Dr. Seyfried mentioned a paper on a case study of two children who were put on a ketogenic diet and their late stage tumors stabilized.

Miriam’s discovery proved to be life-changing. She reached out to Dr. Seyfried, who helped her locate resources relating to the ketogenic diet, and introduced her to people at the Charlie Foundation, a non-profit founded in 1994 to provide information about diet therapies for people with epilepsy, other neurological disorders, and select cancers.

Miriam learned that there was some evidence that the ketogenic diet may be beneficial for those suffering from brain tumors.

“It was a big leap, but we really didn’t have a lot of options,” Miriam said, “and we thought, well, what’s the worst that could happen doing a diet that they put kids on?”

It turned out that the ketogenic diet was the first form of treatment that produced significant positive results.

“We were just stunned that it had the effect it did. Within three months of Raffi starting the ketogenic diet, the tumor stopped growing and actually regressed, which was totally unexpected.”

Shocked and awed by the results, Miriam began rethinking everything she knew about nutrition.

“I had no background in nutrition,” she realized. “I thought I was eating a healthy diet. I thought I was giving my kid a healthy diet. And when you look at it, I was doing what the guidelines suggested.”

But Miriam was faced with yet another challenge.

“I was determined to find out more about the ketogenic diet, but there was nobody that seemed to be able to help me. I had one nutritionist from the Charlie Foundation and a couple of moms on a moderated group there for kids with epilepsy, but I needed more.”

Miriam enrolled in a master’s degree program in human nutrition at Eastern Michigan University and began learning about nutrition in an effort to help her son.

“It was a real solid program for dietitians, and nutritionists,” Miriam said, “but I had to buck the system much of the way. I had to answer these questions that suggested glucose is the only fuel for the brain and central nervous system, when I knew that this little guy at my side was thriving on ketones, not on glucose. But I still had to answer this way because that’s where science was, and it still hasn’t budged much from that point”

The diet altered the course of Raffi’s cancer enough for him to have six more good years, before he died at age 13 on April 17, 2013.

“It wouldn’t have been enough for us to have six years with him if he had spent those six years in the hospital, getting transfusions and dealing with infections. You know, it just wouldn’t have been what anybody wanted. But we had six years, where for the most part, he was in school, which he liked. He was in after-school programs with other kids, and we were able to spend months in Mexico, not seeking treatment, but just enjoying the mountains and the beach. We were able to enjoy spending time with our kid. And none of that would have been possible if he was receiving chemotherapy every week. We would have been tied to the cancer center.”

After all she had seen and experienced over the previous seven years, Miriam was determined to use what she had learned to help change the medical landscape in ways that would make it easier for others faced with similar challenges to find options that could lead to better outcomes.

“There are a lot of people working on this for diabetes and weight loss,” Miriam said, “but there’s not a big contingent focused on cancer.”

Miriam used her experience and education to write a book, Keto for Cancer: A Comprehensive Guide for Patients and Practitioners, that was published in 2017. The forward was written by Thomas Seyfried.

The book is intended to provide readers with an understanding of the therapeutic potential of the ketogenic diet, which, according to Miriam, goes far beyond simply starving cancer. The objective is to explain the impact diet has on the metabolism of cancer cells.

Miriam says she’s seen progress when it comes to the use of the ketogenic diet as a therapeutic intervention for people with cancer, but there is still much work to be done.

“I know that there’s more support for it than there was then,” she said, “but there’s still a lot of trepidation. People are still afraid they’re going to do damage.”

Miriam attended her first LowCarbUSA Conference in San Diego in 2017, where she shared her story and presented her work. She was extremely enthusiastic to find a community of people who shared her vision.

“I discovered a whole community of people that understood that there was something wrong with what we’ve been told about nutrition, something wrong about following the standard advice.”

Miriam also became acutely aware that the nutrition problems facing our population were larger than she’d ever realized.

“The fact is that as long as the food industry is selling their products and making a profit off of junk, we’re going to have junk, and they’re going to promote junk. And there’s always going to be people who are going to prefer eating junk, over switching to whole foods. So you’re not going to win everybody over.”

Clinical Guidelines and Standard of Care – Miriam is looking forward to the day when therapeutic carbohydrate reduction (TCR) is a tool that is accepted as a valid option for a variety of medical conditions throughout the medical community.

She is excited about the Clinical Guidelines, which were developed by LowCarbUSA^®, and now managed by the SMHP, under the supervision of Dr. Adele Hite, PhD, MPH, RD, and a board of experienced clinical practitioners and international experts in the field.

These guidelines provide clinicians with a general protocol for implementing therapeutic carbohydrate reduction as a dietary intervention in hospitals or clinics. The guidelines are meant to be applied as a dietary intervention for specific conditions, including diabetes, epilepsy, and cancer, among other chronic conditions with a root in dysfunctional metabolic health.

Miriam is currently working on the upcoming Clinical Guidelines addendum for cancer specific applications with Dr Nasha Winters.

“This is what we need in order to practice this safely,” Miriam said, “and we need to share the information.”

Miriam believes the SMHP can help bring a degree of much-needed organization and cohesion to the community.

“I’m looking forward to seeing an intersection of the information coming from research and studies at the top, and the grassroots community where individuals are searching for answers.”

Continuing Education – As Miriam learned when she was desperate for information about treatment options for her son, education is critically important if progress is going to be made in the area of therapeutic carbohydrate reduction. She sees this as a role that is perfectly suited for the SMHP.

“Medical professionals are required to earn continuing education credits, so being able to find courses that are specific to our interests is extremely important,” she said. “The SMHP can provide valuable education for nutritionists and dietitians, and other practitioners. It can be a central place where people can obtain reliable information.”

It is also a resource metabolic health practitioners can share with colleagues. Patients can point their own health care practitioners to the site for references, when they discover their practitioner doesn’t understand some aspects of therapeutic carbohydrate reduction. The site is a place where practitioners can gain a better understanding of safety and efficacy, as well as the benefits of these protocols that can contribute to better outcomes in a multitude of chronic illnesses and poor metabolic health situations that are encountered daily.

The SMHP’s educational offerings include Grand Rounds presentations, Townhall meetings, and a free training library. The SMHP also provides a listing of recognized Continuing Metabolic Health Education (CMHE) Providers. The CMHE credits can be applied toward the accreditation.

Metabolic Health Practitioner (MHP) Accreditation – The SMHP accreditation process culminates with qualified individuals earning the MHP distinction, which allows them to use the MHP letters after their name, and display the MHP badge on their provider listing and elsewhere.

“This will be a valuable tool that can be used to establish that you know certain things and it confirms that you’ve been exposed to this body of knowledge and that you’ve demonstrated competency with this body of knowledge,” said Miriam, who has just one more module to complete before earning her SMHP accreditation.

Accreditation certifies that the practitioner has met the SMHP standards of understanding competence in the practice of dietary and lifestyle interventions that address metabolic health.

The SMHP has established several pathways leading to SMHP accreditation as a Metabolic Health Professional, all with the right to display the MHP credentials. Accreditation certifies that the practitioner has met the SMHP standards for diet and lifestyle practices that address metabolic health.

Provider Directory – Miriam is enthusiastic about how the SMHP is helping connect practitioners who are open to metabolic health therapies.

“Having the ability to connect with the people who know more about a certain area than I do is important,” she said. “The SMHP is a resource that will allow me to connect my clients to the right people.”

Practitioners can sign up for a free listing in the SMHP Provider Directory. Members gain all the benefits of the SMHP, including a members badge and the opportunity to earn the accreditation badge.

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Learn more about Miriam’s personal journey and Raffi’s story in the 2016 interview below.