On the Life of John Menkes

by Siegfried Othmer | December 2nd, 2008

John Hans Menkes was a well-known pediatric neurologist here in Los Angeles. He just died of cancer at the age of 79. He was well-known for having discovered what came to be known at Menkes syndrome, a rare childhood disorder. He is also the author of the “Textbook of Child Neurology” that has been the standard of the field for some thirty years. I write about him here because he played a role in the lives of two of our children. When our daughter Karen was diagnosed with a brain tumor at some seven months of age, it was John Menkes who referred us to the University of San Francisco for chemotherapy. In retrospect, the pursuit of all medical options with our daughter was probably unwise. She was effectively an experimental animal, pioneering a variety of treatments. In the case of the chemotherapy, for example, she was the youngest ever to be so treated. There weren’t even any guidelines for dosing infants at the time.

This was before all the modern imagery techniques were available, so Karen was subjected first to pneumoencephalography, known to be extremely painful, and then to exploratory surgery. The tumor was non-operable. Then came radiation therapy, and finally chemo. Given the infinitesimal prospects of success with a rapidly growing brain tumor back in 1975, aggressive treatment should never have been attempted. As it was, Karen’s treatment amounted to torture, albeit at the hands of the most caring physicians one could have wanted. The physicians simply offered up the best of which they were capable, and one tended to progress from one procedure to another. The larger question of whether any of this made sense was never put on the table.

When our son Brian developed his difficulties with seizures a year or two later, our pediatrician seemed to have things well under control with the combination of Dilantin and Tegretol, the latter still an experimental drug at the time. Nevertheless, if we were dealing with a seizure disorder, perhaps a neurologist should be in the loop. Since we knew Menkes already, we made an appointment to see him with Brian. Brian had other plans, however, and locked himself in the men’s room. His seizures may have been controlled, but his behavior was still unpredictable.

Menkes thought that Brian was merely a rambunctious kid, and when we mentioned seizures, Menkes jumped down our throat at once. Only he gets to use that word, not we… Of course the only reason we were using it was that our pediatrician had already done so. But in the prevailing medical hierarchy, he didn’t get to do that either. Menkes thought that the dose of Tegretol was insufficient to be medically effective, we had to be benefiting from a placebo. Later the blood level was found to be within clinically effective range, so Menkes changed his mind.

Menkes reminded me of Sigmund Freud. He had also come from Austria. He conveyed the aloof professorial manner typical of European academics of the time. He always wore a three-piece suit, and he wrote in perfect paragraphs just as Freud did.

Our final interaction with Menkes was indirect, and it came years later. He was sharing an office with a highly-regarded neuropsychologist who had been curious about neurofeedback for some time. When she finally crossed the threshold and attended our training course, she was struck by the correspondence between Sue’s model and her own paradigm. Sue had obviously come to this view by a very different, predominantly empirical, pathway. It would be difficult for her to dismiss all of this. She bought a system to test things out, only to find that there was insufficient space in her suite to accommodate the two-computer set-up. She asked Menkes if it would be ok for her to use some of his space. “Get that thing out of my office” was his curt response. He wanted to have nothing to do with that neurofeedback nonsense. Even having the device sitting in his office could be misinterpreted by colleagues as giving safe harbor to a rogue technology.

There is of course nothing new in neurologists dismissing neurofeedback out of hand. What is different here, however, is that Menkes was ever a probing and inquisitive scientific mind, one that was prepared to track even extremely rare syndromes down to their source. He did not hesitate to step outside the herd when the occasion called for it. For example, he testified on behalf of plaintiffs who thought their children had been injured by the DPT vaccine. This failure of solidarity alienated many of his colleagues. Menkes’ first novel dealt with a physician’s efforts to force a pharmaceutical company to acknowledge horrible side effects in an anti-depressant.

It was our history with Menkes, among other things, that convinced me neurofeedback was never going to enter the field of neurology through the front door. Neurology will remain the last frontier for neurofeedback.

Siegfried Othmer, Ph.D.

One Response to “On the Life of John Menkes”

  1. June Caruso says:

    I happened to read your website about John Menkes (6/12/2009) today. I only knew Dr. Menkes briefly and never worked with him. I am a pediatric neurologist who was fired because I am never believed.

    It was most likely that your daughter, Karen, was born with a congenital heart defect. She then quickly (or in-utero) developed a viral infection which spread through her vascular system and, eventually, do to her fast metabolic rate and insulin production, developed into a brain tumor mass.

    With your son, Brian, he must have a slower metabolic rate with his insulin production, and has been presenting by and through seizures. What I have found, through the years, is that most regular cardiologists do not understand that you may be searching to find if your child/son/or daughter may have a heart defect – it takes a cardiothoracic surgeon or an orthopedic or neurosurgeon to locate
    the defect, and often when the patient has a sudden hypoglycemic (insulin) crash.

    Chemotherapy really does very little for malignancies, as malignancies originate from viruses;
    and chemotherapy is ONLY antibiotic therapy for bacteria.

    Radiation therapy will shrink a tumor for some time, whether benign or malignant, but radiation
    will not make the tumor subside completely or cure it; nor will it heal the patient at the place of
    origin of the tumor (i.e. the vascular system, the heart, a viral infection).

    Unfortunately, from my viewpoint, at my experience, right there in childrens’ oncology hospitals,
    is chemotherapy is a money-making racketeering business, and the oncologists are and have been
    making big-time money on infants, children and adults with chemo when they know very well
    that the chemo will be ineffective for their patients. It is a business that cannot be stopped.

    Thank you,
    June Caruso

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