In April of 2003, my wife and I made a trip to Boston to talk with a surgeon on Anna's medical team. We wanted to review the results or her extended 24-hour EEG monitoring, FMRI and PET scan and discuss the recommendation for "resecting" (surgically removing) a seizure focus from Anna's, brain, one that had developed during the early formation of the brain tissue and was sending out continuous, high energy, disruptive electrical activity. This electrical activity occasionally resulted in an overt seizure, causing her to suddenly lose body muscle tone and "melt" onto the floor. She had been on heavy anti-epileptic medications since the age of 16 months. Between the continuous "lightning storm" in her brain and the heavy medications designed to "slow down" neuronal activity, the impact on her learning was significant, despite her heroic efforts. We were highly motivated to help her.
We were alarmed to come away from that discussion with the distinct impression that the surgeon intended to remove a significant portion of the left posterior (back) quadrant of her brain and that surgery would leave her without some of her faculties, including full visual fields.
Since I had read Jim Robin's book, "A Symphony in the Brain", a couple of years earlier, and of the successes of neurofeedback in some schools, I had become very interested in the subject and had been learning more and more about it's successes with epilepsy. I made a decision to pursue neurofeedback in lieu of surgery. My wife, Connie, agreed.
I wrote a one-page description of my daughter's condition and emailed it to some of the top researchers and practitioners in the country, asking about the availability of equipment, training, supervision and help. Siegfried Othmer, a leader in the field of neurofeedback, responded immediately. He put us in touch with Jamie Deckoff-Jones, a physician in Great Barrington in western Massachusetts. She was quick to respond with overviews of the epilepsy cases she had seen and their mostly positive outcomes. She also put me in touch with a well-known training and equipment provider who was able to get me into a 4-day training class in Boston the following weekend. We spent the two weeks after that commuting 6 hours each way to Great Barrington three days a week for evaluation, neurofeedback and hands-on training and protocol selection.
We brought the equipment home and began a daily program of neurofeedback using a Neuro-Cybernetics system from EEG Spectrum. This system utilizes some extremely simple "games" on a computer screen, the parameters of which are controlled by the brainwave patterns. Anna learned to control the characteristics of her brainwaves to make high scores on the games. Over time I could see cycles in the magnitude of the massive spike and wave activity that characterized Anna's epileptiform (seizure-type) brainwave activity. Over even longer periods of time, I could see the peaks of each cycle began to diminish, slowly, by small amounts.
I continued to buy textbooks and study information from the field intensely. The following February, nearly a year after having begun this process, I attended a professional neurofeedback conference, the Winter Brain Conference, in 29 Palms, California. I took courses from Joel and Judith Lubar, pioneers in the application of neurofeedback to epilepsy, ADD and ADHD, and shorter courses and lectures from a dozen or more other neurofeedback researchers and professionals. I bought video and audio tapes of other lectures that I couldn't attend.
While I was there, I purchased and received training on another type of neurofeedback system called NeuroCARE Pro (NCP), with the hope it would speed up the process of normalizing Anna's brainwave patterns. At first I alternated between the two systems, then switched entirely to NCP. Still Anna's progress seemed very slow. I tried to keep in mind that slow was still better and far less risky than brain surgery.
The following September I attended the iSNR (International Society for Neuronal Regulation) neurofeedback conference, and brought Anna and Connie with me. Once again it was 9 solid days of classes and lectures. What was different was that Anna was there. I had made arrangements for her to receive a LENS session from Dr. Len Ochs, the developer of the system. I had the opportunity to watch as a one second period of feedback was followed by a temporary reduction in the epileptiform activity by a factor of two! I was very impressed. This system, which utilizes a low energy feedback signal, had produced a very powerful effect on her brain from what Len said was only one second of feedback.
I ordered the LENS system and both Connie and I took classes in its use. Anna began getting LENS sessions every other weekend and NCP sessions on the alternate weekends. Although at first we saw significant, but still only somewhat subtle, changes in the brainwave patterns, Anna had begun doing well in school. As time went on, we switched to all LENS sessions and saw even more reduction in the epileptiform brainwave pattern.
Over time, I began to spot some potential for improvements, and began a long process to develop a sytem that would provide even more results. The many hundreds of hours I put into the development was well rewarded in Anna's progress.
The process is still continuing for Anna. Over the course of her neurofeedback sessions, she has gone from struggling to to keep pace with two years behind her class, to receiving A's and B's on her report cards. Teachers have remarked at seeing the changes in her behavior, from rarely volunteering to often raising her hand with the answer. Her reading comprehension scores had improved over time from the bottom two percentile before starting neurofeedback, to the 19th percentile, then to the 50th, and finally to the 62nd percentile. She had done a remarkable job of comming from behind.
In one visit to her neurologist, the world renowned Dr. James Riviello, III, he described her progress in these words: "It's a miracle."
Through my experience with Anna, and the extensive certification training I have received, I became motivated to offer neurofeedback, especially to those whose lives could be turned around. I realized that children's self-esteem and self-worth could be significantly improved by having access to the functionality of which their brains are really capable. I also have a special affinity for adults with brain injuries or other acquired CNS disturbances who have already consulted their Primary Care Physicians, have been sent to specialists, and who still have unsatisfactory answers to their lost mental capability.
Update: Anna has since graduated high school with a remarkable academic record, and was voted "most changed" by her senior class. She has also changed her name to Violet, has become a published author under Ultraviolet Publishing, and may be found on Amazon under "Behind the Artist's Eyes", where you can read the story from her own perspective.
If you are wondering if you, or someone you know and maybe love, might be helped by neurofeedback training, please check out our What else can it help? section, and call or email us. We'd be happy to discuss the details with you.
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