Using biofeedback (also called neurofeedback or neurotherapy) to treat my daughter Natalie's attention deficit hyperactivity disorder (ADD/ADHD) and comorbid conditions has my insides aching with hope for a significant, lasting improvement in her symptoms. I often feel as if I'm about to cry. Why is something as wonderful as hope so terribly painful?
by Kay Marner
Some time ago I wrote about Katherine Ellison’s book Buzz: A Year of Paying Attention, which chronicles Ellison's quest to treat her and her son's attention deficit hyperactivity disorder (ADD/ADHD). After reading it, I considered having my daughter, Natalie, try neurofeedback training, an alternative ADD/ADHD treatment that is also sometimes referred to as biofeedback or neurotherapy, which is aimed at training the brain to reduce impulsivity and increase focus. It’s one of several approaches to managing ADD/ADHD that Ellison, an adult with ADD/ADHD, describes exploring for herself and her son, Buzz, who also has ADD/ADHD, in the book. My interest piqued, I researched neurofeedback online and read a book about it from the library. Then I ran the idea by Natalie’s psychologist, Dr. Phillips.
He didn’t say we shouldn’t try it. He didn’t say it couldn’t work. He said that in the years he’s been practicing, he’s seen many parents become excited about various ADD/ADHD treatments or strategies that they hear about. They invest a lot of money, time, and emotional energy in their latest discovery in hopes that it will help their child. When it doesn’t, he ends up guiding those parents through the grief process around accepting a child’s disability all over again. Whether or not we tried neurofeedback was up to me, of course, but I’d risk re-experiencing that grief if the treatment didn’t yield an improvement. After some thought, I decided to halt my research, and I shelved the idea of biofeedback.
But recently, we had an appointment with Dr. Phillips, and he brought the topic of neurofeedback up again. He’s had three clients initiate neurofeedback training with a particular practitioner, and all three appear to be enjoying some benefits. He suggested I consider meeting with the practitioner, just to learn more.
I did not consider meeting with her just to learn more. No, I jumped right in and scheduled an appointment to get Natalie started!
I tried -- really tried -- to go into this experiment with realistic expectations, to stay neutral about whether or not there’s anything to it, or, if not neutral, to err on the side of wariness rather than hope. But we’re talking about my daughter’s life here. I couldn’t help but become emotionally invested.
Our first appointment was for an evaluation. The practitioner, Ladelle Lybarger, is a retired nurse who works out of her home office in Des Moines, Iowa. She put Natalie and me at ease immediately with her quiet, gentle demeanor. Explaining every movement, she cleaned off two small spots on Natalie’s scalp and stuck electrodes to the spots with a little conductive gel and also clipped one to Natalie’s ear. After a few keyboard strokes on a laptop set off to the side, an EEG readout began to run across a computer monitor that faced Natalie’s chair. Three separate lines appeared, representing different types of brain waves. Lybarger repeated this a few times, moving the electrodes to different locations on Nat’s scalp. She printed out hard copies of the readouts, on which she identified specific patterns in the waves. It was fascinating to get a visual showing how certain brain waves were too slow, causing inattention. Another type of wave showed sudden large bursts of energy, indicating that another part of Nat’s brain was working hard to compensate for the inattention. This, the nurse said, explained why Natalie has trouble sleeping. Even as she tries to slow down to prepare for sleep, those bursts of energy continue, trying hard to keep her brain awake and alert. The first goal of the neurofeedback training would be to train the “sleepy” waves to maintain a more effective level. In other words, Lybarger had identified problems that she knows how to work with. She believes she can help. We agreed to begin once-a-week treatments. (More on those in future posts!)
Before we left that first appointment, Lybarger offered to lend me the book A Symphony in the Brain: The Evolution of the New Brain Wave Biofeedback by Jim Robbins. I accepted it eagerly, and for the next week, I immersed myself in learning more about biofeedback. I learned it could help with a variety of problems, from migraine headaches to severe brain injuries. For kids like Natalie, if it works, it could improve virtually all the symptoms of ADD/ADHD -- inattention, sleep issues, regulation of emotions, impulsivity -- noninvasively, safely, and with long-term effects -- the stuff of miracles to parents like me. My hopes rose like a hot air balloon in the summer sky.
Then I’d read something else, and it would blow holes in that hope, on an online forum where the majority of participants reported no effect from their forays into neurofeedback and in a book about ADHD that reported that while there is some research that suggests neurofeedback may help, none suggests it can replace medication -- something I had begun to hope was possible. Then I read another pro-neurofeedback book -- Healing Young Brains: The Neurofeedback Solution, by Robert W. Hill, Ph.D., and Eduardo Castro, M.D., on my Kindle, and its contents were as positive as the loaded words in its title. Up my hopes rose.
I told Nat’s psychiatrist, Dr. Mishra, that we were going to start neurofeedback training. “The research doesn’t support it,” she responded, simply and directly. I shrugged. We’re going to do it anyway, I thought to myself, but her words often echo in my mind.
On our next visit to Dr. Phillips, I updated him on our first three neurofeedback sessions. I confessed that I had let my hopes rise. For two days after session number two, Natalie was unusually calm, almost sleepy. I wanted to attribute that effect to the neurofeedback, but I know it could be totally unrelated. He tried to tether my hopes -- to ground me in reality. I know, I know! I thought as he told me to think of this as just one more tool among many, just one piece of an overall treatment plan. That’s just what I’d tell you, I thought as he spoke, if I were the therapist and you were the client’s parent. But I want to believe in neurofeedback, and its potential to help my daughter, so badly!
The emotional ups and downs have left me depressed, exhausted. Why did I get my hopes up? On the other hand, why shouldn’t we give bioback a try? I don’t know what the future holds. All I know is that even as my brain says use caution, my tender heart flies.