Could neurofeedback training help my daughter who has attention deficit hyperactivity disorder (ADD/ADHD), anxiety, sleep problems, and sensory processing disorder? Here's my review of this alternative therapy.
by Kay Marner
As I wrote in a recent post, my daughter, Natalie, who has attention deficit hyperactivity disorder (ADD/ADHD) and other comorbid conditions, recently began neurofeedback training. I find it fascinating to see a visual display (that is, a computer program’s interpretation) of what’s going on in her complex, dysfunctional (but doggedly resilient) brain.
Before Natalie’s training sessions began, our neurofeedback practitioner, Ladell Lybarger, did an hour-long evaluation. An evaluation is intended to guide the practitioner in how to treat each individual. First, the practitioner identifies what’s abnormal in the person’s brain waves. Then, guided by what she learns, she devises a strategy for treatment: which of the standard sites on the scalp to train, in what order, with which of her neurofeedback devices, and for how many seconds or minutes each time.
As Lybarger did her evaluation, I flipped through a stack of laminated pages, samples of EEGs from people with various conditions -- a normal adult, a child with autism, and people with a history of seizures, migraine headaches, brain injuries, strokes, and ADD/ADHD. Each time I flipped to a different example, I glanced up and back down again, trying with my untrained eyes to compare the examples with Natalie’s EEG readout, live on the computer screen. At the time, I thought her brain waves most closely matched those of a child with autism. Hmmm.
The results of Natalie’s evaluation were surprising. In fact, Lybarger’s explanation of what she gleaned from the EEG readout of Natalie’s brain waves regarding the etiology of her particular cluster of symptoms -- and the diagnoses they suggested -- was very unexpected and completely opposed to what I believe to be true about Natalie. It has taken me a solid two weeks to sort through and synthesize everything I was told. No, that’s not even true. The truth is, I’m still trying to make sense of it all, to make it fit with my eight years of experience with Natalie and with the diagnostic terms traditional doctors and psychologists have always used to describe her condition. I’m trying to understand things that no one ever previously considered possible.
First, Lybarger pointed out several examples of a pattern that she believes indicates that Natalie had a viral or bacterial infection in her brain at some point. Lybarger’s assertion is entirely possible. I immediately thought back to how little we know about the first two and a half years of her life spent in a hospital and an orphanage in Russia. We know she spent her first five or six months in the hospital with an upper respiratory infection and an ear infection and that she had hepatitis B at some point, too.
Next, Lybarger showed me a couple of spots where the pattern suggests a brain injury, which could be as simple as a childhood fall. I think of the time I took Natalie to the doctor for X-rays after she fell from a play structure at our neighborhood park and hurt her neck. The doctor proclaimed, “No cracks, no breaks!” and said we could use ibuprofen if needed for muscle pain. There was also the time another child jumped off the diving board at the pool right onto Natalie’s head as she was shooting back up to the surface after her own jump. We didn’t go to the doctor after that incident, and I didn’t notice any aftereffects. Are those brain injuries to be counted?
Finally, Lybarger found a few peaks that are consistent with Asperger’s syndrome. Another hmmm. Natalie has a few autism-related symptoms -- some hand flapping, a lot of rocking -- but she clearly doesn’t meet the diagnostic criteria for Asperger’s or anything on the autism spectrum. (Her psychological testing ruled those out, but I looked up and double-checked the diagnostic criteria again!) As I wrote previously, Lybarger also explained Natalie’s inattention and sleep disturbance -- the waves that were too “sleepy” and those sudden, large bursts of “good energy” that show that her brain works hard to compensate for the too-slow waves. This part made sense to me, in terms of what I understand about ADD/ADHD. What should I make of all the other contradictory information?
At our second appointment, while Natalie was having her first training session, Lybarger and I reviewed all the information again. Infection in the brain. Brain injury. Asperger’s peaks. Again, I sorted through the laminated examples of the EEGs of people with various conditions. I pulled out the one for ADD/ADHD.
“Natalie’s doesn’t look anything like this,” I said.
“No, it doesn’t,” Lybarger said.
I thought for a beat and then persisted. “Why doesn’t it?” I asked.
Lybarger looked me straight in the eye. “Because she doesn’t have it.”
Big hmmmmmm. I’m still thinking about that and can count the reasons why on my fingers: 1) Our pediatrician says she has it. 2) All of that psychological testing shows that she has it. 3) Her psychiatrist says that she has it. 4) She responds to meds that treat it. Besides, I’ve been writing a blog saying she has it for the last three years! What if she doesn’t have it?
It looks like a duck. It sounds like a duck. But is it really a duck? If Natalie has all of the symptoms of ADD/ADHD (which she does), whether they stem from brain injury, a brain infection, genetics, exposure to alcohol in utero, or heck, alien abduction, isn’t it still ADD/ADHD?
I decided that the etiology of her symptoms doesn’t matter, nor does what we call it. Whether we call her cluster of symptoms ADD/ADHD, Mystery Mind, or Natalie’s Syndrome doesn’t matter. The reading I’ve done about neurofeedback has given me hope. The fact that Lybarger identified sleepy brain waves that she’s confident she can normalize gives me hope. I’ll let the experts battle over semantics.
In the meantime, I’m putting my energy into hoping that Lybarger and her magic machines can make Natalie’s cluster of symptoms -- whatever their cause, whatever their name -- better.