Brain Balance – follow up
In the four years since I wrote my initial post about Brain Balance, I have received innumerable emails from anxious parents asking for my perspective following the program. Unfortunately, I am no longer able to personally respond to all the inquiries I receive. I am writing this post to address those questions, and to provide some additional information.
The main question I received from parents over the years is some variation of “is it worth it?” In other words, will the cost, the time, the stress of the program result in a happier, healthier, well adjusted kid? The answer (for us at least), is sadly (but unequivocally), no.
There were very enticing aspects of the Brain Balance program, which I described in detail in my earlier post. But in hindsight, on our most angry days, my partner and I have called it ‘modern day snake oil’. It is likely that your children will see an improvement while you are doing the intensive program, which is one hour three times a week. We paid for two sessions for our oldest and one for youngest. Buy the end of the second session, we stopped seeing progress and we were completely disillusioned. And down $15K in our retirement account.
It might be useful to provide some more detail on our two boys, who were four and six at the time. We had just relocated for my new job, and so we had to establish new social networks, new physicians for the kids, and more. However, if you are not interested in the details of our kids’ stories, please jump ahead to the final section entitled What should I do instead (of Brain Balance)?
Before our move, our oldest was diagnosed at age three with Pervasive Developmental Disorder – Not Otherwise Specified, or PDD-NOS for short. At the time, it was part of the Autism Spectrum Disorder (ASD) diagnosis at the more high-functioning end. He has had an Individualized Education Plan (IEP) since that time, which has included fine motor skills, language / communication, and a host of social issues. Although intellectually high functioning, he was struggling to exhibit socially appropriate behavior and connect with peers. Like any parent under those conditions, we were extremely worried about his future.
Once we were settled in our new home and new school district (and after extensive research), we made a decision to put our oldest son on a gluten and dairy free diet (GFCF, where the C stands for casein, the protein in milk products). We saw really significant behavior differences as a result of those dietary changes. We removed gluten first, and saw a lot of his anger and aggressive behavior disappear overnight. The elimination of dairy evened him out emotionally – reducing anger and sadness to the point where he started to feel like a neurotypical kid. I mention this because Brain Balance centers do recommend these changes, and it might be possible to experience truly radical changes that have more to do with the dietary changes than with the program itself. In fact, in our experience, the dietary changes were significantly more impactful than almost everything else we’ve tried in the six years since his initial diagnosis.
When we first started the Brain Balance program, one of the things we noticed was changes in his sense of smell. Specifically, he had never responded to smells in the house before. But following some of the sensory work at Brain Balance, he commented more than once on the smells coming from the kitchen – “Mmm, Mama, are you making cookies?”.
Other perseverating behaviors became less prevalent as well. For example, he used to create imaginary ‘guys’, elaborate characters will different skills and abilities who fought in an imagined universe. He would talk about them, draw them, and play independently with those characters for hours on end. It was very hard for him to engage in imaginative play with other kids, because it was so elaborate and different that other kids had no idea how to engage. However, over the course of the Brain Balance program, he started to do less and less with his “guys”. In fact at one point, he told us that he was losing the ability to create new guys, which was a bit distressing for him. His feedback reminded me of John Elder Robison, author of Look Me in the Eye, who described his experience of coming to terms with his adult diagnosis of Asperger Syndrome. Robison realized he could either work deeply in music engineering, or he could develop social skills and engage with the world. When he did the latter, the part of his brain that was so deeply engrossed in making musical instruments began to atrophy. I felt there were very real parallels between his story and what we were seeing with our oldest.
However, with the exception of those two experiences, following the completion of Brain Balance, we really felt there were no meaningful, lasting changes. Angry, frustrated, disappointed (and $10K poorer), we began to look for alternatives yet again. We had moved to a new state before the kids started school, and a friend in our new hometown referred us to a neuro-developmental pediatrician, who evaluated our son. With the dietary changes (and the changes to the diagnostic manual), he no longer has an ASD diagnosis. He’s still the same kid – intelligent, with a number of Asperger-like tendencies – but the label has changed. He is now technically diagnosed with ADHD, with other behaviors that look a bit like autism.
After discussions with the physician and at home, we made the difficult decision to try medication. We shed a lot of tears over the decision, because we had started Brain Balance in part to avoid medication if at all possible. We know medicines can be scary, including awful side effects such as self-isolation or aggression. But ultimately, the main drivers for us were that he desperately wanted to connect with his peers (but didn’t know how), and that the inability to connect was affecting his self-esteem.
It took us three different types of medicine to find the right one for him. We stopped the first few for various reasons, including oppositional behavior, aggression, isolation, and more. When we finally found something that worked, his second grade year was over. He started third grade with a whole new group of classmates, and had his first experience of having a posse – “The Gang” that he sat with at lunch, and played with at recess. One of those friends eventually blossomed into a best friend – something we never imagined possible a few years before.
At age nine, does he still have issues? Of course he does! Don’t we all?! But he continues to make friends in school, and he getting more active in sports. He still struggles with pragmatic language and reading social queues (social communication), but we have high hopes that he is going to be a happy, nerdy, successful young man some day.
Our youngest son was three at the time we enrolled him in Brain Balance. Because he was so young, his program was modified. We didn’t notice any meaningful changes as a result of his enrollment in Brain Balance.
He was formally diagnosed with ADHD in kindergarten. At the time he was exhibiting a lot of the classic behaviors – he was super focused when engaged in preferred tasks (Legos, iPad time, being read to). The rest of the time he was noisy and high energy, seeking stimulation through touch, sound, and mild troublemaking of various kinds. At the time, he was too young for medication.
He was on a gluten- and dairy-free diet, mostly. He was in afternoon kindergarten, so in the mornings he would run errands with my partner, including grocery shopping and more. Many times, the reward was a lunch date at Panera, complete with grilled cheese, a tube of yogurt, and more. And then, he would go off to school and engage in all kinds of disruptive behavior. A meeting with the Learning Behavioral Specialist (LBS) at the school confirmed that consistent dietary changes were needed, and sadly, the sweet little lunch dates at Panera had to stop. However, within 24 hours of making the change, we received three, independent, unsolicited bits of feedback from his teachers about the remarkable improvements they were seeing. This further reinforced for us the importance of diet in managing ADHD symptoms.
Unfortunately, by the first grade, the disruptive behavior had gotten worse, perhaps because he was in school for the full day, and the expectations were starting to increase. He failed to complete any of the questions on the baseline standardized tests for his grade. A zero. We were told that exceptionally focused students could hope to make up thirty percentage points in a year – from 0 to 30%, if we were lucky. He basically was not demonstrating that he would be ready for second grade with his peers. It was following that (and a Parent Teacher convergence with an extremely frustrated teacher) that we finally decided to try medicine for our youngest as well. Academic success played a big role our our decision, of course, but the breaking point for us was when he came home and said to us “Why am I always on Yellow or Red at school? I never make it to Purple like the other kids do.”
We started him on medication in the Spring of his first grade year, and we saw extraordinary results. For his first two weeks on the medicine he came home on Purple every day, and he was just over the moon. By the end of the year, he was testing in the middle / high end of his cohort on the standardized tests, something that would have been unimaginable just a few months earlier.
What should we do instead?
If I knew then what I knew now … well, I’d have $15K in my pocket. But since they are both doing well now, I would have also had a lot less heartache about how to help our kids! If you are just starting your research, here are some things to consider:
- Keep in mind that while many of these conditions express in aberrant behavior, they are the result (at least in part) of biochemical imbalances. Thus, the conditions can be addressed to some degree by understanding your child’s genetic pre-dispositions, changing diet, and introducing proper supplementation. Of course, in many cases, behavior change and/or IEPs are still absolutely necessary – that is certainly true for our kids.
- Based on what we’ve learned along the way, we would not recommend Dr. Daniel Amen’s approach, either. Like the Brain Balance centers, there are many enticing things about how he approaches these issues and proposes to solve them. There is some science and a whole lot of guesswork. When you consider the complexities of genetics, environment, and more, I really believe there is just no mass-produced, cookie-cutter solution for complex cases like ours.
- I do recommend you look at the research and writing of Amy Yasko. Her work is dense and highly sophisticated, but in essence she is helping to treat people with Autism Spectrum diagnosis through a deep understanding of biochemistry. Much of her research is available for free.
- You might also consider getting your child’s genome mapped at 23andme, and then taking that information to a Functional Medicine Practitioner (FMP) who can help put the right personalized treatment programs in place. You can read more about how I’ve used those reports to manage my own health in this blog post.
I wish you the best of luck in your own efforts to take care of your little family members. I apologize that I am not able to respond to all of your anxious and heartfelt inquiries personally, but I hope this additional detail will help you on your way.