EEG Biofeedback Benefits Families
When Ken Dunning first brought the idea of EEG biofeedback to our FAS*FRI Board of Directors, we were very skeptical. We have always deeply appreciated his concern for children with FAS/E and his search for a real treatment. But most of us on the Board are parents who have many reservations and questions before trying something new. Too many of us had run the gamut of possible treatments with little or no results, only to be plunged into more grief because of false hope. I was especially reluctant to even consider it because my daughter had tried biofeedback (on heart rhythm and breathing rate) for her migraines. After many half-hour trips from Kent to Bellevue twice a week for several months, we decided there was not significant benefit. She ended up sleeping off her migraines.
But Ken gently persisted and did more research, bringing it to the board several times and trying to carefully address our skepticism and concerns. How does it work? Would it really have a positive long-term effect? How could we afford it? Might it change the personalities or family values of our kids?
Our fears were alleviated when we found out that it works on a positive reinforcement basis. When the brain is calm and relaxed, but focused, it is rewarded. A long-term effect has been demonstrated if enough sessions are given (which vary with the diagnoses and symptoms). It will not change personality or values if done correctly, but it can help people to maximize their potential and be the best they can be. (We only recommend treatment providers who are affiliated with EEG Spectrum, Inc. They have a long track record and an ongoing supportive network. Some of the providers in the Northwest who contributed to the results described in this article are Ken Dunning, Jane Beaver, Steve Rothman, Sara LaRiviere and Viki Howard. Area practitioners may be located on the Internet at www.eegspectrum.com or by calling 1-800-789-3456.)
The cost of the sessions varies according to the specific treatment provider. It is not inexpensive and the estimated minimum number of sessions needed for children with FAS/E is between 60 and 80. Some of our families were able to get funding through Adoption Support. Other families just decided it was a priority even without financial assistance because we felt it was an investment in our children’s health and future.
We also found out that there are different placements on the head for the EEG sensors to address many mental health conditions, including ADHD, Post Traumatic Stress, Depression, and Epilepsy, to name a few. Some golfers even use it just to have better concentration on the golf course. The right hookup for individuals with FAS/E can depend on specific behavioral manifestations and/or co-existing conditions. We were especially excited to learn about the established protocol for ADHD (Attention Deficit Hyperactivity Disorder) since it is a co-existing condition in most kids with FAS/E.
After critically analyzing this information and a lot more, we decided that this treatment might indeed be a viable one for our kids. So last summer several families decided to try a series of treatments and see what the results would be. I am thrilled to report that all the people who received treatment received positive benefit! Some were helped more than others were and some were not able to continue treatment for as long as they needed to, for various reasons. But those who were able to complete the recommended number of treatments showed definite, measurable improvement.
The first one in our family to receive this treatment was our daughter, S, who was diagnosed with FAE when she was 16. She began EEG biofeedback when she was 20 in August 1998. She was then on medication for depression, which had some undesirable side effects even before she reached a therapeutic dosage. With EEG treatment 2-3 times a week, in a couple of months she was feeling so much better that she started pursuing employment and was hired within a couple of weeks. She stopped taking her mental health medications because her depression was so much improved. She continued EEG treatment for a couple of months but then decided she didn’t need them any more before she had completed the recommended number of sessions. She has just recently recognized that she could use more sessions and is planning to resume them.
I became intrigued by her progress and recognized that I was in need of help for symptoms of Post Traumatic Stress Disorder (PTSD) and panic attacks. (Raising two children with FAS/E can have that effect. In fact, I think we need a new category in the DSM-IV; PTSD for Ongoing Traumatic Stress Disorder for parents of children with FAS/E, because the stress never stops.) I was experiencing Restless Leg Syndrome and also found it difficult to even keep up with daily tasks like planning and providing meals.
So I started in treatment too. I will have completed 40 sessions by the time this goes to press. I am feeling much more calm and relaxed. I can concentrate without stress. I do not panic over trivial situations, which I had been doing on a regular basis. That “adrenaline rush” that is supposed to be reserved for real emergency situations was spurting through my body multiple times during the normal course of a day. My husband got to the point where he didn’t like me riding in the car with him because I would panic at all brake lights regardless of the remoteness of danger. That’s much better now. I still don’t get excited about cooking responsibilities – that’s probably a personality trait! – but I can easily tackle them now. In fact, the severity of all my stress-related physical problems has been significantly reduced. That’s progress.
During the course of my treatments, my grandson (S’s son, D) began exhibiting some very distressing behavior. Ever since he was a few weeks old he had been having occasional rages, usually after a change in schedule and number of people around him. Before he turned two, he began banging his head when frustrated or disciplined with time out. He would repeatedly hit his forehead on the floor hard enough to raise a large bump and bruise. One time he hit it hard enough to give himself a slight concussion. Of course we were alarmed and deeply concerned. He also became very obsessive about some things. For example, he would rapidly repeat the name of something he saw (20 times) or get upset if our cars weren’t parked in exactly the “right:” place.
I have always been proud of S for not drinking during her pregnancy. But as we say in our training, we don’t know what genetic damage may occur with several previous generations of alcohol exposure. This is especially an issue for girls, since they are born with all the eggs they will ever have, which might be exposed, too. I also remembered that S’s pregnancy was unplanned and she had been on medications for depression and sleep disturbance at the time she found out she was pregnant. Although I tried to find out what effects those medications could have had, all I discovered was warnings that they should not be taken when pregnant. But whatever the cause of his behavior, he needed help.
So I inquired about EEG biofeedback treatments for D. I learned that there have actually been babies only a few months old who have benefited from this treatment. It took several sessions to find out which “hookup” was the best for him, but within a few weeks his head banging drastically diminished. He was very sensitive to treatment so we had to change the approach when he became whiney and depressed. (Another advantage of this type of treatment is that, unlike medication, negative side effects can be reversed fairly quickly). He has completed 37 sessions and his behavior is now much closer to a typical two year old I am so thankful this type of treatment was available and we won’t have to resort to medication at his young age. We will be consulting a child psychiatrist to get additional input on his behavior. (This type of consultation is often recommended along with EEG biofeedback.)
One of the unexpected side benefits of this treatment was a marked improvement in D’s verbal abilities. Before he started, he was only speaking a few words. Now he is very verbal and sounds like a little human parrot.
In addition to documenting my family’s experience, we surveyed other families who were eager to share their participation in EEG biofeedback. One child, K, was ten years old when he started EEG biofeedback in October 1998. He has completed 60 sessions. He was diagnosed with FAS by Dr. Sterling Clarren and also has symptoms of ADHD. His mom, J, is happy to report that K experienced his best school year ever this last year. His ADHD symptoms have been greatly reduced and he has been able to quit taking both Ritalin and Trazadone.
Another child, A, has not been allowed in elementary school for several years because of his inability to concentrate and his violent, aggressive behavior. He was also diagnosed with FAS by Dr. Sterling Clarren. He has had 200 EEG biofeedback sessions since July 1998. His mom, P, said that at the time he started treatment she was so desperate she was willing to try anything. She reports that A has had no epileptic seizures since November 1998 and his need for medication has been greatly reduced. Last week he woke up his mom at 3 am to help him with his schoolwork!
T, age 9, has needed to be hospitalized in the past for severe behavioral problems which subsequently required several months of out-of-home placement with 24-hour supervision. T, also diagnosed with FAS/E, is a survivor. As a preemie, he lived through having the highest amount of cocaine in his system at birth of any baby they had ever seen in W, Washington. T began EEG biofeedback in July 1998 and has had about 200 sessions. His mother, D, reports that she has been able to drastically decrease his medications since the biofeedback began. T’s ability to behave and learn in school has dramatically improved. The year before treatment he had to repeat second grade and he was only allowed to come to school half days. Last year, with Eeg biofeedback, he attended full time, skipped third grade and successfully completed fourth grade. “It’s not a cure-all,” says D, “but it definitely helps and I highly recommend it to others.”
M started EEG biofeedback in June 1998 at age 14. Prior to that time he had been arrested several times and had been in inpatient mental health treatment for his severe, violent behavior. He had 20 sessions and then refused to have any more. M’s dad, D, observed that there was initial improvement in attention span, but he believes that diagnosis and intervention at a much earlier age would have been more helpful. The family also needed support to implement structure and train new positive behaviors. They did not receive this type of support so M’s behavior has not improved long term. D is convinced, however, that if M could get the structure he needs he would benefit from more EEG biofeedback.
M’s mom, J, also started EEG biofeedback in June 1998. She had a total of 34 sessions before she had to stop for various reasons. She definitely liked the relaxed feeling when she had one type of treatment, while husband D preferred another type that helped her focus and concentrate. J was really excited when she was able for the first time to screen out her kids’ chatter and actually finish washing the dishes! J hopes she will be able to resume treatment in the near future.
FAS*FRI will continue to survey and record the progress of these individuals so their experiences can be documented for research purposes.
Printed in FAS Times, Fall 99