Here's a collection of information about neurofeedback including the Wiki definition; FAQ section; a simple online article; a note from Lydia's mom, Jane; an abstract from a study on neurofeedback and DS; and the title of another study (that I couldn't find online yet). I will update as I have more time. About six months ago I had contacted someone locally to do neurofeedback for Jett. I'd be able to pay for it through a local barter system. The physician was calling the company to see if they had feedback panels small enough for Jett's hands. I must have gotten side tracked with something else, but I'll definitely be revisiting this and recontacting her. I probably stopped pursuing it because it would be an ongoing treatment and I'd need to purchase the machine to continue long term. I didn't realize that it might negate the need for Prozac. That would be nice! (I haven't looked for studies on it, so I'm not sure how valid the statement is.)

From Wikipedia

Neurofeedback is a type of biofeedback that uses electroencephalography or fMRI to provide a signal that can be used by a person to receive feedback about brain activity.
Like other forms of biofeedback, neurofeedback training (NFT) uses monitoring devices to provide moment-to-moment information to an individual on the state of their physiological functioning. The characteristic that distinguishes NFT from other biofeedback is a focus on the central nervous system and the brain. NFT has its foundations in basic and applied neuroscience as well as data-based clinical practice. It takes into account behavioral, cognitive, and subjective aspects as well as brain activity.
During training, sensors are placed on the scalp and then connected to sensitive electronics and computer software that detect, amplify, and record specific brain activity. Resulting information is fed back to the trainee virtually instantaneously with the conceptual understanding that changes in the feedback signal indicate whether or not the trainee's brain activity is within the designated range. Based on this feedback, various principles of learning, and practitioner guidance, changes in brain patterns occur and are associated with positive changes in physical, emotional, and cognitive states. Often the trainee is not consciously aware of the mechanisms by which such changes are accomplished although people routinely acquire a "felt sense" of these positive changes and often are able to access these states outside the feedback session.

Source: http://www.eeginfo.com/what-is-neurofeedback.htm

What is Neurofeedback?
Neurofeedback is direct training of brain function, by which the brain learns to function more efficiently. We observe the brain in action from moment to moment. We show that information back to the person. And we reward the brain for changing its own activity to more appropriate patterns. This is a gradual learning process. It applies to any aspect of brain function that we can measure. Neurofeedback is also called EEG Biofeedback, because it is based on electrical brain activity, the electroencephalogram, or EEG. Neurofeedback is training in self-regulation. It is simply biofeedback applied to the brain directly. Self-regulation is a necessary part of good brain function. Self-regulation training allows the system (the central nervous system) to function better.

How does Neurofeedback work?

We apply electrodes to the scalp to listen in on brainwave activity. We process the signal by computer, and we extract information about certain key brainwave frequencies. (All brainwave frequencies are equal, but some are more equal than others….) We show the ebb and flow of this activity back to the person, who attempts to change the activity level. Some frequencies we wish to promote. Others we wish to diminish. We present this information to the person in the form of a video game. The person is effectively playing the video game with his or her brain. Eventually the brainwave activity is "shaped" toward more desirable, more regulated performance. The frequencies we target, and the specific locations on the scalp where we listen in on the brain, are specific to the conditions we are trying to address, and specific to the individual.

Who provides Neurofeedback & where can I find a provider?

Neurofeedback (EEG Biofeedback) is typically provided by mental health professionals such as psychologists, family therapists, and counselors. These professions usually work with clients one-on-one. The training may also be provided by nurses, clinical social workers, rehabilitation specialists, and educators. MDs also provide the service, but with the exception of psychiatrists will usually have the service provided by a trained staff person.

The EEG Directory is a great place to find a provider. You may search by Zip code to locate a provider in your local area.

Do the effects of Neurofeedback / EEG Biofeedback training really last?

If the problem being addressed is one of brain disregulation, then the answer is yes, and that covers a lot of ground. Neurofeedback involves learning by the brain and if that brings order out of disorder, the brain will continue to use its new capabilities, and thus reinforce them.

Matters are different when we are dealing with degenerative conditions like Parkinson's or the dementias, or when we are working against continuing insults to the system, as may be the case in the autism spectrum. (I imagine DS would fall into this category. -A) In such cases the training needs to be continued at some level over time. Allergic susceptibilities and food intolerances make it more difficult to hold the gains. Poor digestive function will pose a problem, as does poor nutrition. A child living in a toxic environment (in either the physical or the psychological sense) will have more difficulty retaining good function.

What happens if Neurofeedback clients are taking medications?

With successful Neurofeedback / EEG Biofeedback training, the medications targeting brain function may very well no longer be needed, or they may be needed at lower dosages, as the brain takes over more of the role of regulating itself. This decrease in medications is particularly striking when the medications play a supportive role in any event, as is often the case for the more severe disorders that we are targeting with our work. It is important for clients to communicate with their prescribing physician regarding Neurofeedback / EEG Biofeedback and medications.

Is home-training a possibility with Neurofeedback / EEG Biofeedback?

Many of the conditions we address with Neurofeedback involve long-term training, as the brain's capacity to function is gradually enhanced. For some children, Neurofeedback / EEG Biofeedback may remain a useful challenge over their life span. To make this economically viable, remote training is an available option for parents. Remote training refers to home training under the (remote) supervision of a clinician. After parents have had their child trained with a clinician for at least twenty sessions, they may transition to remote training and continue on that basis, consulting with the clinician regularly to monitor progress and determine changes in protocol. Then training can be done frequently and consistently, on an affordable basis.

Source: http://www.eeginfo.com/what-is-neurofeedback.htm

Down Syndrome & the Use of Neurofeedback Application for Treatment
Christine Cadena, Yahoo! Contributor Network
Nov 23, 2007
Excerpt:
In some children with Down syndrome, especially those with co morbid ADHD, the use of neurofeedback has been shown to be quite effective at improving complications associated with intellectual and cognitive function. With the use of neurofeedback, children with Down syndrome often experience improvement in memory, attention, behavior and may even experience improvement in gait and balance.

If you are the parent of a child who suffers from Down syndrome, it is important to ask your pediatrician about the appropriate referral for testing into ADHD. Once confirmed with ADHD, your child may require additional rehabilitation and therapy using neurofeedback. For children with co-morbidity for Down syndrome and ADHD, neurofeedback has been shown to improve symptoms but often requires as many as 40 sessions before improvement is realized. With diligence, many Down syndrome children, after 40 or more neurofeedback sessions are capable of performing simple mathematical equations and can achieve some level of reading. They may also be able to write their names in a legible manner.

In addition to cognitive and intellectual function, DS children who participate in a series of neurofeedback sessions also find they are more agile, mobile and may even develop the ability to run and skip....

Neurofeedback is becoming an important part of treatment for individuals with disabilities. In children with Down syndrome, neurofeedback provides the key opportunity to improve not only physical ability but, more importantly, improve cognitive and intellectual function. With, at least, 40 sessions, you may soon realize your Down syndrome child has improved significantly enough to participate in a greater spectrum of daily living activities, including becoming more involved in school and even occupational events. Ask your child's pediatrician about the use of neurofeedback to improve quality of life when Down syndrome is a health complication.
(She listed no sources, but I have the study below that supports some of her statements)

From Jane, Lydia's mom:
Neurofeedback is retraining the brain through muscle memory to work the way it "should". There is a great book called A Symphony in the Brain by Jim Robbins that is an easy read and extremely informative. The science has been around for a LONG time... I never knew that Lydia was having "brain spikes" or mini seizures that were undetected externally. What I did know is that her 1st grade teacher was convinced I was insane because he said she didn't know sight words that she had known for 3 years. He'd give her sight words that were utterly ridiculous in my mind and when I'd talk to him, he'd say she would get stuck on them. When I stopped to think about it, she did get "stuck" when reading sometimes. I KNEW it wasn't the word she was stuck on, it was a focus issue. So I'd do my mom thing and get her moving again. What was happening is that her brain was having "spikes"... the current, per say, would sky rocket for a time and all was stalled. Through neurofeedback we've GREATly reduced the spikes and also created much better coherence between the parts of the brain. Speech is really complicated and requires information to travel through many parts of the brain. We found neurofeedback to be very helpful.

Surmeli, T., & Ertem, A. (2007). EEG neurofeedback treatment of patients with Down Syndrome. Journal of Neurotherapy, 11(1), 63-68.

Clin EEG Neurosci. 2010 Jan;41(1):32-41.

Post WISC-R and TOVA improvement with QEEG guided neurofeedback training in mentally retarded: a clinical case series of behavioral problems.

Surmeli T, Ertem A.

Source

Living Mental Healthy Center for Research and Education, Istanbul, Turkey. neuropsychiatry@yahoo.com

Abstract

According to the DSM-IV, Mental Retardation is significantly sub-average general intellectual functioning accompanied by significant limitations in adaptive functioning in at least two of the following skill areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health and safety. In pilot work, we have seen positive clinical effects of Neurofeedback (NF) applied to children with Trisomy 21 (Down Syndrome) and other forms of mental retardation.

Given that many clinicians use NF in Attention Deficit Hyperactivity Disorder and Generalized Learning Disability cases, we studied the outcomes of a clinical case series using Quantitative EEG (QEEG) guided NF in the treatment of mental retardation. All 23 subjects received NF training. The QEEG data for most subjects had increased theta, alpha, and coherence abnormalities. A few showed increased delta over the cortex. Some of the subjects were very poor in reading and some had illegible handwriting, and most subjects had academic failures, impulsive behavior, and very poor attention, concentration, memory problems, and social skills. This case series shows the impact of QEEG-guided NF training on these clients' clinical outcomes. Fourteen out of 23 subjects formerly took medications without any improvement. Twenty-three subjects ranging from 7-16 years old attending private learning centers were previously diagnosed with mental retardation (severity of degree: from moderate to mild) at various university hospitals. Evaluation measures included QEEG analysis, WISC-R (Wechsler Intelligence Scale for Children-Revised) IQ test, TOVA (Test of Variables of Attention) test, and DPC-P (Developmental Behaviour Checklist) were filled out by the parents.

NF trainings were performed by Lexicor Biolex software. NX-Link was the commercial software reference database used to target the treatment protocols, along with the clinical judgment of the first author. QEEG signals were sampled at 128 samples per second per channel and electrodes were placed according to the International 10-20 system. Between 80 and 160 NF training sessions were completed, depending on the case. None of the subjects received any special education during NF treatment. Two subjects with the etiology of epilepsy were taking medication, and the other 21 subjects were medication-free at the baseline. Twenty-two out of 23 patients who received NF training showed clinical improvement according to the DPC-P with QEEG reports. Nineteen out of 23 patients showed significant improvement on the WISC-R, and the TOVA. For the WISC-R test, 2 showed decline on total IQ due to the decline on some of the subtests, 2 showed no improvement on total IQ although improvement was seen on some of the subtests, however even these cases showed improvement on QEEG and DPC-P. This study provides the first evidence for positive effects of NF treatment in mental retardation. The results of this study encourage further research.

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