2 PANS kids fighting lyme and coinfections, our journey to healing

Neurofeedback therapy

We have undertaken neurofeedback twice so far. It is rather limiting due to cost but if it was covered by my insurance we would have done an more sessions. On average it cost $145 a session with a $1,600 QEEG testing fee. Luckily the testing fee was covered by our insurance, the sessions unfortunately are not. Our  insurance company argue that they are not in-network; however, there is no in-network provider with our insurance company in this area. It is truly a catch-22 and they have denied every penny. I am so jealous of those people whose insurance does cover this treatment, of which I know there are several. So consequently we have to stop every once in a while. We started in 2008 and stopped in late 2009 after about 60 sessions, then we resumed back again in September 2010 and completed another 15 or so sessions.

The QEEG is fairly straight forward, after putting on a skull cap and attaching electrodes connected to the computer, a 30 minute recording takes place. This measures brain activity similar to the way a heart monitor measures heart activity. A QEEG is a non invasive method of measuring brain waves. This information is then used to determine the functional aspects of the brain rather than structural defects, which is what a clinician might be looking for on an MRI. During the QEEG specific cognitive tasks are performed  and at the end of testing the computer generates a topograph that can enable correlation between brain waves and symptoms. We were looking at the activity in the auditory processing centers, frontal lobe activity, his delta wave activity and other diagnostically significant data.

We first went for neurofeedback after seeing a presentation at an Autism seminar. One lady explained how it helped her son’s aggression and improved his speech. We had an evaluation which determined ours son’s brain was not functioning at it’s optimal capacity in certain areas. There was barely anything happening around the area where auditory processing takes place, this was seen by a blue/black area that stayed consistent throughout the 3o minute test.

Again, around the same time we were doing multiple therapies so I cannot categorically say that this was the one thing that made his speech come alive. However, I do know that it seems to have an effect on his outbursts and aggression. If we keep up with the sessions he is much more manageable.  When we returned after our break the aggression receded much faster than it had before, it was almost as if his brain was ready and waiting for the neurofeedback.

When I was having multiple migraines and vertigo that were occurring on a monthly basis, I personally had 8 neurofeedback sessions. I have only had one vertigo episode and one migraine episode since that time. It has been three months and no problems so far. I know if they flare up again I will try more neurofeedback. The recommended stopping point is 20 sessions, but again financially I could only afford the amount I did. I would rather bank on a long-term change with neurofeedback than a life-time of pharmaceutical medications to treat his ADD and depression. Whether that is a reasonable assumption or goal only remains to be seen, but I feel sure we will be back in neurofeedback as soon as we have the financial ability.

Most people have seen Dr. Amen on PBS, I don’t know if Dr. Amen uses neurofeedback; however his website has access to SPECT images, which again while they are not the same as a QEEG, do show the sort of information that can be gotten from mapping brain patterns. I don’t have the financial ability to undertake a SPECT scan currently but would love to hear other people’s experiences with this method of diagnosis and subsequent results and treatments.

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