More information on neurofeedback

[Karen Nichols]

Hi,
I am new here and my son is 6, has been diagnosed with Doose syndrome and has been having seizures for 18 months. We have tried many ( 10, I think) meds and none have helped, some have surely worsened things.

We are currently trying neurofeedback ( 10 sessions so far) and I am trying to learn as much as I can from others here who have tried this. I wonder how often you went ( 2x/week? more? less?) for how many weeks, etc.

We have already noticed a seizure reduction ( but we also have a natural up and down rollercoaster, so it's a bit early to attribute it to the NF yet) and the NF doctor says his "slow" brain waves are decreasing significantly....

I am still learning the lingo and how this all works. I want to make sure I know what to watch out for, etc. We are currently travelling 3 hours each way to do these treatments ( Montana) and we are OK with that, but it is a lot of time away from school, work, etc. There is a psychotherapist in our town who also does NF ( mostly for ADHD, behavioral things, etc.) but she does not have experience with seizure disorders. How important is the training/background of the doctor/practitioner?

Thanks for any feedback!

karen

[RobinN]

Hi Karen,

Rebecca did neurofeedback for about a year. She went twice a week, except for during Spring Break we went multiple days, and she had double training each day. So between 4-6 sessions that week. I can't remember exactly.

Give yourself a pat on the back for walking this unchartered path.
I don't think I would have done it without knowing that we were going to "The Best" group. The Othmers are some of the first pioneers in the industry. They went into the business because they had a son with a seizure disorder. He died while having a seizure at college. I knew that they would take extra care with my daughter, because of their history.

However, after working with Sue Othmer for the 40 sessions, she trained me on how to do the therapy at home. I had online access to her, and it was very easy to do. Perhaps since you know the training that is working with your son, perhaps you can keep contact with the NF doctor move to the closer practitioner, and the two can discuss any concerns that arise. If your psychotherapist is seeing positive results with her other patients then I would think she would be able to help you as well. It isn't surgery.
Your son is certainly old enough to explain any changes in how he is feeling, sleeping, focusing etc.

good luck

[Bernard]

When my wife used neurofeedback, she started out 3x week, then over time tapered back to 2x week, 1x week, 1x every 2 weeks, etc.

6 hours of driving every day? wow. My hat's off to you for the dedication. We drove 1 hour each way for my wife's appointments.

If the local psychotherapist is able to administer training protocols for ADHD/etc. she should be able to handle a protocol for epilepsy. I would be very surprised if the NF doc you are seeing now wouldn't be amenable to sharing notes with the local doc to ensure your son can continue to make progress using whatever protocol they are following.

See also this advice for selecting a NFB practitioner.

[Karen Nichols]

Thank you both so much for your replies. Robin, I am in the middle of reading your blog and I thank you for sharing your journey with us. Yes, this is uncharted territory for us....but we are having some initially good results and pray these last for us.

I am so sorry to read about the couple losing their son in college; I will have to read more about them.

Robin, I am also doing a good bit of work looking at nutritional issues and am working with a "holistic" neurologist in NYC ( over the phone and email). Her name is Maya Shetreat-Klein and her website is brainmending.com.
My son also tested in the very high range for intestinal yeast and has a variety of allergies. We are also on this path of testing foods, supplements, etc. so I am very interested to read about your similar journey. I really do think there are definite links between my son's food/ environmental allergies, leaky gut, yeast overgrowth, etc. and his seizures. Of course, not many doctors see things that way....

I so appreciate all you share with others on your daughter's journey. She is in college now? How is that going?How often does she have seizures now?

Thank you again!
Karen

[lindinig]

My son currently goes twice a week, for 4-5 weeks, then he gets a week off. His week off is not intentional, it was mainly due to either our vacation or their vacation. He has had 20 sessions so far. Tomorrow, marks 13 weeks since his last seizure. This is the most he's been between seizures since being diagnosed almost 2 years ago. He is on a therapeutic dose of depakote ER also, and I have no plans to reduce it until he's been seizure-free for at least 1 year.

He had an enormous amount of delta waves, which are the waves your brain generates when you are in a deep sleep. At his last review, the delta waves are diminishing, so we're seeing progress. He sleeps a lot better, no nightmares. He was having nightmares every night since he was 2. We didn't know how to stop them! He was riddled with anxiety, which I think is partly to blame for his seizures. I have noticed a decrease in his impulsivity, anger, and just general pickiness. I think we have a long way to go, but I feel we're on the right track.

I'll probably have him go twice a week until he's done mainly because I have to travel 2 hours each way just to get him there, and I just want him to be done sooner.

The more I read about neurofeedback, the more I wouldn't trust myself to do it at home. I suppose, if you get a practicioner who doesn't know what they are doing (like myself), you could end up rewarding the wrong frequency, and encouraging more brain disregulation. Just my

[RobinN]

Karen - stay with your instincts. You will be rewarded if you do.
Thank you for your kind words. She has had a great first two weeks at college. Takes the bus, and is becoming quite independent. She is five months seizure free.

[maddiesmom]

I am so interested in this thread.

My daughter 6, also has yeast/leaky gut issues like your son, Karen. How did you approach the brain mending doctor? I would like to contact her. We are in Washington D.C. and we do work with a naturopath on supplements but would love to loop in a holistic neurologist as well.

[maddiesmom]

Also, I'm looking for a neurofeedback center close to washington that has experience working with seizures. Can anyone recommend a center that could refer me to one? Thanks

[Nakamova]

You could start here:

http://www.eegspectrum.com/Providers/

[RobinN]

Probiotics have been really helpful in my home, with allergies and yeast/fungal overgrowth. It has also been improving my son's autoimmune disorder (vitiligo).

It's a good thing.