Neurofeedback - Rebecca's Story

[RobinN]

Hopefully one day this will be put into the forum Hall of Fame, but for now I will just begin the story of Rebecca's experience with Neurofeedback.

We are going to the EEG Institute in Woodland Hills, CA. It is about an hour away from our house. Her first visit was yesterday, March 13, 2008. We arrived, and of course there was the paperwork to fill out. Then we had the pleasure to meet Sue Othmer, and were taken to her office. There Rebecca was asked quite an extensive number of questions about her background. When Rebecca couldn't answer, I filled in the blanks. That took about an hour. I personally learned new information about how Rebecca's history plays a part in the world of seizures.

Rebecca was then asked to do an evaluation test. I did not watch this portion. However, there was a glitch. She seemed to do fine on the pre-test but when the answers were given, Sue said it appeared as if Rebecca had answered backwards to each of the responses. This had to do with a visual pattern and Rebecca said she answered as she was asked. So perhaps there was a malfunction with the "software". This test needs to be given again as the Institute give the test again at the end of all the sessions by comparing the two tests.

The third part of our 2.5 hr visit was a session with the EEG equipment. I was allowed to sit in on this part of the process. Rebecca was hooked up with the wires attached to her head, and on the large screen in front of her she was asked what type of pictures she would enjoy looking at. She chose kids. So to begin with there were blue dots on the screen in even rows. A ball came on the screen, and Rebecca was instructed that when her brain waves were within the range that was expected, the ball would move along the dots and reveal a square of the picture at a time. When all was going really well the ball would move quickly and appear to have a speed trail (not sure how to express that). It just looked faster. If the brain waves were not within range, the ball stopped completely.

Sue would ask Rebecca how she felt, and we had answers such as great, tired, this part of my head feels funny, etc. It was hard to tell from watching if the tiredness came from being tired, bored, being relaxed, etc. I am sure it will be more difficult at the end of the day when we come for future appts. Hopefully she can rest in the car on the way, and arrive a bit refreshed.

I learned and watched on the computer screen that Sue was monitoring, that she was working at very low frequencies. She explained that patients with seizures have extremely sensitive nervous systems.
I am sure I will understand the process more as we come for more sessions. It is a lot to take in the first day.

We then went back into Sue's office and talked about what we could expect at future appointments. How this could not only be targeted to balance out the seizure threshold, but could also target the speech and language area, as well as balance and focus for the athlete.

Rebecca seemed unimpressed with the appointment. I am not sure what she expected. We plan on doing two sessions a week, and bump up to more during spring break. It was suggested to do two in one day occasionally. So we are looking at doing one after school, and one on Saturday. We did not get one scheduled for this Saturday. Our 2nd appt is next Wednesday.

I was asked to watch and journal about changes/differences I see in sleep pattern, daily efforts, good/bad, easy/difficult... I hope to fill you all in as we move forward.

 

[speber]

Very informative Robin!....

...I am a subscriber to this thread!

 

[p22denise]

Hi Robin...how does that neurofeedback work? And does it make the seizures go away for good? How does insurance work? Is it covered? So many questions so little time...

 

[Bernard]

Hopefully one day this will be put into the forum Hall of Fame, but for now I will just begin the story of Rebecca's experience with Neurofeedback.

Awesome! :clap:

... but when the answers were given, Sue said it appeared as if Rebecca had answered backwards to each of the responses.

onder: There's a joke in there, but I think I'll leave it alone... fft:

... A ball came on the screen, and Rebecca was instructed that when her brain waves were within the range that was wanted the ball would move along the dots and reveal a square of the picture at a time.

Excellent. The magic of neurofeedback is that Rebecca doesn't have to know which parts of her brain are not within range and which are. She doesn't have to think about making some parts more alert or others more calm. She just has to experiment with concentration/focus to move the ball. When she has some success and figures out how to do it, the protocol (ranges) can be adjusted gradually towards the normalized range.

Sue would ask Rebecca how she felt, and we had answers such as great, tired, this part of my head feels funny, etc.

Neurofeedback is like exercise for the brain. When you exercise, you get tired. If you are excessively tired after a session, you may have overdone it - just like you can do with muscles. It will get better as she continues the sessions though just as muscles grow and adapt to a routine. [I'm not saying the brain is a muscle in a strict sense - it's just an analogy]

... Hopefully she can rest in the car on the way, and arrive a bit refreshed.

She can also try some simple exercises (jumping jacks, running in place, etc.) before entering the building to get the blood oxygenated.

Rebecca seemed unimpressed with the appointment.

She is a teenager... :roflmao:

She will be impressed when it all starts clicking and her seizures stop and her social/school life returns to "normal" IMO. :mrt:

 

[RobinN]

I was researching something else and I found this interesting:

Follow-Up Study of Learning-Disabled Children Treated With Neurofeedback or Placebo

J. Becerra, T. Fernández, T. Harmony, M. I. Caballero, F. García, A. Fernández-Bouzas, E. Santiago-Rodríguez and R. A. Prado-Alcalá

ABSTRACT

This report is a 2-year follow-up to a previous study describing positive behavioral changes and a spurt of EEG maturation with theta/alpha neurofeedback (NFB) training in a group of Learning Disabled (LD) children. In a control paired group, treated with placebo, behavioral changes were not observed and the smaller maturational EEG changes observed were easily explained by increased age.

Two years later, the EEG maturational lag in Control Group children increased, reaching abnormally high theta Relative Power values; the absence of positive behavioral changes continued and the neurological diagnosis remained LD. In contrast, after 2 years EEG maturation did continue in children who belonged to the Experimental Group with previous neurofeedback training; this was accompanied by positive behavioral changes, which were reflected in remission of LD symptoms.

http://www.ecnsweb.com/journal/jul06.html#7

 

[RobinN]

Hi Denise - I think as I go more often and write about our experiences you will get an idea of how it works. Bernard also has quite a lot of information on the subject that you can link to from the bottom of his posts.

As for insurance, I have yet to get approval. The way I looked at it is, if my car needed a new engine I would not hesitate to say sure put a new one in, considering the cost but deciding it was necessary. One has to have faith in both situations.

I plan on showing the insurance company how much I have saved them. The other night just the ambulance ride to the ER was $1000 and that does not include any of the care once at the ER. I plan on showing them my calendar and the frequent calls at her school, etc and prove my case. I will include the improvements in school grades, and the Medical panel that just gave the treatment a Grade A. Of course this is not paid for upfront, and that can be of concern to some, especially since it is a bit off traditional mainstream medical practices. However, mainstream has not been helping my daughter much. I have received some real bizarre ideas from traditional doctors on my insurance plan. So yes, you could say I am taking a risk, but I was when I asked her to take those little pink pills too. This one has no negative side effects. I have only read of positive ones. That is why I made the leap of faith.

Hopefully, Rebecca's treatment can be a testament to others not only in seizure control, but in learning difficulties, processing speech and language, as well as athletic performance. I have lots to monitor, but it will be exciting to watch for the positive changes.

Thanks all for your support in going forward.

 

[p22denise]

Please keep us informed and know that you and Rebecca are in my prayers. Thanks for all your help Robin

 

[pmcdonald8]

Robin, I am new to this forum. I find this very interesting. My son has learning disabilities and seizures in his early years initially stopping around 6 years old. So we dealt with the learning and behavioral issues over the past 10 years. Many Many Therapies and medications. But the one that I have always felt helped the most was Bellefonds... It was developed by French Neurologist and we happened upon it at a school for ADD/ADHD kids. It was suppose to be a 18 month program helping primarily with Audio Processing. HOWEVER; I found that it really helped him organize his brain for all daily functioning. So we have continued it for 8 years. I have to say however, I have not been as stringent with the process of the therapy, just allowing him to do it by himself (It entails listening to words or phrases throungh headphones and writing horizontally across what you hear - they break up the phrases having them coming partially in one ear and the other part in the other, maybe background noise etc.) The bottom line is that it is suppose to help the right and left side of the brain communicate together. Our personal experience is that he enjoys doing it, it is only 30 mins. per day (although of late he has only done maybe 10-15 min. per day), his fine motor improved dramatically, gross motor much better, attending to school work - you know the stuff they don't like - improved, overall happiness and cooperative....SOUNDS to good to be true as I read what I am writing ...is it all atributed the this therapy or many other factors - don't know, but he was on NO meds for 8 years for anything, granted we homeschooled him with tutors - one on one is always easier to learn. But times were pretty good all issues considered.

Here is the interesting thing...may or may not be relevant...I started letting him do it on his own without me making sure he was doing for the full amount of time or on the right level of lesson etc. sometime in 2005...

He had his first Grand Mal in 8 years (no meds over those 8 years) in November 2006... and we are rapidly progressing in frequency from one in 9 months to 1 every 20+ days to 4 in 4 hours night before last. He is now on Keppra with increasing dosages.

I just never realized that neurofeedback could control seizures and gosh I can't say I truly know what neurofeedback is and whether the Bellefonds Therapy would be considered neurofeedback....BUT as soon as I post this message I am going to do the therapy with my son...starting at the earliest lesson and progressing forward for our 30 mins. a day!

Thanks so much for your post and inspiration. I will let you know if we see any changes on this end.

Thanks.

Pam

 

[pmcdonald8]

OK, clarification ... I contacted the Bellefonds People... they said there is no research that Bellefonds could be used as an anti-seizure therapy...TO THE CONTRARY...they said that they were advised not to use the therapy unless someone had been seizure free for one year as the frequencies used in some of the tapes could induce a seizure in someone with that particular threshold.....SORRY...I got excited. Pam

 

[Bernard]

No worries Pam. Some people are photosensitive, others are not. Video game manufacturers post warnings on all games nowadays for liability mitigation. While Speber can attest to the power of sound in either regulating or inducing seizures, it's pretty rare. I have heard from other people privately about the Bellefonds therapy, but when I researched it (hoping to add it to the chart [see link in my signature]), I couldn't find anything about it's use for seizure control.

If it worked for your son, by all means keep doing it! EEG neurofeedback is different though. It is a more targeted method for training the entire brain.

 

[RobinN]

Sorry I did not get a chance to answer your post Pam. Thanks for picking up the pieces Bernard.

Interesting that you speak about sound, as this was discussed as an add-on therapy for Rebecca. I will learn more as we attend more sessions. As was the Irlen Method, dealing with colored lenses.

 

[RobinN]

Rebecca had her second session today. She mentioned to Sue that this week she had a day or two where she felt extreme mood swings. Frustrated to hyperness and silly behavior. This is the sort of thing that they want us to keep track of.

She has been in a good mood tonight.

After paying for 20 sessions today, I sure hope this works.

 

[pmcdonald8]

RobinN,

How did you find the Neurofeedback clinic. We live in Chicago and I would like to try it with Sam, but would also like to find a reputable place.

Pam

 

[RobinN]

Check out this page:

http://www.coping-with-epilepsy.com/index.php?p=resources
http://www.eegspectrum.com/Providers/US/Georgia/

The EEG institute gave us a free consult, so I could ask questions. I am also reading a book called: A Symphony in the Brain
Especially ask if they have worked with many people with seizure disorders.

I hope this will get you started

 

[RobinN]

Rebecca had her fourth session on Tuesday. We were originally scheduled for today, but Rebecca had a special dance performance for open house at her school so I called to reschedule. Tammy was so nice. She said that they were all booked but that she would put a sticky note up just in case someone cancelled. Sure enough I got a call around 1:00 and I was able to rush Rebecca over there after school. It is an hour drive, but I did it in much less time (guess it was good traffic;-)

She has been having some mood swings. Says that they are changing about every 20 min some times. She also had an emotional meltdown one day, and has no rhyme or reason for it. So Sue mentioned that they would work on a different section, to see if they could get that more into control.

I don't know if there is any connection but she has appeared to be in a cheerful disposition since. School has been better. Could be because the American Ballet Theater has been at their school working with her class. According to her it is a once in a lifetime experience. How cool is that.

Another session is coming up on Saturday.

She has only had one seizure since the 23rd of February. Her color is good, her skin has cleared up from taking the meds, her eyes are clear, she walks with a skip to her step. This is my girl.

 

[bedolaga]

2 RobinN

Glad to hear about some positive shifts from the first sessions.

It's a very rare thing for NFB to get dramatic changes right from the start.

NFB - is a process of learning. Your daughter is learning to operate her brain exactly like to skate on ice.

She is learning how to keep right balance, how to be stable on her “mindskating”.
Sure, it needs time.

As far as I know about Sue’s methodology, firstly, she trains interhemispheric C3-C4 or T3-T4 protocols and adjusts right reward frequency. This training shifts old abnormal homeostasis to ,say, more stable and normal state. This shift perturbs old functional connections and, sure, can produce some mood swings.


Best wishes and good luck!

 

[p22denise]

Robin, when you said "this is my girl" I almost started crying. You really can tell the difference when our children are off the meds and making progress. I am so glad for you and Rebecca...good luck and keep us posted!

 

[RobinN]

Yes this week has been a huge improvement in her general mood. She says it is still difficult dealing with "everything". She mentioned that she was able to stay calm and patient in situations that would normally have caused her to be irritable.

I am not saying that the changes have been due to the NF. I am working on the "whole" child, and am excited to see any positive results. My observations here are just to journal what I "see" and "feel" are noticeable changes.

She did have a different type of seizure this week though. I am not sure what the academic name for this would be, but she said she had multiple thoughts, and she felt like her brain was tipping back in space. I do have to say this was upon awakening in the car. She had fallen asleep after skating two hours, and the ride home was only about 15 min. I attempted to let her stay in the car for another 15 minutes. When she came in she mentioned this seizure. Perhaps this is a partial complex ? The multiple thoughts are like the very first seizure she had.

Bedolaga - it is great to have someone else here that has some knowledge of NFB.

p22denise - Thank you, it is great to see her happy.

Please note that I have also been trying some new vitamins. I have added selenium and adrenal cortex over the past couple of week. You can do a search of these vitamins to learn more about how they might protect the brain from seizures.

Tomorrow is another NF session...

 

[RobinN]

I have noticed some positive changes over the past 1.5 wks. Rebecca has made note of two episodes that are simple partial seizures. She has not had these since the beginning of her seizure activity (almost 2 yrs ago). Sue says it appears that her seizures are becoming less severe. (meaning not generalized)

Falling asleep has been an issue for Rebecca. I have not noticed this problem much in my observations, but she has noted it to be a problem for her. Sue is working around this issue, and also mood swings. Positive attitude seems to be holding steady.

She did say yesterday during the session that she found that she was "drifting" more.. kind of "spacey", though she didn't mention it to Sue because it wasn't a bad feeling. I will ask her to clarify it and discuss it on Sat.

We also talked about the fact that perhaps there are areas of her brain that are being "woken" up so to speak. Not sure if there is a more scientific term for this.

Good stuff... changes are a happening.

 

[RobinN]

This is Rebecca's spring break and since I know she loves doctors appointments as much as I do, I filled the week with them.

Today she did two sessions of neurofeedback. The morning one was after a skating practice and she was a bit tired. I am not sure if it was the NF that produced the tiredness or if it was an accumulation of a late night, exercise, and the long drive to the EEG Institute. Not to worry, we got in the car to find a local mall and a bite to eat and she fell asleep. I let her sleep for about 30 min and then we had some girl fun.

Back to the clinic for a second session and hit the road back home.
She seems to be in a great "place" tonight.
Rebecca's question might be one that you are asking yourself.. "Tell me again why we are doing two in one day."
It was explained to me that not unlike exercise that you do for your body, if you only did it one day a week you would hardly benefit from that. Doing it two or more times a week is better. So, being on spring break, it was explained that we can increase the sessions to twice a day, and the brain is allowed to work a little harder to balance itself. This especially is a good week to do this as Sue is going out of town for a week or two, and she will be able to have a much better feel for what Rebecca's treatment should be like and can leave better notes for the substitute clinician. We will have finished half of the sessions by tomorrow.

After the two sessions tomorrow, we then make a detour to see the neurologist at USC. This is a scheduled appt for a checkup and I am going to have to explain neurofeedback to her. Rebecca's school decided to contact her doctors to make a case for her IEP. This alerted the neurologist to the neurofeedback that we are doing. Her response was that she is curious what "kind" we are doing as "some cause seizures". HUH? I have NEVER read this. I want to see the medical study that has said this. I will print out the article that helps explain it. http://www.webmd.com/balance/features/biofeedback-for-epilepsy?page=2 I guess I have to be a good samaritan and once again "teach" a doctor as to alternatives that are available.