New Here - questions about neurofeedback

[MidwestMom]

Hi. I am new here. I am so glad that I found this wonderful site!

I have a 12 year old son who has had epilepsy for nearly 6 years. He is on Depakote (the only drug we have tried) and has had some success with it (a few seizures per day every year, increasing last 1 1/2 years). His blood levels of Depakote were really high (140, the doctor said it was okay, I didn't know any better) and we have not increased his dose for about 3 1/2 years (I do not want to), which has him down to normal levels (88 trough 13 hours after taking medication). He is growing and that is helping to lower the levels without changing medications. This fall, we found out (at my insistence and got new doctor) that the Depakote has caused him to have Vitamin D deficiency (which we've raised to the normal range in 3 months) and severe osteoporosis, plus some cognitive delay, I believe.

We have been searching alternate therapies and 1 1/2 years ago we tried eeg neurofeedback because I heard it was so good for epilepsy. We went to a lady in a town about 3 hours away to do the initial exam (she was really knowledgeable, about 20 years experience, but we were referred to the local person in our city). The only person in the city I live in used a machine by Margaret Ayers that my son was hooked up to and just sat there and relaxed, didn't do anything to train his brain (like with video games, which made me wonder, wasn't the other type better?). Against my better judgment, I was not allowed in the room during treatment because it could distract my son, so I wasn't really sure how he was doing. I allowed this because I wanted so much to help him.

He went once per week for 1 1/2 years. The first 6 months went pretty well, then I put it together that his mood fluctuated after neurofeedback treatment, from really happy, joyful to learning school easier, to really upset, emotional, crabby. He was very very emotional (people noticed it). Right now he is very stable emotionally (we haven't done neurofeedback for 3 months).

Also the neurofeedback had an effect on his eating habits as well (he's always been a very finicky eater), fluctuating from him eating everything in site (literally after the session we'd notice this) until another session, where he'd be very picky and not eating very much, nothing sounds very good to him (that's where we are at right now, he was at this level when we ended).

Althought I didn't realize this at first, but during this time, my son's seizures increased (I thought so but wasn't sure--usually shortly after a neurofeedback session), I charted them out and during this time they were a couple per day every month or so (sometimes a week apart). He had 4-5 times more seizures in the 18 months of neurofeedback then he did total in the 4 years previous. I found out that most of the seizures occurred an hour after feedback or the next morning (with my son having the telltale headache and stomachache the afternoon after feedback (they took place at 1 pm always), culminating into a few seizures (sometimes 5) the next morning and day, then he'd be allright. Sometimes the clinician who did the neurofeedback on my son said that he did well (meaning that relaxed and sat still), and sometimes she would come out with the tone that my son was misbehaving and that he just wouldn't sit still, although he knew better--she'd say.

Unknown to me, apparently she'd leave him in the room alone for awhile and go into another office nearby to make phone calls, etc. (which I didn't know until after). I think he had seizures sometimes while on being hooked up to the neurofeedback machine (he'd tell me how he felt).

Since the clinician never really gave me a report, except he did well that day or he wouldn't sit still. After questioning my son (always after every appointment--he'd tell me how he felt), I found out that sometimes it made him relax and sometimes he felt really agitated. The last time we went he was so agitated from it, he felt so bad, and that feeling lasted until he had the 5 seizures the next day (could have had more, but I noticed these when he awoke).

After charting the seizures out I called the initial person who examined my son and asked her if there was any relationship to his increased seizures and the neurofeedback, and she said it is suppose to relax your brain, give more serotonin, not make a person agitated. She thought that the 70 appointments we went to should have been enough and suggested we take a break for awhile.

I felt really sad that this may have made him feel really stressed and agitated--the opposite of what I thought it would do. He seems okay right now, really sweet and calm, so I know he is okay. Since stopping the neurofeedback, he had 3 seizures in one day about a month afterward (2 months ago), and no more.

We went to a new neurologist, a new physician, and want to take him to a comprehensive epilepsy center (either Denver or Minnesota, don't know which one is best yet), and just had his 2nd eeg ever (short one) done in the hospital yesterday, but haven't heard the results yet. We want to perhaps put him on the Modified Atkins Diet and get him off his Depakote some day (new doctor said MAD was okay, not Keto, and said we could change his medication to Lamictal, but I said not just yet). I think he has a lot of health issues to overcome due to the depakote and epilepsy and we are working on them.

My really big questions are: has anyone had any results from eeg neurofeedback like my son had? I wonder if the increased seizures were the result of neurofeedback? Has anyone every felt really agitated and non-relaxed during and after neurofeedback, culminating into seizures? Would the feedback where you play computer games be better (that's what we wanted)? I felt sad stopping the neurofeedback because I read it was so good for him.

I am sorry the story is so long. I am really sad that my son had to go through agitation...if it wasn't necessary.

Thank you everyone for any insight you can give me and your experience with eeg neurofeedback. I am sorry this was so long.

 

[Bernard]

Hi MidwestMom, welcome to the forum. :hello:

Sounds like the neurofeedback practitioner you used was not very competent. The patient should not be left unattended and the feedback protocol needs to be tailored/adjusted to match the results that are being achieved.

My wife has used EEG neurofeedback and had excellent results.

After delivering our children, she started having seizures again. She tried OchsLabs LENS system for a short while and it appears to have been working, but the clinician trained on the system left before she could complete the program.

She is now using a BrainMaster system and I'm hopeful that it is "clicking" because she hasn't had any seizure activity in roughly 3 months (knock on wood).

Another member here, Mike, used OchsLabs LENS system with success.

Another member, Rebecca, is currently trying EEG neurofeedback at the EEG Institute. Robin has done a great job chronicling the process and their experience - well worth a read.

 

[Georgiagirl88]

Hi Midwest Mom,

I wanted to say Hi and welcome! I can't offer any insight into neurofeedback since I am new to alot of this info. but people here have been very helpful and have good suggestions and info. It has been great for me! I hope all is well with your son and that you find some answers. As a Mom myself..I am sure it must be very hard. Take care and best of luck!

Michelle : )

 

[RobinN]

Welcome Midwest Mom,
We just returned home from my daughters 9th and 10th session. Yes, two in one day. Kind of like going to a gym to work out during spring break.

I can't say enough good things about neurofeedback, and I agree with Bernard that you have a very incompetent clinician. During the first session that Rebecca had, I was in the room and watched how the session was run. I am sure I could sit in again if I really wanted to. That would throw up a red flag if I was shut out of a therapy that my child was undergoing.

You might contact a reputable institute and ask your questions. I am sure someone at the EEG Institute would help you to understand the problems that occurred with your clinic.

 

[brain]

:hello: MW Mom!

Glad to have you here at CWE! And I can see
that others have responded to you and hopefully
by those links provided to you can be of great
assistance and to get you started into the right
direction! Feel free to browse around and make
yourself a home here!

 

[bedolaga]

Hi!

There are many reasons for these adverse effects from NFB sessions for your son.

As one of them - is not enough competence of NFB practitioner.

As far as I can understand from your words, your son was instructed to sit relaxed and still. So, they practiced Dr. Sterman's SMR protocol, i.e., in general, theta EEG waves (4-7Hz) downtrain and SMR waves (12-15 Hz) uptrain.

But! May be, epileptigenic waves of your son’s brain are not within standard theta 4-7 Hz bin, but maybe lower, say, 2-6 Hz or even 1-5 Hz, so, as Bernard said, it should be tailored for your son individually.

If not, you son was training not only “useful” SMR waves, but harmful low frequency epileptigenic waves. That can be explanation.

onder:

 

[BuckeyeFan]

:cheers:

I will let the technical feedback to our more experienced members. However, I would still like to welcome you to CWE. It is great to meet another caring parent. There are so many of you here.

Relax and read all you can find here. I'll bring you a cup of coffee/cocoa.

:cheers:

 

[MidwestMom]

Thank you everyone

Hi everyone. Thank you for your responses. It saddens me to think that the person who was running the neurofeedback session was incompetent, but I believe it is so.

My son's initial evaluation was definitely done by a competent clinician with 20 years of experience (I sat in on this). She was 2 1/2 hours away (although in hindsight we should have driven there anyway). She set up the protocol for my son to use with the person we went to. I don't know if, after all those sessions, it was ever changed. I will find out. I was able to sit in on the first session with the person we went to all the time. She said I'd distract him by being there, that's why I couldn't go in.

At first I wondered why she didn't use the video games to move the ball around, so my son could learn something, and I wondered why he could only go once per week. She said he couldn't go often, that a couple times per week wasn't good for his brain. She said the system she used was in real time and the brain trained automatically....

Also I went to this person in the first place because I called about going in another town (45 min away) and they thought I was silly to drive all the way to them when there was someone in my town (5 minutes away)--they weren't affiliated at all. I should have been able to check out both places and decide where to take my son.

Also I was also keeping record of my sons moods and I would tell her about them. Sometimes she'd say it's the weather pattern (changes a lot in midwest), or some emotional thing was going on with my son. Never because of the actual treatment.

Do you think any harmful training will stay in my son's brain permanently? Could this have harmed him in any way? He got a new eeg this week and still shows temporal lobes spikes and slowing....we have to have an MRI soon because of this. On the good side, he hasn't had any seizures for 2 months. He ended on a bad note, doesn't want to eat, doesn't really like to do his school (sometimes he was the model student), really doesn't want to do what you tell him, just ignores it as though it wasn't said. On the positive side, he's really very stable emotionally (he had those ups and downs) and learning easier than before, reading especially is hard for him though.

Should I go to another person and continue the neurofeedback?

So many questions. I feel like crying if I put him though anything that could have caused him harm.

Thank you for listening and I appreciate all of your answers and support.

 

[Bernard]

Should I go to another person and continue the neurofeedback?

I would. Although "continue" might not be the correct word. I'd start over with a new QEEG as the basis for where your son is at right now.

If you do choose a new practitioner, you might ask them where they trained, what system (machine/software/database) they are using, what their experience is with epilepsy patients and the treatment protocol they use, if they are BCIA certified or members of AAPB and/or ISNR. You could also check the EEG Institute's directory of EEG neurofeedback providers or EEG Spectrum directory.

 

[RobinN]

I agree with Bernard. If you believe in the therapy, I think it would benefit your son to begin again, with the best possible clinic within your area.

My daughters therapy is adjusted to how her sleep pattern is, and how her moods have been. We are to keep record of anything out of the ordinary. In addition, it was recommended that we do a minimum of 2 a week. More would be better. I was told that once a week was not beneficial. They have even told me that some people come from quite a distance for a week, and are able to do two sessions a day.

I am glad to hear that he is doing better emotionally. Please don't beat yourself up. You obviously are doing the best you can. You trusted someone and now you have learned more than most, about this therapy.