Neurofeedback - Rebecca's Story

[Ruth]

Robin and Bernard,

That is great for both of you. Sometimes, I get to go hiking. I love it!! Doing something different and positive is great for all of us. I am glad you both shared with me, thank you.

[RobinN]

I am so excited. We had an appointment with a MD- Nutritionist today. He talked my language, and he gave me a lot of new ideas, as well as gave me a nod on the directions that I have taken so far. We will see him in six weeks. We are going to get a new panel of blood tests that will show food sensitivities (have to pay out of pocket for that one) and also one to see if she is absorbing vitamins and minerals.

So excited, and we are drinking a strawberry, blueberry, sheep milk vanilla yogurt, mango/orange juice smoothie. Home made and a great way to celebrate good nutritional advice. I will share what I learn.

[Nakamova]

That's great! And you just reminded me that I have a probiotic smoothie in my fridge (not homemade, Trader Joe's, but it will have to do...)

[BuckeyeFan]

also one to see if she is absorbing vitamins and minerals.

That should be an interesting and possibly revealing test. Most MDs never worry about how the body uses meds or supplements, they just prescribe them.

[Rae1889]

and also one to see if she is absorbing vitamins and minerals.

Yeah, I think i may have that problem

So excited, and we are drinking a strawberry, blueberry, sheep milk vanilla yogurt, mango/orange juice smoothie. Home made and a great way to celebrate good nutritional advice. I will share what I learn.

I think you need to share more of those smoothie recipes too!

[Ruth]

Hi Robin, sounds like things are going great for you and Rebecca. How long has it been since Rebecca has had a seizure? I hope a long time.

[RobinN]

@Nakamova - what the doctor told me yesterday is that it has to be something that you consistently add. He said you can not just do it once a week. I didn't ask,but I would presume that you should give it a good go for three months to six months. We also talked about how much, and he was not familiar with the brand, but it does matter how the quantity of bacteria in the supplement. He offered to write Rebecca a prescription and I might go that route because the variety that I have been buying (Natren) is about $50 for a months supply.

I was reading the other day how there is evidence that there is anecdotal evidence that probiotics is improving inflammation and can heal more than we thought possible. He also suggested using kefir, which is also a topic on other neurologist sites.

@Dale - I agree. It has been my experience that they do not even introduce this idea, because it is not necessarily covered by many insurance plans.

@Rae - There really are an incredible number of recipes online. He suggested fresh / frozen berries, yogurt, and we discussed green juices.

@Ruth - It has been only a 1.5 months this time. She was knocked back last month during her cycle. However, as I learn more about how blood sugar / insulin / liver, can cause an imbalance in hormones, I hope to increase the time period. It sure beats 6X / month while on medication. All the good days are great, so we are encouraged.
Thanks for your good wishes.

[Rae1889]

Way to go Mum!
You are one crazy lady! and i mean that it the best and most affecionate possible way. Rebecca has an amazing and well educated role model, and she can take the information you teach her, and pass it on to her children as well. You are phenomenal.

Have any other family members (including yourself) gone on the regime for a while too? do you cook supper all at once for everyone, or just portion of Rebeccas?

[themanymens]

I have found that not only do we need to eliminate but also repopulate the gut flora with organic bone broth, kefir and fermented foods. Fermented foods are made with natural bacteria found in the air (not vinegar).

I think Dr. Natasha McBride's Gut-and Psychology-Syndrome at Weston A. Price
explains it all so well. Her main focus may be autism, however 1 in four of those with autism will either have seizures as children or teenagers. If you do any research into untreated celiac disease you find so many of the epidemics that are plaguing us all. I believe we are all actually becoming celiac which is normally an inherited disease.

I'm doubting at this point as to whether any human being should eat grains. Any thoughts on that? Has anyone read "Going Against the Grain", by Melissa Diane Smith?

To anyone new to the diet, we are addicted to the foods we are allergic to. This takes time to figure out and to implement. And as always, I wish you all the best.

[RobinN]

So sorry themanymens.... I have not been back to this thread (thank goodness I haven't needed to) in a while. Rebecca's threshold is inching higher each month. Feeling very positive these days about her progress, and overall body health.

I have been reading a bit about bone broth, and kefir / fermented foods. I have used some coconut kefir in smoothies that I have made. I am also going on research that grains should be kept to a minimum. I continue to read more about this, and it does tend to make sense.

This too I have read as well, that we are addicted to the foods we are allergic to. Sugar is a problem for Rebecca. She is working hard to battle it. She also is noticing how her body feels after taking in foods that are not nourishing.

[Bernard]

That's great news. Best wishes Rebecca!

[kayochan]

Hello Robin!

First of all, thank you very much for sharing your experience. I am one the readers who have been encouraged and helped by your numerous forum and blog entries

We are in the Orange County CA and am contemplating neurofeedback for our son. I know you went to the Woodland Hills neurofeedback center and wanted to know if you have any recommendations for a center in OC.

Also, how long do you recommend that neurofeedback be done for? I understand that 2-3 times a week is the recommended but for how many months? and how many booster sessions a year do you recommend? I recently got in touch with Dr. Sterman and he definitely recommends some type of follow up/booster sessions once in a while even for people who are in remission but I was not able to get further information (I am assuming due to his busy schedule.)

Thanks again!
Kayo

[RobinN]

Hello Kayo -
I am glad that our story has been helpful to you.
Since we only went to the EEG Institute, I don't know any others to recommend. However, I would suggest that you contact the Othmer group and ask for their recommendations, since they do train many in the area. You most likely will be given a list, and then you will have to perhaps set up some consults to find one that you are comfortable with.

You might also talk to Dr. Karima Hirani in Culver City. She uses the therapy in her practice.

For recommendations about treatment, the more often the better. There is a limit to the initial number of sessions though. Ours session ended at 40 treatments. I think you will have to see how that works out before making plans for follow ups. I certainly wouldn't pay for it in advance.

Also make note that if the practitioner that you choose is affiliated with a sponsored advertiser here at CWE, you will receive a % discount on your bill. Keep that in mind. The $ amount was significant for us.

How old is your son?

[kayochan]

Hi Robin!

Thanks for you reply Our son is currently 7 years old and soon to be 8 in a few months. And thank you for your recommendation re: finding a practitioner. We found one fairly near us in Torrance (Dr. Schummer) who deals primarily with ADD but has worked with Sterman and does work with some seizure patients. I havn't met him and don't know of anyone else who have used him but hoping that he may be an option if I cannot find someone closer to home.


By the way, you mentioned that there is a limit to the initial number of sessions, I didn't understand that. Do you mean that it is not recommended to do more, or that it is what a practitioner usually recommends as a limit?

Also, I understand from reading your past comments that at some point in your initial 40 sessions, you switched to a home treatment (rental option). Did you end up staying at the same protocol during that time or did you change the protocol after phone consults with your practitioner? I am asking this because I am trying to understand the different methods that different practitioners use and the different protocols.

Thank you,
Sunny

[RobinN]

Kayochan - No not a limit to the initial number of sessions, but we did pay for a certain # up front. After that it was up to us whether or not we continued by paying for another group of sessions or per visit. There was a reduction in price if we paid for the group.

We worked with the practitioner at the EEG Institute. We did use the same protocol, except for once when Rebecca was having a few more seizures. She wanted me to change back to a previous one that worked. Phone consults were not as convenient as email contact for us. I am not sure all offices are set up to do home treatment. I was nervous, but time was spent with me to feel comfortable with what I would be doing.

[Shelley]

Didn't know where to post this. I do remember that Rebecca had a seizure after drinking a soda, so I thought to post this here first, then it could get moved elsewhere.

[joan]

I just wanted to check in on how you guys are doing. Are you only having one issue every 6 months? THATS great!! I was trying to read thru the thread to see how you were making out.

joan*

[RobinN]

She keeps improving. We are on our 5th month here Joan. That is the longest she has been seizure free in almost 4 yrs. She remains med free as well, so there are no nasty side effects to deal with.

There is a lot of stress on her as she is a Senior in High School, but even during her TOM she remained seizure free. I am extremely hopeful that if she continues with a proper diet she will beat this.

It has been great to be confirmed by her nutritionist / MD. I now have his email address and can knock around ideas and questions with him when I need to.

How are your two doing?

[joan]

ohh thats GREAT news. Im so happy for you. Continued success. We looked into it here but the 2 folks I talked to didnt seem confident in helping. I hope some day you can look back at this, as just a bad memory*

We're doing well. Jena's still on the 500 keppra and MAD. We go months seizure free and then get a twitch or two. All in all, Id say shes about 99% free. Id love to get her off the 500 keppra as they cant even say it is helping at this point but thats a long story. For now we are just sticking to the norm for us. I know the diet is working as she went off of it for about a week and had huge issues. Phillip still on 375 Lamictal and had a different seizure a few months ago. Threw me for a loop but.. I was told its a milder seizure than he usually has. Maybe a partial? Who knows, they keep me on my tippy toes here!

I really hope with the success many are having outside of meds, researches get on the ball and advancements are made in our lifetimes.

Be well
joan*

[lonnie]

I know you can say absolutly because it may vary from where you go but how much do these sessions cost? Once you go through a coursre of treatments has it trained your brain so that you are trained and it dosen't require doing anything more.

Does it work for both epileptic seizures and non epileptic seizures?
Does it replace phychiatric treatment?
Does it come to a point when you are able to get off your anti convulsantS?
My ins. wouldn't pay for classic biofeedback ,calling it only experimental. I am sure that they would be even more likely to do the same with this. THIS DOES NOT MEAN I AM NOT GOING TO LOOK INTO IT.
A teachers pay only goes so far so even it is not going to pay for a a broken car whichyou have to do it so somehow you find a way.
There are only so many ways.

The nearest place that would do it is 95 miles away. Not being able to drive I even have trouble getting to my neurologist appoitments in the town next to mine..

How is it done? How many sessions are usually needed? after the enitial series do you have to go back for more or is your epilepsy and NEPS cured? Lots of questions lots of cofution I hope you can help answer them..Thanks lonnie