Neurofeedback - Rebecca's Story

[RobinN]

18th Birthday party this past weekend. Far too much sugar involved, but she is doing well except for mentioning that her ear hurt. I have intuitively been thinking that she has had an increase in yeast, I will address that and see if it takes care of it. Sugar feeds yeast and can cause fungal growth. I used Grapefruit seed extract (not to be tried if you are taking medication) and Olive Leaf Extract. I also give her biotin daily which helps naturally with yeast control in the GI tract. Sinus issues have been eliminated since we have done this, and no signs of the eczema either. Skin is clearer too.

These articles keep showing up in my inbox:

Many of my patients don’t make a connection between the food they eat, either, and how they feel, physically and emotionally. But any factor that affects your GI function is worth looking into, because good digestion promotes optimal health — both physical and emotional.

*****

When you’re digesting food, your body reduces it into smaller chemical forms: proteins and other peptides are broken down into amino acids; carbohydrates are simplified into monosaccharides; and fats are broken down into free fatty acids and monoglycerides. A diet high in plant foods, along with adequate protein and healthy fats, will moderate your digestive metabolism, and help regulate the primary hormones crucial for your survival — insulin, glucagon, and cortisol — resulting in better energy and mood throughout the day.

http://www.womentowomen.com/digestio...vehealth.aspx?

[RobinN]

Rebecca had a two minute tonic clonic seizure yesterday.
She has taken chances with diet recently. She did not get enough sleep last night, and it is the second day of her period.
BAM!

[Cetacean]

I've been eager to hear that Neurofeedback worked for Rebecca, but I note she still has seizures.

Could you sum up your experience with EEG Neurofeedback (or direct me to where you have already done so)?

Very grateful for this thread. I've been eager to try this but the cost is prohibitive. Still, if it works, I'd find a way to pay.

[RobinN]

Hi Cetacean -
I appreciate you taking the time to find out more about Neurofeedback.
Yes, I have to admit we are not out of the woods yet. I do believe that nutrition is still what we need to work on.
Neurofeedback certainly played a roll in moving her in the right direction. In fact we need to get back on schedule and re-commit to doing regular sessions. I think this next year we can get her stabilized. No doubt. Just need to focus on it.
You can either skim this thread for our experience, or read my blog from the bottom up.
I highly recommend it. It was a dent in our pocket too, but I am still glad that we did.
I see that you are in SF. You also might check out the:
http://www.andrewsreiter.com/
They have a great track record

[Bernard]

Rebecca had a two minute tonic clonic seizure yesterday.
She has taken chances with diet recently. She did not get enough sleep last night, and it is the second day of her period.
BAM!

Sounds just like Stacy. As long as she stays on her diet and sleep regimen - especially around her periods - she does great. When she doesn't, she has problems.

[themanymens]

Sounds just like Stacy. As long as she stays on her diet and sleep regimen - especially around her periods - she does great. When she doesn't, she has problems.

Hello Robin, I know you've said that you had Rebecca on an elimination diet along with the EEG Neurofeedback, and I know about the big four from Dogtor J. However, it wasn't until all processed foods were eliminated that I believe my son began to truly heal. I'm very interested to know if you and your daughter have tried that approach?

I would also say that I believe that epilepsy and autism are basically the same illness as are so many other autoimmune illnesses that have reached epidemic levels.

[RobinN]

Ahhh yes! I agree 100% that there are similar causes for these disorders.

I have not expected Rebecca to eliminate all processed foods. We have eliminated most, but I still have the gluten free ones. I am hopeful that one day she will want to go all the way. I know I would if it were me, but Rebecca likes to walk the line.

I think if I had a tried and true answer, she might be willing to follow it. But since it all is such a gamble, she has continues to roll the dice. Now that she is 18, she knows that it is on her shoulders.

Thanks for the recommendation. I will pass the information on to Rebecca.

[themanymens]

Hi Friend! I know I read somewhere that you had other children with other problems or that you yourself do? Brain fog! Anyway, do you see connection there also? Have you ever been in touch with Dogtor J personally?

I have so many questions for you! I hope you don't mind. Now that I've finally started this I feel like a kid in a candy store just being able to talk to you!

Also, did your whole family go on the elimination diet? I decided that here and we all ate what he ate. Then when he went to her sister's it was even better because she had eliminated all processed in the house (something I have learned since and I'm doing it here). That is not to say he's completely free of the big four because they do go out to eat, but he still is healing!

I thought I'd let you know...and I will post it...but maybe Stacy can also still heal if it's not in the house and she only has it when she's out. Of course, maybe she still eats at school everyday?

My son was so sick of trying and he would not have chosen any of this if he had an alternative. So, I pretty much forced it down his throat! Ha!

See ya soon, Stef

[RobinN]

Yes my oldest son has been diagnosed as having Aspergers, my middle son has an autoimmune illness caused vitiligo, and then Rebecca with seizures at age 14.

I have been in touch with Dogtor J, but I do not subscribe to his private consultation. I have learned what I know from his website. I also have read www.danasview.net a lot, and also the yahoo groups connected to many of these disorders.

I don't mind questions at all.

No the whole family did not. My husband is a bit of a skeptic, and he is willing to support Rebecca being on it but he doesn't choose to be. However, I cook GARD, yet he has allowed her to go off course when they are together. She gets mixed messages, yet she is beginning to see that she feels better on the diet, mostly from dairy infractions. Yes I think Rebecca is also healing and so she is noticing the difference when she does go off of the diet.

Stacy? are you getting Rebecca confused with Bernards wife Stacy? .. confused.
As far as school, I make a lunch every day for Rebecca. Problem is, I think I don't rotate the foods enough.

Yes I think we need to discuss the frustration, the depression, the withdrawal from not being able to eat what everyone else eats. HUGH part of it. Too bad it isn't like a peanut allergy, giving an immediate reaction.

I think I am going to look at following the glycemic index and see the numbers. I think the GARD is excellent and it explains a lot about illness, however I think we have still an imbalance in simple carbs in our diet. I am tired of researching, but I am sure I will get a second wind.

Thanks for the support. You are very kind.

[RobinN]

Since Rebecca has moved into adulthood, I also moved her from a pediatrician to an adult doctor. We just met her today, and we now have a referral to an endocrinologist, a nutritionist/MD and a new neurologist. I am excited to see if we will turn over the final rock and find our answers. She is open my ideas, and Rebecca is still glad to have me on her team.

We are also going to continue neurofeedback this month. Hit this bugger from all directions.

[RobinN]

Yesterday we ate at a Chinese Restaurant owned by a dear friend. Rebecca has minimum days at school due to the midterm. It was her choice and I went along with it.

I began feeling poorly in the afternoon, but kept going. I had to go out to a meeting in the evening, and at that time had no desire for any dinner. My stomach was reacting to something. I connected it to something earlier in the day. However, when I arrived home Rebecca was curled up on her bed, saying she was dizzy, had muscle aches, and a headache. Putting my thinking cap on, it was evident that the lunch we had was causing us both this reaction.

Today, Rebecca had a seizure, and I have been in bed all day. My muscles ache, and I have been feeling sick to my stomach. Rebecca says her muscles ache, but most likely from the seizure.

We have a direct response to MSG / Gluten. I do hope this will encourage Rebecca to consider her options when eating. I do believe, as we both have eliminated the offending ingredients, that we are healing and when we do eat it we will have a more severe reaction. That is only an opinion, but it does ring true to alcohol, so I presume it would for other chemicals.

[bigbro]

We have a direct response to MSG / Gluten. I do hope this will encourage Rebecca to consider her options when eating. I do believe, as we both have eliminated the offending ingredients, that we are healing and when we do eat it we will have a more severe reaction. That is only an opinion, but it does ring true to alcohol, so I presume it would for other chemicals.

Your body probably builds up a tolerance to it, like alcohol as you said. So when you go without it doesn't take much to be affected.

It must be difficult trying to eliminate MSG from your diet, it seems to be in everything these days. But especially Chinese food. Even if you request that they don't use it, it's no guarantee that they don't.

[RobinN]

What I have learned is most people only know the term Monosodium Glutamate. Now they have manufactured about 40 different byproducts of it, and some sound very harmless. So it would not be something that many cooks are familiar with.

For those with a low seizure threshold, it puts them over the edge. For me I guess it brings on a migraine.

[bigbro]

What I have learned is most people only know the term Monosodium Glutamate. Now they have manufactured about 40 different byproducts of it, and some sound very harmless. So it would not be something that many cooks are familiar with.

Thanks for that RobinN. Could you list some of these? Chemical additive 621 is the only thing I know to look for on packaging, which is MSG itself.

I did a bit of googling and came up with the following:

Hidden Sources of MSG - 621
MSG (621) is becoming harder to track down. Food manufacturers have found that consumers recognise 'monosodium glutamate, 621; and are taking advantage in a loophole in labelling laws and putting MSG into our food under other names. When it is added as an ingredient of another substance it need not be listed on the label. The earlier these substances appear on a list of ingredients, the more likely they are to contain MSG. Even if the label says "no MSG", other glutamates, which can cause the same reaction, may be in it definite sources of MSG, 621.

Great.

[epileric]

Food Additives that ALWAYS contain MSG

* Monosodium Glutamate
* Hydrolyzed Vegetable Protein
* Hydrolyzed Protein
* Hydrolyzed Plant Protein
* Plant Protein Extract
* Sodium Caseinate
* Calcium Caseinate
* Yeast Extract
* Textured Protein (Including TVP)
* Autolyzed Yeast
* Hydrolyzed Oat Flour
* Corn Oil

Food Additives That FREQUENTLY Contain MSG

* Malt Extract
* Malt Flavoring
* Bouillon
* Broth
* Stock
* Flavoring
* Natural Flavors/Flavoring
* Natural Beef Or Chicken Flavoring
* Seasoning
* Spices

Food Additives That MAY Contain MSG Or Excitotoxins

* Carrageenan
* Enzymes
* Soy Protein Concentrate
* Soy Protein Isolate
* Whey Protein Concentrate

http://www.drhalbrown.com/MSG.php

[RobinN]

Fourth day after Chinese Restaurant adventure and still feeling yucky. Rebecca seems to be back on her feet though. Her wanting to push through it might be helping that fact.

I started reading more and seeing if I could find anything new on MSG, and came across the Whole Foods Market blog post:

Every week I see dozens of myths and misunderstandings about food and our company come across my desk, confused thoughts ranging from “Everything Whole Foods sells is organic” to “Canola oil is a secret poison” to “Whole Foods Market is owned by Paul Newman.” This is the first in a series of posts aimed at sharing – and clearing up – some of the more popular misunderstandings floating around out there. Through these examples, I’d like to illustrate the lengths we go to “do the homework” about natural foods and to make sure that there’s nothing in our products that you’d be surprised to find there. If you have any particular questions or topics you want to see covered, post a comment down below and let me know what you want to hear about.

Who we are and what we do

Look around near the doors of any one of our stores and you’ll likely find our commitment to “Selling the Highest Quality Natural and Organic Products Available” painted directly on the wall. This promise, the first of our company’s core values, seems simple at first glance, but becomes complicated once you start to consider the words “natural” and “organic” and what they really mean. I’ll save “organic” for another post, but what does “natural” mean, and who decides? Well, we do, and we take the job very seriously.


I work as part of our Global Quality Standards Team. We set the company’s standards for what we sell in our stores, including food ingredients, body care products, dietary supplements, meat, seafood, and virtually every other category of products in our stores. Our jobs are a sort of a hybrid of food science, chemistry and philosophy, as we review the ingredients, products and practices that go into our products. We’re not just studying the nitty gritty of how the ingredients are made, but how they fit into our belief that minimally processed food is better, and our promise to only sell natural food. We consider ourselves buying agents for our customers, rather than as sales agents for our suppliers, which in my mind is one of the best descriptions of what we do. Our work always starts with our promise to sell “the highest quality natural and organic products;” no matter how deep we get into the chemistry of how a given ingredient is made, the questions we’re trying to answer are “is this natural” and “would our shoppers be surprised to find this in a natural product?” Is it natural? How is it made? How is it extracted? Is it legal? Is it safe? Our buyers and stores are only allowed to bring in products that meet our strict standards.

Myth: There’s Hidden MSG lurking in our aisles


And now to this post’s aforementioned myth and/or misconception: Ever since the TV show 60 Minutes aired a story about MSG in the early 1990s, we’ve been getting calls and emails from customers concerned that there’s secret MSG hidden behind our labels. The short answer is that MSG, or monosodium glutamate, is an unacceptable ingredient at Whole Foods Market, thus not allowed in any of our products. We don’t allow it because it’s an artificial flavor enhancer that’s inconsistent with the idea of natural food. But the ongoing confusion about the ingredient is complicated, and requires us to look at some of the chemicals responsible for food tasting good.

The term “glutamate” refers to a number of forms of glutamic acid, an amino acid found naturally in many foods (and in our bodies). Cheese, milk, meat, peas, seaweed and mushrooms are a few of the foods containing the highest levels of natural glutamate, and this substance is largely responsible for the phenomenon of umami, the “fifth taste” of savory, meaty foods. In fact, the discovery of the link between glutamates and savory flavors led the Japanese food scientist Kikunae Ikeda in 1908 to the commercial development of monosodium glutamate. MSG is a synthetically derived and highly concentrated flavor enhancer that is almost completely made up of glutamates. It’s so powerful that just a few drops can drastically change the flavor of a dish.

As the 60Minutes story exposed, it’s also so powerfully concentrated that it can cause severe reactions in people who are hypersensitive to it. While the scientific basis of the set of symptoms known as “Chinese Restaurant Syndrome” has been debated and doubted by many, the phenomenon has caused a lot of people to carefully and diligently avoid MSG. A number of consumer groups have claimed that certain food ingredients, such as autolyzed yeast and hydrolyzed protein, are MSG in disguise. They are not.

Autolyzed yeast and hydrolyzed proteins, among other ingredients, are completely natural ingredients that happen to be have substantial amounts of glutamates, but nowhere near the concentration found in MSG. While a small subset of people may be sensitive to even these small levels of glutamate, these ingredients are always clearly identified on the labels so that, as with all food sensitivities and allergies, people can be aware of ingredients they’d like to avoid. These are natural ingredients that are definitely of grave concern for people who are sensitive to them, but they are not MSG. We draw a clear line between natural glutamate-containing foods, which we allow, and highly concentrated MSG, which we don’t.

For further MSG reading:

The New York Times ran a good story on this issue back in March, although I wish they’d made a clearer distinction between MSG and the other glutamate containing additives.

Jordan Sands article “A Short History of MSG: Good Science, Bad Science, and Taste Cultures” appeared in the Fall 2005 Issue of Gastronomica (my very favorite food magazine). It’s not available online, but I’d recommend getting your hands on it if you can – hopefully your library has a copy floating around.

http://blog.wholefoodsmarket.com/200...-msg/#more-397

I guess the research is on their side, but the anecdotal evidence is on the side of those that are sensitive to similar chemicals

[Molly97]

Maybe it would be more correct for those of us who are sensitive to say "glutamate intolerant" or "glutamate-containing ingredient" instead of indiscriminately lumping it all as "MSG."

[RobinN]

That is what I was thinking today Molly. Seems if you two or three different ingredients all on the list, combined they might add up to a whopping dose.

I did read that B6 can help the body deal with the abuse. Found this to be interesting as it is also the vitamin that is recommended for Keppra. Must be targeting similar receptors.

[RobinN]

I need to share something positive in Rebecca life.
She left last Saturday for Yosemite with about 1/4 of her Senior Class. I had a few meetings with the school V.P. prior to the trip, to discuss the possibility of her having a seizure while hiking. He was nervous, and came up with all the "what ifs". I explained how important it was for her to be allowed to go.

I wanted her to have this experience, and know that it is okay for her to enjoyably live life. She was brave to go on this trip, because none of her daily friends were going. Teachers encouraged her, and told her that she would be making new friends and have a great time. She has been a trooper and took off with a positive attitude. I even received a text when she arrived, " they have gluten free pasta and bread for me =D".

She has hiked (a lot), and gone cross country skiing, in God's country.

I am so proud of her and the school for facing their fears.

[Bernard]

Awesome! Stacy recently got back from an uneventful out of town adventure herself.