Nutritional Stories Part I

It is quite evident that for many people, if they watch what nutritional choices they make, it can have a huge impact on their seizure patterns.

Doctor Blaylock a retired neurosurgeon, and researcher, has made this statement in his newsletter:

Blaylock: Since seizures often occur during sleep, they are frequently not diagnosed. There are many newer observations concerning seizures that can offer new ways to control them. One of the links most often overlooked by physicians and even neurologists is hypoglycemia. We know that, in healthy people, dropping the blood sugar rapidly can precipitate a seizure, and those prone to seizures are much more sensitive to hypoglycemia.

Studies have shown that a buildup of the excitotoxin glutamate in the brain triggers the majority of seizures, and most of the newer antiseizure medications block glutamate receptors in the brain. When blood sugar falls, brain glutamate levels rise. So, avoid sugar and high glycemic foods, especially around bedtime. Potato chips are a major culprit, especially those with excitotoxin additives, like MSG.

Magnesium plays a major role in regulating glutamate receptors and has been shown to reduce seizure risk. Take the magnesium three times a day. The last dose should be made by mixing 500 milligrams of magnesium citrate/malate with 4 ounces of water. This allows rapid absorption and promotes good blood levels.

Another anti-seizure supplement is L-carnosine, a natural compound that suppresses seizures triggered by excitotoxins. It also protects the brain. The dose is 500 milligrams three times a day, to be taken 30 minutes before each meal.

DHA, which promotes brain development and repair, has been shown to reduce seizures as well. The dose is 1,000 milligrams a day. Omega-6 oils increase the incidence of seizures, so they should be avoided as much as possible. It has also been shown that all antioxidants reduce seizures, especially if used in combination. Vitamin B-6 (as pyridoxal 5-phosphate) reduces brain glutamate levels and can reduce seizure risk. The dose is 25 milligrams to 30 milligrams a day. Melatonin (time-released form) is another nutrient that helps: Take 3 milligrams to 9 milligrams 30 minutes before bedtime.

I know that it has made a huge difference in my daughters seizure pattern. I have yet to work with a specialist on figuring out the ideal "diet", since I am not sure a traditional nutritionist would have much knowledge on seizures. We have already been to a endocrinologist and he was unfamiliar with much of the current research on seizures. He thanked me for teaching him. Not the position that I was wanting to be in.

So, I returned to my trusty source, The University of Google, and began snooping around. I eliminated bananas and potatoes for the time being. I continue to request that sugared drinks be limited. Attempting to make a lemonade that is enjoyable without too much sugar since lemon is great for clearing liver pathways.

Rebecca, tended to "crash" between the hours of 10:00 and 1:00. My intuition was telling me that there was a relationship between her blood sugar and her episodes. So I made some changes to her morning nutrition. I now encourage more protein for breakfast. For example eggs scrambled or cooked for an egg sandwich, sliced meat rolled around avocado, organic granola with nuts, salmon and brown rice balls. I have cut back on simple carbs in school lunches, so there is less snacking on them before her sandwich.

I especially encourage her to be careful during her sensitive time of the month. Even the week leading up to it. I read that sugar can stay in the system for up to two weeks. I am not making as many fruit smoothies. I am not putting cookies into her lunch. If anything, I put in organic chocolate chips in with some gluten free pretzels and nuts for a treat.

Something seems to be working. She has gone 45 days without a seizure.
This is without any pharmaceutical medication. She does take supplements though.
Right now she is taking:
Ultra Omega
Jigsaw Magnesium 1000mg
Vit B complex
Vit D 2000 IU
Vit E
Taurine
L-Carnitine
Liver Health

I am extremely hopeful that I have found the answer to Rebecca's health.

Teenagers at Work

Rebecca's work schedule has cut into our routines lately. It has been harder to pin her down to do Neurofeedback as we had been. Between skating practice, school, work, and her social life... yikes.

I do have good news to report though. We are see an improvement in seizure control. She is maturing and showing that she has more self control in what she eats, and understanding how even something as simple as a potato or a banana, could affect her blood sugar, and cause her to "crash".

We had an appointment a week ago with her neurologist. Dr K says she is not knowledgeable about how hypoglycemia and seizures are connected. She offered another med, but I refused. I think she is hopeful that when Rebecca turns 18 she can sell her on the med route. I will continue to teach Rebecca why this is not a helpful approach for her. We only experienced toxicity while Rebecca tried the anti convulsants. Not a positive approach in my opinion.

The neurologist said, "I commend you on the research that you have done. Not too many people would take the time. Most people simply would not bother. Most people would find it too difficult." Of course, I had no response while at the appointment. Now if that was said to me, I would reply, "Cleaning the house is difficult. Cleaning the house is a bother. However, we do it. Because the alternative is not acceptable." I would also add, "Most people do not know about the approaches I am taking. Most are not given the options. They are given the choice of medication, and after years of side effects, and complications, they are then possibly tested to see if they are a candidate for surgery." None are shown the reasons nutrition play a role in seizures. None are tested for celiac disease. None are routinely tested for hypoglycemia. Neurofeedback is not offered as a alternative to control the onset of a seizure disorder. We are not educated on the vitamins and minerals that might be helpful.

So to you my dear daughters doctor...Consider treating the whole body. You would be surprised at what you will find, and the alternatives that are being used by many, with results are astounding. Don't be sucked in by pharmaceutical companies that are giving you their test results with gifts attached. Each and every human being with the diagnosis of Epilepsy deserves to have a doctor to work with to find the CAUSE. Please stop putting a bandaid over the symptoms. Heal the body, and begin with nutrition.

Decide to create the results that you desire.

The quote above comes from John Di Lemme.

As a young child, John Di Lemme was clinically diagnosed as a stutterer and told that he would never speak fluently. Today, John has achieved great success as an International Motivational Speaker, Successful Author (2 International Best Selling Books), Strategic Business Coach and multi-million dollar entrepreneur.

I know that many people are told certain things by their medical teams, and they believe them 100% without question. I am finding that I am a rebel in some circles, because I simply will not digest information as fact immediately. Along this recent journey, to educate myself more about Rebecca's seizures, I have learned a great deal. Unfortunately, one of those lessons was that there are doctor's practicing that are getting kickbacks from the pharmaceutical companies. Keeping the HMO insurance companies happy, while the patients suffer with long waits, and limited time being seen.

The memories that I had as a child, was the family doctor coming to my home, when any of us were sick. I don't remember multiple prescriptions to fill, unless it was truly necessary. I don't remember the pages and pages of drug ads. I certainly don't want to suggest that all medications are evil. There are many that have certainly helped to make my family and I feel much better. We are on the cutting edge of medicine in all aspects, but our society is an extremely unhealthy bunch.

No doubt there have been many helped by anti convulsants. Having tried them with my daughter's seizure disorder, I must say they made a horrible mess of her life, and her body, emotionally and physically. I am so glad to be rid of them. They actually made her seizures worse. I have documents that I would predict could prove this. Her seizures now, are less than are acceptable for a research program. I am extremely proud of this.

Unless you have had a life threatening illness, (yes... seizures are life threatening), you could not even comprehend what I am saying. There is money being spent trying to find the newer, the more powerful, the magic potion for Epilepsy. However, it is not "Epilepsy" that needs to be treated. It is the underlying causes of this disorder that need to be found. I will admit that there are probably causes that are not known yet. However, the alternative therapies are all just put on the shelf, because the research studies that are paid for by the pharmaceutical companies don't feel they are worthy of being considered. Basically not enough money to be made from them. Forget the Quality of Life that each of us deserves.

I really do not like to be cynical. I use to trust the medical community to be watching out for my family. However, when faced with this knowledge of what is being bought and sold these days, it colors my thinking, just a bit.

I have created the results that I desire, by deciding to listen to my heart. To trust my instincts, even when others questioned me. To trust that I would "first do no harm", and work to heal my daughter not go the easy way out. Popping a pill is easy for some. Eating a nutritonal variety of foods is not so easy for some. They have to think, and learn, and shop differently. A quick fix is a part of our society. Quicker! Faster! Now!

The Native Americans did not have to think about what was healthy. It just was. There were no toxins, or additives, or rainbow drinks to consider. What we as a society need to do, is turn our backs on what advertisers have told us is good for us, which includes the rows and rows of "feel good" OTC drugs. We need to return to what is known to be a healthy lifestyle.

Decide to create HEALTH, because you deserve it.

I am going to share with you one more reason I decided to make the leap of faith to take Rebecca to the EEG Institute. One reason I have mentioned is the fact that the Othmer's had a son with Epilepsy. It wasn't just a business we would be going to each week. We would be amongst a family that understood what it was like to live with this disorder.

The other reason, I knew it was right, is the fact that they give free sessions to veterans that come back from US military service with PTSD. This is done through their Homecoming for Veterans program.


The EEG Institute, a world leader in Neurofeedback research and training, and the Brian Othmer Foundation are offering this cutting-edge treatment, at no cost, for veterans suffering from Post-Traumatic Stress Disorder (PTSD) through a network of clinicians across the country.

How often do you hear of a company doing something as genuine as this? I like being associated with companies that have integrity and compassion. When we made the decision to pay out of pocket for this therapy, I had no idea that one day I would have a family member in the military. I am just touched deeply by generosity of this nature.

Rebecca has two older brothers. One has just completed his first week of USMC Recruit training. I am extremely proud of his decision to join. We were informed Thanksgiving weekend of 2008. Knowing that companies such as EEG Institute take care of our military in times of need is impressive. I feel very blessed to be associated with them.

Training Times Two

We were keeping to our schedule of twice a week sessions, at the EEG Institute. I understood it to be similar to going to the gym. You wouldn't get much improvement if you only went once a week. So the two days a week, fit quite easily into our schedule.

In fact, over Rebecca's spring break from school, we made plans to do a two-in-one approach. We arrived in the morning, then left and had some lunch at a local mall. Gave us time to have a bit of fun and go window shopping. I do remember a bit of shopping for some "gotta have it" teenage clothing. Then we returned for another session at the EEG Institute, in the afternoon.

By this time, Sue Othmer had found out what protocol worked best for Rebecca. Others then were able to slip into Sue's role, when business took her out of town. Of course it was comforting to know that Sue was close by. I knew she was keenly aware of what role the word "Seizure" played in our family. It is quite clear to me that if you have never experienced one, witnessed one, you have no idea how life changing they can be.

I was seeing such positive results at this time to the Neurofeedback therapy, that when a seizure slipped through I was extremely taken off guard. Something was still not right in Rebecca's system. Even though we were being successful in controlling the kindling effects, something was stronger. I was determined to find out what this was.

Training

We began our visits in March of 2008. The training sessions were 30 minutes each. We made the trip twice a week and I think it was about the sixth week that we began to see very positive results.

Rebecca noticed it was easier at school to take notes. She was able to focus much better on her teachers lectures. Best of all, her seizures were reduced. She went from having six every month, down to less than one a month. It was frustrating when she did have a seizure. Yet putting it into perspective, the good days were great. The seizures were less intense, and we had come so far.

After Rebecca's second session she mentioned to Sue Othmer, that she had a day or two where she felt extreme mood swings. Frustration to hyperness, and silly behavior. This is the sort of thing that they asked us to keep track of.

Her color was good, her skin had cleared up from taking the meds. Her eyes were clear, she walked with a skip to her step. This was my girl.

A New Beginning

We met Sue Othmer on Rebecca's first appointment. She began by taking a history of her background. I don't remember all the questions as they were asked and answered quickly. I do remember it being very thorough, much more so than I had been asked by any medical doctor.

Sue, then explained the individualized approach with Rebecca that she was going to take. It was to be focused on seizure control, yet she would also work on body awareness,
She was patient and answered any and all questions that we had.

Another test was given to Rebecca while I waited in the waiting room, and then she did her first session. Sue brought me in to the therapy room, and showed me how this was done. I was still at this point trying to put all the pieces together in my mind, how this worked, so I left them alone and waited while they completed the process.

Once done, Sue came and told us that we should keep careful records and notice any changes to Rebecca's daily patterns. She mentioned that one place we might see changes, would be sleep patterns. This information would be very important to her, so that she could fine tune the therapy for Rebecca's needs.

We left excited that this might be our answer to seizure control for her.

EEG Institute

About this time, I was assessing our choices from conventional medicine: Medication, Surgery, or Implants. I am not sure what is keeping mainstream medicine from investigating alternatives. My belief is that it is insurance based. We have a decent HMO plan, for our family, and choices are limited as to what will be covered.

Bernard, the owner and founder of the forum, Coping with Epilepsy, or lovingly referred to as CWE, has thrown out links to neurofeedback sites around the forum. Being so new to the the "lingo", the disorder, and to the forum, at times my mind has been in overdrive. While reading articles on CWE, I came across a post left by Kurt Othmer. At the time I did not realize who he was. He was answering some questions left about Neurofeedback, and I asked a few more. I had many times put in our zipcode into the "find a practitioner" on a webpage called EEG Info, and had been given some names in our area.

I then started to realize that Kurt Othmer, was affiliated with a group in Woodland Hills. This is only about 40 miles from my home. On their website, it mentioned that they provide a free consultation. I kept this in the back of my mind.

Around this time I was also reading Epilepsy: A New Approach by Adrienne Richard and Joel Reiter. A book that anyone related to the disorder, in any way, should read. It followed much of what my motherly intuition was saying about my daughter. Then I picked up another book titled A Symphony in the Brain by Jim Robbins. I was learning about the history of neurofeedback, and once again the name Othmer, came up. I was beginning to make the connections.

After reading The Story about Brian, I had my answer. I had the pioneers of the industry in my "backyard". I needed to seriously investigate this therapy. In the hands of a competent practitioner, it was harmless. In fact, it could possibly be a positive therapy for many different issues Rebecca has faced over the years. Sue and Sigfried Othmer, had lost a child to Epilepsy. I knew from a place in my heart, one can not explain, that my daughter would be in very safe hands. They had Brian's name to honor in the name of The Brian Othmer Foundation, and a passion to help others, that is very rare to find. They had created a family business years ago, to fulfill both avenues.

I realized that insurance most likely would not cover this therapy. Yet, the EEG Institute has suggestions on how to approach your insurance provider. It is quite frustrating to many people dealing with this disorder, that the big $$, is put towards pharmaceutical, surgical, implant and gene studies. Yet nutrition, and therapy such as neurofeedback are shelved. There is a lot of skepticism that it is due to the payback aspect. It certainly is more profitable to keep people controlled by their medication than it is to heal them. I had to put this aside for the time being. My daughter's health depended on it. At the time she was having six seizures a month. Not a lot to some standards, but too many by others.

My choice is to HEAL my daughter. To find the cause of her seizures, not to put "duct tape" over the cause by treating the symptoms. I keep turning over every rock I can find. So, it seemed right.... I made an appointment with the EEG Institute, in Woodland Hills, CA, and for the first time in a long time I felt HOPE.

Coping With Epilepsy

About this time, I was reading a few online forums that deal with neurological disorders. This is where I initially "met" Dogtor John. He was so helpful in explaining to me his ideas about how the Standard American Diet, plays into these illnesses. I continued to read, and learn, and understand how better to help my daughter, with nutritional changes.

When I took her to our local Whole Foods Market, she was a bit overwhelmed with changes to the foods that she had grown use to. Instead of explaining what she couldn't have, I made a valiant attempt to show her all the great new foods she could have. I tried to stay positive about this, so she wouldn't become frustrated before we had even begun. I was reading labels like crazy, because I decided if we were going to try this, we would do it all the way. I know now there are still places I can be more careful. It is easy to get started with new "favorites", only to find they too are not the best choices. All in all, I think we are on to something for many reasons.

It is hard for me to stay focused here, since at the time, I was learning so much, so fast. During the time that I was reading the forums, I met a man named Bernard, on one of them. His wife has seizures, and he wrote a post about a forum he had designed, just for Epilepsy. He named the forum: Coping With Epilepsy
I followed his link and decided that was where I needed to be.

I read, and introduced myself, having had some experience contributing with art forums. I was not sure I could hold my own with the neurological dialog. My first post is here:
Coping With Epilepsy Introduction
However, I was made to feel right at home. It was a place where I could write my fears, share the situation, and events. No one judged me, and I could explore my options with people in similar situations. There were other parents as overwhelmed as I was, and we were able to take a breath here. I hadn't found that anywhere else. Most conversations on the subject with friends and family are met with glazed eyes after about 5 minutes.

Dogtor John, became a member and wrote some great posts:
Hi Everyone, I hope I can be of some help

I could not explain to you any better than my friend, Zoe. She wrote a wonderful article about Coping With Epilepsy. It can be found here:
Open House at Coping With Epilepsy
I hope you come to visit us. If you feel comfortable, please say hello.

In my next post, I will write about how I came to hear about Neurofeedback.

The Conventional Approach

I won't bore you with all of the medical appointments that we had over the next year. From five EEGs, two MRIs, blood tests up the kazoo. The things that stand out in my mind are being told:

1. Diet plays no role in seizure disorders
2. Hormones play no role in seizure disorders
3. Memory loss most often is psychogenic
4. Pharmacist at UCLA telling my husband and I, that she had never heard of Taurine
5. Loss of vision was most likely not due to medication
6.

I am sure there are more, and I might add them when my memory is refreshed.

I continued listening to specialists, and Rebecca tried four, Anti-Epileptic Drugs (AED). There were terrible side effects to each that we tried. None that I was comfortable letting her live with. Loss of vision, loss of memory, fatigue, muscle pain, liver issues, life threatening rashes...

A few comments stood out more than others, and I think my first Google search was how hormones / seizures can be related. It was on each and every Epilepsy site. PubMed had research on the subject, but the conclusion was more needed to be learned. How could a prominent neurologist not know the term, Catamenial Seizure?

From that point on, I decided to learn all I could about this disorder and "enrolled" in the "University of Google". It was my connection to the libraries of the world. I did not have to go find the books on the subjects, I could search at all hours of the day. Something my family began to question, but one that I don't make any apology for.


I began finding information on nutritional changes that can be made. My searches kept ending up at an unusual site. Dogtor John, is a veterinarian. He has devoted his life's work to finding out how foods, allergies, and virus, play a roll in certain illnesses. He exchanged emails with me about how it can play a role in seizures. His work has allowed the animals at his practice to become seizure free. I was certainly willing to adopt his ideas. It gave me something else to research.

Rebecca, agreed to be placed on an elimination diet, to see if allergies to foods might have an effect on her seizures. I do believe she was continuing anti-seizure meds at this point, so the outcome of trying these nutritional changes were hard to journal at times. We have made the attempt to eliminate wheat, casein, soy, and corn products. All high fructose corn syrup (HFCS), and MSG (and related byproducts). This has been easier than I expected. Thank goodness many others are doing this for health reasons. A local Whole Foods Market was a new shopping experience for us. You feel healthy when walking in the store. I still read labels almost daily, but I have become better at learning what to look for. I will blog another time on what I have learned about nutrition and how important it is to brain function. So far her reduction in seizure patterns have been largely due to a combination of alternative therapies. These include nutritional changes, supplementing for brain and body health, and Neurofeedback.

Life turned a corner for Rebecca, when we looked at HEALING instead of managing seizures.

A Fresh Start

I began this Blog at the end of a year. It was a year of many "pick-me-ups". I had done what I thought was my duty as a parent, and looked at all the conventional approaches to my daughters medical issues. I hit dead ends many times. When it wasn't an abrupt dead end, the route was certainly a maze and the quality of life staggeringly low. All that I read, led me to the belief that if I allowed the current treatment to continue, we would be ten years down this path, still wondering,"What if...".

I will get to how I found out about Neurofeedback, but first a bit of history.

My daughter had her first seizure on June 23, 2006. It was a busy day, and her weekend calendar was full. She is a competitive figure skater and she had pushed herself very hard that morning at practice. It was not unusual for her to skate for three hours, but the determination this particular morning was felt by those watching. Her dad had taken her to Starbucks of all places to get a morning pick me up. She had a Vanilla Frappuccino with whipped cream. This is not a put down of Starbucks, but something that would come back to haunt me time and again as an, "Ah Ha" moment. I will discuss my findings about the nutritional consequences of this choice later.

We did some errands after her workout, and then came home. She was sitting at her desk IMing her friends, and I noticed her fatigue. I suggested that she lay down and rest.
I went back to doing what moms do. I thought she had taken my advice to lay down, since I did not hear much from her room. The next thing I knew, she was in the bathroom calling out to me. I went in and found her on the carpet. She told me she had just been sick to her stomach. She was disoriented and had no recollection of having gone to the local convenience store that morning, or having skated. I thought she was coming down with a flu bug. So I got her back into bed to rest. She did not feel warm, so I didn't think it was important to take her temperature. My mind was working overtime, trying to figure out what was going on with her.

I kept her in my bed most of the day, watching movies. I fed her "Chicken Broth" thinking she was still incubating an illness. We canceled her plans for the following day, and she fell asleep in my bed.

I remember the next turn of events like it was yesterday. I went into my room and decided not to move her, since my husband was out of town. I reached to turn out the light. As I did this she turned over, and began having a seizure. It was the first seizure I had ever witnessed in my life, so I was quite alarmed. I dialed 911 and they talked me through the incident, until the EMT's arrived. We were rushed to the hospital.

During the questioning about her day, I leaned from her answers that earlier that morning when she was sitting at her desk, her left hand began to shake uncontrollably. Then her head turned to the left. She fell off of her chair, and at some point she found her self on the floor and made her way to the bathroom. Which is where I found her. The pieces of the puzzle were beginning to be put into place.

It is here that that I began learning about Epilepsy.

Rebecca's Story

I am excited to share my story with you. Well... actually it is my daughters story and how I have found a way to help her control her seizure disorder.

Two and a half years ago, I didn't even know what a seizure looked like. I had heard of Epilepsy, but it was not a subject that I had much contact with, if at all. Epilepsy is a disorder not talked about much. Then one day it hit my daughter...

I hope to share our journey thorough this blog. When I first started researching this disorder I felt so alone. However, through the University of Google, I found information that has helped me to make informed decisions about alternative therapies, This has offered us HOPE. I want people who live with this disorder, to know that there are choices available, not offered by conventional medical doctors.

This is a perfect time to begin this journal, as November is Epilepsy Awareness Month.