| Epilepsy - A Child's Case Study For reference, refer to this Organic Acid Test test. It was supposed to be an evening out for us, it turned out to be the beginning of a frightening and enlightening journey full of mystery, anger, and discovery. What came out of it was a deeper understanding of why I chose this field and how it was not only going to help my child but other people also. It gave me a greater appreciation of the twists and turns of life. October 28, 1999, my wife and I were ready to go out and celebrate our 4th anniversary. Our daughter Tasya (short for Anastasya), age 3 1/2 at the time, was playing upstairs when she fell backwards suddenly. She got up right away and laughed at "falling on her butt." A few minutes later, a parents nightmare occurred, she went into a full, grand mal seizure. No warning, except for what we later learned was a petit mal just before. Panicked, we immediately called 911 and had half the fire department at our doorway within 3 minutes. She recovered quickly, crying and scared, but seemingly okay. We took her to the Tahoe Forest Hospital in Truckee, California for the first of many trips we were to take in the coming months. A blood test and a CT scan were performed with nothing seemingly unusual to report, except to me. Being in the field, I was curious about the low CO2, abnormal Sodium and Potassium and the depressed Cholesterol level. Told that normally seizures occur without ever appearing again, we went home scared but hopeful that our daughter was going to be one of the lucky ones. On Halloween, in front of a group of paramedics who she was dancing for in her ballerina outfit, she had her second seizure. We now knew that we were in for the fight of our lives. At this point we decided to begin our discovery of what had befallen our daughter. A trip to a neurologist in Reno, Nevada was the first step. The diagnosis came back after an EEG; Primary Myoclonic Epilepsy. My wife and I were devastated but I was bound and determined to discover what the cause was since the neurologist had nothing except the standard comment; "She will probably have this for the rest of her life" and "we have no idea why this happened." The first thing to do was discover what triggers the seizures. The first thing that I saw in the literature was that Omega 6 fatty acids may induce seizure activity, especially temporal lobe epilepsy. The strobe effect was a definite trigger as was stress. But even avoiding these obvious triggers was not enough. Tasya suffered multiple myoclonic (petit mals) seizures and 8 more grand mals, one lasting over 25 minutes. All the while we were getting precious blood test data which was to prove very, very helpful in determining what we could do to stop and control the seizure activity and then bring our child back to normal. We then turned to some real experts in seizure activity and brain neurochemistry, first at the University of Washington and then within our own group of advisors at Carbon Based. The top pediatric neurologist at UW, ran a PET and MRI and found a small defect in our daughter due to a cafe au lait mark on her arm. Still, not much could be done to resolve it at this time. Depakote was the only answer, according to them. Not to me. We then turned an esteemed group of doctors and researchers to determine the next steps to take. It was at this point we began to delve deeply into the world of Amino Acids and Organic Acids. There are some, so-called experts, who believe that fatty acids are the direction to go, which, looking at the literature is pure bunk. According to the substantiated, peer-reviewed literature, amino acids hold the key to the disorder. It was this research direction that yielded the answers we were looking for. This brings us to mid- December when things began to look up. On December 18th, 1999 Anastasya suffered a 3 minute grand mal seizure in a bathroom in Auburn, California. This is to date the last grand mal she has suffered. Her Depakote level was 80 (normal 40-120). Our concern was that this was going to be a breakthrough seizure and we would have to increase the dosage again (on four 125 mg capsules). Still, there were subtle differences between this one and previous seizures. This last seizure was not as violent in nature and was easily controlled. She recovered well and seemed no worse for the wear. It was then that I decided that we would go full bore with her amino acid regime along with other natural substances on top of the medication. Her supplementation regime in the initial phase was as follows:
We began to count the days Tasya was seizure free (grand mal). As the days began became weeks and the weeks became months, we also noticed a change in her behavior. Her mood elevated, she was less defiant and seemed much more settled than she had been since starting on the Depakote. We got our child back. A few things haunted me biochemically. One of the problems with the use of Taurine as an effective means of seizure control is with the delivery of the amino acid across the blood brain barrier. It isn't very efficient. I was determined to discover a mechanism. While looking through the library at the local medical school, what should stare at me but a research paper called "Sodium and Chloride Dependent transport of Taurine at the Blood Brain Barrier" by Tsuji and Tamai – published in a book called Taurine 2. It was the electrolytes that were necessary to deliver the taurine to the brain. A further clue was published by Goodman HO, Connolly BM, McLean W, Resnick M entitled "Taurine transport in epilepsy" which states "...that the transport of taurine, rather than absolute taurine concentration, may explain the efficacy of taurine administration in some epileptics but not in others." After starting Tasya on this regime, things began to change dramatically, especially one aspect - Anastasya has not had a grand mal seizure since December 19, 1999. This is not to say that we're out of the woods, but we're in a lot better shape that we were before. Her petite mal seizures only occur during sleep, either nap time or at night and nothing more than 1 second long bursts. A few other things began to happen: Tasya can spin and swing rhythmically again which used to induce seizure activity, her attention span is greatly increased, strobe effects do nothing to her and her mood is even instead of swinging back and forth. One other major change is, as of November 10th, 2000 she is off Depakote! Her levels had dropped to 19 which is far below therapeutic levels and her pediatrician felt that we were justified in discontinuing her meds as long as the seizure activity was under control. The question many of you reading this must be asking is, how did he know how and what to supplement his child. The answer is simple, yet profoundly complex. I tested her using the technology I developed. Utilizing the CellMate Blood Test and Amino Acid Reports, I was able to determine what her needs were. I have to say that I feel very lucky to be in the field I'm in both in laboratory interpretation and my knowledge of electrolytes and their uses. So, as of today, March 27th where do we stand:
Research into the control of epileptic seizures is the focus of modern medicine. Although, investigation of causative factors is ongoing, the bulk of the money is going into drug therapies to control the seizures. It is a shame that preventive measures, such as the use of taurine is getting so little research funding. We are also in the midst of developing a research foundation to further our work in neurological disorders like Epilepsy, ADHD and Autism. In the coming weeks, we will be doing some follow-up testing on Tasya including a Plasma Amino Acids Test, a Urine Organic Acid and Comprehensive Wellness Profile (standard blood test). As they become available, we'll post the results to this page. If you have any questions or comments, please feel free to e-mail me personally at schauss@cellmatewellness.com. Please remember I cannot give medical advise but I can tell you what worked for Tasya and how to find the resources to help yourself and/or your child.
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