Friday, January 4, 2013

All's well...

For those who have been urging me to continue to post updates about my son's condition, this post has been a draft for the last year. This one is from January 2011.

Well, they say that good things come to those who wait. I have not purposely left a small but budding audience wait with baited breath for the next post, however, I did not envision this post coming almost two years later. Wow almost two years have gone by, my how time flies. Now we all know why I could never make a living out of being a writer, I don't think I could meet their deadlines.

A lot has happened in two year. Since the last post my son's condition has improved significantly. He is right now over 2 years completely seizure free and 11 months medicine free on an epileptic syndrome that has no cure in the USA or the modern medically established world for that matter.

During the last two years we returned to Guayaquil, Ecuador for four additional trips. Once in February/March, once in July/August, December/January and right now we just finsished with round #7 of treatments. Since the 3rd round of treatments back in February/March of 2010, my son's brain mapping and EEG have shown a waveform of a perfectly normal child. Indeed, the brain mapping from round #4 of treatments continued the trend, my son presents himself both neurologically and socially as if he never had a seizure disorder at all. In fact the doctor just told us last week that if you took any average seven year old off the street and gave that seven year old an EEG or brain mapping and compared it with my son's, my son presents himself as an advanced cognitive thinker more neurologically sound than other children of his age.

The duration of the treatments have been the same for each round of treatments except during this one, which only lasts two weeks (we currently have two more days until we head back to the States). The natural thought is…well, if he's been seizure free since well before the last post, then why bring him back down here. I had the same question for the doctor. He responded that the goal is to allow him to become medicine free so you need to stay the course. Stay the course we did.

By the time of the last posting my son was Neurologically nearly perfect, however he was five years old and he could not read, nor could he construct numbers or letters and at the time he had difficulty holding onto a pencil. Everybody kept saying don't worry about that he's happy and he knows how to play well. Well playing comes naturally to all children and we did all we could to encourage the natural development of his imagination (which has always been enormous), his strength in music, his artistic sensibilities, and increasing the amount of finger type toys like tinker-toys and legos to strengthen his fine motor skills. Of course at times we loosened up on the TV watching and introduced him to more board and video games via computers.

Now much to the contrary of many contemporary parents who are opting to significantly limit and/or completely restrict all electronic media toys/games. We have always been of the mind that too much, or too little of things is neither too good nor too bad, but somewhere in between. I guess we've always been searching for the happy medium. I even read that when parents watch TV with their children that the amount of learning triples. We never use the TV as a baby sitter. Well I don't want get off on a rant about raising children in the digital age, that's another story for another post, back to the story you have all been interested enough to keep on checking back from time to time.

So, neurologically sound but still some work was necessary to be done for his social, behavioral and physical development. My son was in two different kindergartens last year, but a teacher in the first one was uncomfortable working with a student with epilepsy (even though we met her before the school year started and she understood that he was seizure free). The social stigmas associated with this disease is staggering sometimes.

Eventually we wound up having an issue with one of the two of his kindergarten teachers and apparently she is no longer working as a teacher in that particular school. We also took our son out of that school and placed him in a school with a more academically structured and emotionally nurturing environment.

Monday, December 21, 2009


The recent attention that this blog has been receiving is great. The information that I have been sharing with you is having its intended affect. The science is sound the treatments I assure you all are real. However, this blog is a public forum and for reasons of privacy I have withheld the doctor's names and contact info. I have all of the contact information and would like to share this information with any individuals who know of people in need of these treatments. If you would like the contact info please send a message to the following email address:

Thursday, November 19, 2009

Back in Guayaquil

It's been a while since my last post, I know. Well, many of you have given such positive feedback concerning our experiences in Guayaquil, including and most importantly the health of our son. Since the last post we have had to deal with all sorts of complicated issues surrounding our son's health.

The last year and a half was easily the most challenging and horrific year of our lives. This summer was easily the most amazing experience of our life. I think right now we are looking for a bit of moderation, I mean I have always been mostly moderate in my outlook on life.

When we got back from Guayaquil we decided that we could not go back to the neurologist we had been seeing prior to our trip. So we decided to canvass several of the LA metro area's most promising neurologists. In all we met with seven neurologists, who all observed our son for a short amount of time and asked us all kinds of questions. We asked a lot of questions as well. Each meeting took upwards of two hours (without travel time). Six of the seven completely dismissed our experiences and empirical proof of the validity of the treatments in Ecuador. The last neurologist we saw is currently our son's neurologist.

Her office is the first Pediatric Neurologists' office that is even slightly inviting to a child. Her desk is littered with small hand puzzles, goopy/rubbery toys, rubiks cubes, tops, sliding things, bouncy things, coosh balls, and many other delightful and fun things. This has been the only office that our son has even wanted to be in. Additionally, she is very open and receptive of the treatments our son has received down in Ecuador.

Though she has not come out and said that these treatments are the cure to all neurological disorders including epilepsy. She has told us that "what you have stumbled upon is unprecedented and nothing short of amazing and miraculous". Without approval from the FDA no doctor in the USA will completely sign off on treatments which have not been submitted to the strict standards and protocols of the FDA's clinical trial process.

No matter, this doctor pored through all of our son's medical records and medical history, remarking all the while about what a battle our son went through and that he is very brave. She also remarked that the nature of his reduction in abnormal electrical activity is astounding. Though his EEG has recently come back showing the reduction in abnormal electrical activity, it has not shown a complete eradication of the high spike patterns in the delta waveform.

This new neurologist of ours has already begun to decrease the medicine. So we are now back in Guayaquil undergoing further treatments from Dr. T. This time our son is responding to the treatments very well. We are now having similar successes and more. Our son is making up for lost time that he may have missed during that last year. He is in kindergarten and is making up some of the cognitive deficiencies of that last year pretty well, are things perfect no but he and we continue to be on the right road to recovery. Until next time...

Wednesday, September 23, 2009

As the mother of this amazing little boy I can't begin to express the joy my heart feels everyday I wake up and see that he continues to thrive and continues to progress. Ahh, it is as if every moment I look into his brown eyes and thank g-d how fortunate we were to have this opportunity to have our son back. One thing is important to note, my son is not the only fortunate soul that had this chance, I can name countless of other children and adults that have been fortunate to have this opportunity of restored health.

Last year was a year of suffering, in the ensuing years I want to pay back the universe for this amazing chance of a lifetime and be able to bring this technology to U.S. I want others to feel this burden of lead lifted off of them and be able to have the same lightness of feelings re: waking up in the morning and being able to see their love on thrive and succeed like their counterparts. All I care about is that my son can learn, laugh, giggle and have the same emotions as his peers. All I care about is that at 5 he feels like his peers and does not have to continue to go to doctors and tell him be brave for the doctor, that is just unfair and not right. I love to wake up to my son's beautiful smile and his amazing laughter, to his little warm body, to his growing interest in life, asking questions about g-d, life, death, his little body, other people's difference and learning that life is just about that learning daily. NO matter what. I love putting my son to sleep and reading to him and listening to him question the book, or watching him listen to music. Everyday, he is singing his little heart out, about everything. Ahh we as a family have truly hit the jackpot, we can be at peace with our son and his growth everything else is just that everything else.

Thursday, August 13, 2009

Fix The Problem

For those of you have read my previous posts I am new to blogging (as if you couldn't tell). For those of you who have not read my previous posts, well, go read them. This post in particular is going to discuss the actual events, techniques and procedures that allowed for an unprecedented alleviation in my son's disorder. What my son, family and I experienced was just short of a miracle. To say that I am blown away is an understatement.

Dr. T is a Bioneurophysiologist. His partner Dr. J. is an Otolaryngologist. Their office is located in a house in an industrial section of the Kennedy Norte area of Guayaquil, Ecuador. The house has been converted to accommodate their tools and patients. The house from the outside is very unassuming, especially considering that these guys are the only ones in the world who do what they do.

Prior to this trip I was expecting my son's symptoms to alleviate by 20- 25%. I was eventually blown away by the fact that his symptoms have alleviated by 65 - 70% which is way beyond what I thought could have been possible. Additionally, my son gained about seven pounds on this trip. To us that is remarkable because prior to this trip the medicine had curbed his appetite to the point where getting him to eat was like pulling teeth. So this trip was unbelievably amazing for my wife and I and equally amazing for my in-laws and hopefully a tad greater than interesting for you, the reader.

Dr. T. along with Dr. J. are the only doctors in the world that are doing what they do. Now, there are other individuals who utilize these tools independent of the other treatments. However, as far as I have researched, no medical or healthcare practitioner is combining the several treatments together in this particular manner.

So just what are they doing?

First of all Dr. T. performs a brain mapping on all patients. The brain mapping device is similar to an EEG in fact it is an EEG. Thirty six electrodes are attached to the head neck and shoulders, eighteen on each side of the head. The wires are hooked up to his computer which is equipped with a program of diagnostic software that he helped to develop. He is one of the pioneers of neurofeedback. His EEG and computerized diagnostic tools of analysis can be considered a LENS system (Low Energy Neurofeedback System).

To get a sense of what Dr. T. analyzes with his brain map a brief discussion of the waveforms of the human nervous system is essential. The nervous system oscillates with electrical energy in the lower reaches of the microwave spectrum of the Electromagnetic Radiation Spectrum (EMR) from between 1 - 20 hertz or 30 - 70 micrometers per second or 0 - 2000 microvolts. The range of electrical energy oscillating in our nervous system is broken down for analysis into several regions or waveforms.

To keep things simple the wave forms are: Alpha, Beta, Delta, Theta, SMR & SMG wave forms.
Simply speaking, the Alpha waveform is the wavelengths and frequencies of energy that allow us to make voluntary muscular movements and our ability of cognitive thought(s).

The Delta waveform is the wavelengths and frequencies of energy that allow the brain to control all of the organ systems requiring involuntary muscle control. In other words the brain's ability to keep the organ systems running efficiently and keep the body alive.

All neurologists read, conduct and analyze EEG's. Neurologists primarily focus upon the Delta waveform because it is within this waveform that neurologists can understand the abnormal electrical activity of patients suffering from seizure disorders and the struggle of the patient's brain to keep the body functioning. That's not to say that EEG's do not provide information to the neurologists on the other waveforms, because they do. However, it seems neurologists tend to focus primarily upon the Delta waveform.

The theta waveform as I understand it is the synthesis of the brain to coordinate the flows of electrical energy from the brain to all of the systems of the body. The Beta waveform is the so-called energy that the brain gives off, think of it as the neurological landfill of the mind, the junk of the mind.

Well Dr. T. analyzes in detail all of the waveforms of electrical energy oscillating within our nervous system. The analogy that I have been fond of telling people is the following: if the center of the brain was akin to the center of the universe and you were looking for a black hole, then the neurologists assigned to my son's case have been looking through a ground-based Galilean telescope.While Dr. T. is looking through the Hubble or the Spitzer Space Telescope. His analysis is multi-dimensional and broad in perspective. It is marked by succinct precision to elucidate the inner-workings of the patient's nervous system. He reads the brain's map like a geologist reads the historical layers of rock under a mountain to uncover the story of a region of earth. Instead of the story of a region of earth he is uncovering the story of the patient and his/her life.

My son's first brain map showed that his Alpha waveform was extremely low. For a patient age 5 years old, 10 - 15% Alpha is the normal range. When he arrived in Ecuador, my son's Alpha was at 3.1%. The doctor pointed out that a child with an Alpha that low was in an extremely dangerous situation and he was surprised that our son could function with any cognitive abilities at all. In other words in the grand scheme of things our son was in much worse shape than what the neurologists had originally told us. In fact he was on his way down and fast towards a vegetative state or worse. When I first heard this (I was still in CA) my heart and jaw dropped through the floor and I went cold.

The medicine my son is currently taking: Depakote and Zonegran carries some side effects. Chief among them is loss of appetite, nausea, stomach ache, headaches and many other minor side effects. Additionally, the depakote adds ammonia to the blood which, can elevate in some patients the enzymes in the liver. So my son needs to get a blood test once every two weeks to monitor the function of the liver for the ammonia, AST and ALT values. Prior to going down to Ecuador my son's liver enzymes were much higher than the normal range (I don't have the exact numbers in front of me, but if anyone wants we can produce those details).

So, the medicine is like a double edged sword in my son's condition. It is doing its job, which is to primarily control the generalized tonic clonic seizures and to somewhat subdue the myoclonic and absence seizures. But not too well. At the same time the medicines, which are heavy duty in nature provide a toxicity to the body which puts the body under metabolic stress. my son's neurologist once explained to me that less than 1% of every pill that he takes makes it into the nervous system. Additionally less than 1% of that 1% makes it to the damaged neuron. So what happens to the rest of the medicine? It gets broken down in the liver and provides a toxic effect on the individual. My son's veins were visibly swollen and red prior to the trip.

My son's epileptic seizures are multifocal in nature. Meaning that the best MRI, CT & PET Scans did not illuminate any abnormal physical material of his brain. However, the EEG's all expressed the abnormal electrical activity of his nervous system.

Dr. J. explained to me that if you were to focus upon and magnify one of the focal points of abnormal electrical activity in his brain you would observe a neuron surrounded by a mass of brain tissue. Now, this neuron would either be a cerebral edema or dead tissue (scar tissue).

Determining the ratio of cerebral edema to scar tissue in my son at the time of treatment was next to impossible. However, the cerebral edemas of my son's brain are significant because they are akin to sores within his brain. The neuron within a cerebral edema is composed of many cells. The cell membranes of the cells that make up the neuron within an edema do not allow for much oxygen or water to permeate through the sodium-potassium ion channel and diffuse through the cell membrane. Hence, the logical reason of the abnormal electrical activity. In other words my son's poor brain was starved and choked for oxygen. His brain cells were not receiving the proper amount of oxygen to keep his brain from functioning properly.

So the procedures and treatments, what are they and how do they work?

To allow the cell membranes of the neurons within the edemas to allow for the diffusion of oxygen to their proper abilities, electrical stimulation is utilized. The tool used for this electrical stimulation is called the Alpha Particle Stimulator Box. This is a box about the size of a phone booth that is lined with carpet on all sides, except for a small two square foot window on one side of the box. The patient(s) sits on a chair in this box for fifteen minutes and nothing more. Above the patients' head is a small compact fluorescent light bulb. Just below this light bulb are two white discs. Each white disc is hooked up to two wires a piece that are in turn attached to a machine housed on the outside of the box above the head of the patient. The machine is Russian made, for the letters are all of a cyrillic alphabet. However, the numbers tell of the units of measure of the machine.

Essentially, this machine sends low level intensity electrical impulses of wavelengths and frequencies in the low microwave range @ 0.25 - 0.28 micro volts, equivalent to about 2 - 3 Hz. A very low amplitude current runs through the wires and to the discs inside the box. The electrical and radioactive signal running through the box is modulated at 0.25 - 0.28 micro Amps of energy. Additionally, there are two bare wires on the interior of the box that are located opposite to where the light and two discs reside. These two wires return the electrical energy that is going from the inside of the box back up to the machine thus completing the circuit.

So, the patients are sitting in this box which is now electrified and radiating energy. The frequencies and wavelengths of energy in the box are picked up primarily through our auditory nerves which sends the electricity through the temporal and parietal lobes over to the frontal lobes of the cerebrum in (as Dr. T. explained) a call-and-response mechanism of the mind. The path of electrical energy goes from the machine to the wires through the discs into the box into our auditory nerves and back and forth in our brain and then out the bare wires and up and in to the machine thus completing the circuit (oops I already used that phrase).

Now, the purpose of this particular treatment is that by ever so slightly stimulating the neurons of our mind from the inside out we can allow for a greater potential of oxygen to diffuse through the cell membranes. Especially the ones that are contained within the cerebral edemas. By stimulating the neurons within edemas the facilitation of oxygen to permeate the cell membranes can allow the edemas to heal. Thus, allowing for the neurons to return to their potential normal function.

My son underwent two Alpha treatments of 15 minutes at a time twice per day for approximately one month. Additionally, my wife and I split the Alpha treatments each and every day. After sitting in the Alpha box for 15 minutes I can attest that from ear to ear the back of my brain felt as if I had gone through a 7 hour marathon writing session or like I studied for a major examine for 7 hours. Additionally, my brain was so stimulated that I did not feel like sleeping. Not that I couldn't fall asleep at all. Just that I was awake. When finally I did sleep I would wake in the morning feeling clear headed, bright-eyed and bushy-tailed as if I had already had a cup of coffee.

Now that the brain has been stimulated by the Alpha chamber, the oxygen needs to be pumped into the body. The other major treatment that allowed for my son's remarkable recovery is Hyperbaric Oxygen Treatment (HBOT). Now that the cell membranes of the neurons within the edemas of the brain are stimulated to allow a greater potential of diffusion of oxygen across their thresholds, the oxygen delivered to a patient within the HBOT Chamber will saturate the oxygen deprived regions of the mind. Primarily the edemas.

Once this was properly described to me, I for the first time understood why the HBOT that my son completed in California helped only a little bit. The reason that HBOT alone is not effective for people with neurological disorders is because the neurons within edemas will not allow for the proper diffusion of oxygen across the sodium potassium ion channels to permeate the cell membranes within the neuron as the body would normally require. Hence, one can go into an HBOT Chamber for 20 years or more and not receive much of an alleviation of symptoms because most of that oxygen is not making it past the cell membranes of the neurons.

That is the main reason why HBOT has not been proven to be effective for patients of neurological disorders like epilepsy. For conditions such as burns, the bends, and several conditions of a cardiovascular nature HBOT has been proven to be extremely effective. I have no doubt about the fact that HBOT can be just as effective for neurological disorders like epilepsy, cerebral palsy, multiple sclerosis, stroke, brain aneurysms, autism and a host of others. My wife and I witnessed this phenomenon in just about every patient in Dr. T.'s care. HBOT alone, not much help. HBOT combined with Alpha waveform stimulation lots of help.

So, my son accompanied by either my wife or I would sit in one of two HBOT chambers for about an hour at a time. We alternated each day. One day she would go and the other day it would be me.

Now if Alpha Waveform stimulation can allow for a greater diffusion of oxygen into the cells than it would be logical to think that there would be an equivalent amount of diffusion of metabolic waste diffusing out of the cell. I think the HBOT chamber because of the increase of pressure allows for the flow of oxygen into the cells and the metabolic waste out of the cells to be an efficient procedure.

As my son went through the treatments the swelling of the veins as visibly discerned through the skin reduced dramatically. To the point where his skin and the flesh beneath the skin now appears to be normal.

What else do they do you ask (or maybe you don't, but I'm going to tell you anyway)?

The treatment I liked the best the Ozone Jacuzzi. Picture a converted bathroom, no toilet, just a bathtub and a narrow rectangular table with a machine on top. The bathtub is a jacuzzi tub. Attached to the tub and the machine is a long black plastic hose. The machine is called an RTO3 machine. The machine has several dials on it including one for a timer. The machine apparently converts Oxygen (O2) into Ozone (O3) and pumps the ozone through the hose, into and through the bathtub's jacuzzi jets.

So there in the jacuzzi tub my son and wife or I (we alternated each day) would sit luxuriating in this ozone jacuzzi for 15 minutes at a time. Talk about therapeutic, even if this scientifically does nothing for a neurological condition at least it is pleasant and relaxing. I sat in there and I can say that it is very calming and relaxing.

The purpose of this treatment is as follows. Apparently the rectum takes up most of the O3 and this is supposed to allow for a greater or more efficient flow of oxygen through the blood vessels of the body on up through to the brain. Facilitating a greater flow of oxygen through to the brain would be very beneficial for the optimum function of the brain.

I've heard of ozone treatments and/or therapies available in the United States, however, these treatments are relegated to the category of alternative therapies or fringe treatments. Additionally, there is plenty of information regarding Ozone treatment available on the internet.

The fourth and final treatment that my son received each day was called the Ultrasonic Cellular Massage. This consists of a machine that produces an electrical signal similar to that of the machine on the Alpha particle stimulator box. The machine generates an electric current of 0.25 - 0.28 microAmps. Emanating from the side of the box are two wires. These two wires are about 3-5 feet long and are attached at the other end to two leads. The two leads are attached on the outer side of a double-lined plastic bucket. The bucket is approximately three feet in diameter and is filled with warm water. The patient places his two feet into the bucket of water for fifteen minutes while the machine is generating this low intensity field of electrical energy.

The first time I witnessed this crude solenoid (battery) I nearly freaked out. My understanding was that people should not touch water that has an electric current running through it. However, I had to trust that 30 years of training these doctors have some sort of idea what they are doing. The electric current running through the water was less than that of one AAA battery. Still this was unusual and freaky.

So, they turn the machine on and then the doctor takes a small (6 inch) fluorescent light bulb and puts it near the water. The light bulb lights up with no wire running through it at all. He then rubs the light bulb up my son's leg --> torso --> shoulder --> head --> other shoulder --> my hand which is on his other shoulder --> my head --> my other shoulder --> and down my other arm. All the while the light bulb held its current, which proved that the electrons running through the low level electrical current was flowing up and down the body and anyone who was touching my son's body.

The purpose of this treatment is to pull a good deal of the energy, which the brain received from the Alpha particle stimulator box, down through the nerves all the way to the feet and back up again. I like to think of this process as strengthening the electrical potential of signal strength inside of the wiring of our nervous system otherwise known as our nerves. Also, as the doctor's described it you tend to spread out the Alpha from the brain on down to the rest of the body.

This was the only treatment my son completed solo, throughout the entire trip. It seemed to have a positive effect and it makes sense. As I described earlier the Alpha treatment made the back of my head feel used and apparently that region of the brain remains stimulated for a good deal of time. So if there is a greater stimulation of electrical energy in the back of the mind it would make sense to pull that energy down and spread it out through the whole body.

A Google search of Ultrasonic Cellular Massage brings up a slew of websites, some of them may be related to what Dr. T. utilizes but for the most part they are related to cosmetic beautification and related treatments.

Today marks exactly two months since my son has had any seizures. His EEG's still show some abnormal electrical activity. The Delta waveform has significantly reduced towards a more normal level, but continues to remain relatively high. I mean after all he has a very complicated and difficult to manage version of epilepsy. So, by the analysis and methodology of the modern neurologists the EEG will still show waveforms of a patient who has Epileptic Encephalopathy.

Interestingly enough the night before the first treatment my wife gave my son his favorite meal for dinner, Mac 'N' Cheese. His appetite was almost non existent and he was refusing to eat almost to the point of force feeding him. His weight prior to the trip was about 31 pounds, kind of light for a five year old. The treatments were split between the morning treatments and the afternoon treatments (usually one Alpha treatment followed by the Ozone Jacuzzi in the morning and the HBOT followed by the Ultrasonic foot massage and the 2nd Alpha treatment in the afternoon). After the first set of treatments in the morning of the first day, my wife and my son went to have lunch. Apparently my son pigged out and my wife was not only surprised but she was amazingly relieved. Since that first day of treatments my son has been eating well and as I stated before he gained seven pounds on this trip. In this day and age of childhood obesity is extremely rare to find parents who want their five year old child to pig out, and in this case it is warranted.

The Alpha waveform has risen from 3% to about 9% the norm is between 10 - 15%. According to Dr. T. the Delta cannot be affected by any other waveform of energy other than the Alpha. So by increasing the Alpha the Delta can be reduced. Additionally, as mentioned earlier the medication my son takes is heavy duty and is like a double edged sword to his disorder, it helps at the same time as it hinders. Well in this respect it is somewhat reducing the effect of the Alpha waveform to pull the Delta down into the norm. So, my son's Delta appears, to the neurologists to continue to be abnormal.

The fact that my son is so close to being rid of this disorder once and for all is just short of a miracle and we are all counting our lucky stars that there is someone out there who is able to fix a problem. The outlook for my son is promising. We will be returning to Guayaquil, Ecuador for another round of treatments in November. This next round of treatments will last a month. The doctor is hopeful that the Alpha waveform will be brought up in to the norm (between 10 - 15%) and he thinks that the Delta can be brought down from its current level of 50% down to the normal level for his age (between 30 - 40%).

The success of these treatments are virtually permanent. As Dr. T. described to me there are but two conditions that would allow for my son's condition to descend back to his prior level of seizures.
1. If for some stupid/foolish reason we were to change his medicine.
2. If he received some kind of blunt force trauma/

These two scenarios are very unlikely. The doctors in Ecuador furthermore stated that they have never seen a patient of my son's age and condition to revert back to his/her prior condition at all. The doctors also stated that out of all of the patients that have had epilepsy that are my son's age (and they have had many over the last 30 years) he responded the quickest to these treatments.

The fact that my son is back from the brink of existence is amazing and just short of a miracle. The fact that no western medical healthcare practitioner in the United States utilizes these treatments, practices and procedures is just short of a crime in and of itself. I mean someone from the modern western medical healthcare profession should at least turn their attention to study these treatments and procedures to determine if they have merit. We have a medical system that currently concerns itself with the financial and administrative considerations (profit or loss, good or bad) while not taking the pains to concern itself with the care of the health of the human being. Which is what health care is intended to be used for. Instead what we are left with is a health care system that continues to treat, manage and further the continuance of problems and disorders while poisoning the body with dangerous chemicals, molecules and medicines. Now there is a lot of merit and benefit to many of the medications that the pharmaceutical industry spits out on a daily basis, no one can deny this. However, the modern western medical healthcare practitioners are forced and believe that they are justified to rely solely upon medicine to alleviate symptoms and provide the care to the patients suffering from complicated disorders. I truly believe and now I know that there is another way and probably many other ways.

Modern western medical healthcare practitioners pretty much have the cardiovascular system down. That is to say we can keep somebody alive if they have a problem with their heart, blood, or blood vessels to much higher degree than with any other organ system of the body. I believe we need to turn our attention to the multitude of disorders in the body that can be affected by the simple fundamental scientific truth of our bodies: The brain needs oxygen to function and keep the body alive and the nervous system oscillates with electrical energy. I don't mean to get on a soap box and politicize too much. However, it infuriates and baffles me how we had to travel half-way around the world to a second or third world nation (depending upon who you talk to) to receive treatment that is far beyond the capacity of the doctors in the United States to even begin to understand. The reason that these treatments are not available in the United States is manifold and that is a topic for the next post. I welcome any and all comments and I commend you for the intellectual fortitude and patience to read through my family's amazing experience. Until next post, be well.

Help on the Way

My intention with this blog is to make sure the readers are interested and potentially captivated by the amazing success of our son's condition. So as not to repeat the information from the previous post I will continue with the story as follows.

My wife and I were witnessing my son's condition going downhill and rapidly. He was seemingly turning into a wraith right before our eyes. Our parents and family were getting concerned as well. My parents live on the east coast and are always supportive of our situation and decisions in life but they being geographically far from us felt challenged to offer concrete help for my son. Not to say that they are not supportive, they are extremely supportive and we know they love us very much.

My wife's parents are very driven to support their family in every endeavor that they focus upon. They are originally from Bogota, Colombia, speak fluent spanish and are very well respected and connected with many influential and important people living in Bogota.

My wife's father is a cardiovascular-thoracic surgeon, he was extremely concerned about his grandson's condition. His professional experience in the medical industry really opened doors for us to be able to allow our son to be observed by the best neurologists in the Los Angeles metropolitan area.

Additionally, my mother-in-law has been through many experiences raising her three children, two of whom suffered many medical situations (other stories for other times). Her experiences with medical professionals in concert with difficult to manage disorders among family members drove her to apply some familial muscle (so to speak). Through some people that she knew from Bogota she heard of a doctor in Ecuador who was doing amazing things for patients suffering from an array of neurological disorders. Additionally, this doctor apparently specialized in patients that suffer from epilepsy and seizure disorders.

When my mother-in-law initially proposed the idea of taking my son to be treated by this doctor in Ecuador I was initially averse and skeptical of the information. I tried to listened with an open mind. Her proposal of taking my son, a four year old, half-way around the world to a third world nation seemed to be from left field. The proposal consisted mostly of testimonials and personal interest stories from the parents of children who have benefitted from this doctor's treatments. Now, parental testimonials make for nice stories but personal interest stories usually have a habit of interrupting the race while I'm in the middle of watching the olympics. Let's get back to the race already.

The problem with the initial proposal was not what the doctor was doing, nor the fact that it was half-way 'round the world in a third world nation. The problem was simply that for me there just was not enough empirical evidence. Without the empirical evidence I could not envision that this set of treatments would have any benefit. I mean just because it works on someone else does not necessarily mean that it would benefit my child and hey, you know what? Ecuador is not just around the next corner. If they wanted me to sign on to this thing from the "get go" they should have given me some kind of scientific empirical evidence, something, anything that I could work with. I want to see numbers, "show me the money" give me something. The one bit of information that allowed for me to continue to consider signing on to this trip was that the treatments are non-invasive to the patient and display virtually no side effects. So, my interest was piqued.

The proposal was initially made in late February - early March. For the next three months all I heard about was this miracle cure in Ecuador. Something akin to the fountain of youth or a magic wand. That I'm being foolish for not signing on. I even felt like I was forcing myself into the antagonist's role and I was becoming an adversary to the people that I loved the most in this world.

Well my son's condition was not getting any better and my wife was stressed out of her mind and I wasn't too much better either. Call it tenacity, call it being stubborn, call it an innate sense of impending doom, or spidey-sense, but my mother in-law eventually convinced (more like broke down) my wife that this trip would be vital to my son's existence.

It was just about the time that the fiasco with status epilepticus at the ER of UCLA Med. Ctr. was going on that my wife became determined to go with my son to receive treatment from this doctor in Ecuador. With or without me, she was going. It must have been her motherly instinct that kicked-in because she was driven like I've never seen her driven before.

The bottom line again was the treatments are non-invasive and there are virtually no side effects. So, when it's all said and done; even if my son shows no response to these treatments what-so-ever, bottom line is four easy words: at least we tried. The only thing we'd be out at that point would be the money it costs. And besides, my wife's parents were willing to fund the entire endeavor.

I am by nature a genuinely positive person and I can only take being a negative influence and a skeptic about a topic for so long. Besides, I love my wife very much and I love my son even more. So in late May I begrudgingly signed on to this trip. I still had no idea what this guy was about, nor what his treatments and procedures are about.

For all I knew he could have been a medicine man with some ancient spiritual cure. Was he going to boil up some toads tongues and iguana eyeballs, put it into a broth and make my son drink it down while reciting some ancient, cryptic incantations with several wise-ones dancing around a bonfire? I had no idea and neither did my wife and in-laws.

So, I signed up for a trip virtually blind to the nature of the treatments. All I knew at this point was I was going to be putting my son up for experimentation from a doctor half-way round the world with just about no empirical evidence that his treatments were going to do anything at all.

In all fairness they told me that this doctor is a neurophysiologist and he conducts brain mappings on his patients. They further explained that they do Hyperbaric Oxygen Treatment (HBOT) and they have several tools designed by the Russians that are very effective, but not understood by anybody but the doctor.

So down to Guayaquil, Ecuador we went...

Wednesday, August 12, 2009

Intro - Background History of a Disorder

This blog is not intended to bash the medical industry nor the pharmaceutical industry (as if that can actually occur). The blog is intended to open people's eyes up to the possibility of certain treatments for patients of neurological disorders that can alleviate their symptoms to a much greater degree than what modern healthcare practitioners of today can possibly achieve. The treatments are girded in two basic fundamental scientific principles that are written in every modern high school science textbook across the world:

1. The brain needs oxygen to function.
2. The nervous system oscillates with electrical energy.

But first a bit of the background information otherwise known as the origins of our story, my family's story, my son's descent in a maddening world of seizures and the brick wall of the established medical community.

Since June 12th of 2008 my son has suffered from Epileptic seizures. My son was two weeks away from a much anticipated 4th birthday. Since then my family and I have been through the most challenging year of our lives. Seeing our son suffer in the most horrific spasms and paroxysms each and every day for well over a year was more than we could bare.

After his first three massive generalized tonic-clonic seizures I immediately pored myself into as much of the current/modern research of Pediatric Neurology as my ordinary brain could handle. I absorbed the Pediatric Epilepsy reference manual from John's Hopkins Press w/in two weeks. The same for Orrin Devinsky's Epilepsy Guide for Parents and Family, along with Pediatric Neurology and Epilepsy from Harvard Medical Press. The reference manuals all compliment each other upon the treatments and procedures upon the epileptic patients and the specific details of treating children therein.

The information communicated in these reference manuals are simple for the parents to follow, have tested and retested by the scientific methods of the FDA and the modern healthcare establishment and have been used time and again for over sixty to seventy years. Additionally, these manuals all communicate the same procedures that are being used the world over by modern epileptologists and neurologists. New information, research and experimentation upon the human subjects regarding the treatment of epileptic patients is a slow and laborious process that often does not become absorbed into the modern treatment of the patients for years.

Anyway onto our story:

From June 12th - July 3rd, 2008 my son suffered three massive generalized tonic-clonic seizures. The third of which proved to be the biggest gut-checking moment of my life. July 3, 2008, My son was convulsing for approximately 30 seconds when I noticed he went blue in the face and was not breathing. The entire seizure lasted approximately five minutes (apparently a very short amount of time for a tonic-clonic seizure according to the epileptologists in the 3rd greatest medical facility in the USA - UCLA Medical Center). My son was not breathing for about two minutes. In that time I yelled to my wife to call 911 and leave the room, because she does not react well to seeing her son in a seizure. I then laid him down on his side (like all the manuals instruct parents to do) put a pillow under his head and stroked his head and talked to his ear: "it's going to be fine, you're going to get through this, you just need to breathe, you're going to breathe, you need to breathe." I then rapped him on his back with the heel of my hand three times. His body still in the throws of the convulsions. Then, like the cogs of a rusty gear box in a car long out of use he gave one raspy breath, and then a second raspy wheeze and finally a third raspy-wheezy breath until finally his respiration became normal and the blueness of his face faded. The ambulance came and transported him to the ER of Tarzana Hospital, where we spent the next two days under observation of the Pediatric Neurologists.

None of the Tonic Clonic seizures were accompanied by a fever. Hence the seizures are considered to be non-febrile in nature. However, our first neurologist decided that to rule out any possible neurodegenerative diseases she ordered a "Lumbar Puncture" for our son. My wife and I immediately decided that under no circumstance would we allow these doctors to run a spinal tap on our son without there being a life-threatening need to do so. There was no need to do so because the results of the scans (MRI, CT scan, EKG) showed no symptoms of neurodegenerative diseases.

Since July of 2008 we have had our son examined by several of the most highly regarded epileptologists in the west coast. Meanwhile, our son's condition (under the care of these amazing doctors) descended from those initial three tonic-clonic seizures to hundreds if not thousands of myoclonic seizures (evidenced by head drops, head jerks, leg drops, arm drops, missing of a step while walking, etc...) absence seizures (evidenced by staring spells and our son being listless like a zombie) and a plethora of other symptoms like lisping his words, being stuck on one sentence for five to ten minutes, stammering, stuttering, uncoordinated muscular control, inability to draw a circle or smiley face and many others.

Throughout the last year our son has suffered a total of 16 generalized tonic clonic seizures and thousands of myoclonic seizures and all of those others symptoms previously mentioned. The doctors, meanwhile, offered us a choice of medications to attempt to manage the seizures, along with the treatments and procedures of the aforementioned reference manuals. Why they offer a choice of medications is beyond my wife and I. We are not the authority in pediatric neurology, nor are we in a position to have even the slightest idea of which medication is best for our son. If we as the patient's parents are to be making the official decision of which medication is best, then I believe we are entitled to a portion of the doctor's pay check.

However, while these medications for the most part controlled the generalized tonic clonic seizures, the medications just could not significantly control the myoclonic seizures or absence seizures for extended periods of time. In all our son has been through seven of the most commonly prescribed epilepsy drugs. The medicines our son has been through are as follows: Lamictal, Keppra, Felbatol, Tegratol, Depakote, Zonegran, and Diastat (a rectal valium only given when in a generalized tonic clonic seizure for 3 minutes or more).

Each of these medications are heavy duty and comes equipped with a long and lengthy list of side effects. Some of the side effects our son exhibited and some he did not. Yet all through this period of time knowing that our son's growth could potentially be impeded by the severity of these heavy duty drugs in combination with each other left my wife and I in a state of fear, anxiety and stress the likes of which we have both heard of but never experienced.

Life goes on, I had to continue to work, my wife took some time off from her studies and her career to provide a greater level of care to my son. She had to bare the brunt of seeing him day in and day out seizing and convulsing almost nonstop. All the while we consulted with neurologists, who, when pressed with the truly important and challenging questions about our son's outlook, prognosis, and the potential causes of his condition could not summon up much more of a response beyond: "I do not know" or "we just cannot say". We felt like we were trapped between a rock and two hard places:
1. The rock: Our son being a potential guinea pig of the Pharmaceutical industry.
2. The hard place: The defensive postures of the Neurologists fearful of potential malpractice suits.
3. The other hard place: The demands of the insurance companies and our modern healthcare system.

However, I do not want to veer into politics too much.

My wife and I knew that our son was not getting any better. Was he getting any worse? It was hard to say. My son's neurologist at this time is considered by many to be the preeminent authority of pediatric epilepsy. He is one of the most highly regarded, lauded and trusted neurologists in the world working out of one of the most prestigious medical centers in Southern California. He was my son's neurologist from July of 2008 through November of 2008. He told us that his condition of Epilepsy was not among the more severe, that there were plenty of other patients that were tremendously worse off than Zachary. Are we supposed to discount the testimony and gestalt of the preeminent authority in pediatric epilepsy? However, we both observed every day my son's condition descend further into the land of the unmanageable disorder. We both knew that the modern healthcare practitioners were not doing enough to prevent my son from getting worse, and that they probably could not do anything other than what the manuals, and their training prescribe.

Bottom line our son was going down and fast.

My wife and I turned our attention to alternative therapies such as Hyperbaric Oxygen Treatment (HBOT). We searched for a while until we found a facility in Ventura County California that we felt comfortable with. Now we both researched the potential ramifications of HBOT and understood that HBOT has not been shown to conclusively make a dent into any neurological disorders. Nor has HBOT been proven to help alleviate symptoms into any disorder other than the Bends, Burns, and some cardiovascular issues. However, we were thinking outside of the box and were starting to truly doubt the veracity of the modern healthcare practitioners assigned to my son. So in January and February of 2009 we gave HBOT a try.

The initial HBOT Sessions alleviated my son's condition by a small margin (@5% at the most) but nothing to write home about.

Meanwhile, the doctors continued to change medicines and we were on to our third neurologist by this time. On April 5, 2009 the neurologist prescribed Depakote for the first time. The following three weeks my son was seizure free (the so-called honeymoon period of epileptic medications). For 5 days from April 30th thru May 4th he was convulsing almost nonstop for a 24 hour period (exemplified by Myoclonic seizures, Partial focal seizures, and Absence seizures). The condition is called Status Epilepticus where a patient is seizing uncontrollably for a significant period of time.

We gave him for the first time the rectal Diastat to control the convulsing and then brought our son to the ER at UCLA Medical Center. There they put him on an IV drip of Atavan which controlled the seizures for about seven hours.

Meanwhile, our neurologist was communicating with the epileptologists at UCLA Medical Center but never visited us (she did not have privileges at UCLA Med. Ctr.). The neurologists assigned to my son at the ER that evening told us that we have a choice to make: we could either keep him here in the ER or you could bring him home with you and keep him under close observation and consult with us and your neurologist. So after about 50 questions to the neurologists on call at the time we decided that he would be more comfortable at home.

On May 2nd he again went in to Status Epilepticus. We brought him back to the ER at UCLA Medical Center again where they gave him a video EEG, a blood test and more Atavan which brought his condition back under control. The blood tests showed an extremely elevated level of enzymes in the liver (otherwise known as the AST and ALT values). Something caused his liver to go toxic.

Our current neurologist, originally worked under and studied under the aforementioned preeminent authority in pediatric neurology. We like her for she is amazingly intelligent, knowledgeable, soft spoken and shows a genuine concern for our son that the previous neurologists were not showing.

She found out that we gave my son the generic version of Depakote. She never delineated on the prescription whether or not my son should be given the patent or generic version of Depakote. She did not communicate to us the issue of generic versus patent, nor had any of our doctors once spoken to us in the past year of the issue of generic versus patent in regards to the medications in my son's condition. nevertheless the reason that my son's blood tests showed an elevated level of liver toxicity was due to the fact that he was taking the generic Depakote.

Our current neurologist deflected the situation on to the Pharmacist while the Pharmacy deflected the situation back to the neurologist all the while our son was still showing toxicity to the medication. My wife and I were extremely pissed but did not know whom to be pissed at. I immediately went to the pharmacy to complain and they were very understanding and exchanged the generic for patent immediately. Beyond that we let the issue drop (all the while not sure if we were wrong to not pursue the issue and still befuddled by this conundrum).

At this point my wife and I were now akin to the stereotypical parents mentioned in the particular chapter set aside for such individuals in those aforementioned reference manuals.We were tired, stressed, anxious and horrified by what we were witnessing on a daily basis.

Our families were becoming quite cantankerous (at the doctors), and very concerned. A good thing that they were for without their help I would not be composing my thoughts and writing in this blog at this point in time. For every dark cloud there's a silver lining so the saying goes. While this tale is not at an end help would be forthcoming in a very unusual, and unassuming manner.