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.