Hello and welcome to Elijah's story. His story of suffering, relentless strength, and eventually seizure freedom. Elijah experienced 100s of seizures a day and doctors labeled him as having epilepsy with an "unknown" cause. As parents, we truly felt that there HAD to be a cause. He was a perfectly healthy boy up to the winter of 2014 and we weren't going to accept the fact that now he was randomly having so many seizures that his quality of life was severly affected. I chose to write about his year of illness and what led us to find the answer as it was very hard to find information for myself while searching. I hope this blog can help direct you or at least inspire you to never give up the search for truth and light. More needs to be spread about the awareness of seizures and naturally treating them. But not simply naturally treating but becoming seizure free by giving the body the resources it needs to heal itself, not band-aiding the symptom with medication. This blog will naturally lend itself to be a resource for those wanting to live a clean life style as that has been the answer for us in healing our son and as a family, becoming a whole lot healthier. 


PART ONE 

Elijah had a very difficult winter of 2014-15. It all began in Disney Land where he arrived home sick with flu-like symptoms and his body just couldn't seem to kick it. Elijah is our thumb sucker, lending himself to pick up germs at any and every public place. Throughout the winter he had a total of 2 ear infections, 3 bouts of croup, an "unknown" bacterial infection, and lastly, a 3 week stint of the stomach bug. His body became weaker and weaker as the winter progressed and antibiotics were routinely given. Not once did a doctor ask if Eli had already been prescribed antibiotics. It is a known concern that doctors are over-prescribing antibiotics. It is very difficult for the body to learn how to heal itself and grow a strong immune system if bateria within the gut are killed, including the good bacteria. We noticed that once Elijah started the "antibiotic train" he was never able to fully recover. Now we are aware that while taking antibiotics one should be pairing it with probiotics. I wish the doctors had been educated regarding the use of probiotics in order to educate us, the parents. It seems no pediatriation, doctor, or even neurologist recommends probiotics in their line of work. One buys them over the counter and their purpose it to deliver good bacteria to the gut. Now all my children take probiotics daily.


Elijah's winter ended with the bout of the Rotavirus that I mentioned above, as did the whole family. The difference is that our bodies were strong enough to heal within a week while Elijah's bug lasted 3 weeks and ended with a tonic-clonic seizure on 18 March. "The tonic-clonic seizure is what most people think of when they think of a convulsive seizure. A person loses consciousness, muscles stiffen, and jerking movements are seen. These types of seizures usually last 1 to 3 minutes and take much longer for a person to recover" (http://www.epilepsy.com/). We had NO IDEA what was going on. We thought he was choking. We thought he was dying. Jeff ran him outside screaming for help and all I could do was hug Anthony and tell him his brother was in serious trouble. I knew there was a battle ahead of us. I knew deep down this wasn't simply a choking incident. We were brought to the local hospital where we were told he had a seizure and to contact Primary Children's Neurology Unit for an appointment. The appointment was made for 2 weeks later.


2 weeks go by and Elijah seemed fine. He did have a few seizures that are termed "myo clonic jerks" but they were small and we were hoping his body was simply "resetting". These happened to be all on the same day 22 March. His apt was the next day 23 March. When we saw a neurologist for about a 20 minute out-patient consultation. She was so quick to prescribe a medicine called Keppra. How can someone prescribe such a strong medicine that affects THE BRAIN without even knowing the patient? Without even an EEG!? "An electroencephalogram (EEG) is a test used to detect abnormalities related to electrical activity of the brain. This procedure tracks and records brain wave patterns. Small metal discs with thin wires (electrodes) are placed on the scalp, and then send signals to a computer to record the results" (kidshealth.org/parent/general/sick/eeg.html).  She made very clear that she was signing us up for a 2 year prescription.We hesitated one week from giving him this medication as we didn't feel it was the answer for Elijah.


That is until the Sunday after the appointment when he had a jerk so forceful that it flew him back on the ground. He was playing ninjas with his brother and Aunt Adrienne and Dad were in the room with me watching and laughing. Until he fell. We cuddled him and told him he'd be ok through his cries. It was that night we decided to medicate. He was given medication the next two days and he didn't have any seizures or side effects (which the side effects of all anti-epileptic drugs can be very devastating. Keppra is known to be the "safest" new AED as its worst side effect is serious aggression and thoughts of suicide. It's also often the first go-to drug for new patients). 


Wednesday we awoke and I went to teach my preschool class as he continued on to his own 3s preschool class down the hall. I had just gotten done telling his teacher, "Hey, if this is all medication means, then this is livable!" We both finished class and Elijah came into my room with his brother and ate lunch. I was helping Anthony wash his hands when I turned around and found Eli on his knees and seemingly stretching his arms out to reach something underneath the cubbies. I went to ask him what he needed and found he was having a tonic-clonic seizure. The 2nd one after his initial seizure at home and his first since starting Keppra. I scoopped him up and ran him down the hall where they called the ambulance. 

We were admitted into the hospital and upon entering I asked the neurologists about the Ketogenic Diet, famous for curing a young boy in the 70s. Their answer? That it is a last resort. It's too complicated and difficult for the average family to follow. I'm sorry, but don't give me statistics or lump me into the group of an "average" family. Who are they to know what we can or can't handle? They told us medication would be the first line of treatment and if further down the road we would like to discuss the diet again, then we could.The problem with neurology is that they have no idea what will work for each patient so its a guessing game and the patient suffers through it all. 

They began by assuming his Keppra wasn't at a high enough dose so they upped it. What happened immediately? More seizures. The Neurology Department's protocol is if one has a tonic-clonic lasting 5 minutes or more, or 3+ seizures in 1 hour (a cluster), they administer a rescue medication. In Elijah's case it was Ativan. This happened for Elijah every few minutes. One long seizure=rescue med. Each and every time they'd just give more meds. And more seizures followed. They tried Keppra, Depakote, Onfi, and Clonazepam.  


Jeff was stellar at taking notes and wrote down everything Elijah ate, drank, pooped, peed, and each and every eye twitch, jerk, or long seizure. Doctors would leave for hours as we'd witness his suffering. And all we could do was count. Count the seconds and minutes our son would shake in that awful hospital bed. The doctors and nurses told us Elijah would be severly worse if at home with no medication. They would never blame the drug. They told us this was our "new normal" and that this was seen with a lot of their patients his age. We begged the doctors to notice the seizure patterns that we were noting on the dry erase board. How could they not admit that Elijah's condition worsened immediately once he started these drugs? All the sudden he couldn't walk or talk, and was drooling at the mouth. This happened over the span of just 4 days. They admitted that they were trying to raise his depakote levels too rapidly and failed to check his ammonia levels until Jeff mentioned it as a side effect of Depakote. They gladly abliged to check and found his ammonia levels were too high for his liver to cope with, thus poisoning his body. He became a zombie in bed. Couldn't eat, color, even point to things he wanted. We demanded a weaning of all drugs and initiation of the Ketogenic Diet. They agreed.