Looking back, all of the signs were there for months. Huge drool spots on the pillow, difficult to wake up some mornings, random weird slurred speech during the day (almost mumbling), etc… we never realized any of it at the time. Sometimes I want to kick myself, but who knew?
Our wake-up call was Super Bowl Sunday, February 7, 2010. We were driving to a friend’s house about an hour away for a party and we stopped at the supermarket to buy some deserts. I grabbed some brownies and headed for the checkout register. I was in the store maybe 3 minutes. As I was waiting to pay, someone ran into the market and yelled as loud as they could, “IS THERE A DOCTOR IN THE HOUSE… THERE IS A LITTLE BOY NOT BREATHING IN THE PARKING LOT!” Just writing that sentence is painful and brings me back to that day. The first thing that came to my mind was how terrible and I couldn’t imagine if that were my child. As I was thinking this for a second I looked outside to my car. All of MY car doors were open, my wife was in the parking lot screaming… WAIT… WHAT?!? That little boy was MY little boy! MY beautiful, funny, happy, smart, innocent son Alexander.
I sprinted to my car to find a blue faced lifeless body leaning unconscious strapped in a car seat. A woman was attempting to give him mouth to mouth resuscitation, and as I took over and began to unstrap him, she felt his chest and said his heart was beating. Everything was happening in slow motion and nothing is adding up.
Within minutes there was an ambulance on scene. Alex was still unconscious and unresponsive but started to get the color back in his face. We went into the ambulance and headed for the closest hospital. It was the second longest ride of my life. During our ride to the hospital, my son started to wake up but still couldn’t speak, couldn’t open his eyes, and started to cry. When we arrived at the hospital, he was more awake and was becoming himself again. He didn’t remember anything, including the ambulance ride to the hospital. We still had no idea what was happening. After about 6 or 7 hours, many doctors, many questions, we were told we needed to be transferred to a hospital with better facilities that could give him an EEG. They believed he had a seizure.
We packed up and started our transport to the new hospital. Alex was is in the ambulance with my wife, and I’m driving behind them. The ride was going to be about 45 minutes. About 15 minutes into the ride, the ambulance put on the flashing lights and started to speed up. I tried to call my wife but she was not answering her phone. Remember I said the ride to the first hospital was the second longest ride of my life? My son was blue earlier in the day, I didn’t know what was going on inside the ambulance, and the lights on sent me into a full panic and this was by far the longest ride of my life. I called the ambulance company and demanded they call the driver to find a status of my son. Thank god I found out they were only saving time and everything was stable… but the ten minutes until I found out what was happening felt like hours.
We finally arrived at the second hospital and they were waiting for us. Alex was admitted and first thing in the morning he was wired for his first EEG first. A few hours later, the head Neurologist and epileptologist came into the room and started to give us the results of his test. He said he saw a couple very small “blips” on the EEG. I asked if a blip was a spike, and he smiled as if he was surprised I knew what that was, and he replied yes. One major part of our story is I had “childhood epilepsy” and thought it was behind me when I outgrew it.
One month later Alex had another seizure in the car when we were driving home from New York where we were actually getting a second opinion that day. After his second known seizure, we proceeded to spend the next eight days in the hospital. Based on his EEG results and family history, the doctors recommended that we start medication. Considering I was on medication and it seemed successful, we agreed.
The first 18 months Alex was on low doses of Keppra and everything was quiet. Out of nowhere, Alex started seizing again and more frequently. We raised his meds, still seized... raised again, still seized. This pattern went on for months. Our doctors then suggested adding a second medication so we added Lamictal. We didn’t know any better and we agreed. Alex still seized. As his medication continued to increase on a monthly basis, his awareness and “presence” declined. We were losing our son. He was basically a walking zombie. Over the next year we continued to raise meds and he continued to seize. Nothing was helping. Finally in December of 2012 after another seizure and EEG, our doctor said Alex’s results were very bad and we should consider a third med. We discussed the options and felt it would be better to look into diet as a way to help. What did we have to lose?
Two days later we met with a dietician at NYU Langone Medical Center. We were so anxious that we started the diet four days later from home with no training.
We were told we had to commit to the diet for three months to get a fair opportunity for it to work. We fully committed and did not allow any wiggle room at all. We weighed every single fraction of a gram; we were label crazy about ingredients and even verifying some labels that we felt were not clear enough. We implemented the diet as strictly as we could to make sure we gave it the best opportunity to work.
We had a follow up three months later, in March of 2013. The doctor came into the room, sat down, looked at us, smiled and said “I can’t believe it.” His EEG results were exponentially improved. Both day and night spikes reduced. His memory improved, his reading comprehension started to come back, his personality showed again, his balance and coordination were returning to normal. We were getting our son back! AND it was overwhelmingly obvious why.
The strength and courage our son Alexander has is inspiring. He has never complained about his diet and has followed it religiously. He is the motivation that keeps us going because we know this is the answer to the seizure control and life we wanted and desperately needed. We are far from the finish line, his spiking is still active, but since we started dietary treatments in December 2012, we have been seizure free. Alex is a straight A student, plays travel soccer, baseball, basketball, a black belt in Tae Kwon Do, and the friend that everyone enjoys being around. We couldn’t be more proud of him. We also could not have done it without the support of our family, friends, and medical care. All have been exceptional and we couldn’t be luckier.
We want to pass along our experience and help others to hopefully find the answers they are desperately looking.
With all our love and support,
Scott and Lori