NEONATAL SEIZURES. ARE YOU SURE?

I am a physician with no previous expertise in epilepsy. Here, I am only given a personal testimony as a parent and not as a clinician. I am making no claims, neither promoting a specific approach. Each case should be considered in an individual basis. My wife prompted me to display here our experience in order to promote awareness and why not hope. My baby daughter started to have some “weird” movements since she was one week old. She had twitching in both arms (in medical jargon= “myoclonic movements”) during sleep that woke her up. They lasted for 20 seconds, she would open her eyes and stare all along. I kept this from my wife. I was in denial. “It can’t be”. I moved on. Later, when she was 2 weeks old, my wife saw it (the twitching). This time, she kept it from me. We moved on. When she was one month we both saw “them” together. Again only while asleep, when she was abruptly awakened, eyes staring, hands twitching, lasting 20 seconds, and falling back to sleep (medical jargon=”post-ictal”). She had three episodes that day. She was admitted to the ward and all labs came out normal (EEG, CT scan, blood, Lumbar puncture). We receive tons of reassurance by the neonatologists, cardiologists, and neurologists (all from a Children’s Hospital). We accepted their conclusion: “We are not sure”. But, deep in our hearts both of us knew we saw something”. We went home with mixed feelings and a prescription of Zantac for her reflux. She was 2 months old when she had an ALTE-like event (Acute Life Threatening Event= equivalent to a heart attack in adults). Ten minutes after being fed, as usual, she fell asleep. All of a sudden she turned stiff, blue, then she became flaccid and stopped breathing. I gave her CPR and she responded (All this happen in 1-2 minutes. I think someone else inside me acted during that chaos and despair). Again, she was admitted to the ward. All labs were negative and she was sent home with a heart/lung monitor in order to detect any respiratory failure and Zantac for reflux. We had poor expectations for finding out the cause of the seizures. Then, 2 weeks later, she had more episodes. At this time, we noticed that they happen only when she was awakened by a loud noise. We started to feel confused. Sometimes it seemed like a normal startle response, and other times it looked like a seizure. After these new episodes she was started on Phenobarbital. The episodes improved from a frequency of 3 a week before to once a week after the medication had begun. At the age of 3 months the 24hr video-EEG showed something (EEG’s are recordings of electrical activity in the brain without the need to actually touch the brain. In a similar way an EKG or electrocardiogram records waves from the heart using chest electrodes). The report said: “…a sharp spike 2-3 seconds…” . We were devastated. Initially, we had the remote hope that everything was going to be fine. By then, we had to admit our baby had epilepsy and we had to adjust and live with it. We were sad and upset no for us as parents but for her when her potential career as whatever-she-wanted-to-be was facing the risk of having those dreams threatened by a lifelong disease . She continued the Phenobarbital and was started on Trileptal. We went to an Epilepsy Congress and talked to so many experts. They recommended-- an always first step when in doubt—to get a second opinion. Despite the fact that we were very grateful and pleased with our pediatric neurologist we visited a children’s epilepsy clinic (specialized in only epilepsy) and showed them our videos of her “seizures”. Guess what, after reviewing the records and labs they think she had no epilepsy. At the end, each case is unique and different. Make your own conclusions.