One year ago, on the evening of February 19th, 2004, my little girl Tasya went into the worst seizure of her life, a six hour grand mal. The doctors didn’t think they could stop the seizure, until a brilliant emergency room doctor realized that what was happening. He realized she was responding to an allergic reaction to the medications they were using to try to control her seizure.
Early on the morning of the 19th, Tasya seemed a little twitchy, something we were trying to deal with by trying the ketogenic diet at the request of her pediatric neurologist. He was getting dismayed that she was getting worse after the years of remarkable seizure control. At our last meeting with him, my wife Hillary and I asked if it were possible that Depakote, the drug he made us put her back on, could have been causing the increase in her seizure activity. He didn’t think so and wanted us to increase the dose despite our stern reservations.
Tasya went to school that morning, putting forth her brave face, looking better than the day before but still not 100%. About an hour later we got the call from the school. She had a “shake” and was looking quite twitchy. When we picked her up, she was having small shakes every 30-60 seconds.
When we got her home, Hillary called the neurologist who immediately wanted us to get some Ativan® in case things got worse, and to increase the dosage of Depakote to get things under control. Little did we know that this was the absolute worst thing we could have done. Throughout the day, she got worse and worse and worse.
That evening around 7:00 pm, knowing that she was in horrible shape, I asked her how she felt. She looked up at me, smiled and said ok. I knew that before me was one of the bravest people I had ever met in my life, my little daughter Tasya. How she could muster a smile after having as many seizures as she had endured was beyond my comprehension.
As she finally fell asleep, my wife and I decided that we needed some sleep ourselves. So after our youngest child Anika fell asleep, we went to bed. A few hours later, we woke up to see Tasya in the midst of a full-blown grand mal seizure. We gave her a rectal infusion of Ativan®, but nothing happened. This was getting serious. She needed medical attention so we put her in my wife’s car and Hillary raced her to the emergency room while I stayed with the baby.
I began to drift to sleep, not knowing that the phone was off the hook. Hillary had been trying to call me, but she couldn’t get through. Around 3:00 am, I heard the doorbell and noticed that there were police car lights flashing outside. A sense of dread I had never felt in my life came over me. Was my sweet girl still alive or not?
The sheriff’s first words, perhaps sensing my fear, were that my daughter was still alive. He explained that my wife was trying to call me but the phone was disconnected. I raced to the phone after thanking the officer and called my wife. Tasya’s seizure was just starting to end, but I needed to get to the emergency room right away. Immediately, I put on my shoes and went to get the baby when the doorbell rang again. This time it was my in-laws who had drove miles from Lake Tahoe to get me.
I was a mess, in tears, lost in my fear of what was happening to my lovely daughter Tasya. When we got to the emergency room, Hillary was a little peeved at me for the phone incident but was pretty positive that things were finally getting under control and that Tasya’s seizure was abating. The doctor told me that she noticed that the reaction she was having every time they tried Valium was a kind of a rash. She tried Benedryl and the seizure stopped.
A few moments later, she started seizing again and the doctor immediately gave her another shot of Benedryl and that was the last of the seizures. They decided to put her into a Phenobarbital induced coma to protect her brain for the next few days, if she survived at all.
What the doctors and nurses didn’t want to tell us, but I knew, was that they didn’t expect her to survive, or at the best she’d continue to have seizures and degrade physically. This is what happens with a progressive form of epilepsy.
One Year Later
Much has passed since February 19, 2004, but the most astounding thing has been the transformation of Anastasya Janine Schauss. Since that weekend in pediatric ICU Tasya’s world has changed. Ever since she’s been off Depakote, the frequency of the atonic drop seizures have diminished greatly (still can’t handle sleep deprivation, aspartame or MSG) as have the nocturnal seizures.
My wife and I decided that we would no longer let the doctors force us to put her on medications that we didn’t feel comfortable with. I had additional lab tests done and focused on following a regime of nutritional support to balance her chemistry. For the second time in her life, she improved. With the help of a balanced amino acid regime, antioxidants, B-complex nutrients and electrolytes we got our daughter back.
Tasya’s last EEG showed no abnormal activity while awake, even with strobe lights going off around her. A little bit of activity while sleeping, but this is a far cry from the constant seizure activity she had the year before. We still have a long way to go but we see hope in her future and through all of the newer information we’re discovering, there may also be hope for the thousands of people out there suffering from seizure disorders.
Check out Epilepsy - A Child's Case Study for the original posting of Tasya's story.