Prologue
Gabriela Shufani was born April 4, 1989. She was a little over eight pounds with a full head of dark brown hair. She was healthy and happy and there was nothing unusual about her birth or her early development outside of the fact that she never crawled before she walked.
As a toddler she was assertive, verbal, confident, and loved wearing “twirly dresses” to dance around the house. The only medical issues she had during those early years were a series of ear infections and a slight concussion from a bump to her head, none of which had any long term consequences according to her pediatricians.
From years one through four, Gabriela attended daycare on the same campus where I worked as a purchasing agent. Each day we had lunch together and I would rub her back while she fell asleep at nap time.
She was a strong, independent kid with no developmental delays. At about four-years-old Gabriela occasionally complained that her head hurt. I told her doctors because I thought it wasn’t normal for a child to have headaches. Each doctor assured me it wasn’t anything to worry about and that I should just give her a Tylenol.
For kindergarten Gabriela went to a private school and her teacher called me in for a conference after only three weeks. Apparently Gabriela had been expected to know her alphabet and the sounds for each letter before starting school. The teacher recommended we put Gabriela back a year so we could prepare her for reading but instead I asked the teacher for one week to teach Gabriela the alphabet and sounds and she somewhat reluctantly agreed. To the teacher’s surprise, Gabriela learned everything that was required over a single weekend.
While Gabriela’s father was very involved in his daughter’s life while she was a baby, he lost interest by the time she reached elementary school. He and I divorced when Gabriela was eight and he moved out of state. After that he rarely visited Gabriela and has had very little influence on her life, so in the following story I don’t talk much about him.
During elementary school Gabriela sailed through her class work without any problems at all. Reading was effortless for her and by the end of second grade she was reading at a high school level. She loved school and every aspect of learning and during those first years her socialization was as normal as any other child’s.
Then things changed.
At nine years old Gabriela came to me one day very worried she had forgotten to tell me something that had happened the prior week. She was crying and explained that she hadn’t eaten all of her lunch one day and was so sorry for not telling me. I assured her it wasn’t a big deal and that she didn’t need to cry about it. When I had finally calmed her down enough to stop crying she ran to the bathroom and threw up with such force that it burst the capillaries in her eyelids.
That event was closely followed by her asking to stop piano lessons. When I asked her why she wanted to stop I discovered that she didn’t really want to but she was worried the door to the instruction room might close and she was afraid of being trapped in the room. I took her into our small bathroom and showed her the door hinges and how easy it was to remove the pins with fingernail clippers and open the door. She was relieved and agreed to continue with her piano lessons.
During the next lesson Gabriela was seated at the piano wriggling uncomfortably. I whispered to her, “What is in your pants?” She sheepishly pulled out the fingernail clippers that she had apparently smuggled in just in case.
That was the prompting I needed to find a counselor for Gabriela, because it was clear that she was anxious about something and needed help to figure it out.
From nine through twelve Gabriela saw a therapist pretty regularly but none of them thought there was much of a problem to resolve. They all felt that Gabriela was a pretty normal girl who just enjoyed being the center of attention and so she loved seeing a therapist because it was all about her for an hour.
Gabriela started the first year of middle school with her usual A and B grades. We had been living in Washington State and moved back to Southern California. While she enjoyed her studies, she struggled with making new friends.
After a few months in her new school she confided in me that she was eating lunch in the girls restroom because there wasn’t anyone at school she knew and could have lunch with. I brought her to work one afternoon after school to introduce her to a co-worker’s daughter of the same age who attended the same school. This gave Gabriela the footing she needed to build more friendships and she seemed to enjoy the rest of the school year.
By her second year in middle school it seemed the horrible teenage years had started. I consoled myself thinking I would get through those years no matter how difficult she made them for me. Gabriela did every annoying thing I had heard about teenagers doing; she was distant, her grades plummeted, and she was rude.
To make matters worse, frequently during our conversations she would stop speaking in mid-sentence. It was so aggravating. I remember pulling the car over one day and telling her I wasn’t going to move the car until she finished her sentence. She raged back at me that she had no idea what I was talking about and that she hadn’t even been talking. Her teachers became as annoyed as I was with her attitude and apparent apathy.
We continued with her counseling and added tutoring to the mix but nothing seemed to help her attitude or her falling grades. Gabriela had friends and socialized well with them but our relationship seemed to be typical of a teenage girl and her mother.
At thirteen years old Gabriela started her period for the first time and it happened while she was at school. The problem was that when I picked her up that day her jeans were blood stained from her crotch down to the middle of her knees and she didn’t think that it was a big deal to walk around school like that and apparently neither did anyone at the school! I felt incredibly embarrassed for her.
By her freshman year of high school the headaches Gabriela had suffered since early childhood started to get worse in both frequency and pain level. Each day that fall she came home from school and had to lie down with an ice pack. Her doctor still didn’t see this as a problem because Gabriela downplayed its significance during her appointments.
That same fall I accepted a job that was a ninety-minute train commute from home. Each morning we awoke at about 5:30AM so I could drive her to her Grandma’s house on my way to work.
On December 14, 2003, at about 6:00AM I left Gabriela downstairs as I made the last round of turning lights out before we set off for the day. When I came back downstairs Gabriela was laid out on the kitchen floor having her first Grand Mal seizure (what today is called a “tonic colic seizure“). I immediately called 911.
The diagnosis from the neurologist in ER and from Gabriela’s pediatrician was that the seizure was probably an isolated event that might never be repeated.
Gabriela felt that the doctors were correct but I, being a somewhat typical Jewish mother, waited for the other shoe to drop. Sure enough, on March 6, 2004, shortly after Gabriela awoke, she had her second Grand Mal and this time the doctors decided to medicate her for epilepsy.
After that second seizure I knew I needed to be closer to home in the event I needed to get to Gabriela quickly. Having to wait for the next train to make the slow one and a half hour trip home wasn’t an acceptable option for me so I asked my boss to “sever” me. After a few months of relentlessly asking he finally did just that.
I decided that I would work for a handy man which gave me the flexibility in hours I needed but resulted in a salary cut of over $100,000 annually.
I enrolled Gabriela in a neurofeedback training program because there’s some evidence that neurofeedback can help with seizure control by retraining the brain waves to stay in a normal range. Unfortunately our insurance did not cover this but it was something that both Gabriela and I wanted to try even though the closest practitioners were in the San Fernando Valley, a 45 minute drive.
We made four trips to the Valley every week for several months and Gabriela showed noticeable improvements in areas such as attention span and hormonal balance. The weekly commute became difficult to maintain, so we were offered an option of continuing with a local therapist who was willing to work under the directions of the more experienced therapist in the Valley. What I didn’t realize at the time was that she subsequently discontinued working with the experienced therapist and began working with Gabriela on an academic enhancement program instead. The result was the loss of the improvements that Gabriela had gained and our disillusionment with the therapist.
Neither I nor Gabriela liked the neurologist she had been assigned after her first seizure. He seemed disinterested and clearly didn’t want mom to participate during appointments so we looked for someone we could both feel more comfortable with.
Gabriela’s pediatrician recommended a young neurologist who was new in town. Both of us liked him right away but after only a few months he accepted a position at Cedars Sinai. This left us with no neurologist to help deal with any potential side effects during a medication change to a drug called Topamax that Gaberila was three-quarters of the way through.
The first anti-seizure medication Gabriela had been prescribed was Depakote. This had triggered a new condition, Polycystic Ovarian Syndrome, which would become a life-long problem for her. Polycystic Ovarian Syndrome is a severe hormone imbalance that causes symptoms such as male-pattern hair growth, irregular periods along with increased chances of obesity, heart disease, and some cancers. (It’s also cost us a fortune in laser hair removal.)
Finally we found William Goldie, the only pediatric epileptologist in our county. He is egotistical, rough, and sometimes downright rude but he is also honest about medication and lifestyle choices, and he spoke with Gabriela rather than at her.
The Topamax made Gabriela dopey and as a consequence she started to struggle with high school both socially and academically. I found out years later her “friends” at that time had been downright cruel to her. If Gabriela didn’t catch on to a conversation they would ask “What’s wrong? Were you having a seizure?” and then mimic her having a Grand Mal. To add insult to injury the school counselor wanted to move Gabriela down to low performing classes rather than make any kind of accommodation for her.
I asked to meet with Gabriela’s teachers and counselor to implement a 504 plan for her. 504 is a specific section of the Americans with Disabilities Act which requires public schools to accommodate people with problems like Gabriela’s. Much to my anger and disappointment, as I looked around the table of educators they all appeared disinterested and even put off by the conversation. The result of the meeting was that each teacher gave Gabriela a D grade; just high enough to get her out of high school without having had to really learn anything.
At the end of summer just prior to Gabriela’s junior year, she asked me to homeschool her. She felt she couldn’t return to public school and so in conjunction with Somis Charter Academy I did just that.
Gabriela graduated from high school in 2007 despite the fact that it was one of the two years the State of California decided that students with developmental disabilities and Individual Education Program (IEP) or 504 plans would not be allowed any accommodation while completing their competency testing in English and Math. Gabriela easily passed the English test but I ended up spending thousands of dollars on private tutoring to get Gabriela to the point where she just squeaked out a passing grade in Math. Never once was she offered any help by the public school system.
Gabriela was under the care of Dr. Goldie and taking Topamax, which is referred to as “dopamax” because of the way it can make an individual feel. While on this medication during high school, Gabriela suffered what’s called a psychotic stupor, she would sit staring off into space for hours, running and re-running delusional stories in her head.
Once, after we had sat through a full length movie at the theater, I asked her what she thought of the movie. She answered “What movie?” I immediately called Dr. Goldie and he instructed me to reduce her dose of Topamax by half immediately and let him know if there was any improvement in the next day or two. By the end of the second day Gabriela was better than she had ever been while taking Topamax. She was thinking clearly for the first time in years and as a result Dr. Goldie decided to start taking Gabriela completely off the medication.
This was also the first time Gabriela began participating in her own medical issues. Each night when I went to sleep she stayed up researching medications and their side effects as well as alternative treatments. Each morning when I awoke, Gabriela had left notes for me to call some doctor at some university or hospital and a list of questions to ask them.
Even though Gabriela turned nineteen in 2008, Dr. Goldie continued to see her until we could find an acceptable adult epileptologist. At the same time Gabriela had put herself on a diet to lose the weight she had put on as a result of the very first seizure medication, Depakote. The diet she went on was an “insulin resistant diet” which is very similar to the “modified Atkins for seizure control” diet. One of the results was that Gabriela’s next EEG was very “clean” with few abnormalities. Dr. Goldie didn’t know about Gabriela’s diet so he predicted her epilepsy was coming to an end and that she would probably fully outgrow it by about age 22.
For the next several months Gabriela did really well. She was out of high school and working part-time. There were no noticeable seizures and she not only lost the weight she’d put on, she also looked and felt terrific.
But then, as she reintroduced carbohydrates into her diet she had one short Grand Mal; then another the following week, then three in one night. She obviously needed to be back on medication so Dr. Goldie put her on a new one called Zonisamide.
We also needed an adult epileptologist and my sister recommended someone who I shall refer to forever after as Dr. Wreck.
Initially Dr. Wreck seemed to be a great doctor. She wasn’t covered by our insurance but neither was Dr. Goldie so I had to pay out of pocket for everything. Thankfully Gabriela’s mostly absent father stepped up and put her on his work insurance policy.
Dr. Wreck kept Gabriela on the Zonisamide and added a new medication, Lamictal.
Things seemed to be going well enough until after Gabriela’s first semester at college, when she had to drop her classes because she couldn’t keep up. This was a real problem because she had to sign up each semester for a full schedule of classes in order to stay on her father’s insurance. But after signing up she would drop each class one by one.
At Gabriela’s appointment with Dr. Wreck on December 21, 2010, we explained that we both could see signs of Gabriela becoming psychotic as she had when she was taking Topamax a couple years before. Rather than replacing the medication, Dr. Wreck wanted to try some medication adjustments first, so she moved the morning dose of Zonisamide to the evening. The problem with that change was that a year earlier she’d moved the dose to the morning because Gabriela was having seizure activity about every ten minutes. Since then, the morning Zonisamide had appeared to control her seizure activity. Moving it back to the evening didn’t make sense.
From December 21, 2010, until October 2011 both Gabriela and I repeatedly asked Dr. Wreck to change the Zonisamide. But at each appointment, instead, Dr. Wreck wanted to try some other dosage adjustment and by the end of June the pace of Gabriela’s deterioration had increased. She was isolated and delusional and had become violent towards me.
And this is when the rest of the story begins …