The Pain of Losing Your Daughter’s Mind

February, 2009

Until Abby was about seven, she was bright, precocious, pretty, charming, easily understood by strangers, and we fully expected her to become a medical doctor or an engineer. She had febrile seizures as an infant, but our doctor assured us that this was common, and 97% of all children grew out of this. At the end of the first grade, her teacher told us she was the brightest child she had ever had; far ahead in reading and math skills. She was cute and charming, strangers would often tell us “she ought to be in commercials.”
The summer before I began medical school, and Sandy was working on her doctorate, we bought a run-down house in a nice neighborhood in Louisville. Abby started having more seizures, and we were not always sure that they were associated with fever. By our third visit to the same ER doctor he knew us by face and first name, and he became justifiably angry with us for not taking her to a neurologist by then. We hadn’t because, after all, we knew she would grow out of it any day now. It was the beginning of a long road of denial. We had just begun the Elizabeth Kübler Ross’ stages with this disease. We have been through them all now.
For 8 months, she was well controlled on Dilantin, although it did cause some gingival hypertrophy. We finally adjusted to this. “Okay, she has epilepsy, but she is well controlled on meds, it is like any other disease that is controlled on meds.” Then, at the end of the first grade, she had a sleepover at a friend’s house, and they were up all night. Sleep deprivation is a common trigger for seizures. From that point on everything went downhill exponentially. Ultimately, Sandy had to give up her doctoral program. I stayed in med school, obviously. Our son who was 3 years younger than Abby got less attention than he deserved, regardless of the fact we continuously reminded ourselves not to do that to him. (He has turned out fine, and is well adjusted in spite of this.) We continued to remodel the house because we had little choice if we wanted to sell it at the end of med school.
From there, and through the next several years, Abby seizures steadily worsened. Her seizures are tonic-clonic, secondarily generalized (or what most people would call “grand mal”). She can be in the middle of a sentence and drop to the ground, convulsing. I’ve stitched her scalp at home twice, and her chin once, (and the chin once, by and ER doc). She lost her right upper incisor three times. The third time, it could no longer be replaced. As an older teenager, she went for over a year with that incisor missing, until we could finally get a permanent bridge.
We have tried every seizure medicine there is, in every combination, in every dose. She has been overdosed on seizure meds a few times, to the point that is like being with someone who is stoned. She only goes into status epilepticus about 4 or 5 times a year now, but it used to be more often. Status epilepticus is a seizure that lasts more than 5 minutes, or having several in a cluster, without recovery in-between, over the course of several hours. When this happens, we have a form of valium that we administered rectally in order to interrupt it.
We have tried Chinese herablists, faith healers, and a homeopath. She was on the ketogenic diet, and has a vagal nerve stimulator implanted. She was ruled out for brain surgery at two different time in two different cities, by two different neurosurgeons.
Now, on good days, she is hard to understand due to diction. She still has 3 or 4 seiures a week. She will be in a mental fog for hours or even days after a seziure. She can shower herself, but it took years to teach her that, and Sandy still has to help her sometimes. She can dress herself, but it takes her about an hour. There are a few snacks she can make herself with the microwave, but obviously, she is not allowed to use the stove. She talks and moves very slowly. She is in special Olympics bowling, but does not have the coordination to ride a bike or go skiing. She has a special recumbent three wheeler bike she enjoys. She lacks in physical stamina and normal strength for a girl her age. She watches Nickelodeon a lot, and Disney feature films. In the last couple of years, the meds have caused a horrible case of acne; one of the worst I have ever seen (after ten years of practicing family medicine, mind you), and I am sure it is going to scar her face.
Even after all these years, a sudden seizure can send the adrenaline rushing through our bodies, and having just two or three in the night can ruin a good night’ s sleep.
We know that she will never be able to live on her on. She is primarily a happy little girl, and good natured, for the most part. She is 19 now, although she is still 6 mentally and emotionally.