Kalisha's first seizure was a petit mal which occurred when she was only 6 months old. As I stated in an earlier post, it scared me to death, I called 911, they came, took her to the hospital and observed her for several days. I was instructed to keep a journal of any seizure activity that I observed.
Now that I knew what I was looking for, I would see her have tiny, tiny little losses of 'connection'; perhaps only a few seconds in duration. After a while, these disappeared and I really didn't think too much about it any more.
One night when Kalisha was 14, she asked if she could sleep in my bed because of a thunderstorm. I awoke to violent shaking. The entire queen-sized bed seemed to be moving. I'm not the most functional person when you wake me from a sound sleep, so it took a minute to roll over and realize it was Kalisha who was shaking uncontrollably. Her eyes were rolled back in her head and I could not make her stop! A million things flashed through my mind...everything I had ever heard about seizures, whether true or old wives' tales. While contemplating what to do, the shaking stopped and she seemed to be asleep.
A frantic call to 911 brought an ambulance and paramedics. While I was talking to them in the kitchen, describing the incident and my panic, Kalisha comes walking out, looks at them and calmly asks, "What are they doing here?"
They examined her, advised me to take her to the hospital for the night and told me that if it happened again, I should make her comfortable, make sure she couldn't injure herself on anything she might hit while flailing around and wait for it to pass.
She was scheduled to see a neurologist who gave her a 'trial' medication. It didn't work. She continued to have seizures. There didn't seem to be any warning signs that I could discern. Each time, she would just crumble to the ground and jerk violently. One time, she had a horrendous rug burn on her knee from where it was jerking on the carpet. Just like in the movies; only this wasn't a movie, it was my little girl.
No one ever suggested a connection between autism and seizures.
She had all of the usual tests; MRI, EEG, and we tried really hard for a 'sleep-deprivation' EEG, but she absolutely would not try to go to sleep.
After several trial and error medications, I asked that she be seen by someone at Riley Children's Hospital in Indianapolis. I couldn't watch while the neurologist kept experimenting.
The first time we went to Riley, I began to feel better about this whole deal. Her doctor was wonderful! He actually talked to her about things she liked (Back Street Boys, InSync, books, etc) and he explained to us what he thought was going on. The autism hit puberty and bam!..... seizures.
He prescribed a medication that worked on the first try...Thank You, God! It took a little tweaking to get the dosage right, but no more grand mal seizures.
Kalisha went to see him every 6 months for a while, then once a year. She would always ask, "Do I have to take this for the rest of my life?" He would tell her that he honestly didn't know, but right now, it was working.
We found out the answer the hard way..through my stupidity, of course. He asked that we bring her to Riley for an early morning EEG. We went the day before and stayed in a Holiday Inn close to the hospital, so she could be there at 7 am. I thought he told me to withhold her medication for 24 hours before the test. WRONG!!!! Kalisha got out of bed the morning of the tests, immediately went to the floor, hitting the footboard of the bed on the way down and had a full blown seizure. Do you have any idea how much your head and nose can bleed and how much it can be sprayed around when you are shaking??!?
It looked like a CSI crime scene. Before we left the hotel, we called the front desk and told them what happened, so housekeeping wouldn't show up and think someone had been murdered!
It makes you feel like a wonderful parent when you bring your daughter in for a test, her face is black and blue and they have to x-ray her for a broken nose before the test. If there was one good thing that came out of it, it was that we now knew what would happen if she quit taking her medication.
A few years ago, Kalisha had to find a new family doctor. The first thing she wanted to do was to change her seizure meds. Her reasoning was that Tegretol is an old medicine and we should try something new. I am not opposed to new things, but in this case, my philosophy was, "If it ain't broke, don't try ot fix it"
She was sent to a local neurologist (she had graduated from Riley Children's Hospital) and thankfully, he agreed with me and kept her on the Tegretol.
She may have to take it forever, but she has no side effects and it is a small price to pay to ensure that there are no more seizures.