This is a follow-up to my blog called The first neurologist appointment. Read on if you want to know what life is like when your child is first diagnosed with epilepsy. In my previous post I described our first appointment with a neurologist, including the types of tests they did and the misconceptions in my head.
After meeting with the neurologist we waited another week for our appointment for the EEG test. At this point I did not really know how an EEG test was done. Little did I know that we would become very familiar with EEG tests.
An electroencephalogram (EEG) detects abnormalities in the brain waves or electrical activity of the brain. During the procedure, electrodes consisting of small metal discs with thin wires are pasted on the scalp. The electrodes detect tiny electrical charges that result from the activity of the brain cells. The charges are amplified and appear as a graph on a computer screen. A neurologist who is specially trained in EEG then interprets the reading.
While we waited for our appointment my son continued to have multiple episodes every day of this unusual blinking. Occasionally the blinking was accompanied with a head jerk. When I say multiple times per day, I mean he had fifteen to twenty times per day lasting as little as a few minutes and as long as twenty minutes. As he would have an episode, the rhythm between blinks became further and further apart as time passed by.
The other noteworthy observation was that he constantly rubbed at his eyes when the episode would begin. Unfortunately he was really young, three and a half years old, and was not able to tell me what it felt like. But I could tell he knew it was happening and he knew it was something new happening to him.
Before the EEG appointment, they instructed us to wake up extra early in the morning, because they wanted the child to be tired while they were being tested. The idea was that with lack of sleep seizures were more likely to occur. This sounds easy, but he was only three years old and he wanted to sleep. We woke up extra early at 4:00 a.m. I did everything I could to keep him awake until we got to our appointment for the EEG.
The first step of having an EEG is to provide the technician with a detailed description of what the seizures looked like. I provided two descriptions, including the characteristics of the very first seizure and then the subsequent blinking, head jerking episodes.
After this was documented the technician put the leads (electrodes) on specific places of the scalp. For children this clinic did not call them electrodes. Instead they called them buttons. The technicians did measurements for each spot and marked this placement spot with a grease pencil. After marking all of the area the technicians scrubs at the spots to ensure a good connection. This being my son’s first EEG he tolerated this process even though it took about an hour to get all of the spots measured, scrubbed and then using a conductive gel placed the twenty or so electrodes to my son’s head. The technician explained to me and my son that my son would have to be real still so the electrodes remain in place. She said if my son could not be still then she would have to use glue. Luckily, for this EEG my son remained very still.
Some of the things they look at on an EEG are bursts of electrical activity (spikes), whether the two sides of the brain show different patterns of electrical activity, or sudden slowing of the brainwaves. When a person has epilepsy, the location and exact pattern of the abnormal brainwaves may help show what type of epilepsy or seizures the person has. Keep in mind that in many people with epilepsy, the EEG may appear completely normal between seizures. An EEG by itself may not diagnose or rule out epilepsy or a seizure problem. The other component to keep in mind is that an EEG only measures surface level brain waves.
Once they had all of the electrodes in place they did a series of tests including: blowing at a pin wheel to make him hyperventilate, opening and closing his eyes, answering questions and watching a strobe light at varying frequencies. Then they let him sleep for about 20 minutes while recording the brain waves.
We got through the EEG. I did not see any of the events like what we saw at home. None of the test provoked a seizure. It’s odd but I was a little disappointed. Of course I didn’t want my son to have a seizure, but I wanted a diagnosis. For some reason I thought if I had a diagnosis then he could be made well. Once again one of those misconceptions.
Then I was hit with reality. It would be several days before we would have the results. The technician has the skills to perform the test, but could not evaluate the results. Once again we were in a waiting mode.
While I waited for the results I continued to stay home with my son. He continued to have the blinking episodes. After three weeks of watching him, I started to see some patterns with the blinking episodes. First of I noticed that my son had a twenty-minute episode of these blinking episodes every morning within a half hour of waking up. The other observation I had is that bright sunshine seemed to trigger the events. Both of these observations happened every single day.
Finally we got a phone call from the neurologists office. The woman calling us said when my son was going through the sleeping part of the EEG test, his brain waves showed patterns of a seizure. The woman called it Benign Rolandic Epilepsy. She then said they were prescribing Tegretol, and she explained the frequency of the medication. She then said that I should make a follow appointment in a month. And then that was it. I didn’t even get a chance to talk to the neurologist. No opportunity to ask questions. Nothing. And that was our first experience with our neurologist, an EEG, and seizure medication.
To be continued . . .