This is a follow-up to my blog called Facing the antiepileptic drugs 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 Benign Rolandic Epilepsy as a diagnosis for my son.
My son was continuing to have multiple seizures on a daily basis. Before we got back to the neurologist my son had a larger seizure, still not as big as the first one, but I this one was more like a flutter seizure. My son was having the same movements with the eye tugs, but they were rapidly happening and then he fell backwards. It lasted less than a minute, but it was also obvious he was not cognitive when it occurred. So now we had seen 3 different types of seizures including: a tonic clonic seizure (previously known as grand mal seizure), the eye tugging/blinking with head jerks, and these eye fluttering events.
We went back to the neurologist office. We discussed how my son’s personality had changed and the medication Tegretol. The neurologist said we will define a plan to wean him off the Tegretol. We also discussed that there was no reduction in seizures and that new types were appearing. The neurologist decided we should do a long-term non-invasive video electroencephalogram (EEG). He also said we could start reducing his tegretol medication while this EEG was being done.
As a side note my husband had finally returned from his trip overseas. He was somewhat shocked when he saw what was happening to our son even though I had described everything in our phone conversations. I had to spend some time to get him caught up on all of the information that I had learned or that the doctors had reported. This was a really important task because my husband comes from a culture that still has an old perspective of epilepsy which is tied to a spiritual beliefs. My goal was not to dissuade his beliefs but instead add the biological, medical perspective. I have found through our years of marriage it is not good to force a change of thinking and instead lead my partner to a new perspective on his own terms.
Once again we were in a waiting mode. For this EEG we needed to be admitted to the hospital and the neurologist said we should expect to stay 3 – 5 days. There was a waiting period for getting admitted to the hospital because there is a limited number of beds on an EEG unit. Lucky for us our appointment was in a week. I knew very little about an EEG but soon got first hand knowledge. Here is a brief definition of an EEG:
An electroencephalogram (EEG) is a painless procedure that uses small, flat metal discs (electrodes) attached to your scalp to detect electrical activity in your brain. Your brain cells communicate via electrical impulses and are active all the time, even when you’re asleep. This activity shows up as wavy lines on an EEG recording. An EEG is one of the main diagnostic tests for epilepsy. An EEG may also play a role in diagnosing other brain disorders.
This sounded okay, and didn’t appear to be a thing to worry about. The description was similar to the short-term EEG which we had already done. The only difference was the longer duration.
Finally the day came and we took our son to the Children’s Hospital associated with our neurologist. My son was admitted and then we were led to the epilepsy monitoring wing. We met the technician who was going to get my son prepared for the EEG by placing the electrodes on his head. This hospital did not call them electrodes and instead referred to them as “buttons.” The reason they did this was to not raise anxiety or misunderstanding in the child. The word electrodes could sometimes conjure up images of electricity and children become afraid that the electrodes were going to hurt them.
The first step was to provide a detailed description of what the three types of seizures looked like. The technician was very patient and took his time explaining to my son what he was doing. He began to measure my son’s head with a measuring tape and then marked his scalp with a special pencil, to indicate where to attach the electrodes. This pencil became my son’s bane. He hated the sensation and began to cry. As this was going on I thought to myself why is it necessary for using this type of pencil. It was ineffective and the technician would have to put repeated strokes on the marking place to get it to leave a mark. This is an age of erasable markers. I wondered why they didn’t use them. (A few years later at a different hospital my son had another long-term video EEG and they used markers instead of these grease pencils. This was a big relief to us.) I believe this measuring / marking process continued for about 26 locations on the scalp.
Next the technician started using a something similar to a Q-tip but more sturdy and began scrubbing each spot with a gritty cream with the intention of improving the quality of the EEG recording. The grease pencil was bad but this scrubbing step was even worse. My son cried. We had to take numerous breaks to get him calmed down. He was only 3 1/2 years old and begged for them to stop. I had to do everything I could to comfort him and get him through this process. It wrenched my heart. He was really terrified. Finally all the spots had been scrubbed.
The next step was to put the “buttons” on. The technician brought out the brown bottle of special adhesive which basically smelled like airplane glue. Each electrode was connected to a wire which eventually would be connected to a device that amplifies the brain waves and records them on a computer. This process consisted of the technician taking a small amount of pink gel, putting it on the electrode, taking a small piece of gauze, dipping it in the glue, placing the electrode on a specific spot of my son’s head and then covering it with the gauze with the glue. This continued for all 26 electrodes.
Occasionally the technician would test the signals from the electrode and if they didn’t meet a certain standard for this testing device the technician would use an instrument to rub the skin beneath the electrode. In some cases if the electrode did not have a good signal they used this device to squirt more pink gel under the electrode. The unfortunate thing is this device looked like a syringe. Even though the technician showed my son that it was not a needle my son was still scared. He wanted to run away and begged me to help him. They also put two more sensors on his chest for measuring heart rate and pulse. Finally they wrapped all of these wires together, like a giant braid, and then wrapped my son’s whole head with gauze with the intention of preventing him from picking at the electrodes.
For this first long-term video EEG, this process took almost four hours. The process would not normally take four hours but the timing depended on how well the child tolerated the process. By the time we were done my son was wore out and hungry.
The technician led us to my son’s hospital room and plugged the wires into the EEG device. He showed us where the camera was and that it was important to stay in view of this camera, which meant staying on the bed. I knew this was going to be the hard part. Keeping a 3 1/2 year old sitting in once place for a long time is really difficult. The camera captures body motions while the EEG simultaneously records your brain waves during a seizure. This helps the neurologist pinpoint the location in your brain where seizures begin.
The hospital had some toys and videos to entertain the children. I knew that my son would be more comfortable with some of his own toys so I told my husband to go home and bring back some of my son’s toys.
The technician also showed me a button that I should push if I noticed a seizure. This would then mark the recording of the EEG for them to evaluate. The technician then wanted to take a baseline for the test and ran through the same tests that they do in a short-term EEG such as opening and closing my son’s eyes, asking him some questions, blowing at a pin wheel for several minutes to trigger hyperventilation, and then looking at some flashing strobe lights.
Once the technician completed all of the instructions all we had to do was wait. And wait. And wait.
To be continued . . .
Specific information about the EEG was provided by Mayo Clinic at: