This is a follow-up to my blog called Test after test soon leads to torture. 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 some of the other experiences we had while trying to identify a diagnosis. This included blood tests, MRI’s, EMT, medications, etc.
As I mentioned in an earlier post, over the years my son has had seven or eight long-term video EEGs at two different Children’s Hospitals and at the Cleveland Clinic. The procedures for the test were pretty consistent from all of the clinics and included putting on the electrodes, capturing the brain activity via the EEG, being video taped during the test, trying a few different strategies to trigger seizures, and eventually waiting for the results.
The long-term EEGs were torturous. My son was only 3 1/2 years old when this all started. He screamed when they marked his head for placement of the electrodes. He panicked when they brought out the brown glue bottle for adhering the leads to his head. Then as the test was being conducted and as the days went by he lost patience and did not want to remain on the bed in sight of the video camera. Cleveland Clinic had a set up where he could momentarily unplug from the EEG and take some time to walk around, which was a big help for getting through the test. They even had a McDonald’s on site which was a big treat for my son.
During the test my son would complain about the gauze that was wrapped around his head which was used to keep his hands off of the electrodes and as extra support for the electrodes themselves. He said it was making him hot. Then after a day or two, he would begin picking and scratching at the electrodes. He was especially sensitive to the ones that were placed behind his ears or on his forehead. Picking at the electrodes would sometimes reduce their connectivity and the technicians would re-glue and place the electrodes back on. Besides itching there were times my son complained they hurt. When we were done with the test and when we took the electrodes off, his forehead had sores where each lead was glued.
The other big obstacle to overcome, especially in our earlier days, was resting with lights on at all times. Eventually the technology solved this, but in the beginning the lights in the room had to be on so that the video would clearly capture all of the activity. It was a struggle to get my son to sleep with the lights on. After having a couple of long-term EEG’s, I learned that the best way of dealing with this was to lay beside him in the bed which comforted him and then he would fall asleep. I no longer cared if I was on the videos. The hospital itself was not concerned with the lack of sleep because sleep deprivation sometimes triggers seizures. Such was not the case for us. Besides getting my son to sleep, I, as the parent, got no rest. A long-term video EEG meant that I would get little or no sleep for four or five days. It was a struggle, but you endured it. You had to. It was a sacrifice that may help your child. In more recent years there is no longer a need to have the lights on because they use video cameras that work in the dark. What a relief that was.
As a parent you want to relieve your child from any agony that they may be experiencing. But as a mom desperate for a diagnosis, I prayed that he would have a seizure. The frustrating part for us was that during many of these EEG tests we were not having the same experiences with the seizures that we were having at home. At home my son was having numerous seizures every day. They always began within twenty minutes of waking in the morning. It was consistent. It was so consistent that I had a video camera in place aimed at his favorite sitting place and I was able to tape his seizures.
Over time, we learned that his seizures were triggered by lights, more specifically changes in lights. Seizures happened as we drove to daycare with bright sunshine. Or seizures always happened in the grocery store in the fish / seafood section. My theory for this was that this area of the store always had fluorescent bulbs that were placed lower than the other lighting in the store. The same happened at restaurants when we sat at a table that had a low hanging light for the table. He would have seizures when we would come out of a theater after watching a movie. He also had problems in the winter on those bright sunshine days and the snow has that sparkly effect. Seizures also happened from car lights when driving at night. Emergency vehicle lights also trigger a seizure.
So my theory in the hospital during the EEG was that there was not enough change in lighting to trigger the seizure, especially when they had the lights on 24 hours per day. Flashing a light, such as a strobe, in his face did not do the job. I eventually convinced the neurologist and the EEG technicians that they needed to let me control the environment, particular the lighting. It wasn’t easy convincing them of this because it was not “normal protocol” for the test. Each time there was a shift change I had to convince them to let me control the environment. Finally I had the neurologist put the instructions in my son’s file so that I could refer them.
I knew I had to assimilate the environment to be like it was at home. The most consistent time when he had seizures was within 20 minutes of waking up in the morning. He needed to sleep in a dark room and wake to daylight in the morning. We finally captured the seizure activity within twenty minutes after waking. My theory was correct.
It was a big relief to have captured the seizures on EEG. We learned that he was having seizures in the frontal left lobe of the brain. It was sad to say that I was happy that we had some evidence that we could point at. It wasn’t good news, but it was information that we didn’t have before, which would bring us much closer to reducing or eliminating the seizures. This happiness was short-lived because knowing the location of the seizures did not necessarily point the neurologist to what medication to use. Since medications were not working at first we tried one more thing, a VNS.
In the near future I will share our experiences with the Vagal Nerve Stimulator and its impact on my son’s epilepsy. Watch for the post on Twitter, or come back to check this blog.
To Be Continued . . .