We’ve been trying to figure out the reason for Jackson’s severe regressions for about a year now. Last November, an MRI ruled out tumors and brain damage the big scary…Now we were focusing on watching for potential seizure activity.
When most of us hear the word “seizures” we picture someone falling on the ground and shaking uncontrollably, but these are grand mal seizures. Actually many seizures can be much more subtle than that. There are absence seizures which may be just a disorientation or unawareness while someone is still active in routine. My mother was diagnosed with this type of seizure as a young adult. She would be walking out of a college class and find herself minutes later in another place not knowing how she got there. After asking the doctor, “If a big mac truck came down the street, would I stop crossing the road for it?” “Probably not” replied her doctor. She was on medication for a while to control these.
The other even more subtle type of absence seizures only last 2-10 seconds and look like the person is staring off into space. Usually there is a pause in activity and speech, sometimes a bit of disorientation, and then the person resumes activity or speech as though nothing happened.
We spent months tracking these staring episodes at home as well as at school. 2-10 second staring episodes are tricky to identify with any child who might be sleepy or is often unresponsive much of the time, but we did catch him in several episodes where we could not get his attention by calling his name, clapping our hands or even touching his cheek or arm. Sometimes he would stop in the middle of humming, running, or echoing his favorite movie, pause for a few seconds, and then resume.
I looked up several youtube videos of absence seizures to help me get an idea of what I was looking for, and that really helped. It’s way easier to identify when your child is verbal and socially connected as in several youtube examples I found, but it still helped to see how subtle they could be.
Armed with our seizure log, I went back to the neurologist, and he told us to call him as soon as Jackson entered another regression (indicating possible seizure activity), and he would authorize another longer study sleep-deprived EEG.
The waiting was awful and depressing, but it didn’t take too long. In January Jackson was sick and then my husband was out of town, so I wasn’t sure if the regression was due to that, but it was so stark, I thought there had to be something else behind it. All the classic signs we had seen before: little or no language, any speech I could get out of him was muddled and missing all consonants, nighttime wakings, high distractibility, unresponsiveness, and lots of accidents. I was sure this was the “real thing.”
The EEG was scheduled for the next day, so I scrambled for an early morning babysitter (6:30), I woke Jackson up at 2 a.m., and planned for a 3 hour journey to hell and back. We had undergone a 35 minute EEG earlier last year that was “inconclusive” and run by a technician who was…not my favorite. It should have lasted at least an hour to get a full 45 minute sleep cycle and include a strobe light test. After finally getting Jackson to sleep and without pulling out the 23 electrodes that had been placed one by one onto his head while I and Jackson’s teacher physically held him down (10 minutes of screaming and writhing), the technician woke him up after only 20 minutes of sleep and skipped the strobe light part of the test because “the lamp [was] broken.” Desperately trying to keep his hands from tearing off the electrodes, I didn’t argue with her, but later found out it may have been the most important part of the whole test for Jackson…
For round two of the sleep-deprived EEG, I was determined to stand firm and get the whole picture, no matter who I had to argue with or talk down. I was bitterly disappointed to see my not-so-favorite technician walk through the door and proceed to harshly scrub 23 spots on Jacksons head which took 30 agonizing minutes to set in place this time for some reason. After 20 minutes, I couldn’t hold back my tears, and I vowed never to put him through that again. When she asked me over Jackson’s cries for a second time how long the doctor wanted to monitor him asleep (after I already told her and the receptionist that the neurologist specifically said he wanted 3 hours of Jackson’s sleep cycle recorded), I thought I might have some repenting to do. I took a deep breath and repeated his instructions also asking if medication might be in order to help him stay asleep since the doctor had also mentioned this. She vaguely nodded and exited the room to leave me vainly attempting to lure Jackson to sleep with his bedtime “soaking” music playing in the background and his favorite softy Pooh blanket wrapped snuggly around us both.
After about 20 minutes of struggling and crying, Jackson finally drifted off into peaceful slumber. Another 30 minutes later, I found myself desperately needing to use the bathroom. Inch by inch, I carefully attempted to dislodge myself from Jackson’s sleeping body and creep into the bathroom which was only about 8 feet from the bed. To my horror, Jackson stirred, and I gently lept up on the bed pretending I never had left in a vain attempt to drag him back to sleep mode. He didn’t buy it, and I still needed to pee…so I dashed in the bathroom and back to the bed as quick as a wink to give the sleep thing another go. After another 30 minutes, my technician friend came waltzing in, saw he was awake, and yet again asked how long the duration of the test should be.
Wanting to scream in frustration, but biting my tongue, I reiterated his instructions and suggested that she check his orders. Knowing Jackson would not go back to sleep on his own any more, I also asked for medication as the doctor suggested. “Oh he didn’t write an order for that. I’ll have to call him.”
Great idea. I sighed as she shut the door and clutched Jackson tighter trying to keep wandering fingers from tugging at those annoying wires, and tape, and glue. We waited like this for another 30 minutes, me assuming she was calling the doctor, only to be disappointed when she re-entered the room saying she had been checking on another patient and hadn’t called the doctor yet. I screamed internally, and asked God to save me again…and willed my aching arms to stay strong. Jackson was really irritated by now. That may have been the longest he had ever been contained to one place while fully awake since the last time he was sick. Wildly searching for any way to keep him distracted, I chatted about his brain and the lines on the computer. I finally let him touch the tape and electrodes as long as he didn’t try to peel them off. That actually helped him relax a bit.
Finally another 40 minutes later, the technician came back in armed with the sleep inducing stuff, which took about 10 minutes to kick in. I tried not to think about how we had just wasted the last 3 hours, and we should have been out of there by now. This time I didn’t dare move a muscle, no matter how uncomfortable I felt. 2 1/2 hours later, the lights came on, and we dragged ourselves home.
After that horrific experience, I almost hoped for something definable to show up. I know, you never hope for seizures, but I just wanted an answer. The results: no clear seizure activity, but definite language processing misfiring in his left temporal lobe…evidence of the processing issues we were well aware of. I was left with a sense of just having put my son through hell for no good reason, and praying that he would forgive me someday, and not have it come back to haunt him 50 years later during a counseling session…What’s a mom to do?