In April I noticed J having these episodes were his eyes would roll into the back of his head and he would go limp for 3 to 5 seconds. As they seemed to happen more in the morning when he was still tired from waking up, Lance wasn’t really noticing them in the afternoons when J came home from school. Over the course of two weeks they started to becomes more frequent, I was keeping track of them, Lance had started seeing them in the afternoons and the school confirmed he was having them there as well. It came to a head the Friday morning of his first field trip. I almost keep him home as he had 5 incidents, 2 of which were more pronounced (one where he fell and one where I was lucky enough to have my arm around him to catch him as he dropped). As we had already been monitoring for two weeks, I was already planning on calling his doctor. We were able to get into the clinic the following week where our doctor referred us onto the neurology clinic as she believed from our description that J was having seizures. At first, neurology wasn’t going to be able to get him in till the end of August. That was NOT going to work as they were still steadily increasing but our doctor was able to at least get us scheduled for an EEG the next week.
An EEG is an event for any child, it is a huge ordeal for an autistic child. We had to keep him up till 11 the night before and get him up early the following morning so he would be tired at the appointment that afternoon, so no naps. J did really well with all of this, I on the other had was craving a little shut eye. We packed for J’s needs like we were staying overnight. We had extra clothes, a blanket, pull-ups, wipes, 4 different snacks, a cup for water, several books and his iPad. From all this he only ate one snack and only needed his blanket and iPad but better to be over prepared then not enough for J. The tech that conducted the EEG was amazing with us, she worked with us to get J comfortable to the room and the bed she needed him to lay in in. Lance was nominated to lay in the bed with him and we were able to get him settled and watching a movie quietly. It was then finally time to start attaching the 26 or 29 ( I can’t remember) electrodes which also entailed wrapping his head in gauze. This ordeal required both Lance and I to hold J down in the most comforting way possible (which is by all means hard as crap). It started off pretty rough, but got progressively better as J being tired was on our side. This process took 20 minutes (would’ve taken a little less had he not be able to reach up one time and pull a few out) and then another 20 minutes for the reading to take place. Finally the tech said we were done. I asked right away if it was a complete reading because I needed to start preparing myself right away if we needed to do this all again but she said yes, it was an excellent reading. Thank gosh!
BUT it was also an abnormal reading. Nothing we weren’t already expecting. Our doctor called us the next day with the basic understanding that the neurologist analysis concluded J has general epileptic form and we would be starting him on Keppera used to treat epilepsy. General epileptic form is characterized by general seizures with no apparent case. They impair consciousness and distort the electrical activity of the whole or a larger portion of the brain. Based off our at-home research we think J is having both atonic seizures aka drop attacks or petit mal seizures aka absence seizures. Drop attacks cause the muscles to go limp were the body may slump to the ground, whereas people experiencing absence seizures typically appear to stare without moving, lasting less than 15 seconds. These can be mistaken for daydreaming.
We started his meds last weekend, so far okay. There have been days that he has had 5 or 7 in the morning before even getting on the bus. These moments are awful and I am on my toes more now than ever before with J. One minute he is fine and like himself and the next second he can slump over on me. This mean is we can’t leave J alone. Even running upstairs or into the other room because we forgot something might be an error as we don’t want him to fall and hurt himself. I’m thankful that he can bounce back from them so well and that beside being a bet sluggish, the meds haven’t really affected his demeanor. I’ve been able to hold myself together as a whole even when there are times I want to fall apart because of this new unknown for J but that just is not an option. The hope is that the meds will help reduce that amount of seizures and even the duration, then we can wait till his August appointment. This first week they seemed to remain the same until Friday and Saturday which showed signs of improvement. Either way we have to give the meds a full two weeks to settle in his body. If there are no great signs of improvement we will have to double the amount given and push for neurology to get us in sooner.
Ah, the joys of parenthood.