OK, just FYI: Thomas has seizure activity that scares the crap out of his Mum, but, as far as kids with seizures go, his seizures are actually quite rare, and are few and far between. We are lucky people!
Tom has had drop seizures (or tonic seizures) on several occasions. One example: Tom came home from school and he looked quite flushed. I felt his head– and understood that he was running a fever, so I went straight to the kitchen to make him a drink with a nice dose of liquid Tylenol in it. I heard an odd vocal noise, and turned around just in time to see Thomas stiffen like a board and fall face-first to the floor. He did not bend or crumple, and did not respond in any way to having fallen hard. Obviously, this was a 911 incident. As he seized and stopped breathing several times in the ambulance, I felt this was a good call on my part (Though my insurance company fought tooth and nail over paying this bill and said I was being an alarmist. It took the transcripts of the ambulance crew with the hospital staff during our ride in to force the insurance company to pay – something about the crew requesting advice on a medication interaction that might cause Thomas to stop breathing on his own – wheee).
Thomas has also had the type of seizure resulting in jerky motions, called clonic seizures. Sometimes these can be as simple as a repeated jerking of one limb, with Tom responding with some confusion to the event. This also can affect multiple limbs and can cause problems with Tom’s cognition. One example: I was feeding Thomas, when I noticed his hand was twitching a bit. The hand twitched more and more, and Thomas actually laughed a bit as he stared at his hand. The twitching became more and more pronounced and progressed from simply involving his hand to including his entire left arm. As this activity continued, Tom went from being amused to being frightened (as best as I can ascertain). All activity slowed and then stopped rapidly, and Thomas became very tired quickly and took a long (and well-supervised) nap.
My least favorite seizure type is the tonic clonic seizure. This type of seizure is easy to spot, as Thomas displays the jerky behavior of the clonic seizure, but also has other, more frightening, indicators. His eyes roll up and are directed top-left. He is completely unaware of anything visual – this is simply the cast his eyes take. Tom’s fingernail beds and lips take on a purple-bluish hue, indicating that he isn’t getting enough oxygen, and Thomas is unresponsive to any kind of normal interaction. Fortunately, if I hold him, stroke his face, and speak his name repeatedly, he will usually start breathing (or has almost always, thus far, knock on wood). Luckily, I took EMT training back in the day, and am actually capable of performing CPR on a little guy like Tom. I’ve only needed to do this three times, but, I mean, just knowing how to do this one time when needed would be enough, right?
If the above description sounds scary as hell, um, it is. I am not super-mom, and stuff like seizures makes me a complete waste. I have to hold it together for the boy, but, were it not for his sake, I’d be a drooling idiot every single time this kinda thing came up. Etch.
So, now that you have the background info, I can tell you why this seizure was different.
Tom’s big bro (whom he shares a room with) went into the bedroom while Tom was napping. As Thomas can generally sleep through a nuclear war, this is a pretty common occurrence. Big bro saw that Thomas was sitting out of his bed, tangled in the bedclothes on the floor, and was staring into space in an odd but yet so well known way. Big bro got right into Tom’s face (not a popular way of interfacing with an autistic kid who does not like physical contact) and yelled at him. Tom did not blink. As Tom’s sweet older brother has seen seizures before, he knew right away that something was seriously wrong, and he yelled “Something’s wrong with Tom!”
To be so completely honest, the big bro often has a good deal of crap to say about Tom, and I can’t really blame him. Tom is an attention hogging, cat tormenting, stinky farting and pee machine destructive turd, for the most part – and cannot be much fun to share a room with. In short, big bro is not always patient or kind with his special-needs brother.
This incident made it very clear to me that, while big bro would like to roast Tom alive from time to time, he actually really likes this kid much (despite himself). When big bro said that something was wrong with Tom, his tone of voice made it quite clear that Tom needed help ASAP. I ran in, saw exactly what Tom’s brother saw, and gathered the boy in my arms to carry him to a communal area of the house where I could get more help and support if need be. I should add that gathering a 52 pound completely limp child in your arms and lifting from a crouch is really hard! I am apparently getting wussy with age.
So, with Tom in my arms, gently stroking his face, he did start breathing, almost right away. His eyes still were displaying the same signature cast that is so apparent when he is having a seizure, but his skin was pinking up, so I thought we were on the kind side of the seizure (as in, it was ending). Major stuff like this always ends with Tom going into a deep sleep, so this is what I was looking for, as an indicator that the seizure was at an end.
This time, I saw something very new. After obviously seizing for a few minutes, Thomas sat up and walked away. His gait was unsteady, and his eyes were still cocked in an unnatural position. He seemed unable to see his surroundings, but specifically pushed away from me to walk independently. Obviously, I was at his side, as he was clearly on ‘auto-pilot’ and was not choosing his walking path with any visual cues in mind. More alarming, (to me, anyway), was the fact that his gate was altered.
Tom’s right foot and right arm were moving almost normally, but his left foot and arm were clearly compromised. He was limping badly, as his limbs on the left-hand side of his body were obviously compromised. He looked like a stroke victim trying to regain use of damaged parts of his brain. Normally, Tom does not exhibit anything like this – so this seizure behavior went beyond being odd. It kind of points toward a specific area of brain damage/issue.
All seizures are really brutal for me, as they are for all people who love someone with a seizure disorder. But this time, I have to wonder if the nature of the seizure might be an indicator for what is wrong with my son.
For anyone w/o a kid with an undiagnosed syndrome, I can hear y’all saying that “Of course, this is significant!” LMAO. I have seen specific stuff that would seem to be a clear indicator to a diagnosis a plethora of times. Generally, this means subjecting my kid to a lot of painful and/or scary tests, where I am told we will get specific info on my son’s issues. Over and over again. And I force my kid to go through the tests, holding him down while he is terrified and he is frightened, and I weep forcing these things on him, hoping to get a diagnosis that never happens (as of yet, anyway).
I do want a diagnosis, but when do you say enough is enough? When does holding your child down while they scream during an x-ray, or holding your child in place for another blood draw that will require a six month argument with the insurance company because the test came back negative for the rare disorder they were testing for just become enough? In short, is seeking a potential diagnosis worth all of the trouble?
I’d love a diagnosis, but I am rather cautious about telling my kid’s neurologist about the specifics of his most recent seizure. Why? ‘Cause I know someone will have a suggestion for a new disorder, a new possible diagnosis, and a new series of tests my son can be put through. And am I mad at the docs? Not at all. They are doing their best to put science to work, and help parents like myself. I do know they are trying to help as best they can. However, they don’t struggle with holding down a loved kid for a blood test, or for an x-ray, or for anything else. They are solving bigger problems/issues in the world.
My problems are far more simple. I am not trying to fix the world. I am just trying to keep life simple for a simple boy named Tom.