Connor had a quiet day today, thank goodness. His neurologist is continuing to monitor him, and we'll adjust his meds as need be, so that's a blessing.
I thought I'd talk a little bit more about Connor's seizures, as I realized that I haven't really defined them on here yet (I have been appallingly lax in continuing my Medical Mondays. Shame on me) so here's the nitty gritty.
Connor has a type of seizure called "complex partial seizures with secondary generalized seizures." Let me give you a basic idea of what this means.
Your brain contains millions and millions of tiny cells called neurons. These are in charge of transmitting information and messages from the body to the brain, and also help different parts of the brain talk to one another. In a seizure, these neurons misfire, causing a sort of "storm" in the brain. Depending on where the misfiring is occurring, you can have different outward manifestations of the seizure, such as twitching or jerking, altered consciousness, and repetitive movements, to name a few.
In a simple partial seizure, only a tiny part of the brain misfires. In a general seizure, the whole brain misfires. So in a complex partial seizure with secondary generalized seizures, which are what Connor has, the seizure starts in a tiny part of the brain and then spreads to the rest of the brain.
Connor's seizures are very unusual because they start in a part of the brain it is rare to have seizures in. In fact, it took a very long time to diagnose them as seizures as the symptoms we see with him look almost identical to sudden cardiac arrest, and most of the doctors were convinced the problem had something to do with his heart. His seizures begin very low down in the brainstem, and they affect one of the centers that controls breathing, known as the dorsal respiratory group. When Connor has a seizure he suddenly collapses, turns a ghastly blue-gray color, and stops breathing. He will not breath again until the seizure is over. We have little to no warning that a seizure is about to happen. He also displays none of the typical symptoms for generalized seizures; instead of shaking or jerking, he goes either totally, completely limp or just a tiny bit stiff-- one of the two.
In other words, it looks a whole lot like sudden cardiac arrest. Which, since he's at risk for sudden cardiac arrest due to his LVNS, can be rather nerve wracking. Not that your kid suddenly keeling over and stopping breathing isn't nerve wracking anyway, but you know how it is.
The doctors think that there's a good chance he would start breathing again on his own when the seizure is over. It's not, however, something they suggested we test, so we do mouth-to-mouth resuscitation on him until he starts breathing again. There's never any indication that the seizure is over other than the fact that he does start breathing again, so it's hard to know whether or not he started breathing because it was over or if it had been over for a little while and he started breathing due to the mouth-to-mouth. The biggest danger is that he'll stop breathing long enough that the lack of oxygen will cause brain damage. We carry an emergency medication, called Diastat, with us in order to try and stop a seizure that goes on too long. Thus far we haven't had to use it, and we'd like to keep it that way.
We have an apnea monitor with a loud alarm that we turn on while he's sleeping in case he has one at night or during nap time, and he takes a daily medication called Keppra that works pretty well for him with no visible side effects. While I worry that he'll have a seizure while I'm in the shower, or outside watering the plants, or (yes) driving, so far we've been incredibly lucky. Hopefully we'll stay that way.
5 weeks ago