Since Joshua was born, I've considered myself to be pretty chilled out as far as the possibilities go. It is not uncommon for parents to have a lot of fear and anxiety about the possible unknown situations that can come up with a HIE diagnosis, and those feelings can be quite consuming. I of course, have had my share of concerns and niggling worries, but I think I have been pretty good about not letting those things take over.
Epilepsy is different though. It makes me feel crazy. I'll be the first to tell you that Joshua's epilepsy is mild compared to what others experience. He has been diagnosed with Temporal Lobe Epilepsy. I have witnessed two confirmed complex partial seizures, and his teachers suspect he has had some seizure activity at school. He has started anti-epilepsy medication in order to try and prevent further seizures. His seizures have been short (around 3 minutes long) and have stopped on their own. Other children are not this lucky. Some children have many different types of seizures, multiple times a day and cannot get them under control with medication. Some children have seizures that are prolonged.... they do not stop on their own without medical assistance, and for many, hospitalisation after a bad seizure is a reality. For many, the experience of epilepsy is much worse and much more scary than the little taste that we have had so far.
The horrible thing about it though, is that having these milder seizures can make you more susceptible to having more serious seizures. I honestly don't know if its just a matter of time before Joshua has a bad seizure, or if he will only ever have these milder seizures. The unpredictable nature of seizures is what makes it so unnerving. You feel as though you are constantly watching and constantly waiting for the next seizure, and constantly worrying if the next one could be worse than the last. And I hate that. We know that sleep has been a trigger for Joshua's seizures. Either going to sleep, or waking up from sleep. So it is at these times that I particularly watch Joshua. I watch him fall asleep. I watch every little twitch, every little move he makes. Just in case he starts having a seizure. And I hate that I have turned into that person. I want to be the old me again... the me that would have said "Oh He'll be right!" and not worried too much.... but instead I'm this me....... Hyperaware.
It's not just when he is sleepy that I'm watching him either. Complex partial seizures are tricky buggers. You could easily miss one if you weren't paying attention. And the two I've seen have looked different to each other, so I don't even have that that to go by. The first seizure Joshua had, he was basically slumped over with his eyes deviated off to one side.... but in the second one, he sat up and he was moving and his eyes were straight. He experiences automatisms (repetitive movements) like making swallowing motions, picking at things with his fingers. His consciousness is altered and he is unfocussed on his surroundings.
Seriously, do you know how many times a day Joshua's gets a vacant stare on his face and is not having a complex partial seizure? Let me tell you, it is a LOT. I'm constantly looking at this kid now and checking if he is having a seizure. The constant seizure monitoring is kind of exhausting and I hate that I'm even doing it.
But epilepsy has real risks. Joshua's seizures may be comparatively mild at the moment, but the greatest risk isn't necessarily the seizure itself, but rather the environment in which the seizure occurs. If you are in a state of altered consciousness, you can't keep yourself safe in the same way that you could when fully conscious. A seizure in a swimming pool or bath tub could be very dangerous. A seizure when you are somewhere that you could fall from could cause serious injury. During the second seizure that I saw Joshua have, he experienced 'ictal-emesis' or vomiting during the seizure. When a person is having a seizure, they may not be able to protect their airway like they could when fully conscious, so aspirating or choking on one's vomit is a real concern. Added to that, is Joshua's tendency to have seizures that are associated with sleep- which means the possibility of them occurring when he is in bed and unsupervised is real. Believe me, no parent wants to think that their child could be alone in their bed choking on their own vomit during a seizure. But that is the gift that epilepsy has given me.
My Dad has bought me a camera so that I can monitor Joshua when he is in his bedroom. I am still waiting for it to arrive, so until then, he has been sleeping in my bedroom where I can watch him closely. Some may think that is being dramatic. Maybe the old me would have thought that too. But the new me doesn't care. I do miss the old me, the me that wasn't constantly watching for seizures (oh, trust me, I was still watching for them before, but not this voraciously!) And I miss the me that didn't feel like she needed a spy-cam just to let her kid sleep in his own room. But this is what it is now, and once again, this journey has changed me.
|Happy Joshua, swimming in the pool!|
|Joshua during a seizure, laying in his own vomit.|