Gadgets. We have them coming out our ears. One problem we have is knowing when Mikaere is having a seizure when he’s sleeping. His seizures are silent and horrid and we need to know when he’s having one so we can give relief medication if he needs. At the minute we have night nurses a few nights a week, which is helpful. They stay awake and watch Mikaere. When we don’t have night nurses, Sam and I sleep in shifts. But the problem is in the wee hours. Sam’s shift usually goes until around 2am, and typically I’m up for the day around 5, 5:30am. In those inbetween hours, it’s usually whoever is around, or whoever is the most awake.
Except, you guys, we’re SO sleep deprived. We’re special needs parents, so of course we are. But when you’re sleep deprived, we run the risk of missing something in those inbetween hours. It scares me no end. So, gadgets. We have all the gadgets.
We have an angel care mat, and while that’s a relief, it only alarms when Kai stops moving for more than twenty seconds (which is to say if he stopped breathing and was completely still for twenty seconds). But with seizures he jerks.
We tried wearables next. Specifically the neebo, as his feet are now too big for the owlet. Except the neebo wasn’t accurate enough for us. Additionally the strap left red marks on his arm.
Then we tried the RayBaby, a gift from a friend. Ray baby is a baby monitor that tracks breathing. As Kai breath holds and then hyperventilates when he’s having a seizure, we’d hoped that RayBaby could help. Except that RayBaby couldn’t distinguish between an empty crib and one with a baby in it. It’s still very very beta. Womp womp womp.
Our saving grace is the pulse oximeter my Mum got Mikaere. It’s an old Massimo Rav 5 that a client gifted as they were upgrading their kit. It has a probe that goes on Mikaere’s toe and measures his heart rate and o2 saturation levels. When he has a seizure his heart rate sky rockets and his o2 drops – we have alarms set to go off when they hit certain thresholds.
He wears it every evening when sleeping, which means we don’t need to be as hyper-vigilant as we used to, game changing when everyone is exhausted.
The only downside is he can’t wear it all day. It’s too big, and the minute he’s awake he’ll kick and wriggle and the probe comes off. Still, it’s good when he’s sleeping, which is when he’s most likely to have a seizure.
We’re also on the waiting list for a seizure movement monitor from Muir Maxwell, and Epilepsy Trust in the UK, but I’m not convinced it’ll be any better than the pulse-ox to be honest. I don’t know you guys. Seizures are awful. They’re really really awful and I’m terrified I’ll miss one and that will be it. SUDEP (Sudden Unexpected Death in Epilepsy – it’s when a person with epilepsy dies without warning and where there is no other obvious cause of death) has me incredibly fearful of falling asleep and missing something. I guess it’s a special needs parents thing, where you go to sleep but you’re not 100% sure your baby will still be alive when you wake up. The Fear, I have it.
Epilepsy parents, what do you use to monitor your child?