Midazolam has been in our lives since the early days. It has become a very important part of our armoury in the battle against Samuel’s seizures. It is his emergency drug.
The protocol of when to give Midazolam to Samuel is if he’s had a seizure lasting more than 10 minutes or if he’s had a cluster of four or five short ones in half an hour. It is only given for full on focal seizures and not his general twitching.
In the very early days, Samuel had Midazolam a lot. On average he’d have about five doses A DAY! There wasn’t really a clear protocol at that time so he was given it almost as soon as he’d seizure. Problem was, Samuel would seizure a lot and medical staff are trained to zap seizure activity immediately! But the neurologist stepped in and changed the rules. She made us and his hospital team wait. It was hard. I’d be there holding my boy who’d been having a seizure for 8 long minutes and I wasn’t giving him anything. But it worked. It showed us all that more often that not, Samuel will self resolve after about 10 minutes and then be fine.
When the going is good and things are quite balanced, Samuel on average has Midazolam about once every two weeks. Although when the Ketogenic Diet was at it’s best he went without it for about 60 days!
Midazolam is the only thing Samuel has orally. It is squirted into his cheek and absorbed that way. After Samuel has been given it, he can take a bit of time to wind down. Sometimes he will even have another seizure after he’s had it. But then he eventually calms down and relaxes and usually goes off to sleep for about three hours.
Giving Midazolam is at last much easier after the introduction of pre-filled syringes. Before, Midazolam came in a little brown bottle and you would have to push the syringe through the stopper to draw up the Midazolam. This wasn’t always as simple as it sounds. There was always a big label over the bottle making it awkward to see what you were doing, if you’d already used the bottle a couple of times and the liquid was getting low, you’d have to angle the bottle a certain way to ensure you got enough in your syringe. Then you have the problem of air bubbles. When drawing up a medicine, you have to get rid of air bubbles as where air bubbles are, medicine isn’t. Don’t forget this is an emergency medicine. You are trying to do all this as quickly as possible too!
We have a bit of a love & hate relationship with Midazolam. We love the effect it has. How it works. How it stops what is happening. But we hate it too. We hate having to give it. We hate what it symbolises…that Samuel’s had a bad patch.
But the relief you feel when you’ve been watching Samuel seizure for over 10 minutes and then suddenly he stops, relaxes and yawns and goes off to sleep. All is calm. Samuel is safe and content once more. That is why Uncle Midaz is a very important part of Team Sam.