A little knowledge is a dangerous thing

Epilepsy Awareness Ribbon

Epilepsy Awareness Ribbon (Photo credit: Cynr)

This week was always going to be busy, but throw two seizures into the mix and it has been downright crazy – and its only Wednesday.

Lil Z had her 18 month needles (as they call vaccinations here in Australia) yesterday. It was only the chicken pox vaccination – the one I always thought was a bit overly cautious until I had a medically fragile child – so I wasn’t too concerned. She’d been a bit fractious during the morning, so I also took advantage and asked the GP to give her a quick look over. Temperature, chest and ears were all fine. So I wasn’t overly concerned.

The rest of her day went well, she went to bed easily, and QB and I settled in to watch an episode of “Newsroom”. As soon as I heard her, I knew it was a seizure. Lately, her seizures have become noisy. To me, it is the sound when someone hits you in the stomach; the “oof” kind of noise. To QB, it is the sound of someone trying to cry out, but unable to get out a full yell. Either way, its a terrible noise and deeply disturbing, although it does have the benefit of letting me know immediately that she is having a seizure.

QB  held her and I started timing the seizure and went to get the Midazolam. Five minutes went by and she didn’t come out of it naturally, so I gave her the Midaz and after a further 5 minutes, she stopped seizing and went to sleep. Because Midaz is a strong sedative and we’ve just increased her dosage, her usual response after receiving a dose is to fall into a deep sleep.

So, then came the post-seizure decision-making: do we take her to the hospital? If yes, then how do we get her there. Neither of us wanted to drive in by ourselves because we don’t want her have another seizure in the backseat of the car while we’re driving – that’s definitely a worst case scenario (I know, I’ve been there).

But do we call an ambulance? That seems a bit much, considering she’s no longer seizing. Or do we drag Vegemite out of bed and drive en famille to the hospital? And if we do that, do we all stay? Or does QB drop me, take Vegemite back home to bed, only to drag her out of bed again some hours later to come collect us?

After 10 minutes of debating the pros and cons, we decided that we know what we’re doing and that we would keep her at home and monitor her closely. Lil Z went back to bed and slept soundly for the rest of the night. After a few hours of anxious observation of the baby video monitor (a purchase after her first seizure), we go to bed and sleep soundly as well.

Lil Z was in good form the next morning, waking at her usual 5am slightly groggy but with a smile. She had a bottle and her morning meds with QB. Shortly after he headed off for work, she started to rub her eyes and get a bit fussy. I put her down in her cot for a nap while I finish getting dressed.

Within 10 minutes she’s having another seizure, virtually identical to the one last night. I time it on my phone and give her another dose of Midaz after 5 minutes. She continues to seize and I phone for an ambulance, nearly losing my calm when it takes ages for the call to go through. I also manage to video part of the seizure on my phone (something recommended by her neurologist). By the time the ambulance arrived, she had come out of the seizure and was a bit dopey but responsive. I quickly got Vegemite dressed and grabbed a granola bar for her breakfast and we headed to the RCH in the ambulance.

I can’t help but wonder, though, when we’re making the right call. I’ve lost track of the number of seizures QB and/or I have dealt with in the past year – I estimate that Lil Z has gone to the Emergency Department of the RCH around 20 times and we’ve probably dealt with a similar number of minor seizures at home. I read information on epilepsy constantly, speak regularly with the neurology team at the RCH, belong to a group for parents of children with epilepsy on Facebook, subscribe to Epilepsy Australia’s magazine… I’ve learned a lot about seizures in the past year. But I’m no expert. And so making such important decisions about when to take Lil Z to the hospital and when to stay at home always worries me.

I spoke to the senior ED doctor about it this morning. Should I have called an ambulance? Should I have brought her into the hospital? After all, by the time we arrived at the hospital she was in her post-seizure scream-a-thon and the doctors didn’t do much except monitor her vital signs and give her a quick examination to see if she was unwell (incidentally, her throat was a bit red, which could suggest a virus triggered the seizure, although we’ll never know for sure). Dr Katie said that we’d done the right thing and should continue to use our judgment about when we can and can’t handle things at home.

Lil Z has a seizure disorder and if it turns out she has CDKL5, one of the classic symptoms is seizures that are difficult to control. Her paediatrician described her as being on a knife’s edge – any slight disruption to the system can push her over the edge to a breakthrough seizure. But at the end of the day, she’s not going to outgrow this, we’re in it for the long haul.

So, I guess we need to learn to deal with it and trust our judgment. It’s not easy though, when we’re making a little knowledge go a long way. Here’s hoping that our judgment stays good.

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