Selina Daley

Update on Emmie’s Epilepsy

Emmie is now taking Epilim twice a day. Her last big seizure that we know of was Mother’s Day. Caylin heard her vomiting and alerted us, we struggled to wake her, eventually got her into the shower and discovered she’d also soiled herself which isn’t like her. I knew it wasn’t gastro, we could tell by how out of it she was that it was not gastro. We called the RHH, they referred us to the after hours doctor who then told us to call an ambulance. She would wake briefly but was very out of it, and if you know Emmie you know that’s not normal. I spoke to a lovely lady while waiting for the ambulance, eventually I worked out her daughter is in the same Grade as Emmie, she kept me calm and was very reassuring while we waited for the ambulance. They eventually arrived and after assessing her and witnessing her vomit they put it down to gastro, however we know that’s not what it was. I’ve since read it’s common for patients to vomit again after seizures for a few hours, something they should have known. She eventually answered a question the male officer asked her, he asked if she could count to 10, she lifted one eyelid and finally said to him while rolling her eyes ‘10? I can count past 100’ then nodded back off. With that they were happy, though said they’d take her in if we wanted them to. We decided against it and let her rest at home rather than be dragged to hospital when they were suggesting it would be a waste of time. We said we would take her in straight away if anything else happened. 

It is hard knowing exactly how many seizures she has when hers are predominantly nocturnal. I always thought that was a blessing, but after reading comments on a post recently I discovered individuals with nocturnal seizures are more likely to die from SUDEP (Sudden Unexpected Death in Epilepsy), as they’re more likely to have seizures in the night when they’re alone and nobody is there to help them. We have a camera on her, but after reading this I’m going to look into getting an alarm which should alert us if she has a big seizure in the future through the night. 

She does sleep very poorly, she has for years. She wakes nearly every night, I have to go in and sleep with her after she wakes. I’m always tired as a result as I struggle to sleep in her bed, and I know she is too as she’s such a restless sleeper. She’s grumpy most of the time, short tempered and angry a lot, all side effects from the medicine and lack of sleep. 

Sunday just gone I was in the kitchen with her cooking some finger food for Chris while he was watching Bathurst, I was talking to her and she stopped talking and just stared to the left of me. I kept saying her name over and over and she was not there, just blank. Lasted for about 20 seconds then she came around. She said she could hear me but it was like something took her over body and stopped her from talking and moving. This would be an absent seizure, and I have a big list to discuss with the Paed at our appointment at the end of this month and that’s now been added to it. We are still learning new things all the time about epilepsy, how it is affecting her and how it may into the future, and it is one of the biggest worries for us all 💜