It has been almost a year since I have written a post on this page, and in a way I want to apologise but the reality is that it just didn't feel right to continue the blog in the same tone as before. When I wrote the last post in January 2017, I had nothing … Continue reading Still here…
Category: Frisium
Luke’s Disney Magic
Today marks a very special milestone for Luke, because today he is one month without any day time seizures....and two weeks with no Nocturnal seizures, this is huge! It's taken 7 months and various combinations of medications but finally we are all starting to breathe again as Luke's current doses of Lamictal, Vimpat & Frisium … Continue reading Luke’s Disney Magic
Big Sister Big Love
Epilepsy is hard, right? Not just for the sufferer but everyone around them. My daughter had developed what I would call a nervous "tick", she would open her eyes really wide, completely unknown to herself and occasionally does this jerking movement, mostly at night. Anyway's I mentioned it to Luke's Neurologist some time back who … Continue reading Big Sister Big Love
Scary Cluster Seizures
Just a little update, as it has been a few weeks since I posted on here. It will soon be 5 months since Luke was diagnosed with Frontal Lobe Epilepsy, and this week has been a tough one. Last night Luke had a lot of cluster seizures, 22 Complex Partial's in total from 7.40pm until 7.30am, … Continue reading Scary Cluster Seizures
Mixed Emotions -Good Days & Better Days
Ok so today I am a little bit more cautiously optimistic. Since my last post, (which I will be honest was written on a not very good day!!) quite a few things have happened. We have had two appointments with a Clinical Psychologist who gave both my husband and I some really good advice on … Continue reading Mixed Emotions -Good Days & Better Days
15 in 24 hours
15 Seizures in 24 hours: Life with Epilepsy
When the drugs don’t work
From speaking to parents of other children with epilepsy, researching online and consulting with Luke's Neurologist, I quickly learned that it can be very tricky to get the medication right in order to completely stop Luke's seizures, to reach the ultimate goal of Luke becoming seizure free. Luke was initially prescribed Frisium and Trileptal - … Continue reading When the drugs don’t work
