(Belated!) Happy New Year to visitors of the blog - 2017 let's be having you... Since I was last on here, little has changed. Luke remains "seizure free", we have noticed some instances of staring for a few seconds when he is very tired (what we presume to either be a very mild complex partial … Continue reading New Year Update
Category: new to epilepsy
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
Normality (for now!)
Luke is in his 4th week back in school following the Summer holidays and so far he is doing great. We did have a small behavioural incidence on the first week, but I think the excitement and nervousness of going back to school was a little overwhelming. He seems to be working hard in class, … Continue reading Normality (for now!)
10 things I have learned about Epilepsy
I apologise in advance for how long this post is...... Over the past 6 months I have been educating myself on all things Epilepsy with a special interest in Paediatric Frontal Lobe Epilepsy and a sub specialisation in Refractory Epilepsy (Yawn!). I know Luke's extended family and friends are worried about him, maybe don't like … Continue reading 10 things I have learned about Epilepsy
More Clusters, ineffective hospitals, irritable mum!
Just a short and sweet little post, before I forget to journal this weeks events - for myself as much as anything else! If you have been following the blog, you will know Luke's sister had an EEG done just to rule out any epileptic activity and I am delighted to report that the EEG … Continue reading More Clusters, ineffective hospitals, irritable mum!
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
Epilepsy Surgery?? Really!
Since my last post, unfortunately we haven't had the clear run we were hoping for. On day 12 of retrying Trileptal Luke came out again in a drug rash and therefore we had to stop him taking it immediately. To say that my husband and I were devastated is an understatement! he had gone from … Continue reading Epilepsy Surgery?? Really!
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