(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
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!)
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
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!
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
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
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!
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 Seizures in 24 hours: Life with Epilepsy
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