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!
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
The practicalities of living with Epilepsy
So we are pretty new to the world of epilepsy, and what this is really going to mean for our family. Firstly we know that Luke's epilepsy is not photosensitive, which as a 6 year old boy who loves his Playstation this is a huge positive. Luke has never had a Tonic Clonic seizure, the … Continue reading The practicalities of living with Epilepsy
It’s all about Luke
It's been over a month now since Luke's diagnosis of epilepsy. He has always been a lively child to say the least. The youngest of two children, I always said he never walked; he went straight from crawling to running. He broke endless toys, smashed a tv by flinging a toy gun at the screen … Continue reading It’s all about Luke
The Epilepsy Diagnosis
Monday 7th March 2016, I arrived at Temple Street Hospital Accident & Emergency with Luke, my 6 year old son after a sleepless night of observing his seizure activity. My wonderful cousin is a Neurologist in Northern Ireland, and although he treats adults not children had been a fantastic resource for advice in these early … Continue reading The Epilepsy Diagnosis
Birthdays & Butterflies
We didn't know it yet, but by Thursday 18th February 2016 my lively 6 year old son Luke had Epilepsy and having quite frequent Partial Seizures and we were on our way to the Isle of Man to celebrate my sister in law's 40th birthday. I had observed some "odd" behaviour Luke had been displaying, … Continue reading Birthdays & Butterflies
