Ok so lets start with some stats, considering it’s been a little while since I was on here:
- Its been 101 days since my son Luke was diagnosed with Frontal Lobe Epilepsy aged 6 years and 8 months.
- So far Luke has tried a total of 5 anti-epileptic medications in various doses and combinations
- He has taken an allergic reaction to 1, failed 2 and is currently on 3 different medications whilst we increase the levels of one and come down on another
So almost six months into 2016, overall its been a pretty shitty year so far! over 3 months since Luke’s diagnosis and unbearably we are not really any further on with finding a suitable AED (Anti Epileptic Drug) that can make any real impact on the daily/nightly seizures Luke is experiencing. In the past 24 hours, Luke has had 15 seizures (7 awake and 8 nocturnal), all similar in type, Complex Partial Seizures. He was so exhausted today I had to keep him off school – he was like a walking zombie!
Currently we are withdrawing Keppra as it proved ineffective in stopping Luke’s seizure activity, and his behaviour has deteriorated so much that on a recent family holiday he took a bread knife out of a kitchen drawer and pointed it at his 8-year-old sister during and argument, held her head under water in a swimming pool and during a moment of rage jumped out of his bedroom window (ground floor thankfully!) and knocked his head on a washing line. Always an active child, Luke has never been violent and this behaviour is totally out of character!
So in addition to the lessened dose of Keppra, for the moment Luke is on Frisium twice a day and Vimpat twice daily – but my thoughts are that we are looking at the introduction of yet another AED and its undesirable list of side effects!
Coming toward the end of the school year, I have heard from his teacher that his school work is really starting to suffer. Yes he is only in his second year of primary school, but he has so much potential – and I hate the thought that this period of his life will leave a permanent mark on his learning and academic abilities. His attention and ability to concentrate has deteriorated significantly, his reading skills are not developing with his peers and due to his behavioural issues it is becoming apparent that he feels isolated from his friends.
I’m worried – he has 9 weeks off in the Summer holidays, and to me it already feels like a countdown. Will the epilepsy have “settled” by then, will he be back to some sense of normality – will he feel rested and ready for what I know from his sister is a big jump in terms of workload, homework and an extra hour each day of school??
Due to the behavioural issues we have experienced with Luke, as a family we have been referred to a Clinical Psychologist and a Neuro Psychologist – hopefully this will prove helpful as I certainly feel the cracks are starting to show. The months of worry and stress has affected us all. My daughter has developed a nervous “tick”, she’s a sensitive soul anyway, but evidently all the attention on Luke, his illness and the worry is weighing on her too.
I know there are families who face much worse than us – but today I am definitely feeling the strain – here’s hoping for a better second half of 2016!