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, 5 awake in the evening and the rest in his sleep. By 11pm both his dad and I were getting concerned that they just were not stopping and he was having one every 10 or 15 minutes, so we called the hospital he attends and the Consultant on Call advised us to give him an extra 10mg tablet of Frisium/Clobazam to see if that would settle them, if not were to take him straight to A&E.
The Frisium did not stop the seizures completely but it did reduce the frequency to one every 60 – 90 minutes, as usual on a bad night I took Luke into bed with me and we saw through the night together. So far today he has not had any seizures since wakening – so fingers crossed last night was a once off.
It is frightening to feel so vulnerable late at night, anxious about whether the seizures will stop, will they progress onto a Tonic Clonic (which he has never had – thank God), or worse Status Epilepticus. Do we use the emergency medication Buccolam, or give him an extra medication?? It really reminds you that you may have weeks of relative normality, expecting 3 or 4 nocturnal seizures, but then ‘wham’ something unexpected occurs and you realise you can expect very little and understand less about this disease called epilepsy and what really is normal anyway!
Luke has just started week 4 of introducing a new medication Lamictal, whilst still on a full dose of Vimpat and Frisium. After last night his Neurologist has advised to give him Frisium 3 times per day to try to avoid the clustering seizures whilst we increase the Lamictal dosage in the coming weeks. Luke has also undertaken the first step of surgery work up by completing a two-day VEEG, which we are waiting for the full report. The next step will be a PET Scan, presumably in the coming weeks and from the outcome of both we should have a better idea whether or not Luke would be a good candidate for surgery. A positive or negative outcome are both very scary prospects for mum, but for the moment I just have to go with it!