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 – there are longer more complicated names for these meds but to be honest it was difficult enough to remember the branded names and so I focus on them. From the first day that Luke started the meds his seizures during the day stopped immediately, he continued to have seizures in his sleep but there was a lot of scope to increase the doses so I was immediately assured we were on the right path. I thought wow how lucky is Luke that his seizures can be controlled. In the first conversation with out Neurologist he said 30% of patients with Epilepsy will never be seizure free, and from his experience Frontal Lobe Epilepsy can be one of the tricky ones to medicate, so this early response to Trileptal was really encouraging to me.
The seizures during the sleeping pattern continued to decrease both in terms of frequency and also in nature, instead of moaning and leg movements Luke maybe only stiffened slightly,and opened his eyes for a few seconds before going back to sleep. He always had a seizure going into sleep and also coming out of sleep – I guess sleep is a trigger and I accept that the night-time seizures will be hardest to get completely stopped. People tend to say oh well better night time seizures than day time, but no when Luke is having maybe 5-6 seizures per night he is completely exhausted in the morning, dark circles under his eyes – he is simply not getting quality sleep and for me it is equally important to control these as much if not more that the day time seizures.
So as I said, we were getting there with the medication, seeing results we wanted, and after having a clear Brain MRI to confirm there was nothing more sinister lurking and no obvious signs of malformations in the brain Luke’s Neurologist was happy to discharge him on Tuesday 16th March, the day before St Patrick’s day – and feeling confident that we can kick Epilepsy’s ass we headed home.
By the Saturday, I noticed Luke had started to scratch his leg, I put some cream on it, but after giving him a shower that evening I realised he had a significant rash that was starting on his feet and moving up his legs.
I had been warned in the hospital that a possible side effect of the Trileptal was an allergic reaction in the form of a rash so I took him to the Out of Hours GP straight away. She examined Luke and called Temple Street, but there was no Neurologist on Call, she did speak to another Consultant who recommended that I stop the Trileptal. Worried that suddenly stopping an anti epileptic drug without replacing it with another put Luke at risk of Status Epilepticus for the fist time (and I’m guessing not the last!) I found myself between a rock and a hard place, so on assurance from the GP and checking Luke’s urine that he was in no immediate danger from the rash I made the decision to continue with the Trileptal and give Luke an antihistamine until I could speak with the Neurology team on Monday.
After reviewing photograph’s of the rash, Luke’s consultant confirmed it looked like a drug rash and Trileptal was the most likely of the two medications to cause this. He asked that I immediately stop the medication and wait for the rash to clear before starting a new medication called Epilim. Yes he was at a higher risk of seizures but I have the emergency medication (Bucclom) if I needed it! It was only when Luke stopped taking the Trileptal and I heard him giggling and laughing with his sister that I realised I didn’t know when he last had laughed the entire time he was taking it, he had been really solemn, irritable and by a six-year olds standard sad – I was happy he was off it, it wasn’t the one for him.
Luke started Epilim Chronospheres on the Wednesday night, they are like little sachets of a powder substance that can be sprinkled of a yoghurt or taken in a drink, Luke preferred them with yoghurt and said they tasted like flour, but it was never a problem for him to take them. He will pretty much take any form of tablet, he just really does not like liquid medicine so this was acceptable enough to him. The rash was almost completely cleared by then, and so starting on 250mg once a day we watched and waited.
It was a long few weeks, we increased the dosage incrementally but even on 500mg, it was quickly evident to me that Epilim wasn’t working – he was having stronger seizures in his sleep, and much more frequent, I was waiting and hoping it would just take time and would suddenly have an impact. We spent a night in a hotel as a family over Easter for a little break, and during the night he had 6 seizures, then the next day he was really lethargic and no energy, when I got home he said he was dizzy and felt hot. I took his temperature and it was 103f, after another visit with the GP they couldn’t find any source of infection, the Neurology team said it was highly unlikely to be the medication, and after 4 days of fever Luke started to get blisters on his lips which transpired to be the Herpes Simplex Virus – we just needed to sit it out, talk about bad luck!!
Just as Luke was over the virus he started to have seizures again during the day, I called the Neurology team (again!) and with Luke having approx. 11 seizures in 24 hours they asked for Luke to be admitted to hospital again on the Monday. Over the first few days, before they would officially claim the Epilim “failed” they administered high doses both intravenously and orally, increasing it to 1000mg, and ultimately on checking his bloods pushed a little too hard and the limits were too high. By the Friday, with little change in his seizure activity Luke’s Neurologist confirmed the drug had failed and it was time to introduce a new one. Statistically, for the best long-term prospects of being seizure free you want the first or second line medication to work, his first hadn’t failed – that was just an allergic reaction, so this was his first failure….and hopefully his last.
From early research, I was reluctant for Luke to be put on Keppra – it’s pretty renowned to invoke behavioural issues in children, and given Luke’s nature I really feared that this one could make him completely uncontrollable. However when Luke’s Neurologist advised it was his next drug of choice (in conjunction with Frisium), I placed my trust in him and agreed to try it. Luke started Keppra on the Friday, and from day one the day-time seizures stopped immediately – exactly as Trileptal had done…so I had hope! Over the weekend the night-time seizures continued in a similar way, approx. 5 per night but decreasing in intensity so again Luke was discharged on the Tuesday, with further increases in dosage over the following week or so, and slowly reducing the Epilim to phase it out completely within the week. Since we have come home Luke has remained seizure free during the day and still having 2 maybe 3 seizures in his sleep. So far his mood is good, a little irritable and tired but nothing extraordinary; its early days but hopefully it will be third time lucky for my boy!