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 having between 15 – 35 seizures a week to just six in the week previous! and that was on a really slow starting dose – Trileptal works to control the seizures but his body just obviously cannot tolerate it!
As per usual on Monday morning 11th July I called the help line number for the wonderful Neurology Nursing team at Temple Street, and they came back to advise that his Paediatric Neurologist would now like to try Lamictal – another AED than has a really good reputation as being a strong anticonvulsant however it takes 10 weeks to reach a “therapeutic” level as otherwise patients can develop a sensitivity rash – you can imagine my reaction when heard that! I was concerned that with Luke’s seizures being so frequent was this really the best Drug of choice considering it will take much longer to increase than others he has tried (and failed!). The nurse suggested I have a call with his Neuro, which was scheduled for Wednesday.
A really nice guy, Luke’s Neuro took 40 minutes out of his day to have a call with me – which I have to say I am very grateful for. He reassured me that he knew what he was doing and that Lamictal works in a similar way to Trileptal (something to do with sodium channels apparently), and it was worth investing the time to trial the drug, and he would aim to come down on the Vimpat in correlation with increasing the Lamictal, and ultimately aiming for Luke to only be taking two AED’s, which sounds good to me.
He did however also discuss how he would like to start working Luke up for Epilepsy Surgery, as at this point he has effectively failed or been allergic to four medications so far, including Epilim, Keppra, Trileptal and Vimpat. From Luke’s first VEEG the irregular readings are predominately coming from his Right Frontal Lobe and although the MRI did not show an obvious Cortical Dysplasia, from what I can gather it’s not absolutely conclusive. So his Neuro is going to schedule another VEEG and also a PET Scan to see if they can determine if Luke would be a possible candidate for Surgery. And to research if this in an option in parallel to further trialling more medications.
I will admit, it was not my first time to think about Surgery, when Luke was first diagnosed I had read that Frontal Lobe Epilepsy Surgery outcomes are better within the first 5 years of diagnosis, but no mother would consider such a thing lightly. For the moment I am happy to proceed with determining first of all if he is a candidate, and then worry later down the line if that route would be the best option for Luke.
On a positive note, Luke started Lamictal in conjunction with a pretty hefty dose of both Vimpat and Frisium on Thursday, and that night he had only 2 seizures, a significant drop from 7 the night previous (on just the Vimpat & Frisium). However he has had a number of day-time seizures today and yesterday so again I am cautiously optimistic considering for the first 7 days he is only on 5MG once per day of Lamictal, taken at night so the reocurrence of seizures in the day time is not totally unexpected.
I still feel tremendously guilty about giving Luke such a cocktail of drugs to take, it gives me a heavy heart when I am organising them for the week, but he takes them twice a day without ever putting up much of a fight. I explain every time we start a new one, and usually his first question is “what colour is it?” He seemed happy enough that this time the new one is white! I am so proud of my son, my little warrior fighting epilepsy every day. It’s his birthday in 11 days, I just hope his 7th year will be a smoother ride than the year he’s just had – I know that will be my wish as he blows out his birthday candles!