Always Have Hope!

I’m not really sure how to start this post, probably because it’s not one that I really imagined writing…just yet anyway – but here it is.  As you may have seen in the October post, things were looking positive for Luke and I am happy to report this has continued.

Luke was diagnosed with Epilepsy on 10th March this year and one of the first things were told by his Consultant was that Frontal Lobe Epilepsy can be a difficult one to get under control.  He was right, Luke was allergic to the only medication (Trileptal) which really had a great impact on his seizure activity.  This was followed by Epilim, Vimpat & Keppra which really did not have any significant impact on the frequency of his seizures (up to 15 in 24 hours would be typical).  The combination of Vimpat & Keppra did reduce the average weekly frequency and lessened the day time seizures, however the side effects of Keppra were so bad and whilst on the maximum dosage Luke was still not seizure free, so it was withdrawn much to my delight.

By July, Luke had effectively failed 3 AED’s and was allergic to a 4th.  It was at this point his Consultant decided to investigate the possibility of Epilepsy Surgery, and in conjunction with this introduce Lamictal alongside Vimpat & Frisium (which he has been taking since diagnosis in conjunction with the other AED’s).  Lamictal has to be introduced slowly to avoid any sort of reaction, and after experiencing the Trileptal rash on two occasions I was nervous to say the least.  Also the thought of working it up very slowly over a 10 week period, I was worried about how out of control his seizures could get in that time.  And predictably it was within the first 6 weeks of introducing Lamictal that Luke started to have Cluster Seizures, having 22 in 12 hours; and being hospitalized on another occasion.  It was an incredibly stressful period, but with credit to his Consultant he was not giving up on Lamictal until Luke reached a good dosage.  Almost miraculously around week 8 – 10 we started to see a reduction in seizures, first during the day and slowly the nocturnal seizures started to ease.  We saw 3 consecutive days & nights with no seizures at all, and thought wonderful even 3 days between would make such a difference to his quality of life and sleep especially.  Then we saw a 5 day break, then a week, I was holding my breath.  With Luke still having the odd nocturnal seizure I asked his Consultant could we push it up slightly to see can we “kill them off altogether” and that was agreed.

As of 13th November, Luke is now one month seizure free….and counting!!!

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In that period of time, we took a trip to Disneyland Paris, lots of walking late nights and no seizures.  He has had a tooth abscess, two antibiotics and a tooth extraction, no seizure activity, so despite what are common triggers – the combination of medication is working perfectly!

Luke is doing great at school, he’s working hard, managing his homework and I can’t say we have noticed any significant side effects with this combination of AED’s.  I am a little concerned that he struggles with Word Finding  occasionally but he has been assessed by a Speech & Language Therapist and we will see if it may just be normal for a child his age.

Luke is happy in himself, laughing and playing and joking away.  He is now jumping out of bed and full of chat in the mornings, not complaining or miserable after a disturbed sleep and sheer exhaustion.  Lot’s of people have also noticed that he doesnt have the same hyper activity, he is calmer and and his behaviour is much more controlled.   He is delighted with life and so are we!

For the first time since his diagnosis I am really optimistic about his longer term prognosis, I am fully expecting breakthrough seizures but at least I know now that his epilepsy is not fully “immune” to medication and it can be controlled.  We will take each day as it comes, but for now I am just looking forward to Christmas with my wee family and hoping for a little less dramatic 2017!  R x

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