Today marks a very special milestone for Luke, because today he is one month without any day time seizures….and two weeks with no Nocturnal seizures, this is huge!
It’s taken 7 months and various combinations of medications but finally we are all starting to breathe again as Luke’s current doses of Lamictal, Vimpat & Frisium are finally getting on top of his Epilepsy. We have seen shorter periods of maybe one or two days of reduced/no seizure activity but to go from having 30-40 seizures a week to zero is immense.
Also in the past month Luke has had a pretty nasty tooth abscess with two different antibiotics. He also had a mild flu and recurrence of Cold Sores but even with these hiccups the seizures have still not broken through.
In early September I made the decision that we would try another small holiday away with the kids, the Summer had been a tough road for us all so I booked for us to go to Disneyland Paris and we went last week for 3 nights – it was amazing!!
I was ready for an explosion of seizures, I packed extra meds, Luke’s emergency medication – I was prepared for the worst but despite the early starts, the late nights and four long days of walking, not one seizure! We actually couldn’t believe it, one day we walked 16 Km, and although we had two very tired children no erratic or worrying behaviour, we all had the best holiday ever. Such a tonic to spend some quality time together as a family with NO drama!!
Also as a side note, I took a letter from Luke’s Neurologist stating his diagnosis and we were able to get him the Priority Pass which was amazing. The longest we queued for any rides was about 15 minutes and Luke was treated so well by all the staff. This made the biggest difference because he wasnt getting agitated or tired standing in long queues and we were able to revisit Luke’s and his sisters favourite rides again and again.
Luke is a huge Star Wars fan and so we signed him up for Jedi Training, and he got to go onstage with the other Padawans and fight Darth Vader – an amazing memory he will have for life and to see him so happy after the worst year of his life made my heart swell with pride at how brave my little warrior is.
My husband and I also attended the Epilepsy Ireland National Conference earlier this month and I highly recommend visiting their website to review the videos of some of the Speakers, they should be uploaded soon. It was great to meet other parents of children with epilepsy and hear about their experiences, it also made us realise how incredibly lucky we are to have Luke and to see him doing so well.
Epilepsy is an illness where anything can change in a moment, but for now we are going to celebrate these successes and enjoy what may be a honeymoon period, but for the first time since we started this journey with Luke I see a light at the end of the tunnel and as always look for more good days than bad and to keep making memories! R xx