I had my first tonic clonic seizure when I was 3 1/2 and by the time I turned 4 years old I was having uncontrolled seizures throughout the night, a couple of nights per week. I also started having tonic, A tonic and myoclonic seizures as well as tonic clonic during the day. I was commenced on Sodium Valproate which helped the day time seizures but my biggest problem was getting through the night and waking up in the morning! I then started to take Lamotrogine in conjunction with Valproate.
Doctors think I may have Doose Syndrome, but they are not wholly sure. My seizures remained uncontrolled for many years and I tried various other drugs and the Ketogenic diet but nothing worked. This obviously impacted hugely on my education. I have problems with my memory, attention and concentration and have been diagnosed with Attention Deficit Disorder too.
When I reached 8 years old my seizures were getting worse through the night and we changed my medication again to that which I initially tried, and this time it is working. I am currently having a few seizures every couple of months. I am obviously feeling much brighter and happier!
I really enjoy coming to Hope; meeting and playing with other children with similar problems to myself. It helps me to understand my own condition. It is great for my Mum to be able to talk to other parents who can entirely empathise with concerns regarding Epilepsy, discuss new treatments and ask advise from professionals who attend. Before Hope was set up, my Mum had no support network. I really look forward to the monthly groups and feel that I've made some great friends.
Written in 2020