Charlie, my son, was 4 years old when he had his first seizure.
He was eating his breakfast when he dropped to the side, giggled and his right arm extended. I couldn’t believe what I was seeing but took him to A and E where he underwent lots of tests.
When the CT scan came back clear I was relieved there wasn’t anything sinister causing his seizures, however things certainly weren’t going to be easy. C
harlie spent two nights in hospital where he ended up having about 16 seizures in each 24 hour period. Medication was given and we were discharged from hospital.
He continued to have seizures every day, the worst day being 12 seizures in an hour and more throughout the day. He had mri scans and eeg’s. It took so many different combinations of drugs until things slowly started to improve.
He went 5 years without a seizure so his epilepsy doctor decided to wean him off his drugs, the first one he came off and was fine, and the same with the the second, his dose of the third medication came down quite a bit but he started having seizures again so we gradually had to build the medication up again to more than he was on before.
As with all medications came horrible side effects which accompanied by his hormonal pre teen body was really hard for him and for us to see. He is now 13 and still on a good dose of medication but high school has been difficult for him. I’m not sure all of his teachers understand that epilepsy doesn’t begin and end with seizures, there is so much more to it and how much someone with epilepsy has to go through.
I wish that more resources and education were available, so many do not fully understand epilepsy and I strongly feel that something should be done about this.