Josie was the perfectly healthy baby, but when she was 3.5 months old I woke to her having a big seizure. The ambulance came but couldn’t stop the seizure. Eventually she stopped and we were rushed into hospital for lots of tests. We were told it was probably a one off. However two weeks later the same happened, and the pattern continued. Every two weeks or so Josie would have a seizure needing rescue medicines. They were usually 20-30 minutes long and life threatening.
We were lucky enough to fall under a Dravet specialist at Birmingham Children’s hospital. He recognised the symptoms and we found out the anti epilepsy drugs she was on were aggravateing her seizures not aiding them. So he changed the meds and the seizures became less frequent but still prolonged seizures came once a month. The genetic testing confirmed Dravet syndrome later that year and because of that diagnosis a range of medicines have become available to Josie. We are making our way down the list as unfortunately Dravet syndrome is very drug resistant, but Josie’s seizures are a lot shorter than in the beginning and I am a lot more confident in dealing with them at home.
However our consultant told us always expect the unexpected. He was right, a massive prolonged seizure could happen today, tomorrow or a month from now. With so many triggers including excitement and a slight temperature change, Josie could have a seizure at any point day or night, and it’s anyone’s guess what type of seizure it could be!
Josie has developmental delay and at two and a half still cannot walk and has no balance. But that doesn’t slow her down, she is such a happy girl who loves music, dancing and animals. She makes herself heard and attempts to climb everything in her path. She is so strong. In every way - a true Dravet warrior!