The Unknown Future

I think it is the unknown future that is the hardest with Dravet Syndrome. Hannah can be doing really well and then "bam!!" just like that our day is halted by seizures. Hannah went 10 days without a seizure after we got our diagnosis and now the last 4 days she has been having lots of myoclonic seizure activity. Today she actually had a tonic-clonic seizure, her first since Feb. 14th. We seem to do ok for a little bit when she starts new medications and then they don't seem to do their job after a while. A friend and I went out today to run errands and we kept noticing that her face was getting flushed and she looked feverish. We would take her out of her carrier and a little bit later she would be fine. Now mind you it is far from hot outside. It never got out of the low 70's today and she was very lightly dressed. This will be Hannah's first big summer where she actually will be out in the heat. It may become a problem. Children with Dravet Syndrome can have a hard time regulating their body tempature and they may not sweat to cool themselves down. This summer may be interesting. I guess it will be light clothing, fans, cool washcloths, and possibly a cooling vest when she gets bigger. We never know from one moment to the next how things will be going in our house. It can go from calm and relaxing to a full fledge hurricaine within minutes. Like I said, The Unknown Future.