Charlotte House: Managing a Rare Form of Epilepsy

My guest this week is Charlotte House, talking about her son Barnaby who has a rare form of epilepsy. Barnaby can have up to 70 seizures a day and we discuss how Charlotte manages that and what measures have had to be put in place to keep him safe. We talk about the on-going wait to find out what’s causing Barnaby’s seizures, how Charlotte finds researching everything helpful and she gives some great advice on how to keep track of information and appointments. We also discuss the mental toll of waiting for a big upcoming surgery and how she finds time for moments of self-care throughout the week.

 Tags: epilepsy, infantile spasms, brain surgery, SEN parenting