Which advice would you give to someone who has just been diagnosed with STXBP1?

Expect slow steady progress. Stay patient and follow the advice of your dr's. If something doesn't feel right always seek out another opinion.

As the parent with a child with stxbp1 and epilepsy. I say it’s ok to hurt, it’s ok to cry, be angry and go through the stages of grief over and over again for some time but the fact of the matter is. Someone you love wether your child, family member etc. it’s not going away ever so the best way to help is to act fast! Find resources to give them a head start wether therapy medicine neurologist drs etc whatever they need! Once you have accepted act fast and start helping them because you are their advocate and their depending on you to see them through the best way possible. I bought a book called how to be the best advocate for your child with autism and other disorders and I swear it changed my whole outlook. I was depressed and ready to give up because I was angry and sad my child had this... but once I read the first chapter I realized how selfish I was being and that I needed to step up as a parent and be the advocate she needs