A few weeks ago Josie had a routine followup visit with her pediatric neurologist, Dr. Sadlier at Wellington Hospital. We are feeling very grateful that we can leave her office with smiles on our faces and "thank yous" being exchanged.
She confirmed through an epilepsy research group that we joined (and had blood tests done by) that Josie has the SCN1 gene mutation. We can't remember if it is A or B or if that makes a difference. We don't know why but are somewhat relieved that we can point our finger at something and say, "This is why Josie has epilepsy."
At any rate, Josie continues to be seizure free, 1 year and two months now! The doctor has decided to leave her on the current doses of her meds (Lamictal and Epilim) for at least the next year. We'll see her again in 6 months and if all is still going well (fingers crossed, knock wood, legs crossed) she will schedule another EEG then discuss weaning her off of what she is on.
This is all fine with us as Josie continues to be bright, sassy and herself while on the current doses. The doctor also explained that as she grows and the doses stay the same she is essentially very slowly weaning herself already. All very exciting news.