Anyone familiar with scn8a epilepsy??? What meds have helped??? The neuros want us to try Topamax for my 13 year old daughter but I am being told that's not the medicine.. That a sodium channel blocker such as trileptal or Dilantin work better. Any info much appreciated
Topamax is something to avoid if their is a family history of Kidney stones. I have experienced four kidney stones in one year! I'am always very diligent about water drinking...sometimes doctors say I am to hydrated. After my four kidney stones I stay hydrated even more than before the kidney stones. I much rather have seizures than kidney stones! Best of luck to you and your daughter.
Take care Fawn π
My son has SCN8A-Topamax worked for a couple of months, but then had breakthrough partial seizures-it eventually stopped working-Trileptal has worked well with complete seizure control and less side effects on the kidneys.
Keppra is often not a good medicine for SCN8A and makes seizures worse.