Saturday, September 17, 2011
I have not seen any seizure activity since we began weaning Jacob from his valproic acid (Depakene) on September 7th. He was taking 350 mg twice daily and is now taking 250 mg twice daily. Since I have no idea at which point his dose will no longer be therapeutic (according to levels in his blood), I have been as vigilant as ever. As much as I would give for him to be drug-free, I have no tolerance for seizures. I believe that when Jacob started valproic acid in February 2010 he was taking 250 mg twice daily or 5 mL of syrup but I saw seizure activity and his dose was increased twice more to 6 mL and then 7 mL, his dosage for nearly a year and a half. Withdrawal can actually produce seizures which is why it has to be weaned slowly. Dr. B would NEVER recommend weaning unless he believed that Jacob had a chance of being seizure-free. It is the impossible dream but Jacob has beaten the odds before, early on, when Dr. B didn't think that ACTH would work for Jacob's Infantile Spasms because brain malformation was the known cause or that Constraint Therapy would be effective because Jacob was born without a motor cortex in the left hemisphere of his brain. If Jacob is destined to live with epilepsy? We are living the dream right now. He is thriving. He is fulfilling his potential, whatever that may be. But I will be devastated if I ever see another seizure.