Let the guessing games begin. Sophie has been off seizure medication for almost 5 months. So we let her seizures be what they were. She had her good days and bad but we never had to worry about whether to increase or decrease or who knows what to her medication. Like I said in a previous post, I took a hiatus from thinking. It has been almost 3 years since her first seizure and sometimes you just need to step back, live life and not be consumed by the "what ifs" and "what's next". But now I am back in the game. Counting seizures and documenting schedules. Which means I have to consciously try to keep a close on eye on her. Which is not that easy when you have a one year old to also look after. So I try my best.
Yesterday, we increased Banzel to 200mg (100mg in AM and 100mg in PM). Still a very low dose. We will stay at this dose for 3 days before we increase again. Which brings me to the guessing game this morning. Not a good morning. She woke up at 5am and had 16 seizures. She went back to sleep and then woke up around 7am and had another 15 seizures. I am sure it doesn't have anything to do with the medication but it makes you wonder. So now I just hope and pray that Banzel is the "IT" drug for Sophie. I will try and let the next few weeks be what they are and try not to wonder too much.
Yesterday, we increased Banzel to 200mg (100mg in AM and 100mg in PM). Still a very low dose. We will stay at this dose for 3 days before we increase again. Which brings me to the guessing game this morning. Not a good morning. She woke up at 5am and had 16 seizures. She went back to sleep and then woke up around 7am and had another 15 seizures. I am sure it doesn't have anything to do with the medication but it makes you wonder. So now I just hope and pray that Banzel is the "IT" drug for Sophie. I will try and let the next few weeks be what they are and try not to wonder too much.
2 comments:
I'm trying to think back since right now I'm in my "Aidan is finally seizure free again" mode, but I think Aidan's seizures increased when we started him back on meds after we took a 3 month break. I'm hoping you get to see the success we're seeing once you get to Sophie's full dose. Hang in there :-)
I'm keeping my fingers crossed that Banzel ends up being a wonder drug for you guys! It isn't so far for Lily, but we're hoping that with the addition of another med (debating between Depakote & a 2nd vigabatrin trial), we'll get better seizure control.
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