I was feeling so positive after the last increase as she went 2 weeks without a seizure. Unfortunately she then had 2 seizures within 3 days, so still 4 in the month.
At the current dose we only have 2 months supply left, so it's decision time. With our supply getting low, we need to consider dropping the dose a bit. We haven't got near the amount she could be having, but thanks to your wonderful help we were able to go from 50mg/day to 250mg/day. The 550mg/day is just far too expensive to consider. Her current dose costs around $500 per month.
We are so thankful for the improvement we have seen over the last months. When I saw her pediatrician last month he asked how her sleeping was going. It was only then that I realized she had been sleeping so much better. She falls asleep really quickly and easily at night now, and she doesn't have her regular 4am waking up.
I also had her IEP (Individual Education Plan) meeting with her teacher this last week. They are just so amazed at her overall improvement in well-being. Last year she regularly had times where she would just cling to the teachers and say "feel bad". There were many days when they could just not even attempt to get any schoolwork done with her as she was so unsettled (neurologically or emotionally) and that has been so greatly improved this year. She is able to focus on her work so much more and they have been so impressed with how well she is doing at school.
It's been a huge blessing for us to have the "feel bad" times almost disappear (I can only remember this happening once in the last 2 or 3 months). This used to be something that could be happening almost every day and sometimes lasting for hours at a time.
So although I can't give a clear number of reduced seizures (how I have longed for this to happen), I am very grateful for the improvements we have seen for Asher over these last months. And I thank you all for your part in making that happen.
