We met with Dr. Kabbani today, Grace's seizures decreased to two each day for the past week except for one day she had three. We don't know whether it was the ACTH or the klonapin that caused the reduction in seizures or a combination of the two. We thought this was really good news but apparently this is the max dosage we can really give Grace and since there was a decrease in seizures it would make sense to continue for one more week to see what the results are. Grace should be seeing zero seizures a week with ACTH, maybe one.
Kabbani thinks Grace may have a little Thrush starting, she already has some diaper rash and a yeast infection. If she has thrush we will need to start reducing the ACTH as her body simply can not fight off an infection at this time. We went to see our pediatrician but he was out for the day so we saw another doctor in the group he did say she a mild case of thrush but said it was nothing to be concerned about and that continuing on the ACTH treatment was the best course of action, he should know after all he has had another patient on ACTH in the past.
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