We saw Dr. Kwon. We wanted her opinion of the MRI's (she's reviewing and will call us back) and how she would have treated the IS had we been going to her clinic/when she would wean the Zonisamide. (We are currently going to start weaning in a week).
She told me that she had never seen a case of IS being brought to control as fast as Andy's. If he was seen by her, she would have began with phenobarbital and ACTH would have been the last resort after every other medication. She never uses Zonisamide. She also would have predicted a far poorer outcome then Andy has. She explained that this is difference between an older doctor set in their ways like herself and a younger one like Dr. Pugh in Albany. And they never would have known they weren't doing the best for him.
How do I look Dr. Pugh in the eyes and thank him for saving my son's brain? I'm overwhelmed with gratitude and each word feels more inept than the next.
I feel that way about Jeromy's neurologist. She identified his IS very early and treated it aggressively. He still has severe CP (not related to the IS) but he was seizure-free for 8 years, off all seizure meds for 4 years, and now has seizure control with a low dose of one med at age 11. He is cognitively very aware and I am very thankful that we were able to preserve that.
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