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<\/a><\/p>\nToday, my mom and I drove down to MUSC with Mary Clare for a neurology clinic visit.\u00a0 I was anxious to visit and talk to her neruo team to try to get a few answers.\u00a0 But as is typical with neurology, I left with almost as many questions as when we arrived.\u00a0 I absolutely love her neurologists and everyone that we work with, I just get so frustrated with the field of neurology.\u00a0 It’s so different from cardiology.\u00a0 So gray.\u00a0 Cardiology seems much more black and white.\u00a0 I like black and white.\u00a0 Yes or no, up or down, good or bad.<\/p>\n
I’m learning.\u00a0 I’m trying.\u00a0 I’m getting there.\u00a0 Slowly.<\/p>\n
Mary Clare has continued to have her daily “tics,” which are a bit nerve wracking,\u00a0 but I have learned to just watch her, note them and carry on.\u00a0 No biggie. She doesn’t even realize it.\u00a0 She has had a few days since she was discharged last month with no tics, which are great, but as soon as I brag on those tic-free days, the next day, she’ll have 10 tics or a seizure. She woke up last Thursday with a swollen face and just not herself.\u00a0 As soon as I realized her swelling didn’t seem to be “sleepy morning bed face,” I called her cardiologist NP to discuss.\u00a0 She wasn’t quite herself and had a 10 second seizure with about 30 minutes of blank stares and tics.\u00a0 We were on the road to MUSC within the hour.\u00a0 After blood work and an echo, she was cleared by cardiology.\u00a0 No troubles as far as her heart.\u00a0 Neurologist was able to review blood work and we learned that her Depakote is, in fact, at a therapeutic level and her kidney and liver function is in good shape.\u00a0 Good news and bad news.\u00a0 The good news is that the Depakote is in her, at the appropriate level, and not harming her body.\u00a0 Bad news is that she is still having seizures.\u00a0 She had a 10 second seizure on the way home from Charleston that afternoon.<\/p>\n
So today, we discussed options.\u00a0 She’s doing “okay” on the Depakote.\u00a0 It seems that she is more aggressive and hyper, although most children become “more mellow,” our NP said today.\u00a0 She explained that there are those rare kids who are adversely affected.\u00a0 (Should have known-even Benadryl hypes up both of my girls.)\u00a0 Her seizure activity has definitely calmed down lately and her seizures are much shorter and not as violent.\u00a0 I’m hoping and praying that the further away from the stress and trauma of open-heart surgery we get, the less seizures she’ll have.\u00a0 We’ll see.\u00a0\u00a0 Her team also wants to have a three day, video EEG study within the next couple of weeks.\u00a0 Hopefully after that, we’ll have a few more pieces to the puzzle and will be able to make further decisions regarding her Epilepsy.\u00a0 Until then, we’ll continue on.\u00a0 We’ll play outside everyday, eat lots of cupcakes and look forward to the pool opening up and summer!<\/p>\n