MC’s Neurology Clinic Visit
Today, my mom and I drove down to MUSC with Mary Clare for a neurology clinic visit. I was anxious to visit and talk to her neruo team to try to get a few answers. But as is typical with neurology, I left with almost as many questions as when we arrived. I absolutely love her neurologists and everyone that we work with, I just get so frustrated with the field of neurology. It’s so different from cardiology. So gray. Cardiology seems much more black and white. I like black and white. Yes or no, up or down, good or bad.
I’m learning. I’m trying. I’m getting there. Slowly.
Mary Clare has continued to have her daily “tics,” which are a bit nerve wracking, but I have learned to just watch her, note them and carry on. No biggie. She doesn’t even realize it. 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. As soon as I realized her swelling didn’t seem to be “sleepy morning bed face,” I called her cardiologist NP to discuss. She wasn’t quite herself and had a 10 second seizure with about 30 minutes of blank stares and tics. We were on the road to MUSC within the hour. After blood work and an echo, she was cleared by cardiology. No troubles as far as her heart. 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. Good news and bad news. The good news is that the Depakote is in her, at the appropriate level, and not harming her body. Bad news is that she is still having seizures. She had a 10 second seizure on the way home from Charleston that afternoon.
So today, we discussed options. She’s doing “okay” on the Depakote. It seems that she is more aggressive and hyper, although most children become “more mellow,” our NP said today. She explained that there are those rare kids who are adversely affected. (Should have known-even Benadryl hypes up both of my girls.) Her seizure activity has definitely calmed down lately and her seizures are much shorter and not as violent. 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. We’ll see. Her team also wants to have a three day, video EEG study within the next couple of weeks. Hopefully after that, we’ll have a few more pieces to the puzzle and will be able to make further decisions regarding her Epilepsy. Until then, we’ll continue on. We’ll play outside everyday, eat lots of cupcakes and look forward to the pool opening up and summer!
Cupcakes at Cupcake in Charleston today.
Mandie Gundrum on May 24th, 2011
Just completed a 3 day EEG with Devin. I was nervous about the EEG (even though we have had five shorter ones including a four hour one), but also entertaining him for three days in a small hospital room and how it would it affect his other medical issues. Other than the ten minutes or so to attach him, everything went incredibly well. Wasn’t the results I wanted but at least I know, and I left feeling a lot more knowledgeable about seizures, treatments, discussing it with kids, etc. Let me know if you have any questions about the three day test from a mom’s point of view.