On Tuesday we met with Roxie's Neurologist, Dr. Nelson, to discuss where to go from here since she's now had 5 seizures in less than 3 months. The good news is that the eye movement that Roxie continued to have for an hour last Friday even after the first dose of Diastat is a minor seizure and does not cause brain damage. Also, she explained that epileptic patients who may have never had a status seizure as a small baby or child, may later have seizures that progress into status. This is because as the white matter in the brain grows because it allows more and deeper connections of the activity. I guess that made us feel a little better. She gave us a new arsenal of medications to try to use when Roxie does have another seizure including a tablet that dissolves in the mouth and a medicine that we can squirt up the nose. And we have a schedule to increase the anti-seizure medications whenever Roxie does have another seizure. Dr. Nelson did mention that there was a small possibility that Roxie could be having so much more seizure activity because of a stroke. We have seen no regression, but she said it is possible the stroke is in an area that doesn't affect development. Dr. Nelson indicated this is a remote possibility, but Roxie is at risk for stroke because of her Mitochondrial Disease. So we are scheduling an MRI in the next few months just to take a peak at her brain. We hope and expect everything to be OK, but it was a reminder that in the future complications and regression are always a possibility for Roxie.
But to end on a happy note, Roxie has been taking steps with her PT and with her teachers at school for the past month. Her muscles continue to strengthen! Yeah Roxie!