After meeting with the neurologist today, we are hopeful that we can get to the bottom of Caedyn's episodes. We found that the 1000mg dose of Keppra daily was making her CRAZY (really, ever seen a raging 6 month old? She was out of control!) with crying fits lasting well over two hours and uncontrolled seizures. So, we are decreasing her Keppra (hopefully, we can get our smiley little girl back) to 600mg a day, staying on the Valium and adding Topamax, a med commonly used to treat adult migraine but also has proven helpful in treating infant seizure and spasm. We have a 24 hour video EEG scheduled for tomorrow already to pin point exactly where the seizure activity is starting from. We are hopeful that Dr. Umfleet gets the answers he is looking for. We are hopeful WE get the answers we are looking for! So, for now we wait. The seizures may still happen while we adjust meds so we need your prayers for patience and trust in the physicians treating Cae. We may look into second or third opinions in the future as we have a couple people that know our family and friends that are willing to weigh in on her diagnosis. We are thankful that we have such connections!
I am also grateful to have such an understanding employer and very supportive work family. I could not get through this if I had to worry about my job. Everyone at South Pavilion Internal Medicine is wonderful and I appreciate everyone going above and beyond their daily duties to pick up my slack!! I am also so thankful that Jeff is home. He may not be working, but he is home and not on the road. I knew I picked a good one when I picked Jeff! We are truly blessed and know that God will provide for us despite these tough times.
So, this is the most recent update. I will post pics and more after her EEG. She is sure to look stellar with all those wires wrapped around her head! Thanks for the prayers!