Naomi update
Friends and internet followers: In July, I made you aware that our youngest daughter, Naomi, had begun having frequent seizures. The increased in severity and so we took her to the emergency room. After a battery of tests over the next week, she was placed on anti-seizure medicine. That worked for a time. After going on vacation, the seizures came back, although less often and less severe. The pediatrician in consultation with the neurologist added a second anti-seizure med. Anne and Naomi then were able to visit the neurologist with her various scans and blood work. He noted that there were no visible tumors in the brain to cause the seizure, yet there was visible indication of the seizures. We continued to adjust the dosage to decrease their frequency (now at perhaps one a week). Thankfully Medicare coverage kicked in right before this began. Last week we visited the neurologist again. He wanted to see the whole family, especially out of concern for her white birthmarks which I and Ethan also have. We show many of the skin abnormalities indicative of Tuberous Sclerosis Complex, a genetic disease. This will be confirmed via genetic test when we have assurance Medicare will cover it. The the doctor is pretty confident this is the proper diagnosis. For the time being, our goal is to prevent Naomi's seizures via medication. From there, I'm not sure. It seems the common approach to this incurable multisystem disease is to treat the various symptoms as they arise. Fr more information, check out the following site: Tuberous Sclerosis Complex Alliance. As always, keep our family and especially Naomi in your prayers.
