So, today we had two seperate appointments at Akron Children's Hospital. We saw Cardiology and NeuroDevelopment. The appointment with the cardiologist went extremely well. Dr Jacbonstein was wonderful with Alvin. He had an EKG, and an echocardiogram done while we were in-office. We are happy to say that EVERYTHING IS FINE with Alvin's heart! After the cardiology appointment we went to lunch, then to Alvin's neurology appointment.
First off, let me just say that Dr Victorio is AWESOME! She listened to everything we had to say. She was very informative and patient with everything we asked or had concerns about. After measuring all of Alvin's various cafe-au-lait spots. She talked with us about NF1, and about the high possibility that Alvin has autism. (This isnt a shocking theory. Autism has been mentioned before.)
She wants to perform more tests before she is comfortable with confirming a diagnosis of NF1. So, we have an MRI scheduled for next week. In the MRI, they will be looking for gliomas and/or for genetic deformaties of the brain. Alvin will be sedated for the MRI, which is scheduled to take ~2 hours.
For his 'staring spells' she has ordered an EEG. That has been scheduled for next week as well. Going to be a rocking good time attempting to keep him awake during the hour+ drive to the hospital. Dr Victoria also has referred us to an audiologist, a speech pathologist and an optometrist. The optometrist is supposed to be looking for lisch nodules in Alvin's eyes. Again, another marker for NF1.
Also next week, we have an appointment with the nephrologist(kidney doctor). We are seeing him due to Alvin's low amino acid count in his urine. So, I will be quite busy over this next week. However, we should have an honest, definative diagnosis shortly!