November 2, 2006 mcfadyena

Appointment with Dr. Escolar

Trey and I. November 2005.

There’s not a lot to update today. This morning we saw Dr. Escolar. We were there for 4 hours. Her team did another standardized test, one which she likes best and Trey has not had done yet (although I think now we’ve done them all!!), Trey’s ears were checked, as well as his eyes, and his weight, head circumference and height were measured for the third time down here. The interesting part of speaking with Dr. Escolar was hearing about her Natural History study. She has followed 30 kids over the course of approximately 4 years. She has noticed that at around age 2 1/2, kids with Hunter Syndrome seem to follow one of two developmental curves. Those children who have hearing impairment, but no CNS (Central Nervous System) involvement have followed along one curve, and those children who have hearing loss with CNS involvement have followed along the other. She said that all kids so far have fit into one of those curves and they can be placed on that curve between the age of 2 1/2 & 3. She is going to review Trey’s tests from today, along with the results of Trey’s tests up-to-date, and then let us know at our meeting with Dr. Szabolcs tomorrow, where Trey fits on the curve. Since Trey is supposed to be totally sleep deprived for tomorrow morning’s test (EEG), we are probably going to go check out a Hurricanes game tonight, and stay up as late as we can.


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