There was an opening in Dr. Poplawski's office for yesterday at 11:00. Dr. Poplawski was great - he spent over an hour and a half with us, and talked about everything he knew as well as admitting that there are many uncertainties in Shelby's case. We left with good and bad news. First the bad:
He diagnosed Shelby with Cortical Blindness. This is an extremely scary term, but it basically means that while Shelby's eyes are fine, and react normally to light, she has problems interpreting the images in her brain. There are ranges to this condition, with the most severe being complete blindness. Most children with Cortical Blindness will improve as the brain readjusts the processing from the damaged area to other good areas. Dr. Poplawski expected this to happen in Shelby's case because we have not even seen the full benefits of the shunt yet. Also, we forgot to ask about this, but it seems like since one side of her brain was much less impacted by the hydrocephalus, hopefully that side will still function properly. This is still a wait and see kind of thing but the doctor was positive despite the scary diagnosis. He suggested that we do Occupational Therapy in addition to Physical Therapy to help her function better with the vision that she does have. More than likely she will always have vision problems, but we are just praying they are minor enough that she will be able to have a pretty normal life. Here is a fact sheet about cortical blindness:
Now some good news:
Dr. Poplawski said he thinks Shelby is NOT having siezures because the nystagmus did not change after taking Keppra. He took her off the medicine immediately. He said that the abnormal brain waves and discharges were very normal based on her hydrocephalus. He also felt positive about that getting better as the shunt continues to do its job, and her brain adjusts.
So, again Dr. Poplawski was awesome, and he will now pretty much be our go-to guy with any brain questions we have. Its nice to have a doctor in Asheville for that. He was very positive about the "before and after" images of her brain, and said that he thinks the brain will continue to expand. He was also impressed with how well she holds her head up, and lifts it while laying on her stomach, because she is slightly hypotonic (meaning she has decreased musle tone)--he thinks this will improve with time as well. We will see Dr. Poplawski again after our next visit to Duke (in December) where we'll get another CT scan.
Our next step is to get going with Physical Therapy and Occupational Therapy. Of coure we will update as we learn more.