Today was a big day for us! We had a neurology appointment at Gillette at 8:00 am, which meant that we were out the door by 6:00. I just love those mornings where you get to drive in the dark and pretty much have the highway to yourself until you hit the metro morning rush hour.
At any rate we were there to meet with two of the neurologists who have been trying to figure out what is going on with Lauren and FINALLY after eighteen months of testing, adjusting medications, and then some more evaluating we just might have figured it out. The news is not all that great, but I think this is really what is going on and we may be able to do something about it. They know that the temporal horns, which are some thingy that connects to the lateral ventricles of the brain and are a part of the system which regulates pressure have not closed. These temporal horns are supposed to be closed in girls by the time they turn 16. Lauren was 16 when we first started noticing cognitive declines in all areas.
So what do we do now? First thing up is a 72 hour EEG (what fun) just to make sure her seizure disorder is totally controlled. After that they will do a lumbar puncher and reduce her pressure to the normal range. This is a short term fix. By doing this we will be able to see if there are any improvements in her abilities. If there are then we go for the longer term solution which is to place a shunt to regulate her pressure. She is almost certainly going to have a shunt even if there are no improvements because her pressure needs to be regulated and monitored to be sure it does not get to high.
Everyone is feeling that the reason her temporal horns did not close has do with the traumatic injury to her head as an infant, therefore if the pressure can be regulated there will be improvements. The other possibility is that these things did not close because she may have some form of dementia, which has been the main thing they have been considering for quite some time now so that news is not shocking. Although dementia is diagnosed only when everything else has been ruled out, researchers are finding that temporal horns which do not function correctly may be a marker for some types of dementia.
One of the neurologist`s keeps telling Lauren that we are looking at all of the brown and white horses, then we found some black ones, and striped ones, and some spotted ones too, but we had to keep looking at her brain until we found the purple one. She is not understanding this analogy completely, but has been cooperating with all of this just to find that purple horse.