After last week’s neuro visit, John and I were scared to visit any other professionals aside from our ped. But, on the advice of the immunologist (whom we have yet to see) and our ped, we went to see a neuropsychologist. I still don’t know exactly what this type of professional does but I do know we have a friend in her. She was gracious and understanding with us. She had good suggestions, she understood where we were coming from and she has worked with PANDAS patients before.
We were sent to her in order to get our second set of scientific data that shows A is one way when healthy and another way when sick. She is going to perform 3 different tests on A both when she is healthy and then again when she relapses. These are standardized tests that are apparently well known and recognized in the medical community. I heard her refer to them as behavioral tests and cognitive tests. I believe they are going to record A’s capabilities in both behavior, memory, writing, rigidity, and more at both times and then compare them. This will show the impact that IVIG has on her. I wish I had known about this earlier because it would have been nice to have a scientific record of how drastically different A is now vs at the height of her illness.
The neuropsych needs 6 hours to do the healthy test and 6 hours to the do the sick test. She thinks A can handle 2 hours at a time. All of us agreed that there is no way we can wait 3 days to treat her once she gets sick. The illness comes on too quickly and too extreme to wait. So, we will do one day’s worth of testing and that will be the extent of it. Even withholding treatment for that long will be extremely hard on me.
We scheduled her first round of testing for 10 days from now. Right now we have that scheduled for a healthy test. However, today is day 32 so no one knows if we will have a healthy child or a sick child by then. It became obvious that the neuropsych was clearly on our side when I asked what would happen if A got sick outside of business hours. After hearing our history and knowing how extreme this year has been for us she told us she would squeeze us in and would come in on Sunday if need be. That meant a lot to John and I.
John and I have many things to feel sad about and to fear but we added one more to our list yesterday when we met with the neuropsych. She asked us if A has ever talked about the difference between being healthy and being sick. A has discussed it but only one time. She said she didn’t ever, ever, ever want the PANDAS to happen again. After we told this to the doctor she said that A is definitely cognizant of how much control she loses when she is sick. She also said that if this cycle continues and we allow her to relapse all the way without providing her with treatment – meaning IVIG – that it will cause her great emotional stress. A will become aware that a fallout is looming. That was a real eye opener for us.