It is both good news and bad news that we haven’t yet tested A’s blood for the pneumococcal titers. It is good because it means she hasn’t failed them and ruled out the Selective Antibody Diagnosis. It is bad because we are now 9 months into this hell and this test could really help get us on the road to getting an appropriate diagnosis. I definitely feel that A has PANDAS, but I also feel she has more than PANDAS. I feel it is a cyclical thing that will never end and the more I learn about Selective Antibody Deficiency the more that makes sense to me as the other piece of the puzzle.
I just sent the list of bloodwork that we need over to our nurse. Now we have to wait and see how long it will take for the results. Of course it is Friday at 3 pm so we won’t likely get the results until the middle of next week. This is stressful to me because if we are on a 30 day timeframe between episodes, we will be well past the 2 week mark and won’t even have an appt with the immunologist yet when we get the results of the bloodwork.
A is doing so well right now and I want to keep it that way. When she does well our whole family does well. We are working hard to learn to live positively with the situation we are in, but it is just a lot easier to be happy when happiness comes easily.