Here is how I feel about today
We will not be doing PEX on A this week. Since I said this was to be a positive blog, I will say all the positive things first. The doctor was fabulous. She clearly gets everything. It was wonderful to see a PANDAS pro and not have to explain anything but instead to learn something from her. She was thorough and kind and truly understands the hell our family has been through.
It turns out that there was something on A’s MRI that was never mentioned to us. I don’t know who should have seen it and missed it because it was there the whole time. But A has a mastoid infection. I don’t know what this is other than Dr. L referred to it as a sinus infection in her mastoid. Dr. L thinks this might be the reason that A has never been able to stay well after receiving any type of treatment. Initially after hearing everything we have done, Dr. L wanted to do PEX because we seem to have tried everything else. But then it seems Dr. L thought more about the mastoid situation. I believe she told me that even if we did PEX but didn’t treat the mastoid, the PEX would be ineffective. As she was telling me this I was starting to feel claustrophobic. I really didn’t think I could take hearing this decision. I felt like I had been punched in the stomach. Dr. L wants us to do 6 weeks of Augmentin and either 4 or 6 weeks of steroids. We then need to do another MRI to see if we cleared the infection. If we cleared it and A relapses again then she will go immediately to PEX. If I am a sane and rational person who is distanced from this situation, I can clearly see Dr. L’s point. However, I am not sane and am in no way distanced from this situation and this is very hard for me to take.
Right now I have no energy left for this day so I am going to go to sleep. A was a trooper today but is now asleep. She very much enjoyed drinking her water from a wine glass and now we will retire.