My sweet child. I feel so sad for her. This PANDAS episode is different than the last one in that it did not come on as severe at the beginning but instead was more gradual. However, we are now in the middle of a full blown episode. Today, A woke up at 4:30 and hasn’t yet been able to go back to sleep. I’m hopeful that we will be able to get her to bed ok. She has spent the day without any clothes on and I believe this is because her body is very heightened to touch and clothes are very uncomfortable for her. Each time I suggest we get dressed she gets upset, so we haven’t left the house still and it is 3:30 in the afternoon. She has severe chorea which is showing up in the form of restless leg syndrome. That made it a bit difficult for me when I tried to lay down and take a nap while she watched tv. And then of course the big factors are irritability and OCD.
She woke up unable to deal with anything at 4:30 am. But her rigidity didn’t dissipate as the day went on. And then the icing on the cake was at lunch when she looked up at the ceiling and told me we had a problem because there were cracks all over the ceiling. She said this very matter of factly, but I take the obvious OCD signs as the final straw that an episode is in full swing.
I spoke with Dr. L’s office today to attempt to book the PEX. It seems there is no guarantee on anything which is a bit stressful to me. We will be for sure booked to meet the team of ICU docs, but the admittance can’t be booked until we show up and there is a bed available for us. That is an expensive what if. I’m hopeful the steroids will kick in here soon.