We are back at the hospital for IVIG. Last night after talking this through a million times in my head, with John and with the other PANDAS parents, John and I realized that perhaps PEX alone wasn’t enough and A should have had IVIG with it. I still don’t know why IVIG wasn’t part of the PEX, but it wasn’t for us or any of the other children.
As I was talking this out with John, I realized that perhaps we had never cured the real virus/bacteria that made A sick in the first place. Then I remembered another parent saying they had dramatic effects with IV antibiotics with their PANDAS child.
So we are now at the hospital to do 2 days of IVIG and 3 days of IV antibiotics. When we told A that we had to do this she just crumpled. She didn’t outright cry but instead fell in on herself and pretty much shut down. To me, that seems like such a bad sign. It seems like she shut her emotions off. Should you be able to do that at 4? I wouldn’t think so.
We got a child version of valium for her and it had an effect on her to some degree. This was good because so many things we have tried have had the adverse effect on her. But when they unwrapped the needle she became absolutely hysterical. It seemed it was going to be impossible to get her to be still enough to insert the needle. She was beyond devastated that this was happening. She kept screaming “NO, NO, NO!!!”. All the other times have involved crying but no words. This was heart wrenching. She is very mature though. We talked to her about why we had to do it and she calmed just slightly. Enough for the very skilled nurses to get the needle in. But she jerked and the poke was unsuccessful. We waited a while and got an additional nurse. John and I stepped back until they got the needle out. A screamed again when she saw it but the nurses are very good. However, she was so tense, they were only able to insert the IV. Not draw any of the 7 tubes of blood they needed.
A is now asleep and the lab came back to do another poke (number 3!!!) to attempt to get blood this time. A did wake up during the poke. It took her a while to realize what was happening but she eventually looked down and saw what was happening. She was terrified and very mad. Luckily she was very groggy though and did go back to sleep. The numbing cream played a part in that I think.
The IVIG just started. This is the part that is extremely slow. We have at least another 6-8 hours for the treatment to finish. But she has already had her first dose of IV antibiotics. I am cautiously hopeful that we will see some benefit from this.