Megan, Sloane’s mom, writes:
Hello KAND Families!
Sloane received her second ASO dose on June 6th. We were still in New York City. On the 5th we had her predose blood draws and her research EEG (the PT had a conflict so we had to move that to the 10th but typically there would also be a PT eval predose). Post dose on the 6th we were monitored in a recovery room and then moved to our overnight room. Sloane did great and she was discharged the morning of the 7th after an EKG.
Unfortunately on the 8th she started vomiting and couldn’t keep anything down so our treating physician suggested we head to the ER for monitoring and a head CT to check for hydrocephalus. Luckily the head CT looked fine but we were admitted for monitoring for 24 hours and given Zofran and an antacid. We were discharged on the 9th and she’s been doing great!
We checked in with her doctor on June 10th and had her PT eval and research EEG and we were given the all clear to head home (Arizona)! We had some family come for our last week in New York and we all flew home together on the 13th!
And I’m happy to report we are seeing some small changes. Her therapists have said they are seeing improved motor control, quicker protective reactions, and increased ability to shift smoothly outside of her center of gravity. Her overall coordination is better, she had a mild tremor in her hands that is mostly gone, and no clonus in either ankle (which she had slightly in one pre treatment).
Excited to see what a larger dose will do!
Sloane and I head back to New York City on July 30th and she’ll get her third dose on August 1st!
With Hope,
Megan, Sloane, and Family