We hit the ground running after being in Philadelphia for ten days, but wanted to write a quick update about Will. We have had a few questions about the drug, so I thought I’d include some information in this update.
Will takes Baricitinb twice a day. It’s a pill that partially dissolves in water; it doesn’t dissolve but breaks down into little particulates. We mix the particulates with other medicines Will takes and orally administer by syringe; he isn’t bothered by the taste or texture when we administer the medication in this way.
Within a couple of days, we noticed that Will had little ‘bursts’ of energy shortly after his afternoon dose; he would become more wiggly and vocal. So cool! He has been more engaging, less irritable, and his appetite is much better. To our surprise, he took some sips from my straw the other day, something he hasn’t been able to do until now. We have been offering him water in a sippy cup throughout the day for the past year but are routinely offering him a cup of milk or water because he enjoys the challenge of drinking from a cup so much. Small steps in the right direction.
We will be going back to CHOP 8/21-8/23 for lab work and a clinic visit. More updates to come!