Physical Therapy and Baricitinib
We headed to CHOP this morning to visit a physical therapist and try out a beanbag chair. She had shown us some things to try with Will, so we asked her to demonstrate for us.
While there we met with one of the techs who casts kids for custom orthotics. We are waiting to hear if insurance will cooperate with them and if so, we will have some important pieces of equipment made for William. He will have some splints for nighttime, and a supportive vest (dragonfly TLSO) to wear during therapies and feeding. We have been hoping to schedule this visit for a while and it seems like it might come together for us. She told us to keep Will swimming and add equine therapy whenever we can.
Tomorrow will be one of our more difficult days. Our day starts at 6:50am. An IV will be placed and Will’s blood will be drawn over the course of the day to see how he is metabolizing the drug. The samples are sent to an outside lab and then once analyzed, we will adjust the medication accordingly.
We haven’t noticed any changes in Will since starting Baricitinib. The goal of the medication is to slow the progression of the illness and allow his brain to further develop. The interferon that Will has in his brain creates a hostile environment and makes him feel lousy. Click the underlined word above to read about JAK1/2 inhibition with baricitinib in the treatment of autoinflammatory interferonopathies. Our best description of what Will has is an ‘interferonopathy.’
Interferon: click here