September/October 2019

It has been an exciting month.

Will has had more days of irritability and high tone (dystonia) over the past couple of months. Our team at CHOP asked our local neurologist to admit Will and perform two tests to better gauge Will’s autoimmune inflammatory process. The tests confirmed what we felt was the case, high inflammatory markers in Will’s cerebral spinal fluid. The medication (Baricitinib) is being used to dampen these levels, but Will is still having significant inflammation despite us being “maxed out” on Baricitinib. The team at CHOP said we are at the max dose and cannot offer any more help with this, that’s a great feeling, let me tell you. They have recommended that we see the immunology and rheumatology team at CHOP. I know these teams work closely on neuroinflammatory conditions but we can’t get an opinion, thought, or recommendation until Will is seen in their clinic. The next appointment is December 19th.

My question: what do we do until December? Will is receiving great therapies at preschool. He has a rich environment and is exposed to so many wonderful experiences. When your brain is under attack, it cannot thrive in the way it could under typical circumstances.

Our options:
*Do nothing
*Use an anti inflammatory until December

We are going to do something. The risks of long term steroid use are always worth considering. Weighing risks, treating Will, or saying “no” to certain recommendations has been something we have grown accustomed to. Tomorrow he will start the prednisolone and remain on it until someone helps us further. It’s a small dose, less than he has had in the past. Maybe a daily whiff will give him a fighting chance at making connections while we wait for the newest group to join Will’s team.

Did I mention we are traveling to Philadelphia the week before Christmas for 3 days?

Tonight: a sleep study. Baseline sleep studies are important because Will has a neurological problem. This test can pick up a multitude of problems that are better sorted out before they become bigger problems.

WeWill 💗

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