Johns Hopkins

Tallula's journal entry for the day

Beckett's appointment at Johns Hopkins went well, but did not give us the answers we were hoping for. Dr. Sule was wonderful with Beckett, and spoke with us for an hour about his symptoms and auto-immune diseases. Systemic Juvenile Rhuemtoid Arthritis (JRA) presents with, among other things, a cluster of symptoms including rash, joint pain, high fever, and high sed rate. Beckett has 2 (rash & joint pain) of the 4 symptoms. Dr. Sule feels that either 1) he is on the cusp of a crisis, meaning the other symptoms (fever and sed rate) will come, or 2) he has a very unusual presentation of JRA that she has never seen, or 3) there may be another reason for the rash and pain.

On February 16th, Beckett will go to a Pediatric Opthamologist for a 2 hour appointment to examine his eyes for inflammation. On February 23rd, he will return to Johns Hopkins to have his vocal chords examined for infammation. This will give Dr. Sule a better idea if it is scenario 2) an unusual presentaion of JRA, where more classic signs of inflammation of JRA are present, even if the high sed rate and fever is not.

The other test Dr. Sule ordered is for Cystic Fibrosis. Because Beckett has had a significant number of lung issues (RSV, bronchiolitis, asthma, wheezing episodes with no known cause), Dr. Sule wants to rule out this condition.

We were also given a more powerful pain medicine to help keep the joint pain under control while we wait for these tests to be concluded. Thank you for all of your prayers and support. Please continue to pray for Beckett and his doctors, as they continue to asses his condition and his needs.