As our baby boy approaches 3, we just wanted to take a moment and thank all of you who have supported us through the last few difficult months. By all accounts, Beckett is strong and healthy, and his body is continuing to work hard to overcome whatever continues to plague it. His rash and joint pain continue, although only once or twice a week (down considerable from it's peak in November and December, when the pain and rash where near constant).
We spoke to both our Pediatrician and the Pediatric Rheumatolgist at Johns Hopkins this week. The pediatrician has separated the 2 symptoms and is exploring separate diagnoses for the joint pain and rash (such as a virus causing the rash and extreme growing pains causing the pain). The specialist believes that Beckett has a very rare variant of JRA, and that is what is causing both the joint pain and rash. Another specialist (the dermatologist) also agrees that it is JRA, because of the appearance of rash. The Hopkins specialist says Beckett is very lucky not to have to other symptoms (inflammation and high fevers), and hopefully will not develop them, but if the situation changes there are medicines available to him.
We have chosen not to treat the rash at this time, as it is not causing him any distress and the side effects are far worse than small circles on his feet once or twice a week. All doctors concur. We have scheduled second opinions with other Pediatric Rheumatolgists and Dermatologist, and Beckett still has one bone scan to complete in the coming months. But unless anything changes in his health, it will be status quo for now.
Otherwise, we are all very excited for his 3rd birthday, and bowling party this week! See you all soon!
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