Latest update

We met with Jameson's rheumatologist, Dr. Yalcindag, in the fall.  Overall, the appointment went well.  It's always a blessing to meet with a doctor that doesn't have one foot out of the door as you're discussing health altering decisions.  There has always been this rather large, shady area of grey around his "diagnosis" of JRA.  Back in December of 2009, his blood tests came back with indicators that made him susceptible to JRA.  This portion of his health remained uneventful up until the summer of 2010 when they found some fluid in his joints, but that also never went anywhere and he continued to remain symptom free in regards to actual arthritis.  September officially marked the start of his clinical diagnosis (for his joints)---and a few changes.  First, it is no longer called juvenile rhuematoid arthritis, instead it is now JIA, switching out rheumatoid for idiopathic.  I asked why this came about and Dr. Yalcindag basically said idiopathic means "cause unknown".  Second, Jameson has psoriatic arthritis (right now), a sub-category of JIA, in his right ring finger.  It is treated the same way as other types of arthritis, it just has a different appearance.  His whole finger looks almost sprained, as opposed to an isolated, swollen knuckle.  

Most of you also know that after not being able to tolerate methotrexate for the treatment of his uveitis, we started an aggressive natural approach that helped launch his uveitis into remission for 5-6 months.  Unfortunately, it was not enough to sustain, as this is a very stubborn disease.  If anything, it gave us a first hand glimpse of how this journey is going to be an up and down experience of stability and "quiet" (the term that his eye doctors love to use when he is free of inflammation), verses a calendar packed with doctor visits due to inflammation.  After his uveitis flared again this past August, a more aggressive approach (medically) had to be taken or else we'd run the risk of permanent vision loss.  He now has two uveitis specialists actively involved in his care.  Dr. Foster (Boston), will be doing his eye surgery in a few months.  Dr. Janigian (Providence) monitors Jameson on a more typical level and both are involved in controlling and monitoring his immuno-suppressive therapy.

His current regimen of immuno-suppressive drugs (the heavy-hitter drugs, as they like to call them), are not working.  After 2+ months of continually increasing his Cellcept (the low-dose chemo that he takes twice a day) to try and get him into remission, Dr. Foster found significant inflammation at Jameson's appointment last week.  His doctors monitor his blood every six weeks and as it is right now, his liver has been "crying out" a bit as we've watched his enzymes rise in response to these increases in meds.  Upping his dose isn't an option anymore, so we're moving on to a new drug to be added to the mix.  This one is called Remicade and it will be, if all goes well, a four hour stay at Hasbro Children's Hospital--administered through an IV.  I won't bother getting into the scary medical side effects, but this is one that has been further down on the list as the "go to if we have to" drug.  Well, we have to.  His cataract surgery should've been done by December, we're watching his vision go down at his appointments and he still has active inflammation.  Dr. says infusions have to start ASAP and we're ready!  As scary as it is, we're eager to find the right recipe to get our little man into the remission that he so badly needs.  He'll be going, on average, once a month (the first month is the "loading month"--infusions every two weeks) and we should know if it's helping/working by month three.  Prayers would be SO appreciated...#1, he will have no major side effects from the infusion and that his body can tolerate the strength of this new drug.  #2, that it WORKS!  :)