Saturday, September 15, 2012

And Remicade works no more... no more...

And so after this summer of ups and downs with Charlotte's eyes... she has developed HACA's (Human antichimeric antibody) towards the Remicade.  Her body got smart, realized it was a rat protein & has rejected it.  Its working, no more, no more.  

What does that look like?  Her eye blew up.  "So many cells we cant count."  Wow.  She hasnt had that kind of eye appt since the initial diagnosis (age 2).

So after 4 years, we say so long to remicade.  You worked when you worked, but now you work no longer.  

Now there are discussions with the pediatric rheumatologist & the uveitis specialist as to what's next.  There are other drugs related to Remicade (called TNF Blockers) and some you may have heard of (PGA Pro Phil Mickelson uses Enbrel): such as Enbrel, Humira & Orencia.

The  next drug she jumps to, we want it to have a great track record of conquering uveitis (arthritis in the eyes).  Problem is... there arent a lot of studies out there.  

The good news is, they are all SHOTS.  Administered at home.  No more mini hospital in our house, nurse half days, being grumpy & missing school....
Scary side is, will her body accept this new route, how long till it kicks in and now its up to US! (was a tad reassuring to have a nurse at the house to talk things over with).  

We have a growing list of questions for both doctors & are contemplating going to Boston to discuss.  

Charlotte has been on HOURLY eye drops since the 2nd day of school (GET TO KNOW US!) and the staff has been nothing short of angelic!!  Her teacher, the nurse, the healthroom assistant, the secretaries, the principal... we couldn't ask for a more cohesive village helping our Tot when she's away from us.  So much love for our elementary school educators....

 And besides all this CRAZY'VILLE the 1st three weeks of school, Charlotte LOVES, loves, LOVES 1st grade!  She loves her teacher, she loves her new friends she's making, she loves seeing her friends from kinder & she LOVES reading!  So we are thankful for the Remicade when it worked.  And now.. on to a new time...

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