Tuesday, August 27, 2013

A long awaited improvement!

She is such a good patient.
Dear Friends and family,

Last week we had our 2 month follow up with Lucianna's Uveitis specialist.  At our last appointment we were instructed to increase her chemo drug, Methotrexate, to .7 mls, discontinue drops and see how her eyes respond.  In addition to the drug increase, we added an herb supplement that is talked about in the Uveitis community called, Curcumin (aka Tumeric).  It is the main component in the Indian spice, Curry and believed to have anti-inflammatory, anti-oxidant and even anti-cancer properties.  We have found a study from NIH back from 1999 that patients with Uveitis had a significant response to it so with the approval of our doctor we are using it for Lucianna.  Curcumin along, (meaning sprinkled in your food by buying it from the store) can have absorption issues - it isn't known how much is absorbed into the body, etc.  A company called Meriva claims to have found a way to manufacture it so that the body absorbs more effectively.  It is available on Amazon for about $30.  Since our last appt, we have been giving 1/3 of a capsule daily to Lucianna.  (We just mix it into applesauce.)  

I don't know if it's the Curcumin, the increase in the Methotrexate or both but Lucianna's left eye went from between mild/moderate inflammation to TRACE!  (The right eye has been quiet for a few months.)  "Trace", (aka, "Faint"), is the next classification right below, "None".  Were we hoping for none, but trace works too.  Any improvement over this long battle is a success!  As a reminder, we have to get to "none".  Trace is not "good enough", but we're incredibly happy for the improvement! So we're sticking to the Meriva Curcumin and staying positive that our appt in November shows her eyes totally quiet!  We were also able to discontinue the twice daily Zantac and Naproxen.  I am so happy to not be pumping her with these drugs anymore.  

I can't believe the summer is now over. Where does the time go?  The girls started school last Thursday and they are both very excited!   Bella is in the 1st grade and Lucianna is in Jr. Kindergarten (preschool). Lately, Lucianna has been intermittently climbing in our bed.  I can't say that it bothers me, because I think it's cute, but it bothers Daddy.  Daddy is the recipient of her size 10 feet in his back as she lays horizontal in our bed. I get to see her sweet face on my pillow - what's better than that?!?!  I look at her as she sleeps and just hope that one day I can stop blogging about her health because she's healthy.  My only wish is that she survives these JRA years with her sight and joints in tact.  I am no fool to believe that once her eyes are completely quiet that she will never get the Uveitis back, but I will revel in the joy of each achievement and live for each day that things are "quiet".  

 "Pick the day. Enjoy it - to the hilt. The day as it comes. People as they come... The past, I think, has helped me appreciate the present - and I don't want to spoil any of it by fretting about the future."     -Audrey Hepburn

One of my favorite pictures of her - all babies look so cute
with a shirt pulled over their head!

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