Great News: Lucianna is improving!!!

 

Dear friends and family,

{For those not up-to-date on the blogposts:  We sent the Rheumatologist an email and explained that Lucianna did not seem to be getting better but possibly worse.  He requested to see us this week.  This is the result of that appointment.}

WE HAVE GREAT NEWS!!!  We are elated to share that Lucianna's doctors appointment went really, really well today!  

DESPITE HER LIMITED MOBILITY, 

SHE'S GETTING BETTER!!! 

Daddy & Lucianna coloring at the appt today!

Daddy and Lucianna playing with one of the toys.

Such a great patient!

We were expecting to hear that she definitely has JRA and that she needs to be moved to a nasty drug called, Methotrexate, since she has been really struggling to get around but here's what happened:

Dr. S said that she actually has NO inflammation on her joints and no fluid on them either.  Then he felt her other joints, feet, fingers, hips, shoulders, nothing.  He checked her lympnoids, heart and back...everything looks good!  He asked her to walk with him while she held onto his fingers...much to our surprise, she did pretty good.

I must have had a "deer in the head-lights" look on my face because I was in such disbelief!  We can't understand why her behavior (non-walking, crying in the night, bent knees, limping and difficulty sitting on the floor, etc.) does not match her physical exam of no inflammation or fluid in her joints.  What the hay????

Dr. S said that joint pain is very painful and somewhat traumatic for such a young child.  She could be experiencing some muscle atrophy due to her inactivity for so long while she was having this flare up.  Basically her muscles are weak from non-use.  She also could be experiencing "fear".  She could conceivably be "fearful" to put weight on her legs or walk because she knows how painful it has been the past 30+ days.  He says it could take a couple of weeks or so for her to regain her strength in her legs.  He asked if we had the ability to go to a pool and get her exercise that way - we were happy to report that we did have a pool membership.  :)

So we said, "So you don't think it's JRA?"  He said, "I just don't know.  She looks great.  She has made a huge improvement in 30 days.  I see that improvement and you don't because you see her everyday." I said, "So the Naproxen apparently seems to be working?"  He said, "Yes, appears so, and this is about the time we see improvement with that drug, between the 4-6 week mark."  As far as he is concerned, this very well could be Transient Synovitis.  What is transient synovitis? 

Basically, TS is a condition that occurs post viral (she was suspected to have had Mono one week before the arthritis symptoms presented itself).  So in TS, the virus settles in the joint, most times it's the hip but it can be the knees.  Typically it is resolved in 4-5 weeks, we are at week 7.    If we move forward and it definitely appears to be TS, the only lasting affects are that she may find she has arthritic problems in the future when she has a cold or virus, but there are no long term affects or damage, and the arthritis problems don't persist except when she's not feeling well.  She may even get sick and have no arthritic problems whatsoever.

So do we think it's Transient Synovitis?  Possibly, not sure, but things look very, very promising for that. What we DO know at this point is that she is getting better and as long as she continues to show improvement, we don't need to go back for two or three months.  When we do go back, if she's completely walking fine, the doctor will slowly wean her off the Naproxen and hopefully by fall she will be back to her 3 year old self!

This evening, she is getting around, but still whinny about it and definitely struggling, jelly bean bribes have really worked wonders to get her to walk. :-)  The doctor has told us to try to encourage her walking but if she won't do it, go ahead and carry her.  He also wants us to use language around her that she picks up on like, "The doctor says you are all better!" and other language that makes her think she is not different, but just like other kids.

We will keep you all posted but please continue to send the good vibes, prayers and all the positive energy this way! 

I hope this is the end to this bad, bad dream.  I am so excited to get my old life back...one that's full of trips to the park, moonbounces, car rides to VA and NY and DANCING!!

Much love,

Lucianna's-oh-so-happy Mommy!