Sunday, January 6, 2013

What A Difference Six Months Makes

Yesterday we were at a mall playground that we were also at almost six months ago.  As I was watching Lucy run and play, I remembered the anxiety I felt watching her at the same spot last summer.  It was during the time that she developed her strange little peg legged limp, before we had the diagnosis of Juvenile Idiopathic Arthritis. 
video
July 2012
 
 
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January 2013
 
I have said it so many times regarding Ross' type 1 diabetes - I am so thankful for modern medicine!  In August when we finally got a diagnosis of JIA, she began a drug treatment of naproxen immediately.  After limping every day for the previous two-plus months, her limp was gone within three days of taking the medicine.  It was such a blessing and relief to see her walking normally again!  She started off taking 4 ml of naproxen twice daily, but that was changed to 5 ml when a little swelling in her knee was discovered at a check-up.  She was a champ taking this for about two months, but then she really started to put up a fight about taking it.  After speaking to our rheumatologist in October, she changed her prescription to methotrexate/meloxicam.  She now takes just 2 ml once daily.  Lucy is awesome about taking this.  I don't think she has resisted taking this since we switched prescriptions.  I guess this one tastes a lot better!
 
She has had one eye exam since diagnosis, and everything checked out great.  She has a risk of developing an eye disease called uveitis (Viewer discretion - icky picture!).  I was REALLY dreading her eye exam since I would be going alone and was envisioning her being strapped down and a speculum being needed for a thorough exam.  I had to laugh because she was still as a statue for the fifteen minutes the doctor was examining her.  Her eyes were dilated, and anyone that has had an eye exam knows the opthomologist gets right in your face to get a good look.  I could not believe how still she was!  When the exam was finished the doctor commented that she was probably in 2% of patients that sat so still.  I am not holding my breath that we will have the same results next month when we return for a check-up.  Until she is an adult she will have a detailed eye exam at least twice a year.
 
In addition to having another eye exam next month, she will have another check-up with her rheumatologist, whom she will see every three/four months.  And these appointments are so exhausting and draining.  The actual check-up isn't so bad, nor does it usually take longer than fifteen minutes to be examined.  The rough part is that our doctor doesn't see patients at Cardinal Glennon until the afternoon (NAP TIME!).  She also orders labs to be drawn to make sure her little body is tolerating the drugs.  One of my main reasons to potty-train Lucy before the age of two is because getting a urine sample from her has been horrendous.  At our last appointment the whole clinic closed down (like lights off and staff went home), and we were the last people by far to still be there.  We waited in a ghost town with the technician whom was obviously ready to get home.  It was nearly dinner time before we had success.  That was a long and stressful day!  I digress.  At the appointment next month I am anticipating being told to try taking her off of the meloxicam.  From what I understand we will take a "wait and see" approach with the goal of being drug free and symptom free.  It is our prayer that the swelling and limping will not return, and she will be considered to be in remission.
 
Other than giving her a dose of medicine each morning, I almost forget that she has this disease.  She can run and play normally without limping, and she doesn't ever seem to be uncomfortable or in pain due to the JIA.  While I don't want her to experience any of this, we count our blessings because our trials could be a lot harder.  When I think about having two kids with auto-immune diseases, I think about the saying that if you were to put every one's problems into a big pile and had to choose some, you would always choose your own.  Prayers will be fervently offered that once she goes off the medicine she will be considered to be in remission, and anyone that wants to join us in offering those prayers is more than welcome!