In Spring of 2018, my 6 year old daughter was complaining of neck pain.  It was mistaken as pain from her twice a week swimming lessons.  One morning in August that same year she asked me to look at her knee because it was really hurting.  I was shocked to see how swollen it was and that she never had complained about it before.  Later on I came to learn that many children that suffer from JIA think their pain is “normal” as they don’t know any different.  That day I got her to see a GP who sent her in for x-rays and blood tests and advised us to get her a set of crutches and so our journey of JIA began.

September came and she went to school on crutches every day as we waited for her knee injection in October with a general anesthetic.  Before her knee injection, we nervously attended our first Cassie & Friends Family Day.  As I remember, she was one of the very few or only child that I saw on crutches.  It was a very emotional day where I fought back tears and had to remind myself to breathe as it was all so raw.  My husband and I attended the different talks that were being given by the Pediatric Rheumatologists.  I still have the books and my notes from that day.  I sat in a talk where the doctor touched on Uveitis and how children that are ANA+ (positive) with JIA are more likely to have Uveitis.  The other thing I remember hearing is that female JIA patients have a 76% higher chance of having Uveitis.  In that next month I found out she was ANA negative.  What a relief!  

After that Family Day she had her knee injection and I then had her eyes screened by our now Ophthalmologist as the Rheumatologists at Vancouver Children’s Hospital suggested.  I was confident she did not have it but walked out of her appointment shocked and gutted.  “She is ANA-, how can this be?” was all I could ask. Uveitis has a grading system that relates to “bad” cells in a field.  Her grade was 3+ which is 26-50 “bad” cells that the Ophthalmologist could count. Scarlett was immediately put on Prednisolone eye drops & Lotemax eye gel (steroidal anti-inflammatory drugs) & Cylcogyl drops (which widens the pupil while relaxing the eye muscle).

This was a very aggressive treatment but well warranted.  She was in grade 2 at the time and one of her brothers was at the same school in grade 7.  She went to school but required these drops every couple of hours.  She would meet her brother at a pre-set time in front of the office and he would put the drops into her eyes for her.  Scarlett’s disease affects our family in many somber ways but then there are times where our family has had to come together that makes me feel proud and stronger.  These eye drops sting, hurt and make her eyes light sensitive.  Many sunny days she sat in class during lunch and recess while her classmates went out to play.  Sunglasses, hats, glasses were always within her arms reach if needed. There were so many eye appointments before school: checking pressures with the stinging Cyclogyl drops, checking for flares.  Vacations spent with her big floppy hat permanently on her head to protect her eyes. 

During all of this Scarlett was on oral then injectable methotrexate.  Methotrexate was not controlling her eye disease.  And so in June 2019 which was 9 months of methotrexate later, she had her first set of Remicade transfusions.  Finally, this drug worked.  Her eyes were clear!  Scarlett has as many  ophthalmology appointments as rheumatology ones but I always find myself holding my breath waiting to hear the word CLEAR when her doctor is looking into her eye. On my 2nd Cassie & Friends Family day, I sat in on a Uveitis presentation and found out that if an ANA – does have Uveitis then it may be worse and more complicated.  This is the case with my daughter.

Scarlett has had 8 transfusions of Remicade plus 4 transfusions on the Biosimilar Infliximab.  Her eyes are still clear and has kept her 20/20 vision with no damage.  She will always be at risk of Uveitis even in adulthood and will have to annually check her eyes.  She is my toughest child and has been through a lot.  As a mother, I wish I could take all her pain away but this is her story.

Our family is so thankful to all the Rheumatologists, Ophthalmologists, nurses and GP’s that have helped Scarlett.  And we are grateful for Cassie & Friends who gave us an opportunity to get educated on JIA/Uveitis and a sense of community so that we know we are not alone.