Normally on a Tuesday I post a recipe for Recipe Tuesday but this is a little more important to me today. On Monday, my 6 year old daughter, Celine, was diagnosed with Perthes Disease. I’m a little mind-blown at the moment so maybe I should go back and set the scene for you.
On Tuesday, 10 December 2013, 2 days before Celine’s 6th birthday, she went on a class trip to a couple of parks around Hawkes Bay. At the second park while playing in the water area she bent down to pick up a stick and heard a click. She started limping pretty much straight away.
Because of her age and her often hypochondriac nature I delayed taking her to the doctor for a week. I wish I had taken her straight away but it’s often hard to tell with her if she is serious or pretending to get attention and as she would often exaggerate the limp when you paid her attention (which she is doing now as I type) if was even more difficult. I finally made the decision to take her because she doesn’t usually do the fake sickness stunts for more than a couple of days.
We were sent on an x-ray which we did a couple of days after her doctor’s appointment.
On Monday, 6 January 2014 (yesterday), at 8: 30 am I recieved the phone call which has officially changed my life. Could we please come in for an appointment ASAP. Our appointment was made for 9:15 am that very morning.
Celine’s x-ray results had come back and she was diagnosed with the very beginning of. My healthy, fit, active child has a disease that limits her to walking (and possibly needs crutches to aid in doing so) and swimming. No more running, jumping, climbing, swinging from her swing/slide set in case it causes more damage to her femur bone. I have no idea how to stop Celine from doing any of this right now. She doesn’t understand. Already I’ve had to remind her to not run several times. This child runs everywhere!
I spent the greater part of my Monday morning researching what I can of Perthes Disease. There is only a few websites in New Zealand that cover any information. The rest of it I have to get from international sites. There is no support group in New Zealand for parents with children diagnosed with this disease. At least, there used to be, in 2011, according to the list of support groups online, but it no longer exists. Celine was diagnosed 3 years too late for that.
At the moment, I am feeling so lost and unsure and I have no idea where to go with this. I’m sure there will be a few more blog posts about this in the future as I get my head around this disease. One thing I am grateful for: while it appears to be a lifelong disease it only really affects children while they are in the growing stages. It is not life threatening, just exercise restricting. That gives me hope.