I'd Never Heard of Perthes

This post was written retrospectively... April 6, 2025 Thursday we got the news that changed everything.  After we left the hospital, we picked up Jude and then went to the boy's school for our scheduled Parent Teacher Interviews.  It felt like we were walking through a fog.. I still couldn't process everything that had just happened.  We told the boy's teachers about everything, briefly, and then went home.    James is supposed to be taking it easy, with restrictions of no running, jumping, sports, gym, recess play, etc.  On Friday, we decided he would go to school for the morning, see his classmates and say goodbye, but that I would pick him up before lunch, so he didn't have to sit out from playing at lunch and gym, which he had in the afternoon.   When I got to the school to pick him up, he asked if he could stay an extra 10 minutes, as his class were making him cards.  I agreed, and asked to speak to the Principal.   I wan...

This post was written retrospectively... April 3, 2025 Today was Parent Teacher Interviews at school.  The morning was a PD session for teachers.  As our appointment at the IWK was at 9:00am, I just took the morning off work.  I scheduled my Parent Teachers to start at 1:00pm, leaving me plenty of time to get from the hospital to work.  We dropped Jude off at my parent's house, then Jon, James and I headed downtown.  Our expectations were a quick appointment, assuming we would continue with physio, ask about physical restrictions, discuss crutches, and then go home with a follow up in a few months.  How very wrong we were... When we got into the office, we sat waiting, and met with Dr. Logan's resident.  She spoke with us in detail about Perthes, and we were able to ask questions.  I remember asking if this would affect James' growth, which it should not.  She wrote James a prescription for Celebrex, which is an anti-inflammatory to help with...

This post was written retrospectively... March 28, 2025 In the time between the last post and this one, James was supposed to not participate in any sports, any running, jumping etc.  I had written his gym teacher a note, which James secretly threw in the garbage.  He's still be playing soccer at recess, but he's been playing goalie.  It is hard to navigate this, as he is 9, and has his own thoughts, ideas, and wants.  It is near impossible to ask a 9 year old to not play at recess.  We also received our appointment time with our Ortho specialist - Dr. Logan, and that will be next week April 3.   Today I took the day off work and James the day off school.  We spent the morning quietly at home, and then we went downtown to the IWK.  Having James already on Kyleigh's caseload ended up benefiting us. Prior to our appointment, she met with Dr. Logan and together they looked at James' x-ray, and discussed his case.  She gave us a few exercise...

This post was written retrospectively... March 19 When James was a baby, he was late to walk.  He was out-toed and flat footed, and hyper flexible.  We saw an amazing physiotherapist at the IWK named Kyleigh.  We saw her a few times a year when he was a toddler, and she has kept him on as a patient, seeing him just once a year.  We see her in the Ortho clinic at the IWK.   I had been doing some reading online about kids with Perthes, and every case I read about involved the kids seeing both ortho Drs and physio. This reminded me of Kyleigh. So I googled her name and IWK, and found her email address.  I wrote to her, just reminding her of who we are, and then letter her know of James' diagnosis.  I asked if we could push up our annual appointment, or let me know how to make an appointment with her.  She wrote me back the next morning (amazing!) and scheduled us for an appointment for March 28 (next week!).  She also let me know she has wo...

This post was written retrospectively... Tuesday, March 18 My parents had picked up the boys after school.  The plan was for me to leave work early, drive home to pick up James and go to the Dr, while my parents bring Jude to his drum lesson.   It was pouring rain as I was driving home, and my phone rang - it was my Dr.  I pulled into a church parking lot and she said there was a miscommunication between her and her receptionist - she wanted to see us in person, but he booked us in for a phone call, and an in person appointment.  So she decided to call, and she gave us the news that forever changed our lives.  I couldn't even understand what she was saying, "Legg-Calve-Perthes-Disease".  I had to Google it as she spelled it out, I'd never heard of it.   She told me that James was to avoid all physical activity - no hockey, no running, no jumping, no soccer at recess, no gym class.  She submitted an urgent referral to ortho at the IWK....

 This post was written retrospectively... I think the easiest way to go through what happened next, is chronologically, through a few days in the month of March 2025, in this one post.  * We took the first weekend of March off hockey, as per the advice of James' physiotherapist.  We had been tracking his pain level throughout each day, and wanted to see if the lack of activity had an impact on pain level.  It didn't, so he continued playing. *Wednesday, March 12 - We got in to see James' Dr. His physiotherapist had sent her a letter, expressing her concerns, and requesting an x-ray.  Our Dr. printed us a requisition for an x-ray.  As it was March Break, and there was no school this week, I went online to look at the x-ray schedule at the IWK for the remainder of the week.  We lucked out and were able to book an x-ray for the next day.  *Thursday, March 13 - We went to the IWK for James to have his x-ray.  He had had x-rays from being diagno...

 This post is written retrospectively...  February 2025: James is a happy, healthy 9 year old boy in grade 3.  In the summer he goes swimming daily, plays on a baseball team, and does typical kid things like summer day camps, biking, and playing outside with his little brother.  This winter is his first year playing hockey.  He started in November and is on the ice 3 x a week.   In late January, early February, he started complaining of pain in his right groin. He also started walking with a limp.  As James was new to hockey and still developing his skating skills, we figured it was strain from overuse of his right leg.  So, we booked an appointment with a kids physio therapist.   After an assessment, she suggested James get an x-ray.  We didn't know it at the time, but she suspected Perthes. We'd never heard of Perthes...