Coping with Perthes Disease

One year ago today, our world and everything we knew was rocked.
Our perfectly healthy active 6 year old daughter was diagnosed with Perthes Disease.
It was a confusing time and we felt so lost.

I still remember the phone call that very early Monday morning on the 4th January 2014 asking us to come in for an urgent appointment regarding the X-Ray Celine had of her hips the previous December. We made it for that morning. Celine and I sat stunned and confused when our GP proceeded to tell us during this appointment that Celine’s femur head was slightly flattened on the right side and that she had a condition called Perthes Disease. We didn’t see the X-Ray for ourselves. We left the appointment knowing nothing other than that she needed to get crutches, remain non-weight bearing and to google the rest. I spent half the day in a panic before finding out where to hire a pair of crutches from and researching what the heck Perthes Disease even was.

Our first Sling

The next month or two was a blur, figuring out how to cope with the requirement of crutches to walk, setting restrictions on what physical activities Celine was allowed to do, learning more about what Perthes Disease was and finding a support group on Facebook. I had already been blogging for years so it was natural to start posting about Celine’s new medical condition and viewers of course saw everything in the Daily Vlogs that I had started uploading in the middle of December between Blake’s 2nd and Celine’s 6th birthdays.

It was the viewers and readers that helped me the most. They were the ones who helped me teach Celine how to use her crutches, to keep her foot up, stop wearing a shoe on her Perthes Foot, introduce the Snyder Sling to make it easier to support the lifted leg, decorating the foot as a further incentive to keep her Perthes Foot off the ground. Those ladies will never know just how much Celine and I appreciate everything bit of advice they gave us! It was that advice that brought to us a new following of readers and viewers, other mothers with children diagnosed with that same disease in that same panic and confusion I felt the day we received our diagnosis.

June and August X-Rays

Celine’s teacher helped Celine get settled in at school with her classmates. Encouraging the other children to offer help to Celine in carrying her things when she needed it. Celine and her teacher worked out what sports and activities Celine could cope with and arranged other activities for Celine when her class had a sport that Celine wasn’t able to do. Slowly we settled into a routine way of life as we learnt to cope. We had a new normal.

The rest of the year followed this routine. The only breaks were the GP appointments for pain medication as the deterioration of Celine’s femur head progressed further and specialist appointments with X-Rays to check on the progress of that deterioration. The specialist appointments usually included some derision on behalf of the specialist about Celine’s sling and crutches. He would have prefered her to not use them at all. The GP encouraged Celine to remain non-weight bearing. Life went on.

Continuing to use crutches and wear a sling
despite the Specialist’s directions.

The X-Ray in August provided me with comfort and certainty that we were right in continuing with Celine’s sling and crutch routine. Despite the derision of it from the specialist. That X-Ray showed no further deterioration from the previous X-Ray in June. Then Celine’s last X-Ray in November provided us with good news. Her right femur head had started solidifying again. Her specialist  stated that Celine only has a mild case of Perthes Disease and wanted us to stop using her crutches and sling immediately. I refused.

Within days of making that all too important decision to ignore the advice of the specialist and continue with the use of the sling and crutches, I was hearing stories of other children who had been given the advice to start weight bearing because
they were no longer in the fragmentation stage but at the next specialist appointment discovered that they were in need of surgery because the hip and gone back to deteriorating even worse than before. I was left thinking “what if that had been us?” What if we had followed the specialist’s direction to stop using the crutches and sling and at our very next appointment this coming February discovered that Celine’s condition was worse than ever? It made my decision to continue even more certain in my mind that I was doing the right thing to ignore the specialist.

There are things that I wish I had changed during this past year. Things we allowed Celine to do that she probably shouldn’t have. Things we should have done with her that we didn’t. Things that I hope to change as we enter into our second year of coping with Perthes Disease.

Do you have any questions about Perthes Disease and coping with it? Let me know in the comments below for a new Q&A vlog.

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About AMummysLife NZ

Mother of 4 children. Blogger about family life, recipes, product reviews and motherhood in general.
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