I wonder how many people realise that AV is one of common complications of SCD.
My son has been complaining about pains in his back, hips and knees for almost 3 years, but it was always put down to sickling in those areas. Only once did one of the consultants he sees suggest he may be Vit D deficient but nothing was done about it. I started giving him Vit D and K supplements myself just in case he was truly Vit D deficient.
He continued to struggle with walking up until late last year when he started to lose feeling his leg occasionally and would fall over. I knew something was wrong and asked for an MRI Scan from his paediatrician and then physiotherapy/hydrotherapy appointments from the GP (based on my google search which alluded to this been helpful to SCD patients). The MRI was done on his back and revealed a degeneration/compression which I was told was commonly seen in people with SCD but as his spine was healthy, no further action was taken.
Last month my son got really bad and started screaming in pain due to pains in his hip region and I took him into hospital. His haematologist asked for an X-ray and this revealed AV. He has since been referred to Orthopaedics and now uses crutches to aid walking. We are having another MRI done on his hips and have been told he may need hip replacement at 14!
I just wonder if this could have been caught earlier and prevented if someone had thought to X-ray his hips when he first started complaining about 3 years ago. Why, if doctors know AV is common to SCD patients did no one think of this?
He was already going into clinic every 4-6 weeks and now that might increase as the consultants he sees has increased to 3 - paediatrics, haematology and now orthopaedics. That's a lot for a young boy!
I just thought to let others know; don't ignore that pain in your hips or lower back. It may be AV developing. Get help now.