My son Imp was diagnosed with Perthes disease in late December 2013, at the time it wasn’t considered to be too bad and was treated with hydrotherapy, physiotherapy and withdrawing from high impact activities such as football, rugby and running. This was for an active seven year old boy punishing enough but my little imp accepted it all with good grace and got on with it, continued to limp and yet seemed to enjoy his treatment particularly the hydrotherapy. I was amazed at how well he coped with so many of the things he loved to do being taken away so quickly. What struck us as well was how quickly he went from always being at the front of the queue and out in the lead when we went anywhere to having to rely on his wheelchair to get him up the hill from the local shops.
It was with some trepidation that we attended his three month check-up, we knew that the way Perthes progressed meant that in all likelihood the condition would worsen before it improved and that normality was unlikely to return to him for at least a year and possibly two. What we discovered however was that the femoral head had deteriorated to an extent that it was no longer contained in the hip. Our consultant therefore referred us to a colleague for a second opinion regarding surgery. Things moved quickly and within a week we were sitting in another hospital waiting room to meet the new consultant. He was to the point, examined imp and thought that surgery was necessary but to be sure needed an arthrogram which was performed 10 days later. The results were apparently good showing surgery would be a success and hopefully secure Imp a better long term outlook and healing.
The operation, a femoral osteotomy involved cutting a notch out of the femur, repositioning it and securing it with a plate and screws, and in Imps case keeping both hips abducted in a broomstick cast for 6 weeks. The surgery happened on the 1st May. The night before I hardly slept and during the morning before he went to theatre I was a wreck. I went into the anaesthetic room with him and he as fine until just before the anaesthetic went in when he began to panic. If I am honest I was terrified of seeing him after the operation, I was worried I wouldn’t be able to control my feelings when I saw him with his legs cast but when I did see him I held it together and it wasn’t as bad as I had feared.
the first night in hospital was horrific, imp was suffering cramps and somewhere in the small hours screamed his casts were squeezing him. Being in an orthopaedic hospital you become strangely used to hearing cries of pain but when it is your own son telling you to help him and squeezing your hands it becomes real. In the morning it was discovered that the leg was swollen and the cast needed to be split, this led to a full on panic attack, I held him and tried to reassure him but in the end I just had to be there for him. Pain relief was upped and in exhaustion he slept, I wept and then we started again. The cramps continued but the swelling reduced and Saturday proved to be a brighter day with Imp eating and suffering less with movement. Eventually he came home on Monday, it was a feat to get him in the car but we were so glad to have him home.
I had missed the girls terribly, they had been looked after wonderfully by their grandparents and been to visit Imp in the hospital but at last we were together which was comforting but also terrifying. Could we cope with moving him? What if the pain increased again? Could we handle the sleeping arrangements. We are only two days in but already Imp is only having paracetomal, he has his own bed and things around him. He has his beloved dogs and is slowly rediscovering his appetite. He has learnt to help to take his weight so he can now transfer from wheelchair to bed and back or to the sofa and so on so that one person can assist which means Mr T can return to work.
I fear boredom will begin to set in as he is now rather alert, he has been making the most of mine craft, TV, X-box and so on but we are now re-introducing some school work and we are hopeful that he will soon be able to attend again, even if on a part time basis, as it will help to keep us all same. We are all counting the days until the cast comes off, we know he may still have to use a mixture of crutches and wheelchair for a further six weeks, as well as resuming his physiotherapy and hydrotherapy regime but he seems to be showing great resilience so far. We are taking it each day at a time trying to ensure that we don’t push too hard but encourage him to go for the next step.
At this moment we have no idea how long the Perthes will take to be completely gone and how it will affect his hip long term, he could require further remodelling or even a hip replacement at some time but we are hopeful that the surgery he has just had will help to avoid these outcomes. Yes I will always remember those dark hours in the hospital when his little face was screwed up in panic and pain, but hopefully he won’t, hopefully he will realise that we did the best we could for him and helped to support him through what will undoubtedly be the hardest thing he has dealt with so far in his little life. Not to mention having to support the girls and ensure that they can express their feelings.
We have been blessed with lovely friends and family who have rallied around with offers of help and have made not only him feel special, spoiling him with cards and gifts as but helped me by responding to my desperate posts on Facebook with messages of support. It means more than people realise to see and x and know someone has read what you have written and thought of you, even for a few seconds and felt some empathy. The messages for Imp himself brought rare smiles in those first couple of days and now he seems so much more settled it seems odd thinking back to just a week ago! There is still a long road ahead but for now we are grateful he is over the surgery itself and can now heal and recuperate.
Thanks also to the Perthes Association, a small charity that supports families with children suffering from this condition offering lots of advice and support, the people on there certainly helped us to prepare for the surgery and coming home. I have also to say that the staff at the Royal National Orthopaedic Hospital were very good and supportive, they listened to us and took action where necessary and got us through the dark days.
For those of you who’d like to know more about Perthes have a look at the Perhtes Association website and in the interests of fundraising if you feel you can help please text PERT10 (£10 or change the number to whatever you can afford) to 70070.
Life is full of opportunities but also likes to catch us out as my little Imp has discovered but as he looks forward to getting his cast signed and returning to school I marvel at how brave he is, how he accepts the situation and gets on with it in a way I think I never could and I pray for the patience and strength to give him the support he needs in the harder times. Count down to cast off and walking again starts here…