Post by Donna Brown on May 3, 2007 0:20:41 GMT -5
This is being posted on behalf of Tanya - Samuel's mum.
Samuel was diagnosed in February ’06 with Perthes just 2 weeks before his 10th birthday. This age, with an early diagnosis, puts him in the ‘at risk basket’ so we have always been proactive and aggressive with his treatment. His initial symptom was limping and I remember getting annoyed at times that just when he was asked to do a job he would complain of pain in his thigh. We put this down to being a kid and even gave him the talk about being responsible and helping with household chores. However, after 2 weeks of intermittent pain we decided there was more going on than a pulled muscle and took him to the doctor. The doctor’s first response was to check his hip ROM. I remember thinking that was odd as the pain was in his thigh. However, it was clear that Samuel had reduced ROM and we were sent to hospital.
Initial x-rays showed very little and Samuel was in hospital for 3 nights under observation. He was then sent home for a week’s bed rest with instructions to mobilise only to the toilet. A week later the pain was still there so we returned to hospital, had another set of x-rays and were then given a diagnosis of Perthes. The only thing visible on the 2nd set of x-rays was a slightly smaller and denser femoral head. From the start, our specialist has made it clear that with Samuel’s age he is at a higher risk of complications and other long term effects and while we have never felt pushed to choose one path or another, options have been clearly explained.
Samuel spent the next 6 weeks non weight bearing, to reduce inflammation in his hip. It was a big adjustment for us all, having a once athletic child become a disabled child, but Samuel took it all in his stride. After 6 weeks the pain had reduced dramatically and Samuel could once again walk unaided. However, long distances still required (and still do) the use of crutches or a wheelchair.
In April it became evident that the bone was beginning to sublux, so we chose to operate quickly. Samuel was in more pain and beginning to rely more on crutches around home. We felt 'wait and see' was not an option for us, due to his age. So in May, Samuel had a pelvic osteotomy. Any surgery is rough and it was a huge shock for us to see our son struggling after surgery. It took 1 week to get the pain under control, 2 weeks to be able to transfer comfortably from couch to wheelchair and 3 weeks, before we felt confident enough to let him make his way around the house, without us hovering behind ready to grab him. He was not cast however and while he was unable to bear much weight, he was swimming within 3 weeks of surgery. This meant his recovery was much quicker, as moving increases blood circulation and aids healing.
Now we are waiting (any Perthes parent knows how hard this is). Samuel began fragmenting in November ’06, 6 months after his operation. He has 70-80% involvement and has lost the entire lateral pillar. This puts him as a Herring C classification – the worst possible class but we choose to remain optimistic. The loss of the lateral pillar also means the bone will grow back coxa magna, but it is too early to know what shape it will be. We have yet to see any reossification (or as some doctors prefer regrowth). While most of the bone has collapsed, he has retained some shape on one side of the femoral head. I believe this is due to surgery and being contained well, early on. Containment has also kept his pain levels to a minimum. There is more support for the fragile, fracturing head. He lives with pain daily but it is manageable and he only has Panadol at night or when he is swimming or horse riding. We are hopeful that the next set of x-rays in July ’07 will show new bone forming.
Samuel was diagnosed in February ’06 with Perthes just 2 weeks before his 10th birthday. This age, with an early diagnosis, puts him in the ‘at risk basket’ so we have always been proactive and aggressive with his treatment. His initial symptom was limping and I remember getting annoyed at times that just when he was asked to do a job he would complain of pain in his thigh. We put this down to being a kid and even gave him the talk about being responsible and helping with household chores. However, after 2 weeks of intermittent pain we decided there was more going on than a pulled muscle and took him to the doctor. The doctor’s first response was to check his hip ROM. I remember thinking that was odd as the pain was in his thigh. However, it was clear that Samuel had reduced ROM and we were sent to hospital.
Initial x-rays showed very little and Samuel was in hospital for 3 nights under observation. He was then sent home for a week’s bed rest with instructions to mobilise only to the toilet. A week later the pain was still there so we returned to hospital, had another set of x-rays and were then given a diagnosis of Perthes. The only thing visible on the 2nd set of x-rays was a slightly smaller and denser femoral head. From the start, our specialist has made it clear that with Samuel’s age he is at a higher risk of complications and other long term effects and while we have never felt pushed to choose one path or another, options have been clearly explained.
Samuel spent the next 6 weeks non weight bearing, to reduce inflammation in his hip. It was a big adjustment for us all, having a once athletic child become a disabled child, but Samuel took it all in his stride. After 6 weeks the pain had reduced dramatically and Samuel could once again walk unaided. However, long distances still required (and still do) the use of crutches or a wheelchair.
In April it became evident that the bone was beginning to sublux, so we chose to operate quickly. Samuel was in more pain and beginning to rely more on crutches around home. We felt 'wait and see' was not an option for us, due to his age. So in May, Samuel had a pelvic osteotomy. Any surgery is rough and it was a huge shock for us to see our son struggling after surgery. It took 1 week to get the pain under control, 2 weeks to be able to transfer comfortably from couch to wheelchair and 3 weeks, before we felt confident enough to let him make his way around the house, without us hovering behind ready to grab him. He was not cast however and while he was unable to bear much weight, he was swimming within 3 weeks of surgery. This meant his recovery was much quicker, as moving increases blood circulation and aids healing.
Now we are waiting (any Perthes parent knows how hard this is). Samuel began fragmenting in November ’06, 6 months after his operation. He has 70-80% involvement and has lost the entire lateral pillar. This puts him as a Herring C classification – the worst possible class but we choose to remain optimistic. The loss of the lateral pillar also means the bone will grow back coxa magna, but it is too early to know what shape it will be. We have yet to see any reossification (or as some doctors prefer regrowth). While most of the bone has collapsed, he has retained some shape on one side of the femoral head. I believe this is due to surgery and being contained well, early on. Containment has also kept his pain levels to a minimum. There is more support for the fragile, fracturing head. He lives with pain daily but it is manageable and he only has Panadol at night or when he is swimming or horse riding. We are hopeful that the next set of x-rays in July ’07 will show new bone forming.