Emma's Perthes Diary

12th May 2008 It started with a limp
It all started about 12th May 2008 Emma would be screaming in pain when she got up in the morning and not being able to put any weight on her left leg. I assumed she had just pulled a muscle or strained herself. She was so active, runs everywhere, jumps around like a loon, did trampolining, Ballet, tap and modern dance, swimming and general tearing around and often falling over, bruising a leg etc. so I didn't put much thought into it. I gently massaged her leg and moved it slowly till she could stand again. Then sent her off to school! She moaned all the way that her groin hurt and she couldn't walk too fast. This went on for about 10 days, then she started getting a bit better - at least no more of the bad pains in the morning. But we were worried how she was compensating for the pain in her groin, turning her leg inwards, rolling her hips side to side. She soon developed her own way of moving fast a kind of skipping hop where she would not use the left leg so much. Soon she was tearing down the hill again.

It happens that one mum at school has scoliosis, and my husband's sister has it too. She said to me after about 3 weeks of Emma limping that her own scoliosis started in her hips and I should get it checked out. So we went to our GP clinic - you never see the same doctor twice - the young doctor gave me such a surprised look when I said she'd had the limp and pain in her groin for 3 weeks. I thought what's the fuss it's most likely growing pains or a strain that's taking time to heal. We got referred to the childrens assessment unit where I answered a million questions - mostly about if she had had a cold - they went through possible reasons and had mentioned Perthes as the last possibility. They took blood tests and an x-ray and said everything looked fine and go take some neurophen if she was in pain. They let me look at the x-ray I couldn't help notice the larger joint gap in her left hip and pointed this out. I was told the x-ray team would review it but they thought it was normal.

I spent the next week or so trawling the net for sample x-rays of a joint gap, trying different searches not quite sure what terms to use. I found one set of x-rays where gaps were mentioned and pointed to Perthes. The Perthes sites detailed how early onset may not show in the x-ray, an MRI or bone scan was needed. At the next outpatient appointment Emma was bright not in much pain, jumped a bit but still had some weakness in her left leg and lack of full movement. The doc decided it was most likely a strain and to have a physio assessment. I then said how we were still concerned about Perthes, we wanted to be sure she didn't have it and I queried about the gap I saw in the x-ray. I also reitterated that something wasn't right - this was not my normal active daughter. He said he'd speak with the team who reviewed the x-rays.

Of course a week later he called back, the radiologist had suspected Perthes and to come in have a frog-leg x-ray done. We did this, and the childrens assessment unit said it told them very little and she'd need an MRI. They examined her, and by then she was back to a little bit of running although not to running at full tilt, she was in good health in general. They made me feel I was wasting their time really, she seemed perfectly normal to them but Idecided that we should wait for an ortho to examine her. The orthopaedic surgeon gave her a much more thorough examination, held her hips still why'll he tested her range of movement. He didn't want to worry me but...

So 2 days after the MRI we get the confirmation from the consulant. I was shoked but also not surprised either. The few days before I had convinced myself everything was OK. He showed me her x-rays again and pointed out the flattening and the crack. I couldn't help saying why had everyone missed it! He said you have to know what you're looking for! It was only my motherly concern that had brought us back.

So stopping an energetic six year old running and jumping and making her walk... I met with the school during the strike here in england, many schools were shut so it was peaceful. They were very good and ours is an inclusive school. I made her some lables to take to school last friday it was mostly to remind her what she cannot do now and also to remind the teachers and her friends. The label said 'I must not run or jump so please wait for me'. They're not for ever just the last few days of school and maybe the first week of the new year. I guess some of you will think I have 'labelled her' - but this is not the reason, she forgets so easily, she'll be off in a shot running with her friends or onto the climbing frame. Listening and remembering is not one of her strong points! As hubby says she has the attention span of a nat! I've told her for now it is until christmas. she asked me yesterday if christmas was next week ;-)