26th August

We met with the registrar today. Emma made him laugh, as soon as he closed the curtains she said 'look at this' and before anyone could say anything she stetched her legs quite far apart. 'That's very good Emma!' he smiled.

He examined her in more detail, holding her hips still, it was very good! he asked if I could remember what the consultant had said about continuing traction or not! But decided she was doing well and to come back in two weeks where they'll probably do more x-rays to see how things are going.

Such good news! but of course has the slight down side, Emma is now is feeling so good she keeps forgetting she is still on restricted activities. She keeps playing games and running! I've sat her down twice now to say she still can't run or jump even though she is has no pain, the limp is there still a little, some days more then others.



I guess we wait in anticipation for the next appoinment!


It's hard at this time to think what may lay ahead. I read about other children with Perthes and wonder what lies ahead for Emma and us. We've been told this can be a long path and we don't know what route it will take, but I think for now we can be happy that Emma is very cheerful and in no great pain;-)

Is the traction working?

We've been applying the traction for 9 days now and Emma has done her stretching exercies fairly regularly. She has shown great improvement, I'm sure she is past that magic 30 degrees now!

Our next appointment is on 26th august, no x-rays just to see how she is getting along with the home traction.

Andy's boss gave us some cakes, Emma tucked in!

Home traction kit August 15th 2008

So off we trotted to the children's ward accompanied by the sister who proceeded to lecture us on how we should leave it to the professionals to look after our daughter, how it was not such a good idea to do this at home. We were a bit stunned, it wasn't our idea we explained but the consultant's.

We arrived in the ward to be greeted with 'what home traction kit - it doesn't exist!'

So before we knew it Emma was choosing a bed and I was filling in a form with the nurse who then asked 'so who will be staying tonight?' Then the penny dropped Emma was being admitted, there was nothing for us to take home - yet, and it was best we observed how to look after her in traction.

Unfortunately we hadn't been prepared for this and neither had Emma, 'am I staying?' She asked.

The traction kit ended up being two rubber straps to which a cord was attached, some brackets to add to the end of the bed, pulleys, weights and bandages - not quite the slightly higher tech image we had in mind.

We ended up staying two nights. Emma was in pain the first night but managed to drift off to sleep.

In the meantime Andy got busy! He'd measured up the hospital bed and with the help of B&Q and some welding help from a local business, Andy made our own frame to fit onto the end of Emma's bed at home.

We wanted Emma to be home, the consultant said we could do the traction at home, but the staff in the children's ward seemed less convinced. Andy brought the frame into the hospital to show the doctor and nurses and home support staff. They were impressed! It took some persuation still to convince the doctor we will do this properly, we wanted Emma to stretch her leg we were not going to cut corners. The doctor wanted Emma to stay another week, but after discussing the issues with the consultant the doctor let us home to try home-traction for just over a week.

The home visit staff arrived to check everythink was OK and to set up the traction. We had to jack-up the end of the bed to counter-balance Emma's weight against the weight of the weights.

One problem with this kind of traction is the bandages slipping down the legs and the weights reaching the floor during the night. So I came up with a cunning plan!

Traction alarm

I made use of my elder daughter's electronics kit. With some thin wire I adapted a switch circuit that played the loudspeaker when the circuit was closed. I attached the wires to the circuit board and laid this outside our door, then run the wires under the carpet into the girls bedroom and under the bed. I attached the other end of the wires to the simple switch and taped this to the carpet, aligning it under the weight. If the weight should reach the ground the weight itself would then close the switch and activate the loudspeaker.

That second night with my alarm in place we were woken to 'happy birthday' about 8 times!!! Poor Andy had to get up and pull Emma up the bed each time.

The next day he raised the end of Emma's bed a little higher!

Second consultant appointment August 15th 2008

What do we need to ask? What stage was Emma's Perthes at? What level of Perthes was it? What measurements would be done? Another x-ray? I gathered the questions in my head. We purchased a diary in the airport to keep track of dates, appointments, events and when she had her medicine. I wrote a few keywords to remind me.

We arrived early as the letter said there maybe a need for an x-ray, so Andy was on his way from work. We were called in early and saw the Registrar first, I was hoping we would see the consultant and Andy hadn't arrived yet! The registrar read the notes and then examined Emma's range of movement (ROM). I told him how well she was doing from the swimming and exercises we had done. He did some simple movements like how far she could move her straight leg out laterally. Not very far! He said he thought it was still very tight and to wait for the consulant to take a look.

Andy arrived in time and the consulant examined Emma's ROM. 'Still too tight, let's try skin traction for 4 weeks, just at nightime and a few hours during the day while she watches TV.'

4 weeks! That was longer then we expected but we were sent to the children's ward to get a home traction kit. The consultant explained it was too soon for another x-ray but the most important thing to do was to solve the irritable hip and eliminate the contrated tendon as it was pulling the head into a bad position. So I did not manage to ask my questions save one on physio therapy, he did not think that was a good idea at this stage as a pull could be made in the wrong direction.

Holiday in Turkey 2008

Our consultant said it was OK to go on holiday and to continue her Nurofen doses 3 times per day. Lots of swimming and the heat would do us all good but especially for Emma. We were hoping that spending so much time in the pool and the warmth would ease her tight tendon and muscle.

We had a couple of mishaps, falling onto her bottom the first day because she was running on the pool side. It is so hard to constantly tell her 'No' but she did slow down. Emma made friends with another little girl, Emma was so happy to have someone to play with, but soon she was running a little and jumping a few times into the paddling pool. We discussed just how much to tell her and what can she understand, again we sat her down and tried to tell her how she must be careful.

The mini disco showed how good she actually can be at looking after herself. The first time we just watched, it was the third time we had visited this resort so the staff already knew Emma so she did know most of the songs and dances. The next time she joined in and when the movement was too fast or invloved jumping she came and sat out. I tried to encourage her to just bend her knees to the music when the jumping was involved, that worked on a few occasions.
No jumping, how far do you take it? How much damage can be caused? A little boy pushed Emma off the stage, a drop of about 2 feet. I shouted out not realising she had been pushed, 'It wasn't my fault mummy'. How can other children be wary when your child looks so normal?

We began some simple exercises, front leg raises and sitting in a frog-leg position, letting gravity help stretch the muscle. By the end of the holiday Emma could almost sit cross-legged we thought she had improved greatly. Our next visit to the consultant would determine just how well she had done - would she still need traction? Or would she need the tenotomy?

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 ;-)