At the time of Emma's diagnosis, we did not find many other children or contacts within the UK who were in the same Perthes boat. We decided to keep this diary and hope in time it will help others.

Monday, April 6, 2009

30th March New appointment, new doctor

It's been a long wait for this emergency appointment. We are expecting a difficult time but was blown away by how difficult.

Emma's hip is not in a good state. An arthrogram is arranged to confirm the hips condition. Prognosis is not great, we hope this new doc can perform a miracle or it's not as bad as feared.

Another wait and see.

On a good note however
What a little fish we have. Emma swam really well and was awarded her 200m and 400m badges! Lets hope this keeps the pain at bay!

10th February Appointment

Not sure exactly where to begin this post, not sure what to write. The events at this appointment left me stunned.

Emma had another x-ray and we saw the Registrar first. He asked how Emma had been, I am thinking how do I tell them of my concerns, what the physio had said. So we begin, Emma is OK in herself but she has really crap abduction, physio measures it at 5 degrees. He examines Emma - lets view the x-ray. It doesn't look good to me. Much more flattening like the cross-section of a fried egg, the outer edge looked like it was extruding and fragmented. The consultant is called, at first dismisses the poor abduction but the registrar confirms. He then looks at her scar area - muscles and tendons have returned to original position.

What to think!

Brace failed to do its job, were we not looked after?

Conclusion
Refer onto the Perthes Gurus. Repeat operation, wear brace in meantime. Her head is at risk. Bye bye.

Hard to keep smiling for Emma.

2008/2009 update


It's been sometime since we posted and a lot has happened, all by the typical Perthes slow and wait process. Here is a summary of the last 3 months:

December 2008


Emma continued to wear the brace till 23rd December. It took 3 weeks before she was willing to take it off for a short while so she could have a bath. She said she felt very strange - like she was floating. We continued to have difficulties with the brace, the screws came loose a few times and Emma was able to bring her legs together.



In the mornings I would find Emma had her legs almost touching, so we took to placing cushions and pillows between her legs at night time. Her legs seemed to be less abducted, we spent time trying to adjust the brace but the more you abducted the cuffs the more the side joint pressed into her thighs. I reported this to the doctors but they were unable to see her till the following week. Unfortunately Emma was very poorly for the next week and when she was better, this only left one week before the brace was to be removed. Emma had bruising on her thighs and pressure marks, pinches from the straps. She also had itchy patches under the cuffs which drove her mad!



Towards the end of this time in the brace we noticed how wonky her hips were. Her left hip was higher then the right and not very prominent - it seemed to be twisted toward the back. By now she had lost weight and the brace had moulded her little frame. the brace became loose around her body and I had to add extra pads around the waist. Her hip bones were also very sore from the rubbing and pressure of the brace. She could move herself within the brace. We were beginning to feel the brace was a waste of time and was not doing its job.



Back to school


This was more difficult the we anticipated! I called to suggest Emma came back a few mornings per week before coming back full time. But it was not as easy as that! The head was greatly concerned to health and safety. Did Emma need a carer? Well no, she could walk and go to the toilet herself. But we had to wait for a few days before they finally agreed she could come back, but no one would push the wheelchair if they didn't want to. Big thank you to the Perthes Association who were able to loan us a self-propelling wheelchair - that solved that problem! Of course nobody really minded, schools are so afraid of being sued, but a few words with one of the governors made things move along. The last few weeks at school were few. The following week was the Christmas play, so Emma missed one day and went to watch the play on another day. Then there was PE in the playground - could I not bring Emma in during this time! Finally had one day, then the poor love was very poorly and missed another week!



Brace removal


Was very disappointed at our appointment - no consultant again. So we haven't seen him since the operation. Emma went for x-ray. No difference apart from a little more flattening. We were expecting her to continue wearing the brace at night time, but no. The nurse and me then spent the next hour and half trying to remove the dressing. Lots of magic water, gently easing, lots of tears. But the wound looked fine. Next appointment in 2 months, but this was later revised to 7 weeks.




Physio appointments

Our first Physio outpatient appointment was in December with the brace. She measured her movement in and out of the brace. Poor in all directions. At our next appointment sans brace she was able to take more measurements and give strengthening exercises. Her abduction was still very limited, Emma had a trendenberg gait. We continued with the exercises at home and Emma did very well on the strength based ones.

21st Jan Physio appointment
Emma's abduction is very poor. We've been waiting to see the benefit of the tenotomy, but none yet is apparent. Her hips are still very lopsided, and taking this into account her abduction is 5 degrees - really, really poor. Our next hospital appointment is on 10th February.



SNOW


Snow arrived on 2nd February, several inches - wow! what fun we all had. Let Emma have some fun, lots of layers but spent the evening and next day in pain.