November 16th appointment

Emma had a repeat x-ray. I was prepared for another long wait for her to be ready for her surgery. The consultant said when we first met him back in March that we needed to wait for the weakness and crumbling to finish before performing the valgus osteotomy. Also the supporting bones of her leg needed to be strong. He now felt it was time to put her on the list for this surgery. Although she still had some weakness, some bone had regrown on the outside.

It looked to me that her head was displaced by about 2 fifths - slightly under halfway. Emma had virtually no rotation now and wiggles as she walks. We were shown her arthrogram, there was pooling of dye in the socket and the cartilage looked like it was wrapped around the socket edge - not a smooth shape but had a dent caused by the impingement.

We asked what would happen if we did nothing and were shown other x-rays. Her socket would eventually open out and no longer be a cup shape. She will not have good hip sadly, but he will do his best to give her some movement and reduce pain levels. If we had a hip like that we would be in agony!

So Emma will have a valgus osteotomy in Jan or Feb 2010.

November 2009 update

Where are we now?

I know we haven't updated our blog for a while. But following our last appointment with the new consultant the emergency treatment was not so immediate. Sadly Emma's Perthes progressed very rapidly and containment treatment was now too late. It's taken a while to get our heads around this and still feel very let down by our first doctors. Many many times I have asked myself why did we not go for a second opinion at one of the orthopaedic hospitals - a place where they see many cases of Perthes and have the top people. I have entered below our last 6 months.

May 2009

Emma had her arthrogram at the end of May. She was first on the list because she was the youngest that day. I prepared her for surgery by wiping her body with antiseptic wipes - luckily they were warm. They put the magic cream on her hands and went off to the theatre. There was a delay and Emma got a little anxious, so the anaesthetist entertained Emma with a surgical glove balloon man :) I was called back about 40 mins later and she was a little dozy. She had a little plaster over the hole and was told all went fine. They had dosed her up from any pain after affects.

The consultant wasn't on duty so his registrar just told us all went well and to come back in 6 weeks where they could discuss the results. I was a bit disappointed as i wanted to know what state her hip was in and whether containment treatment could still be done.

July appointment

Most annoying the consultant wasn't in clinic. We saw a young member of his team who could not really tell us much but said he was booking her in for her surgery. We objected to this as we really wanted to discuss options and results with the consultant. He checked with a senior member of staff and was given a 4 month appointment.

4 months! Seems so long to us especially when we were told her hip was at risk. The longest we waited before was 8 weeks. We called the secretary to see if we could see him earlier as it would be 8 months between our first visit with him. We were advised to write, so after weeks of worrying and when I had calmed down lol, I did get in touch. His reply said little more then at our first meeting with him, so have to wait till the 16th November

Summer holidays on a long boat

Trying to decide on a suitable holiday to stop Emma running around. We went for two weeks on a longboat around part of the Leicestershire ring. Apart from there being a lot of rain, I being unwell with suspected swine flu the first week, we did have a good time.

Foxton Locks - look at that sky!

Emma, Katie, Daddy and boat

Emma and Katie on top of boat

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.