Sept 30th 08 - another 6 weeks check-up

It was Annabel's second check-up after the operation Tuesday. She had been doing really well on her crutches and even better in hydrotherapy. She would not use her crutches in the house and if we were on long journeys - in her wheelchair.

My main concern was how short her leg was - 2.5 cms. Her limp is very obvious, but doesn't phase her. She had the usual x-rays and into to see Mr Price.

He was pleased with the x-rays and where he had cut the bone and pinned it, it had fused and healed completely. I mentioned her limp and he said that the leg should lengthen once he operates next year. It apparently the blood stimulates the growth. I'm not convinced. Time will tell. She has an insole for her shoe, but is only 1cm. Annabel's physio says that she is yet to walk 'normally' and she will not limp so badly once the leg is stronger and muscle is built.

The good good news is that she can now do a few more activities. She is off her crutches and can do cycling, swimming and at last PE at school. Nothing high impact.

The next check-up is 10th February - 4 months.

19th August 2008 -The Six Week Check up

Annabel went to see Mr Price on 19th Aug - six weeks on from the op. Annabel has done so well. She was very weak at first and I was worried that she would never use her leg again, as she would say I don't know how to move it, when trying to do her exercises.

but is now great on her crutches and is ready to walk. We still need the wheelchair for long journeys.

She had an x-ray at her check-up and Mr Price was very pleased. You could see the new growth of the bone and where the pins were. She is however, to stay on crutches for a further six weeks.

Her leg was measured and although is only a couple of centimetres shorter, look more like an inch shorter. The physio says it's her compensating. Hopefully she wont walk with a huge limp.

School is to start next week, so hopefully she will be quite mobile and as normal a school life as possible.

Bell on a day out the Royal Welsh Show

30th June 2008 - The Operation

All was well in the night, Annabel had settled well. She had her casts removed in the morning, which Annabel found quite strange. She still wheeled around in her wheelchair with her legs wide open, as if she still had them on!

Her poor legs were stick thin, bless her, and all crusty! She was offered to have a bath, but declined, so I gave her legs a good scrub and moisturise. Her slot, was to be around lunch time. Before the operation the magic cream was applied, and she was also to have a sedative half hour before. This was given, but then the trolley arrived to take her to Theatre - not long enough to work.

Annabel refused to go, and started screaming crying, so much so, that I had to carry her through the corridors to theatre. An absolute nightmare. It was so horrifically upsetting for all. I'll never forget it.

She had gas, and settled after a while. Then the wait....

Annabel had gone to Theatre about 1:15pm and the nurse had called us to say she was in recovery around 4:00pm. I thought great we can see her, but they wouldn't let us see her was nearly an hour - torture.

When we went into recovery, she looked awful, so pale, with an oxygen mask on, and so still. She was sedated, and would not come fully around for a good few hours. Again, so upsetting for both Darren and myself.

And so we went back to the Ward.

Annabel came round fully a couple of hours later, when Mr Price visited. He explained that she had lost a lot of blood which was normal for this bone operation. She may need a blood transfusion. We were devastated at this news. Blood tests were taken and the level was low. She was given iron.

Annabel was very tired. Her leg was in a sling and was quite uncomfortable. She had painkillers and had to use a bed pan, which was an event in its self. She screamed for fear of pain. She was bed ridden for 4 days -the hardest part of the stay. She coped really well with the pain, but was very frustrated at not being able to get up. Every time I tried to move her her screams would have me in floods of tears.

Annabel finally was allowed out of bed after 5 days. This again was a challenge, but after the screams and shouts, she did it. This was freedom for her to get into the play room with her new friends at hospital.

Every stage was a challenge and she finally got in the hydro pool 8 days after the operation. Again very scared to get in, but once in - loved it!

We were allowed to leave on day 10. The nurse changed her dressing, and we were able to see her wound for the first time. I'd say it was about 8 inches in length, with internal and paper stitches. By the way - I slept there every night and stayed every day only leaving for baths! Not exactly a great relaxing place to be!

Annabel was to take a zimmer walking frame and crutches home. She was still very weak and her legs were very thin.

She was to have hydro twice a week and in the gym once a week.

29th June 2008 - We arrive at hospital

We took Annabel to hospital the night before her operation. I was to stay with her at the hospital, for the duration of her stay, whilst Darren looked after Robbie. It was finally here. Yes it was nerve-racking for all of us. Annabel had kept it together and was so strong. She had a few tears only, saying that she was scared - and so that must be expected.

The Pre Op Assessment Friday 20th June 2008

We went for Annabel's pre op assessment. We met with the staff nurse, Dr Price and the anesthetist. We had a tour around the children's ward and Annabel got very excited about being there. The Ward is lovely. A great play room too. I will be staying with her at hospital, where she will be about 10 days. She will be resting for most of that time, then with some hydrotherapy.

Feeling a bit anxious about it all now, counting the days.

This is a picture I found of the operation that Annabel will be having. It will take about 4-5 hours. I asked if her leg will be shortened much, and Dr Price said it would be about 1cm.

Looks rather gruesome.

Annabel starts back at school

Monday, Annabel finally started back at school. A really nice lady is her learning support assistant. Annabel was granted 20 hours of support a week, which means she goes to school, 3 full days and 1 half day.

She has been enjoying seeing her friends again, but is still conscious of the way she looks. We have to close her bar to bet through doors (as they are really wide now), and she uses a commode in the toilets.

She has her pre-op on the 20th June. This just makes it all real, that she will be having her operation. Doctor Price has said it is a 3-4 hour operation and she will be in hospital for a week. He has reassured me that she won't be in plaster afterwards -fingers crossed.

We had a great day out at the Wildfowl and Wetlands on the weekend.

The operation is imminent

We are going to see Dr Price every wed for Annabel's weekly checkup. She has now been in plaster for nearly 3 weeks. The previous week, she had her plasters changed, as she was complaining of pain in her left knee. When the plasters were removed, the knee had lost the skin off it, due to rubbing. Poor thing!


Darren (dad), put the suggestion forward: why can't she just have the plaster up to her knees? Dr Price said, why not? So they were put on just up to the knee. This is so much easier for everyone, as she can bend her knees. Fab!



Annabel had an x-ray last week also, to see if the leg had gained any mobility. she has gained 10 degrees. Dr Price now wants to operate in the middle of June (earlier than expected). it involves cutting the femur and moving the bone. It's quite dfficult to explain in writing. But it will mean the leg will end up slightly shorter. He said that there are ways of treating this - still what another blow.


Annabel is well and coping with everything. Hoping to go to school in a week - just waiting for a helper that can lift her through doors, toileting etc.

A photo I took with my new camera!

Wednesday 7th May 2008 - The cast is on!

We decided to bring our holiday forward as Annabel was to have her broomstick cast put on sooner than we thought. we spent the week in Turkey, where Annabel thoroughly enjoyed. She did however feel more pain, simply because she was more active in the pool etc. We arrived back on the Monday. Tuesday her wheelchair arrived. We were all pleasantly surprised by how easy it was to dismantle and put in the car. Annabel thought it was cool!







Wednesday then arrived. We got to Morriston Hospital fracture clinic and was sent for an x-ray. Yes it had progressed (as expected), but further than Dr Price thought it would be. He also said that her range in her hip had got worse. He then went on to say that she would probably need the operation after the 2 months is up - gutted.

The plasters were put on - bright barbie pink! Annabel loved them. The bar was put in (a crutch cut down to size). The bar was to be adjusted every couple of days to extend the width of her legs. This was to prepare her for the op.

Annabel is now used to going around the house in her wheelchair. We carry her upstairs - hard work. It has to be done though.

Tried to apply for a blue badge for disabled parking, but was knocked back and would take a month to come through. Great!

Very hard to get her in the car (Focus). Are now looking for a bigger one (Citroen Picasso).


Annabel is very brave and coping with it very well. We are very proud of her.

Bell taking it easy watching TV in prime position!

April 11th 2008 - Bell's upset

Explained to Annabel this eveing about how she will get around in her cast in a wheelchair. It's the first time she has got upset. She does not want to go to school in a wheelchair. Hopefully the can arrange home tuition - how I will organise things though, with work, I don't know. But needs be - and I will do anything for her.

I explained about the broomstick plaster and showed her some pictures of a boy in a cast in his wheelchair. I think the more we talk about it the better.

This site may be of help
http://stevekraft.com/jacob/index.html

April 10th 2008 -Bad news

It was Annabels 6 week check up today. I was feeling positive about it as her limp and pain had not got any worse. We went in and Dr Price did the usual tests of moving her legs in different positions to see what range she has.

The news was not good. He suggested that because her range was very limited - very stiff, that she should be put into broomstick plaster (double full length leg plaster with a bar between them) as soon as possible.

My heart sunk and I cried as they measured her for a wheelchair. This was so real now. Completely gutted. My world or should I say our families world was rocked and changing again. Annabel as usual took it really well, as children do.

We have to wait now for a wheelchair to be ordered, then they will fit her plaster. She will have a plaster on for 6-8 weeks. Depending on how well things go - whether she gains any more range, they will operate or not.

Now I am looking for advice on how I get her around and in a car with a double leg plaster.

Life goes on.

February 2008 Annabels Arthrogram

Annabel went for her arthrogram in February. An arthrogram is where they inject dye into the bone and scan it to see what damage there is. They choose general anesthetic because children tend to riggle. I was so nervous. She was very brave. She wasn't keen on the injection for the anesthetic, but the doctor was great and with a little help from the gas she went under.

It took about 20 minutes and within 10 minutes of coming out - Annabel was eating 2 pieces of toast. The progress was as expected - more detereation of the bone.

Check up in 6 weeks.

Stop limping Annabel!

I have to write this diary retrospectively as I should really have started from the beginning. But as I am quite a disorganised person I start today. You see I wanted to write about my family's experience with Perthes Disease, as I couldn't find any information about it at the time of diagnosis This diary may give an insight into treatments and coping with a child with Perthes.

Sept 2007 - Stop limping!

My daughter Annabel was a normal 6 year old little girl. We had had a great summer (it did rain a lot though), been away on holiday, down the beach and out for long walks. You see in September, I had noticed she had developed a limp. This had gone on for one or two weeks and had got to the point of me saying "stop doing that"! I did at times think she was putting it on - doing it for attention. As it went on, I thought that it was too long for just "putting it on" and it had consistantly been one leg (difficult for a little girl to do ALL the time!).

So a trip to the doctors was arranged, thinking perhaps it was growing pains. The doctor took it seriously. She thought it was something called 'Irritable Hip', sending us straight to hospital for an x-ray. Oops mum was wrong - and started to worry!

After a long wait we finally had some x-rays done and waited for the results. The orthopaedic specialist said that he couldn't see anything, here was some Calpol and off you go. If the limp continued, to go back to the GP (doctor).

October 25th 2007 - the bombshell
An appointment had been made at the fracture clinic, where more x-rays were taken. We waited. Can I just say at this point that be careful with the x-rays, remind them to use a plate in front to protect their ovaries etc.

So the doctor looked at the x-ray. "I can see what it is straight away". OK I thought. "Annabel has Perthes Disease", he said. He was so pleased with his diagnosis, he called another specialist in to take a look - all while my jaw dropped to the floor in shock. He did pipe up though saying "at least it's not cancer". Great, I thought - I really wanted to hear that. The x-ray had shown that the top of her femur (the ball) was slightly flattened (i'd say a couple of millimetres).

All I can say is that I don't remember getting to my car. He had not given me any advice or information about the condition, but simply wrote it down on a piece of paper and to look it up on the internet! This is why I'm writing this to hopefully give advice, support, piece of mind, and an insight into how our experience has been.

NOTE: Yes do look on the internet for information, but don't get bogged down with it, as the way it is treated in the UK varies and is a LOT different to the USA.