We are continuing to make good progress, and X-rays show that the operation has been a success. The femoral ‘head’ has now got a chance to grow without being mis-shapen by the socket.Thomas's Mum
Thomas (aged 7) had started limping. He complained his knee was hurting, I assume he has pulled a muscle during karate and do nothing.
I go to see my G.P. for myself and mention Thomas’s limping. She says she needs to see him as soon as possible. I wonder why and she explains that sometimes pain in the knee can be deferred from the hip. She had only seen two cases before but she knew she was looking for Perthes Disease. I took Thomas to see her and we were booked in to Russells Hall Hospital for an X-ray the following day. Three days later we returned for the results. She confirmed her suspicions and that Thomas indeed had Perthes. She didn’t have much further information, other than to refrain from any sporting activities and pointed us in the direction of the internet. I found most websites to be American and information varied wildly.
Two weeks have gone by and we are awaiting our appointment at The Children’s Hospital, Birmingham. Thomas is getting worse and is in pain most of the time. He is having children’s Paracetamol on a regular basis. Our G.P. advised us to let him rest, easier said than done in a lively 7 year old! A friend lends us a wheelchair so that we can still go out and do things without Thomas being in too much pain or getting too tired. School refuse to let Thomas use the wheelchair in school and he has to manage or stay at home on bad days. I start chasing the Children’s Hospital for an appointment. They offer July but after explaining the problems we were having they manage to get us an appointment in Mr O’Hara’s Clinic.
We arrive at the Outpatient Clinic at the Children’s Hospital to find total chaos. There are loads of people waiting and lots of fractures. We eventually get to see a Registrar who sends us for X-rays. On our return calm has been restored in Outpatients and we go straight back in to see the Registrar. After referring to Mr O’Hara he decides to set us on a course of physiotherapy to see if we can improve Thomas’s mobility. He also tells us to go swimming as often as possible.
Thomas has started crying at night and asking “Why me?” I try to explain but he’s only 7; he tries hard to understand. We start physiotherapy appointments at The Children’s Hospital fortnightly and we have exercises to do three times a day which is hard to fit in and Thomas is sometimes reluctant to do them as it sometimes hurts too much.
We have another clinic appointment (not so chaotic now we know what to expect!). X-rays confirm that things are improving. We continue with physiotherapy and book a review appointment for three months time.
We return for another clinic appointment. We go to X-ray and then wait and wait. My heart sinks when I realise we are waiting to see Mr O’Hara himself (this to me suggested that things were more serious this time, not that I didn’t want to meet him!). We eventually get called in. Mr O’Hara explains that Thomas’s hip has deteriorated and it is now time for more drastic action. He decides to try ‘broomstick plaster’ (where both legs are put in plaster and a bar is put across at the knees or ankles) and wants to have Thomas in next week. I explain that we are going to Florida in two weeks and he agrees to postpone it until we return.
After returning from a fantastic holiday where Thomas used the wheelchair a lot, we arrive at hospital at midday for the dreaded plaster to go on. I do wonder how we are going to manage to get home later but I had to take a ‘cross-that-bridge-when-we-come-to-it’ attitude! I am relieved to find a sympathetic anaesthetist, who understands my concerns (I have a severe allergy to Suxamethonium, a drug used in general anaesthetic, an allergy I didn’t know I had until I had an emergency caesarean and ended up in intensive care after a cardiac arrest). She agrees to test Thomas and my younger son James for my allergy and assures us she will not use Suxamethonium to put Thomas to sleep.
Thomas goes to theatre and we decide to grab something to eat. On our return John O’Hara is waiting to tell us he has explored the hip with dye, and decided not to put it in plaster but to operate (a triple pelvic osteotomy) instead. He tells us to go home, have a good Christmas and we will see him the New Year.
Another chaotic appointment in clinic, and we meet two boys who had both had the operation seven weeks earlier. One is walking almost normally and says how fantastic the hospital is; the other has had both hips operated on and is making good progress. Our operation date is set for 9th February.
ensions are running high. Thomas cannot sleep and cries; he ends up sleeping with us.
We have to leave for the hospital at 6.30am; we arrive at 8am. Our allocated nurse on Ward 5 makes us feel really welcome. She explains what’s going to happen and when, a pity this doesn’t happen when you’re an adult patient! The operation time is 2pm and at 1.30pm I see Mr O’Hara approaching but he’s in his suit not his scrubs. My heart sinks. He has come to tell us we have been cancelled due to an emergency. We go home feeling deflated.
We’re up and out again for 6.30am. Let’s hope it goes ahead this time. This time we’re a bit laid back and when the theatre team come to collect Thomas he hasn’t got his gown on (he’s more interested in the Playstation!). He’s given his pre-med and still tries to carry on co-ordinating the Playstation controls. We prise them off him as he goes to sleep. (His test results for my allergy have come back negative so I am far les anxious about him having an anaesthetic). He’s in theatre for two hours, so we try to go and have some dinner, though I’m not hungry.
He comes back from theatre awake, sleepy but all done. I stayed in hospital with him all four days (there are pull-out beds for parents, shower facilities, coffee facilities and a very good restaurant downstairs). Thomas has a permanent epidural in to start with to ease the pain. He also has regular Paracetamol, Ibuprofen and Codeine. Two days after the operation he manages to stand up out of bed with the help of two physiotherapists and a Zimmer frame. The following day he manages to move into the chair (a much better position for playing the Playstation! Later that day he manages to shuffle to the bathroom using his Zimmer.
Day four and the staff decide we are ready to go home, though Thomas is not up to stairs yet, so he has to sleep on the sofa-bed downstairs and use the camping toilet. A friend suggested using an old conditioner bottle as a urinal. This proved to be a most useful tip as the neck of the bottle was wide enough for aiming and the bottle smelt nice! This advice is no good of course for girls!!
Thomas makes good progress while at home and by the end of another four days he can get upstairs and manage to use his own bed. Another tip someone we met in hospital gave us was to buy boxer shorts, as pants fall just in the crease where one scar is. He also has a scar on his bum. We also found it useful to use basketball trousers, the sort that press-stud up each side. They were easier to get on in the earlier days.
We start regular weekly physio sessions at The Children’s Hospital and have a follow up appointment for six weeks to see Mr O’Hara.
We are continuing to make good progress, and X-rays show that the operation has been a success. The femoral ‘head’ has now got a chance to grow without being mis-shapen by the socket. We continue with our physio on a weekly basis.
We have an appointment with Mr O’Hara and he declares the operation a complete success. We have reduced the amount of physio and he tells Thomas to go and enjoy his summer and live dangerously! (Much to my horror!)
Thomas is now fit enough to discontinue physio and has full mobility without pain. I feel a sense of relief, that we are over the worst.
Thomas complains of some pain in his left side and I start to worry he may be starting again. He also has some ‘growing pains’ in his right side.
We have another appointment with Mr O’Hara. The X-rays show Thomas’s left side is fine and his right is just ‘growing pains’ but Mr O’Hara decides that the metal plates need to come out as soon as possible and he puts us on the waiting list for the Royal Orthopaedic Hospital.
If I have any advice from our experience I would say you need lots of patience. It’s a long rocky road where no two days are the same. Get as much support from friends and family as possible. Talk to as many people as possible about similar experiences. It helps. It’s amazing how many people have come across Perthes. Some people I spoke to had brothers, dads and uncles that had it. Treatment is very different now to what it was 30 years ago. I would like to thank John O’Hara and his team for their brilliant care and also to my G.P. for diagnosing the problem so quickly.
Finally if anyone would like to contact us to ask questions or share experiences, you can contact us by e-mail Julie or Thomas @troon6.fsnet.co.uk.