Cerebral Palsy
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Recent Operation advice

Lewis has had an operation on the 9th July, he had both a femoral osteotomy (breaking of the hip bone and realigned to be straight) on both hips and his achilles cut and stretched so his right foot goes to 90 degrees. He is now out of the cast and has had a week back in hospital for intense physiotherapy and hydrotherapy. He has done extremely well and physio was happy enough for him to go back to school in his wheel chair and on his K-walker to use in the classroom.
I have been advised by the physio's to keep up with his excursuses when he gets home and she will go into the school. However lewis has been very stubborn and was wondering if any of your children have had the same operation and if they are too reluctant to do the exercises? Lewis has been screaming, shouting and being very rude with both the physiotherapists and the teachers whilst getting him to do the exercises in school. Then at home he cries when I try to do anything strenuous with him and just doesn't want to do anything. I know he isn't in any pain and I know it is a mental battle with him. I need advise on how to approach his behaviour with the physio's and the school as the teachers have had words with me and him over the behaviour. I don't know what to do with him and getting at my whits end as told him lots of times not to lash out or shout. What do i do? Any suggestions or ideas would be most helpful.

Replies

  • NoahNoah Member Posts: 430 Pioneering
    It's so good that he is doing so well after such a major operation. I had some pretty major surgery to try and straighten my feet between the ages of about 10 and 13. I remember being quite stubborn when it came to doing physio etc. When you understand things better as an adult you sometimes wish you had worked harder with the physios for the best possible outcome. You don't mention how old your son is. A possible idea that may help would be to try and make the physio sessions as fun and engaging as possible, maybe playing some music. I found art therapy to be quite a good outlet for some of my emotions. Remember such a big operation can be quite a trauma and stirs up lots of different emotions which I imagine he is trying to cope with.
  • SANDELS1SANDELS1 Member Posts: 5
    Thanks for your reply. He is 7. Thanks for the advise will give it a go see if he responds to that's. Thanks again.
  • NoahNoah Member Posts: 430 Pioneering
    edited September 2015
    I wish you all the very best. Music can so help a physio session, it also helps the brain make the connections to the muscles Another idea would be maybe to get him to do the stretches on you first, or both do physio stretches together, to try and move the focus slightly so it's not just on him. I have also had great success with my physio using the wii balance board and games, and also doing some dance movement therapy. Keep me posted on how you get on. Kind regards. Noah
  • nicebootsniceboots Member Posts: 196 Pioneering
    Hi, I'm 28 and had a similar surgery at 13. I had a six week stay in hospital and all in all the rehab took about two years until I was back to a similar level of mobility as before. I then went and had a motorcycle accident that put me back quite a bit!!

    I would say my love of sports and science pushed me through all the physio and rehab - and still does encourage me to keep up with physio!! I set myself targets and goals, such as getting back to swimming, then getting back to cycling/horse riding etc.... Seeing results pushed me to do more, and I was fascinated behind the science of it....
    Does Lewis like sports? maybe try and set goals to work towards, as Noah mentioned music is a good motivator too!!!
  • SANDELS1SANDELS1 Member Posts: 5
    He loves swimming and likes football. He used to ride his bike at his nans all the time. Have tried to say to him in the next few month he will be able to do it again but he keeps saying he could before he had the operation and doesn't know why he needed it.
  • NoahNoah Member Posts: 430 Pioneering
    It's great he likes swimming and ridding his bike, these activities that should help him stay active. I remember asking the same question, why did I need the surgery? It possibly wasn't until a few years after that I understood why, and how the doctors had my best interests at heart. If I hadn't have had the operations when I did, chances are I would be fully dependant on my wheel chair all the time. Deformities that we have when we are 7, become much more of an issue as we get older if they are not addressed. It was explained to me that surgeons only have a small window of opportunity to carry out certain procedures while we are still growing. I'm sure as your son gets older he will appreciate, that it was the right decision. If I was 7 again and knew what I do now I would be putting a lot more effort into my physio, and swimming, I would have my sights set on the Paralympics, and I would also want to explore how dance movement can help achieve the best possible frame and improve the communication between brain and muscles. I would want regular gait analysis sessions and I would only be happy with the very best orthotics that were available.
  • Richard_ScopeRichard_Scope Posts: 2,731

    Scope community team

    Hi SANDELS1
    I had a very similar round of surgeries in 1991. I was older than your son but i reacted to the constant physio quite badly. For me, apart from the pain and discomfort associated with the surgery and physio, i also struggled with the fact that my body was different to the one i knew and had gotten used to. Needless to say I rebelled and I wish like Noah, I'd have knuckled down with the physio. It will take time but he will thank you in the end.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • NoahNoah Member Posts: 430 Pioneering
    Very good point there speedincaesar, about struggling to adjust to your body being different after the surgery to what you had got used to. I to can relate to that well. Thanks for your very worthwhile contribution to this discussion.
  • nicebootsniceboots Member Posts: 196 Pioneering
    That's a very good point about adjusting to the change in how your body works after surgery, I must admit it's something I don't think I've ever considered. I think I was always so driven to get back on my feet, I purely focussed on that.
    Thinking about Lewis asking why he needed the surgery, have you possibly thought about asking the physio or consultant to possibly introduce him to someone that has had the same surgery that's further on in their rehab, to give him some idea of where he could be in a few months?
    When I had my major surgery at 13, I was having major doubts before the operation and was introduced to someone who had been through a similar surgery to the one I was about to be put through, and I would say that definitely helped....
    I feel I was very lucky with the teams of physio's and consultants that worked with me at that time, as they really guided me through a tough time, and matched my physio with my interests, giving me targets to work towards....
    You mentioned that Lewis likes football, one thing that kept me motivated with stretching at a similar age, was seeing footballers going through their pre match warm up stretches and seeing that they weren't that different to the ones I had to do....
    hope this helps
    chris
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