Cerebral Palsy
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Can anyone give me advice?

anniemax1968anniemax1968 Member Posts: 11 Listener
edited April 2019 in Cerebral Palsy
Hi I’m new to this. I’m single mum to Alexandra (you will see her in my profile pic) who is 16 years old and has spastic diplegia cerebral palsy. She walks in a walker indoors and uses wheelchair outside. I wonder if anyone can give me some advice. She had an appointment with her neurologist a few weeks ago and she copied me in on a letter to her gp where she stated she had lumbar lordosis. This has never been discussed with me at orthopaedics. Her physiotherapist pointed it out to me when she was standing the other day a curve at base of spine worse standing than sitting. Can anyone give me advice about this she’s not due to go to orthopaedics til May and I know I’m going to be worried about her til then. She’s had so many major surgeries to her hips and knees I don’t think she could take any more. Thanks so much Anne 

Replies

  • CockneyRebelCockneyRebel Member Posts: 5,258 Disability Gamechanger
    Hi @anniemax1968 and welcome

    Sometimes it can be a little quiet here at the weekend, but I am sure some of our more knowledgeable  members will be along soon
    Be all you can be, make  every day count. Namaste
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    Hi @anniemax1968 welcome to the community! I'm sorry to hear this, it sounds like w very worrying time for you. Our specialist information officer @Richard_Scope who also has Cerebal Palsy may have some advice for you. Keep us updated and let us know if you have any further questions :)
    Community Champion
    Disability Gamechanger - 2019
  • anniemax1968anniemax1968 Member Posts: 11 Listener
    Hi thanks for your advice I have contacted him x
  • Richard_ScopeRichard_Scope Community Team Posts: 2,593 Scope community team
    Hi @anniemax1968
    Thanks for your post and it's good to meet you.
    I'm not medically trained but from what I understand Lumber Lordis is that the affects can be lessened through excercise and physiotherapy. However, this will not remove the problem completely, the only way to do that may be surgery. I would advise that you wait for the orthopaedics appointment where your daughter and youself can discuss the options available. I can completely relate to how your daughter feels about the possibility of more surgery but there may be other options.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • anniemax1968anniemax1968 Member Posts: 11 Listener
    Hi richard thanks for replying. She’s due to go back beginning of May. I’m just really worried about it and to find out after being copied into a letter is not the best way.  Due to previous surgery she has one leg one inch shorter than the other which I don’t suppose helps. Thanks for your advice anne
  • Richard_ScopeRichard_Scope Community Team Posts: 2,593 Scope community team
    No problem @anniemax1968, I can appreciate the worry that this has caused you and I agree that it was not the best way to be told either. 
    I am surprised that Lumber Lordis has not been pickup before. It very rarely just appears and takes time to develop. 

    I'm always around for a chat :smile:

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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