Hereditary Spastic Paraplegia and splints

Naomi_Jane92
Naomi_Jane92 Online Community Member Posts: 9 Listener
edited February 2018 in Families and carers
Am just wondering if there is anyone on this group who's child has been diagnosed with hsp. My little boy was diagnosed about a year ago and in this time he's gone from trying to walk , to not wanting to walk at all. He hates his splints and every day is a struggle trying to get him to wear them , he's only 2 year 5 month , has anyone got any advise on how to try and keep them on him , he Crys and says they hurt him.

Thanks Naomi 

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Hi @Naomi_Jane92, and welcome to the community! I hope we can help you: just to clarify, is HSP Henoch-Schonlein purposa? 
  • Naomi_Jane92
    Naomi_Jane92 Online Community Member Posts: 9 Listener
    Hereditary spastic paraplegia and thank you
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    edited February 2018
    Ahh, thank you for clarifying @Naomi_Jane92. I'll share this around and feedback any responses- there may be community members who can help you out too! 
  • Naomi_Jane92
    Naomi_Jane92 Online Community Member Posts: 9 Listener
    Thank you appreciate it 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @Naomi_Jane92

    We have a childrens book called Celine's new splints that is a story that helps parents explain to children about wearing leg splints and helps young children feel better about them. Order a free book now.

    We also have some downloadable colouring sheets here.

    This might help your child understand a little more about the splints? Have you thought about a reward chart?

    Do you see a Health Visitor? Perhaps they can give you some support?
  • Naomi_Jane92
    Naomi_Jane92 Online Community Member Posts: 9 Listener
    Thank you sam , I have ordered some books , hopefully these will help , thanks again 

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