If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Having difficulties logging in or resetting your password?


Please email [email protected]

Can Spina Bifida cause your legs to be painful?

shariece1234shariece1234 Posts: 3Member Listener
Hi my daughter she is 3 has closed Spina Bifida she was born with this when she was born they done tests and seats and where happy to see her grow up untill she was 1,they felt she was doing well, last year she was complaining her legs where sore and wouldn’t walk far so I have to carry her a lot I took her to the doctors and they wasn’t concerned this year for the past 6 months she complains every day her legs hurt, I’m taking her back to the doctors tomorrow but what I would like to know could be the Spina Bifida causing her these leg pains. I feel my doctor doesn’t listen to me I feel so sorry for my daughter even after nusery she comes out and say mummy my legs are sore today so I have to carry her all the way home please can someone reply I feel so alone in all this I have wonderful family and friends support but I feel like no one is listening thankyou xx

Replies

  • Ami2301Ami2301 Posts: 5,810Community champion Disability Gamechanger
    Hi @shariece1234 welcome to the community! I'm sorry to hear what has been happening. I understand your frustration with medical professionals not listening, unfortunately, as we are not medical professionals we cannot advise or determine whether the symptoms your daughter is currently experiencing, is related to her Spina Bifidia. 

    Before you see the GP tomorrow, write down any questions you may have or any concerns. Be firm and be clear that your daughter and yourself deserve answers. Explain that you feel that you are not being listened fo. Keep us updated and let us know if we can help any further :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Chloe_ScopeChloe_Scope Posts: 5,875Administrator Scope community team
    Hi @shariece1234 and a very warm welcome to the community! I really hope the appointment goes well today, please do let us know :)
    I'm sorry your daughter is having pain in her legs, that must be hard for you to witness. We are listening and I hope you are listened to today.
    Chloe
    Online Community Officer
  • Nic123Nic123 Posts: 8Member Listener
    Yes. Go back and ask for her pain to be looked into. I have SB and was constantly referred to orthopaedics as a child. See another doc? Good luck x
  • April2018momApril2018mom Posts: 2,395Member - under moderation Disability Gamechanger
    Yes it can. My son has Spina Bifida as well. Recently I’ve been noticing he has pain in his legs. He has been telling me. You might want to see a NS or a neurosurgeon first. Good luck. Make sure that you have some answers as well. I understand your frustration with doctors.
    Be a advocate for your child. I hope you are listened to. 
  • AilsAils Posts: 1,161Community champion Disability Gamechanger
    Hi @shariece1234,
    Welcome to the Community.  I am sorry to hear about your daughter's pain.  I have Spina Bifida and do at times suffer from pain in my legs.  It isn't nice.  As people have advised you, go back to your GP and ask for this to be investigated further.  I hope that you get to the bottom of it and your daughter gets some relief.  All the best.  x
  • shariece1234shariece1234 Posts: 3Member Listener
    Thankyou everyone for your comments she had been referred to a physio so now have to wait for a appointment xx
  • Nic123Nic123 Posts: 8Member Listener
    Apparently it can really help if little ones really do the exercises, as they are still developing. Can I give you a tip to make the exercise fun, and do them with her loads (time allowing natch 😀) 
    I was always getting told off about doing mine badly/not enough, and my parents could have been more positive about it x
  • Chloe_ScopeChloe_Scope Posts: 5,875Administrator Scope community team
    That's great that she has a referral @shariece1234! I hope you aren't waiting too long for this referral and please do let us know how you get on :) 
    Chloe
    Online Community Officer
  • April2018momApril2018mom Posts: 2,395Member - under moderation Disability Gamechanger
    Did things improve OP?
  • Chloe_ScopeChloe_Scope Posts: 5,875Administrator Scope community team
    Hi @shariece1234, I hope you are doing okay today :)
    Chloe
    Online Community Officer
  • shariece1234shariece1234 Posts: 3Member Listener
    Hi everyone sorry for slow reply we haven’t had appointment through as off yet I’m going to follow it up with my doctor and see what’s going on x
  • Chloe_ScopeChloe_Scope Posts: 5,875Administrator Scope community team
    That's okay! Just glad to hear you are okay :)

    I hope you get the appointment through soon! 
    Chloe
    Online Community Officer
Sign in or join us to comment.