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Has anyone dealt with not being diagnosed for this long? My daughter is nearly 10

lou86lou86 Member Posts: 14 Courageous
Hi all
I am new to all this even though i have been dealing with all this for 6 years. 
My daughter is nearly 10 and has a physical disability but it is still undiagnosed. It has been very hard and very frustrating as i am struggling to get any help with her financially as she doesnt have a diagnosis. We have been refused DLA and a blue badge. she uses a wheelchair for when we go out as she cant walk very far.

Has anyone dealt with not being diagnosed for this long? I just don't know what to do or who to talk to about this

Replies

  • April2018momApril2018mom Posts: 2,869 Member
    Hello @lou86. Feel free to take a look around this site. If you have any other questions do not hesitate to post. What can we help you with? 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    Hi @lou86 and welcome to the community! I'm sorry things are stressful for you and I understand your frustration, as I'm sure many parents do who are or have been through something similar. If you're comfortable, would you mind telling us about the symptoms your daughter experiences? We cannot provide medical advice but hopefully we can find other members alike and work out where to go from there :) 
    Disability Gamechanger - 2019
  • lou86lou86 Member Posts: 14 Courageous
    Ami2301 said:
    Hi @lou86 and welcome to the community! I'm sorry things are stressful for you and I understand your frustration, as I'm sure many parents do who are or have been through something similar. If you're comfortable, would you mind telling us about the symptoms your daughter experiences? We cannot provide medical advice but hopefully we can find other members alike and work out where to go from there :) 
    Thank you, she cant walk properly and wears AFOs day and night. Her foot is turned inwards and on 1 side. Her other foot is starting to go the same way. She is in pain every day, especially in her feet, knees and hips. 
    She has pain in her hands and cant write properly. The school have now given her a laptop to use when they are doing writing pieces. 
    She has told me that she gets a lot of tingling in her hands and fingers. 

    We were told it might be related to myopathy but they are still unsure. 

    I just feel so alone as I don't know what sort of support groups to join as we dont know what it is and 6 years is a long time to be going for operations and procedures and not have any answers. 

    It's also starting to affect the way my daughter sees herself, she is starting to make comments like she hates herself for having this condition. I just dont know how I can comfort her as i dont know what we are dealing with. All i know is that it is a progressive problem 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    What you are feeling now, is completely normal and fully understandable. It can be a long journey fighting for the tight diagnosis, even at any age. You mention she suffers with a lot of pain, has she ever been referred to a pain specialist? 

    Bare with me, I will try and find some resources for you
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    Here are a few resources I've found for you,
    I hope some of the information provided in the links may help you. If there is anything else you need, please ask. Or if you just want someone to talk to, we are here for you :)
    Disability Gamechanger - 2019
  • lou86lou86 Member Posts: 14 Courageous
    Ami2301 said:
    Here are a few resources I've found for you,
    I hope some of the information provided in the links may help you. If there is anything else you need, please ask. Or if you just want someone to talk to, we are here for you :)
    Thank you, I will have a look at them links.

    No she hasn't been to see a pain specialist. I keep bringing it up with her consultant but all she suggests is a warm bath. This is a bit hard if she is in pain whilst at school or if we are out. We give her paracetamol and ibuprofen but they dont seem to take the pain away for long if at all
  • April2018momApril2018mom Posts: 2,869 Member
    Have you visited a pain management clinic? They should be able to offer you advice on meds and order them for you too. I found a pain management clinic very helpful when I was in my teens. 
  • lou86lou86 Member Posts: 14 Courageous
    Have you visited a pain management clinic? They should be able to offer you advice on meds and order them for you too. I found a pain management clinic very helpful when I was in my teens. 
    No I haven't, but I will be looking for one thanks for your advice. I didnt even know they had these sorts of clinics 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    Are you able to see another consultant for a second opinion? I sense your daughters current consultant is not showing much empathy to you or your daughter.
    Disability Gamechanger - 2019
  • April2018momApril2018mom Posts: 2,869 Member
    Yes Amie is right. Five months after my son was born, I took him to see a pediatric urologist. The whole appointment was a complete waste of time, he did not do any tests or answer my questions either. I left thirty minutes after we were called in and sent a email describing what had occurred to the head of the urology department that night when both kids were in bed sleeping soundly.
    Within a week, I had jotted down the name of a new urologist who we were referred to. I love his current urologist. She is so much better than the original one we saw. 
  • lou86lou86 Member Posts: 14 Courageous
    How do I go about getting a second opinion? We see the neurologist at manchester childrens hospital. I'm not sure how to get another consultant as we are seen in a specialist clinic that only happens twice per year
  • April2018momApril2018mom Posts: 2,869 Member
    lou86 said:
    How do I go about getting a second opinion? We see the neurologist at manchester childrens hospital. I'm not sure how to get another consultant as we are seen in a specialist clinic that only happens twice per year
    What is the name of the specialist you see? 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,469 Disability Gamechanger
    Were you referred to the specialist clinic @lou86? If by her GP, it's worth a try speaking to them
    Disability Gamechanger - 2019
  • April2018momApril2018mom Posts: 2,869 Member
    Speak to the head of the clinic. They can help. Let us know what happens next!
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited September 2019

    What is the name of the specialist you see? 
    Names shouldn't be mentioned here on the scope community to protect the identity of the person.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • lou86lou86 Member Posts: 14 Courageous
    Ami2301 said:
    Were you referred to the specialist clinic @lou86? If by her GP, it's worth a try speaking to them
    No, we were seeing a neuromuscular consultant and they referred us to the specialist at the childrens hospital 
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    @lou86

    Hello and a big welcome  :)

    It seems very unfair that your daughter has been refused DLA and a blue badge, because both are supposed to be about needs and not diagnoses. 

    For example, my son (now adult) attended special school and received DLA without diagnosis (later diagnosed with severe autism).

    I think you should try again for DLA, possibly with help from one of those links which @lou86 gave you. 

    I'm sorry your daughter is in pain every day. Poor lass and upsetting for you too.  <3
  • April2018momApril2018mom Posts: 2,869 Member
    Definitely see if you can reapply for DLA. We are in the process of getting the forms so we can apply for my son (almost 3) with a physical disability. Take a look at this guide on DLA for more information https://www.gov.uk/dla-disability-living-allowance-benefit
  • lou86lou86 Member Posts: 14 Courageous
    Definitely see if you can reapply for DLA. We are in the process of getting the forms so we can apply for my son (almost 3) with a physical disability. Take a look at this guide on DLA for more information https://www.gov.uk/dla-disability-living-allowance-benefit
    Thanks. I applied in January as the consultant said I should. We are now at the point of the tribunal and they said it could take a further 35-46 weeks.
    They got most of the information wrong, they said she can ride a bike and play football but I put that in the section about what she wants to do but is unable to do.
    They haven't even contacted any of the professionals I put on the original form. 
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    This is all very concerning. It's obvious that some assessors and DM's are not reading the application forms or even consultant / doctors / expert  reports. 

    This was blatant in our son's case too who went from zero / zero to 8 and 10 after mandatory reconsideration. 

    And the government  continue to employ these agencies.!!?? 
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @lou86 welcome to the community. I’m Emma, one of the Community Champions who are here to help and advise. It’s great to have you here. Please keep us posted with how you are getting on.
  • lou86lou86 Member Posts: 14 Courageous
    Hello @lou86 welcome to the community. I’m Emma, one of the Community Champions who are here to help and advise. It’s great to have you here. Please keep us posted with how you are getting on.
    Thank you. I will do.

    She is going for another operation soon so I am hoping it will be successful and we cam actually move forward a bit
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    @lou86 Best wishes for the operation. 
  • April2018momApril2018mom Posts: 2,869 Member
    Good luck for the procedure @lou86
  • paffuto10paffuto10 Member Posts: 388 Pioneering
    @lou86

    Sincerely hope that your daughters operation is successful. 

    Wishing you both strength. x
  • lou86lou86 Member Posts: 14 Courageous
    Thanks, I really appreciate the well wishes 
  • chiariedschiarieds Community Co-Production Group Posts: 8,063 Disability Gamechanger
    Hi @lou86 . I remember a charity called 'Contact a Family' who offered help for undiagnosed children. On checking them out, they are now called just 'Contact.' They have a free helpline. See: https://contact.org.uk/advice-and-support/medical-information/conditions/u/undiagnosed-children/

    As mentioned above, I would also recommend getting a 2nd opinion. I don't know if you have just been seen locally, if so I'm sure your GP will understand the need to see someone outside your area if they have a greater expertise. I'm thinking of the National Hospital for Neurology and Neurosurgery, London for example, who have Neuromuscular Specialists, as indeed do Great Ormond Street Hospital.

    With best wishes to you & your daughter (& for her surgery).




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