Hi, I'm syeda123! My 2 yr old daughter was diagnosed with CP. Can I get a 2nd opinion? What to do? — Scope | Disability forum
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Hi, I'm syeda123! My 2 yr old daughter was diagnosed with CP. Can I get a 2nd opinion? What to do?

syeda123
syeda123 Member Posts: 8 Listener
edited June 2021 in Cerebral palsy
My 2 year old daughter has been diagnosed with CP. Everything else is fine with regards to speech etc.
she had delayed gross motor development and is unable to walk or stand. They say she has muscle stiffness in her legs and low tone and scissor steps when holding my hands and trying to take steps.
After and MRI they say she has a tiny scar on white matter of the brain. I really coudlnt see the scar and question how true this finding is.
Especially as through the pandemic I have seen neglect and feel my daughter was discharged so quickly after they did mri and gave the "diagnosis". They said "our job was to do the mri" .They mentioned something about finding a chemical imbalance  and said they will not investage further as there diagnosis fits better with her symptoms.
My gut is telling me something and they dont want to dig deeper, just very keen to discharge.
Im lost as what my next steps are to help my daughter, im just so in shock and been left to just get on with it. does anyone know if i can get second opinions anywhere and if she does have CP what do i do?

Comments

  • janer1967
    janer1967 Member Posts: 16,428 Disability Gamechanger
    Hu and welcome 

    Sorry to hear about your daughter 

    I will tag in our scope cp adviser who will be better person to advise @Richard_Scope can you offer any advice 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    edited June 2021
    Hi @syeda123 - & welcome to this friendly & supportive community. Thank you for telling us about your little girl. I'm sorry you feel that due to the pandemic your daughter was discharged quickly. <moderator removed - medical advice not permitted on the community>

    Has your daughter been referred for any physiotherapy? This can help with CP. I will also ask our CP Specialist Officer @Richard_Scope to come & chat to you, & he will be able to help with any queries you may have.
  • syeda123
    syeda123 Member Posts: 8 Listener
  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    edited June 2021
    Hello @syeda123 and a warm welcome from me too.

    This sounds like a challenging time for you and your family, and I'm sorry to hear that the hospital's communication has left you feeling uncertain.  Although my knowledge of CP is limited, I can really empathise with that feeling of something 'being off'.

    I'll leave you in the wise hands of our resident CP information specialist @Richard_Scope

    Just to let you know (and to avoid confusion), I've amended the title of your thread and moved it to our Cerebral Palsy category.  This will help others in a similar position find your thread, and browsing the category might also help you relate to some of our other members' stories.  

    Sending all the best to you and your little daughter.  Take care and best wishes.
    Online Community Co-ordinator

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  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @syeda123
    It's good to meet you. As you probably know cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). 

    You are well within your rights to request a second opinion and your paediatrician and G.P. should help to facilitate that. We also have a great service called Navigate that offer emotional and practical support to parents.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • syeda123
    syeda123 Member Posts: 8 Listener
    Thank you @Richard_Scope and @Cher_Scope. I think i do need the emotional and practical support. @Richard_Scope, do you know Of any hyrotherapy sessions i can take her to in my local area. East London. 
    Thank you once again. 
  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @syeda123
                             How are you? Welcome to the community and thank you for joining us. I can see that you have had many responses from members of the community and I do hope the advice you have received is of use. Please know the community is here to support you and please do ask any questions you may have and we will do our best to answer. We are a friendly and supportive community. Thank you.

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