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My little boy has just been formally diagnosed with mild CP

EmmaHenryEmmaHenry Posts: 3Member Listener
edited January 30 in Cerebral palsy
My little boy has just been formally diagnosed with mild CP to the left hand side of his body. 

I only know children with server CP so unsure of what to expect. 

Henry is 13mths (10mths corrected) so still very young. 

Looking for people with similar experiences. 

Replies

  • Antonia_ScopeAntonia_Scope Posts: 1,334Member, Administrator Scope community team
    Hi @EmmaHenry ;

    Welcome to the community.

    Thank you or sharing your story with us. Some of our lovely members who may have similar experiences will be able to support you. 

    Please have look at our Cerebral palsy forum and our Cerebral palsy Information officer @Richard_Scope and our Parenting Advisor @KellyParentAdvisor can offer some additional support too.
  • Richard_ScopeRichard_Scope Posts: 1,278Member, Administrator Scope community team
    Thanks for your post and it's great to meet you. It sounds like your son has been diagnosed with Hemiplegic Cerebral Palsy.

    By definition, 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). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters.

    We have a really useful information section about what to ask your medical professional after receiving a diagnosis and our friends at Hemihelp have more information about Hemiplegia on their Hemihelp website

    If I can help further please, let me know :)


    Scope
    Specialist Information Officer - Cerebral Palsy
  • EmmaHenryEmmaHenry Posts: 3Member Listener
    Sorry should have provided some further information. 

    Henry was born prematurely at 27w3d. 

    3 days after he was born he had a brain bleed leaving him with a grade 4 IVH on the right hand side hence the left hand side “weakness”. Henry doesn’t have weakness but a massive preference of right hand and holds left hand closed if not encouraged to use it. Left leg seems to be only effected if excited or tired. 

    As as a result Henry has been closely scanned & monitored so we were anticipating a diagnosis of CP. 

    We have OT, PT & Portage involved. 

    Henry has just started sitting unsupported but that all at present. 

    Really would like like to connect with other parents Mummies or Daddies with similar experiences. 

    Feeling very unsure & lonely lonely at the moment. 
  • Richard_ScopeRichard_Scope Posts: 1,278Member, Administrator Scope community team
    Diagnosis is a difficult and lonely time. You are not alone with this.  You might want to post in our Parents and Carers discussion. We have lots of parents that have experienced what you are going through and will be really happy to advise you.

    Scope
    Specialist Information Officer - Cerebral Palsy
  • Sarac_ScopeSarac_Scope Posts: 18Member, Community advisor Whisperer
    Hi @EmmaHenry. my name is Sara and I am a parent adviser for the Navigate Service.  I understand how difficult a diagnosis of CP is and wanted to advise you of the new Navigate service. 
    The Navigate Service will be going live as of Monday 25th February.  We are offering parents one to one support over the telephone. We call you at a time that is convenient for you as we understand the demands of family life and of course, family life with a disabled child can be more time-consuming. 
    This service is for Parents who have a child recently diagnosed with an impairment or disability or on the pathway of diagnosis. We can offer emotional support and signposting for you the parent, a place where you can talk openly and honestly about how you feel without being judged. 

    I will return to this post on Monday and if you feel Navigate can be of support, I will post the links to the forms on Monday and the telephone numbers you may need.

    I hope that the navigate service can support you with anything that you need. 
  • Sarac_ScopeSarac_Scope Posts: 18Member, Community advisor Whisperer
    Hi @EmmaHenry ; For more information or to apply online, please visit http://www.scope.org.uk/navigate
  • carysloccarysloc Posts: 1Member Listener
    Hi @EmmaHenry my son also has left side hemi and was diagnosed at 19 months old. He was born 34 weeks and 6 days early and his head was lodged ready for birth (I naturally went into labour and was kind of neglected) and when they pulled him up and out the damage was caused. Like your little one he is very mildly affected however more affected than can be seen if that makes sense.
    At nearly 9 he still needs his food cut up, laces tied, brush teeth etc. However he can swim 600 metres and has been hand selected to do a triathlon with some Olympians present!!! He's top of the class for maths but struggles quite badly with reading and writing due to his right hand losing some motor skills too. 
    If you have any questions whatsoever get in touch with me and I'll try and help you.
    Carys x
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