Cerebral Palsy
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Could my daughter have Cerebral Palsy

SystemSystem Posts: 522

Scope community team

This discussion was created from comments split from: Hi, I'm Richard - ask me questions about CP.

Replies

  • DawsonsDawsons Member Posts: 4 Listener
    Hi, Our paediatrician thinks our daughter has CP or similar and we have just applied for DLA for our 6 yr old daughter and wonder if we will be successful or not. The wait is awful. 
    We have applied as she has many different difficulties. 
    She is under the paediatrician, he said he suspected cerebral palsy or similar. She has had a CT scan of her brain, which was normal. She has also had an MRI scan brain and spine under a GA which is normal. We have a review/appt for a diagnosis in July. Not too sure if a child can have a normal MRI and still be diagnosed with CP or not? 
    Anyway we have applied for DLA and her teacher wrote a really great supporting statement which I am hoping will help. 
    Just wondered if there are any others in this situation or further down the process who can get in touch? Its a strange place to be. 
    Outlining her difficulties;
    She struggles to walk, her left side is weak and she throws her left leg when she walks. Falls very frequently, multiple times in the day, complains of pain when walking and after a day at school wakes up screaming in pain during the night as well as her usual daily pain. Over the counter pain relief seems to do little to help. 
    Throughout the day she becomes more and more exhausted and falls more, she then also loses control of her bladder and bowel. Gets sent home from school as she has soiled etc. 
    She suffers from headaches which make her worse in the clumsy sense, we have had to move her bedroom downstairs as she falls down the stairs more when she has these headaches. 
    She cannot read, write, do any school work. Her gross and fine motor skills are really bad. Cant write her own name etc. 
    She has terrible short term memory, cant remember what you tell her to do, what she has done, forgets what she is saying. 
    Cant eat properly or cut up food.
    Barely manages to use the toilet, forgets she needs the toilet. 
    Needs supervisions all day and most of the night. School have had to get her one to one support as she cannot keep up at all with any of her class. 
    She has terrible night terrors, night pains, wakes up and cant settle - spend around four hours over each night with her trying to sort her out and help. 
    Her speech is very poor, people struggle to understand her, even we do most of the time, she seems to know what she wants but cant get the words out, forgets and then gets frustrated. 
    She does not have any friends or social time as she cant physically or mentally keep up with anyone. Its really saddening. 
    We cant take her many places as she simply cannot cope with the walking and pain. 

    Just wondering if anyone else is in similar or was, what diagnosis is or could be in similar circumstances? Also am I wasting time trying to get some help for her? 

    Im certain there will be more things that I have forgotten. 

    Thankyou in advance.
  • Richard_ScopeRichard_Scope Posts: 2,736

    Scope community team

    Hi @Dawsons

    Welcome to the community. 

    Some of the things that you describe could potentially be indicators of a child having a condition such as cerebral palsy (cp) but not necessarily so. I think the important point here is that you have concerns and you sound as if you need those concerns addressing by an appropriate person. It would not be appropriate for me to speculate if your daughter has cp.

    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. 

    Here is the link to the DLA ‘how to’ pack: https://contact.org.uk/media/1172324/claiming_dla_for_children.pdf

     

    I also mention some info on the Scope website that might be of interest:

     

     

     

    Waiting for a diagnosis is a very difficult time for families. You are not wasting your time trying to get help for you and your daughter. If you need to talk further, please do get in touch.
    Scope
    Specialist Information Officer - Cerebral Palsy

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