Daughter aged 3.5 years — Scope | Disability forum
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Daughter aged 3.5 years

Cam85
Cam85 Community member Posts: 2 Listener
Hi,
So I am new to this and haven’t really posted on any forums before but I am struggling to find the help I need.

Summer if 2018 I went in to premature labour at 26 weeks. I have had “spotting” for two days which no doctor or midwife had taken seriously and I had not been given any steroids or magnesium to help my daughter. My beautiful daughter was born at 26 weeks exactly and we spent 109 days in hospital. She had a brain bleed, PDA and needed oxygen for 1.5 years.

We had a brain scan in august last year as she can not really jump, run etc. she was diagnosed with PVL (damage to the white matter) of her brain. Her head is also very large as she has fluid around her verticals of her brain but it does not seam to affect her more than the large head size. 

To get to my point my husband and I fear that this is CP she is really struggling with toilette training he and she also has a tendency to tip toe when she walks. No one of her consultants seems to want to give her the diagnosis of CP and they all just refer to it being damage to the white matter. We are just wondering if anyone have experienced the same? Or if CP and PVL is the same? As it seems to be when we try and research it.

Any advice would be much appreciated.

thank you

Comments

  • chiarieds
    chiarieds Community member Posts: 15,884 Disability Gamechanger
    Hi @Cam85 - & welcome to the community. I haven't experienced the same, but do have a little understanding.
    PVL can be indicative of a higher risk of developing CP, but not always.....your mention of your daughter walking on her tip toes does suggest that she would benefit from seeing a paediatrician for their continued input into gaining a diagnosis, as they may not be able to give a diagnosis as yet. Your daughter may also benefit from a referral to a physiotherapist.
    I will ask @Richard_Scope for his advice as he has a great understanding of CP.
    It seems you mention your daughter also may have hydrocephalus if I'm reading you right. Has she had any treatment/surgery for this?
    Some info here about PVL on Scope's main website: https://www.scope.org.uk/advice-and-support/periventricular-leukomalacia/
  • Cam85
    Cam85 Community member Posts: 2 Listener
    Thank you for this that is really helpful. No she is not being treated yet for the water they are seeing her twice a year to monitor it. X
  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    Hi @Cam85
    Firstly, I sincerely apologise for my late response to your post.

    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. 

    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. A paediatric doctor normally makes a diagnosis 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.

    As @chiarieds has mentioned PVL can be an indicator of the potential presence of CP or similar neurological conditions and is often discussed together in the available research.

    Regular physiotherapy and conductive education, like Bobath therapy, will be of huge benefit to your daughter.

    Have you made any more progress in the diagnosis journey?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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