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Hi, my name is Lisa

Tabbycat46Tabbycat46 Member Posts: 2 Listener
Good Evening Everyone 
This is my 1st time on here and the reason I have joined the group is because today I have been told My beautiful grandson has PVL
The emotions that you go through is overwhelming and I won’t lie I am probably thinking the worse.
We have to wait to find out how bad he is or how it will effect him.
I am trying to find out all I can or what we may have to face, what help is out there. I’m sorry if this is all mumble jumble and thank you for taking the time to read this

Replies

  • Ami2301Ami2301 Member Posts: 7,447 Disability Gamechanger
    Hi @Tabbycat46 welcome to the community!

    I am so sorry to hear this. We do have some information regarding PVL here. Please don't hesitate to come back to us if you need any further assistance or if you just need someone to talk to :)
    Disability Gamechanger - 2019
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    edited October 2018
    Hello
    I saw this on scope hope it helps x
    Periventricular leukomalacia (PVL)

    What is periventricular leukomalacia (PVL)?

    Periventricular leukomalacia (PVL) is damage and softening of the white matter within the brain near the cerebral ventricles.

    • Periventricular means around or near ventricles
    • Leuko means white
    • Malacia means softening

    The ventricles within the brain are C-shaped spaces which produce cerebral spinal fluid (CSF). PVL is characterised by damage to the white matter (brain tissue consisting of myelinated axons (nerves) surrounding the ventricles.

    How does PVL relate to cerebral palsy?

    Like any damage to brain tissue, the exact location and depth of impairment will depend on how and where the body is affected. The areas around the ventricles near the basal ganglia and cerebellum contain nerves affecting movement. Babies with PVL may therefore have a greater risk of developing cerebral palsy.

    What causes PVL?

    It's hard to say. This area of the brain can be very susceptible to damage especially in premature or low birth weight babies where the tissue is very fragile. Possible causes can be lack of oxygen, ischemia (decreased blood flow), infection or rupturing of the uterus. Also hypotension (low blood pressure) resulting from foetal distress or caesarean birth can lead to decreased blood and oxygen supply to the developing brain and damage to the blood brain barrier which provides nutrients to the brain.

    How is PVL diagnosed? 

    As PVL may lead to a diagnosis of cerebral palsy, this may not be apparent until the child is older. The most common symptom is spastic diplegia (tight muscles in both limbs), contracted legs or difficulties in positioning when sleeping or feeding.

    Severe PVL may be associated with quadriplegia. Children with PVL may have seizures. A study in Israel of 541 patients showed that 18.7% of those experienced seizures.

    Seizures are more common in those born prematurely and with low birth weight. Infants with PVL often can't maintain a steady gaze or co-ordinate eye movements. They may have spontaneous rapid eye movements (nystagmus) or a squint (strabismus).

    Your medical practitioner may conduct a cranial ultrasound or MRI scan to detect any injury to brain tissue. The prognosis of patients with PVL depends on the severity and extent of white matter damage.

    What treatments are available for PVL?

    Currently there are no specific treatments for PVL. Treatments such as physiotherapy can ease specific effects.

    PVL and cerebral palsy

    Infants with severe PVL may be more likely to receive a diagnosis of cerebral palsy as the severity of PVL is shown to be linked to major neurodevelopmental impairments. Another outcome of PVL can be epilepsy but this may be linked more to mild or moderate PVL or to genetic and early environmental factors.

    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi Lisa (@Tabbycat46), and a warm welcome to the community!

    Thanks for sharing this with us, and I'm so sorry to hear about what you're doing through as a family. I really hope it helps to be among others who understand and can empathise with what you're going through. You may be particularly interested in our parents and carers discussions. I'm also tagging in @tei and @MattCundill83 who have discussed PVL on the community in the past.

    Please do keep us updated and let us know if we can be of any assistance.
  • Tabbycat46Tabbycat46 Member Posts: 2 Listener
    Hello
    I saw this on scope hope it helps x
    Periventricular leukomalacia (PVL)

    What is periventricular leukomalacia (PVL)?

    Periventricular leukomalacia (PVL) is damage and softening of the white matter within the brain near the cerebral ventricles.

    • Periventricular means around or near ventricles
    • Leuko means white
    • Malacia means softening

    The ventricles within the brain are C-shaped spaces which produce cerebral spinal fluid (CSF). PVL is characterised by damage to the white matter (brain tissue consisting of myelinated axons (nerves) surrounding the ventricles.

    How does PVL relate to cerebral palsy?

    Like any damage to brain tissue, the exact location and depth of impairment will depend on how and where the body is affected. The areas around the ventricles near the basal ganglia and cerebellum contain nerves affecting movement. Babies with PVL may therefore have a greater risk of developing cerebral palsy.

    What causes PVL?

    It's hard to say. This area of the brain can be very susceptible to damage especially in premature or low birth weight babies where the tissue is very fragile. Possible causes can be lack of oxygen, ischemia (decreased blood flow), infection or rupturing of the uterus. Also hypotension (low blood pressure) resulting from foetal distress or caesarean birth can lead to decreased blood and oxygen supply to the developing brain and damage to the blood brain barrier which provides nutrients to the brain.

    How is PVL diagnosed? 

    As PVL may lead to a diagnosis of cerebral palsy, this may not be apparent until the child is older. The most common symptom is spastic diplegia (tight muscles in both limbs), contracted legs or difficulties in positioning when sleeping or feeding.

    Severe PVL may be associated with quadriplegia. Children with PVL may have seizures. A study in Israel of 541 patients showed that 18.7% of those experienced seizures.

    Seizures are more common in those born prematurely and with low birth weight. Infants with PVL often can't maintain a steady gaze or co-ordinate eye movements. They may have spontaneous rapid eye movements (nystagmus) or a squint (strabismus).

    Your medical practitioner may conduct a cranial ultrasound or MRI scan to detect any injury to brain tissue. The prognosis of patients with PVL depends on the severity and extent of white matter damage.

    What treatments are available for PVL?

    Currently there are no specific treatments for PVL. Treatments such as physiotherapy can ease specific effects.

    PVL and cerebral palsy

    Infants with severe PVL may be more likely to receive a diagnosis of cerebral palsy as the severity of PVL is shown to be linked to major neurodevelopmental impairments. Another outcome of PVL can be epilepsy but this may be linked more to mild or moderate PVL or to genetic and early environmental factors.

    Thank you for this it’s very helpful x
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