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New PVL dignosis

My Grandaughter was born at 30 weeks and yesterday at 35 weeks was diagnosed with PVL. The family is of course devastated, especially my daughter and her husband. They are in the early grieving stage, ...

Profile picture of the author Discussion in Start here and say hello! - 7 Jul 2018

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20 month old diagnosed with PVL and diplegic CP. Any other experiences out there?

HI ALL I'm new to the group. We have a wonderful daughter who is 20 months old and has recently been diagnosed with PVL and diplegic CP. She was born at 35 weeks and was a tricky labour with failed ...

Profile picture of the author Discussion in Children, parents, and families - 29 Mar 2019

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Hi, I have pvl and want to speak to others with it

I have pvl and and in my early 20s I find it annoying that I can't find people my age who also have this sure there are groups for people with cp but that's still different true lvl can cause cp or ...

Profile picture of the author Discussion in Disability rights and campaigning - 3 Dec 2017

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Baby Daughter with PVL

Hi, my 6 month old Daughter was born 9 weeks premature, at birth she was diagnosed with PVL in her brain. Since then she has had a rough start... severe reflux, milk protein allergies, seizures... We ...

Profile picture of the author Discussion in Children, parents, and families - 27 Mar 2017

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Diagnosis of PVL at age 3 years and 10 month. Is my son at risk of having seizures?

Hello, My son was just diagnosed with PVL at almost 4 years of age. HE is not the usual child but has never had epilepsy or any tension in his muscles. He has a different behaviour o other children ...

Profile picture of the author Discussion in Children, parents, and families - 19 Apr 2021

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Is PVL a disability or will it lead to one?

My son was diagnosed with severe PVL on both sides of the brain mainly left side and was told his gross and motor skills will be affected as well as learning difficulties later on in life. My main ...

Profile picture of the author Discussion in Children, parents, and families - 5 Sep 2015

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My 5 yr old just diagnosed with PVL and CP

Following an MRI my 5 year old daughter has just been given a diagnosis of PVL&CP so I am now looking to find as much ingormation as possible xxx

Profile picture of the author Discussion in Cerebral palsy - 9 Mar 2018

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PVL

Hi. My son has just been diagnosed with PVL. I have been told that PVL could be classed as cerebral palsy, so have assumed this is the case. Have I made the right assumption?!? Thanks!

Profile picture of the author Discussion in Children, parents, and families - 25 Jan 2015

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PVL - helpful therapies and approaches? Advice please...

Hi all, I'm new around here and I have a nephew (15 months) who has recently been diagnosed with PVL and some genetic abnormalities. He is globally delayed and under a paeds neurologist and a physio ...

Profile picture of the author Discussion in Children, parents, and families - 29 Apr 2021

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Does your child have PVL and Spastic Quadriplegic? Would like some support please

Hello, I'm new in this site. I have a child 6 weeks earlier delivered and he will be 1 year old this 29th of December. The MRI showed that he has bilateral extensive white matter loss damage PVL ...

Profile picture of the author Discussion in Children, parents, and families - 18 Dec 2018

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