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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 who sees him weekly. 

My family and I are trying to search the internet for more information about PVL and associated problems to see if there are other approaches or methods that would be helpful to support him in the best way we can. There seem to be a lot of "private" therapies that are targeted at children with these kinds of problems (i.e. the Footsteps programme, the Feldenkrais method, Snowdrop), but we are quite wary of pursuing anything that's not evidence based. Having said that, we are willing to try anything that might add even a small improvement to his quality of life and wondered if there are ny parents out there who have children with PVL or CP or global delays?

What would you recommend to us? Were there things that really worked for your child? What would you say to us now at the start of this journey?

We'd even just like to have someone to chat to about their experiences.

Really...any support or advice would be so appreciated. 

Thanks all,
V

Replies

  • buckleyvbuckleyv Member Posts: 1 Listener
    edited April 29
    Hi all,

    My name is Vanessa and I've joined the community as my nephew was recently diagnosed with periventricular leukomalacia (PVL) as well as some genetic abnormalities. My family are looking for support and to meet other families in a similar situation. Although my nephew is under several neurologists and physiotherapists etc. we are looking for more ways to best support his needs and find any additional therapies or approaches that others have found useful. If you are in a similar situation, I'd love to say hi!
  • Ross_ScopeRoss_Scope Posts: 3,223

    Scope community team

    Hello @buckleyv and welcome to the community, how are you? 

    This is a very supportive and welcoming community so I'm sure you will find comfort being here. 

    I have never personally heard of periventricular leukomalacia (PVL) but I hope your nephew is getting as much support as he needs from health professionals. Is there anything in particular he is struggling with at the minute?
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  • Tori_ScopeTori_Scope Posts: 4,033

    Scope community team

    Hi @buckleyv :) Welcome to the community.

    One of our other members posted about PVL recently, so perhaps you two could connect? @junicposs
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  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @buckleyv
    So good to meet you and welcome. We have some information about PVL and cerebral palsy that might be helpful to you. Anecdotally, I have heard that both the Bobath method and the Anat Baniel method can be helpful for children diagnosed with PVL and or cerebral palsy. I would suggest talking about these options with your neurological paediatrician.
    Scope
    Specialist Information Officer - Cerebral Palsy

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