Diagnosis of PVL at age 3 years and 10 month. Is my son at risk of having seizures? — Scope | Disability forum
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Diagnosis of PVL at age 3 years and 10 month. Is my son at risk of having seizures?

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junicposs
junicposs Community member Posts: 2 Listener
edited April 2021 in Children, parents, and families
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 but I still don't know to what extent. 
He was born early at 33 weeks and IUGR, size of a 28 weeker and he is a twin.
Is he at risk of starting to have fits or if he didn have any by now he shouldn't?
He has a significant brain atrophy in the parieto occipal region bilaterely.

Thanks for any help


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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community @junicposs :) Thanks for joining, and sharing the news of your son's recent diagnosis. How is he doing?

    We're unable to give medical advice here, and your doctor should be best placed to try and answer these questions. Have you spoken to your paediatrician about your concerns over possible seizures? 

    The Scope website has a page on PVL that you might find useful. It says that:
    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.
    Another outcome of PVL can be epilepsy. This may be linked more to mild or moderate PVL or to genetic and early environmental factors.

    Did your son have an MRI to detect that brain atrophy? Was the doctor able to give you any sort of prognosis as a result of that?
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  • junicposs
    junicposs Community member Posts: 2 Listener
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    My son was just diagnosed with PVL following an MRI. 
    So far we have not discussed future possibilities as I was trying to refrain from going on Google.. I am waiting for an appointment with the pediatric neurologist. 

    He was in hospital for 7 months being 100 days of extremely critical condition -  that is probably when the PVL happened.
     What kind of therapies have you found useful?
    Does anyone know how neuroplasticity therapy can help?

    The diagnose came with a series of genetic exams we are doing in search of an umbrella diagnosis o all his complications.
    We are now going to have a whole gene exome but we have no prognosis as yet. 
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  • Richard_Scope
    Richard_Scope Posts: 3,650 Scope online community team
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    Hi @junicposs
    I have just commented on a post by @buckleyv and 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.
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