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My son has panayiotopoulos syndrome and autism

cgardner1970cgardner1970 Member Posts: 3 Listener
Hi my son has panayiotopoulos syndrome and autism just looking for any advice or anyone whos child has this condition, as we're feeling quite isolated at the moment 

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,736 Disability Gamechanger
    Hi @cgardner1970 and welcome to the community! I'd not heard of panayiotopoulos syndrome before so I just quickly had a look online. I've found this page on Epilepsy Action with a support helpline and email if you would like to contact them :)
    Disability Gamechanger - 2019
  • chiariedschiarieds Community Co-Production Group Posts: 9,087 Disability Gamechanger
    Hi @cgardner1970 - Welcome from me too. Like Ami I hadn't heard of this disorder either, but hope the link she's given is helpful. You are always welcome to come here & chat, as we've all got varying disorders, or an affected relative. This is a friendly & supportive place, & there's usually someone about.

  • cgardner1970cgardner1970 Member Posts: 3 Listener
    Hi thank you for the warm welcome, and the link my son had his first seizure at 11 weeks old, diagnosed at 3yrs hes now 8 going on 9 and all though his EEG matches panayiotopoulos syndrome he's not a typical case. We've been able to look after him as a family but its getting to the stage now hes older bigger, we're going to need support at school and home and at the moment no one has any answers for us and it would be great to connect with anyone who has any knowledge of this syndrome and how they cope 
  • chiariedschiarieds Community Co-Production Group Posts: 9,087 Disability Gamechanger
    As you say your son does not appear typical of this syndrome. As far as his care goes, have you looked at an Education, Health & Care Plan (EHCP) for him for the support he needs at school? At home, you can ask for an Occupational Therapist; a home visit might look at any adaptations a parent may need to better help him. Please also see this link: https://www.nhs.uk/conditions/occupational-therapy/ As you will see, your GP may also be able to refer your son for OT.
    This link from Scope may better explain in detail, if you would look through it to find info that may be relevant in your son's case. See: https://www.scope.org.uk/advice-and-support/find-support-services-before-child-diagnosed/
    Please, if you have any questions, just say, & someone with more knowledge than I may be better able to help you.


  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @cgardner1970 and a very warm welcome to the community! It sounds like things have been really difficult and unknown for you all. Just wanted to check in to see how you were doing and if there was anything else we could offer advice on.
    Scope

  • cgardner1970cgardner1970 Member Posts: 3 Listener
    Hi Chloe, thank you for your kind enquiry we're muggling along as we do, I've signed up for parent connect so I'm looking forward to learning and meeting other parents in the new year. Thank you for the offer of advice I'm sure now I've made the positive move to join your lovely community I'll be asking and learning from you all 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    No problem at all @cgardner1970! Really glad to hear you have joined parent connect and I hope you find this helpful. Please do  let us know how you get on. :)
    Scope

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