My daughter has panayiotopoulos syndrome. Looking to connect with other parents — Scope | Disability forum
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My daughter has panayiotopoulos syndrome. Looking to connect with other parents

Francesca629
Francesca629 Member Posts: 1 Listener
My daughter is 10 years old.  She was diagnosed with panayiotopoulos syndrome when she was 6 years old. 
She doesn’t fit the entire description of PS but does have similar symptoms. 
We just got home from the hospital after having a terrible seizure last night. 
Was hoping to connect with parents to bring hope to this situation. 
I have her sleeping next to me because I’m too scared to have her on her own. 

Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    Hi @Francesca629 - & welcome to the community. I hope both you & your daughter are feeling that bit better now, & that you've managed to get some rest.
    I've had a look at past posts, as I vaguely remembered your daughter's disorder being mentioned. It was nearly 2 years ago, but you might like to have a look at it: https://forum.scope.org.uk/discussion/comment/285208#Comment_285208
    Unfortunately the poster hasn't been active in the community for a long time, but we have a lot of parents here, so hope you'll keep chatting to us all. My best wishes. :)
  • Tori_Scope
    Tori_Scope Posts: 6,620

    Scope community team

    Welcome to the community @Francesca629 :) Thanks for joining, it's great to have you with us!

    I'm sorry to hear that your daughter had to go to hospital due to a seizure she had. I'm sure that must have been scary for you both. How's she feeling this afternoon? 

    Are you both getting a good level of support from her medical team?

    I've moved your post into our children, parents, and families category so that you can hopefully connect with other parents who might have had similar experiences.

    I also want to point you towards our family services, in particular our Parents Connect service, which you might like to look into. This could help you to connect with other parents who can understand how you might be feeling.
    Online Community Coordinator, she/her

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