Hi, my name is Louisemac77!

Louisemac77
Louisemac77 Online Community Member Posts: 2 Listener
edited February 4 in Start here and say hello!

my son was recently diagnosed with epilepsy

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Comments

  • Bluebell21
    Bluebell21 Online Community Member, Scope Member Posts: 8,322 Championing

    Hi @Louisemac77 Welcome to the Community. I hope you enjoy your time on the forum. Any questions just ask.

    Are you receiving any support since you had your son's diagnosis? It can take some time to adjust to a new condition.

    Take care.

  • Jimm_Scope
    Jimm_Scope Posts: 5,717 Scope Online Community Specialist

    Hi @Louisemac77, welcome to the community. How are you feeling about the diagnosis can I ask? I know it can both be a relief, as you have an answer to what is happening, but also cause extra worries as you now know the possible other issues.

  • Mary_Scope
    Mary_Scope Posts: 650 Scope Online Community Children and Family Specialists

    Hi @Louisemac77 and a warm welcome to the community from me!

    A diagnosis is a lot take in and it's completely normal if you're feeling a whole range of emotions right now – worried, confused, relieved, even a bit scared!

    Are you or son getting post diagnosis support? What would you like from the community here at this time?

    We are a friendly bunch here so if you have any questions or would like further support please reach out and we will do our best to support you!

  • Holly_Scope
    Holly_Scope Posts: 1,026 Scope Online Community Coordinator

    Welcome @Louisemac77 🙂

  • Louisemac77
    Louisemac77 Online Community Member Posts: 2 Listener

    Hi guys thankyou for the warm welcome , the diagnosis seems to have set in now it’s just the constant worry and being on edge waiting for the next episode as we aren’t aware of any triggers at the moment , in terms of support I wouldn’t say there is much only when we go to appointments

  • Mary_Scope
    Mary_Scope Posts: 650 Scope Online Community Children and Family Specialists

    Hi @Louisemac77

    It's understandable that you're feeling worried and on edge. Dealing with a diagnosis and the uncertainty of what might happen next is tough. I'm wondering if you or your son keeping a seizure diary as this may help you pinpoint some triggers?

    Epilepsy Action are a good organisation to explore if you would like epilepsy specific support and they also have a dedicated parents and children section and have an upcoming parents and carers online support group next week.

    There is also Young Epilepsy who offer support for children and young adults under 25 and their families.

    Hope this was helpful, please reach out if you would like more support or have further questions😀