help and advice for children with epilepsy

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Jonathansmummy
Jonathansmummy Online Community Member Posts: 5 Listener
edited June 2019 in Families and carers
Hi all

my little man as just been diagnosis with epilepsy but also as learning difficulties and concerns with ADHD and autistic features so just wanted some help and advice and to make new friends 

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  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services
    edited August 2024

    Hi

    @Jonathansmummy

    Welcome to the community.  You should find lots of people to talk to on here.  Everybody is very friendly.

    Feel free to ask any questions.  What kind of advice are you looking for?  Have you had much information from your son's paediatrician or have you just been told to wait for the next appointment and are now not sure what to do? 

    Take care,
    Doris

  • Jonathansmummy
    Jonathansmummy Online Community Member Posts: 5 Listener
    At the moment we are on medication increasing every two weeks he is only 5 and is having memory loss
    we have just had a brain scan yesterday 
    we have had no information from paediatrician he told me to join groups  
  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services
    edited August 2024

    @Jonathansmummy

    Sorry to hear that.  Unfortunately that seems to be how it goes.  Once a diagnosis is received you are left in a bit of a black hole until you receive more appointments.  Have you looked up any web sites for information on your son's diagnosis' and concerns?  

    The above site is a good source of information including other sites to look at with relation to ADHD and you can also search for Autism.

       This site will give you information on the epilepsy.  With regards to the medication your son is receiving, often it is changed a lot until they find the correct medication/dosage to suit each individual.  This can be hard for both you and your son but once they get it right, quite often the seizures are manged well so try not to worry too much at this stage.

    Hope the above helps,
    Doris
    https://youngminds.org.uk/find-help/for-parents/parents-guide-to-support-a-z/parents-guide-to-support-adhd/ https://www.epilepsy.org.uk/

  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Jonathansmummy and a very warm welcome to the community! Well you've come to the right place! How old is your son?

    We have the parent and carer board that you are in right now. We also have boards on learning difficulties and neurological conditions. Is there anything particular that we can help with today? :)
  • Jonathansmummy
    Jonathansmummy Online Community Member Posts: 5 Listener
    Jonathan is 5 

  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    edited August 2024

    Aw that's lovely! I hope the medication can help to reduce seizures and the links @Doris_Scope

    has provided will be really useful. Is he in school yet?

  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services
    edited August 2024

    @Jonathansmummy

    If you are looking for more personal support, we run a service called Navigate that you can apply for.  I am one of the parent advisors for the service and we provide 6 weeks of 1:1 phone and email support to support you emotionally and hopefully guide you in the direction that you want to go.

    You can either ring us directly to apply on 0808 801 0510 or apply via email at navigate@scope.org.uk  apply through the online form here 

    I hope we can help you in some way.

    Take care,
    https://www.scope.org.uk/family-services/navigate/

  • Jonathansmummy
    Jonathansmummy Online Community Member Posts: 5 Listener
    chole 
    yes he started in September but he does not have a EHCP plan or help in school 
    I could do with some help to get a EHCP plan 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Jonathansmummy, that's definitely something we can help with :) I will tag @melaniethorley who may be able to provide some advice on this. I also have found this article which may help. I know it is possible for the school to apply, but if they are not willing to do this then it is something you can do independently :)
  • Adrian_Scope
    Adrian_Scope Posts: 11,754 Online Community Programme Lead
    edited June 2019
    Hello @Jonathansmummy and welcome to the community! Just to add to the other advice, have you spoken to the school SENCO at all? They should be able to help with the EHCP or at least put in some extra support for your son. 
    You may already have seen it but IPSEA is a great resource and has lots of information on EHCPs too. 
  • Jonathansmummy
    Jonathansmummy Online Community Member Posts: 5 Listener
    Hi Adrian
    I am just going around in circles it feels as I am on a merry-go-round and cant get off, 

  • Adrian_Scope
    Adrian_Scope Posts: 11,754 Online Community Programme Lead
    Hi @Jonathansmummy, I'm very sorry you feel that way, but I think it's very common, so please don't feel as if you're alone in that.
    It's horrible having to fight so hard to get the support you need, but we'll help point you in the right direction anyway that we can.

    Are you getting any support for yourself? Obviously you've got a lot going on and it's probably taking its toll on you.

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