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help and advice for children with epilepsy
Jonathansmummy
Member Posts: 5 Listener
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
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
Replies
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,
Beverley
Parent Advisor
Navigate
we have just had a brain scan yesterday
we have had no information from paediatrician he told me to join groups
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?
https://youngminds.org.uk/find-help/for-parents/parents-guide-to-support-a-z/parents-guide-to-support-adhd/
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.
https://www.epilepsy.org.uk/ 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,
Beverley
Parent Advisor
Navigate
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?
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 [email protected] apply through the online form here https://www.scope.org.uk/family-services/navigate/
I hope we can help you in some way.
Take care,
Beverley
Parent Advisor
Navigate
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
Scope community team
You may already have seen it but IPSEA is a great resource and has lots of information on EHCPs too.
Scope
I am just going around in circles it feels as I am on a merry-go-round and cant get off,
Scope community team
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.
Scope