Why Did you join this community? - Epilepsy Action
Why Did you join this community?
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Thank you all for your great support! From one epilepsy person to many others, stay strong, keep your head up high and don't give up hope for a CURE! We will find one in due course!
Coz we all need support at some stage
My 7 year old grandson has spent the last year or so in and out of Hospital with seizure,s Up until last year never had one before , it is now discovered he has scarring to his brain from developed in the womb He also has chiari malformation He has changed in his behavior and suffers daily in school , I feel helpless and scared for him , although BRISTOL hospital is a fantastic support and helpful place to be i feel the confidence in closer hospitals to where we live is not there
Hi Theoruby8911
It must be hard seeing your little grandson go through so much at such a young age.
If you haven’t already, please visit Epilepsy Actions website. We have lots of information that will hopefully help you and your family understand epilepsy. Also on NHS choices there is information on Chiari Malformation.
nhs.uk/conditions/chiari-ma...
Also the charity Contact a Family may having information and details of support for families of children with Chiari Malformation.
The change in your grandson’s behaviour could be related to his seizure activity, his epilepsy medicine and how he is feeling about the whole situation. We have information on this on our webpage:
epilepsy.org.uk/info?from=m...
epilepsy.org.uk/info/childr....
I hope you hear form others in the HU community. If you and your family would find it helpful to talk or contact people who understand what you are experiencing, we have our local groups and coffee & chats. Also you can always talk to one of us, Advice and Information Officers, on the Epilepsy Action Helpline (freephone) 0808 800 5050. Callers to the Helpline are guaranteed a friendly welcome and can discuss their concerns confidentially.
epilepsy.org.uk/info/suppor...
Regards
Diane Wallace
Advice and Information Team
Thank you very much for your help i will certainly look into the link you have sent and will hopfuly learn alot from them x
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