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Epilepsy advice please

2 replies

Lalonde2019 · 31/08/2019 20:30

Hi All,
My 8 year old son has recently been diagnosed with Benign Rolandic Epilepsy after 2 tonic-clonic seizures at night. After the second one on Sunday he’s been having problems with his eyes. He’s an avid reader but says he’s struggling to read as the words seem jumbled up and aren’t making sense like they did before. He’s rubbing his eyes all the time and saying they feel sore and that his memory isn’t so good, as well as saying he just doesn’t feel 100%. We saw his consultant the day after his seizure who wants to put him on meds (that’s another massive dilemma right there as the seizures were 8 months apart so we’ve no idea what to do - scary side effects but not sure we can cope with waiting or any more potential damage). We mentioned to the consultant his eyes but we didn’t know at that time that it was affecting his reading so it was brushed over.
Has anyone else’s childbeen affected by vision problems post-seizure? My heart is breaking for my son - he was doing great at school before but is now worried he’ll struggle when he goes back next week.
Any advice, positive words would be so appreciated. Also any advice on Epilem and Keppra would again be welcome.
D x

OP posts:
Lalonde19 · 02/09/2019 20:00

Bump - would appreciate any advice x

Iesugrist · 02/09/2019 21:46

It sounds like you'll get the most appropriate advice via the medical team who have seen your son. Do you have access to a specialist nurse for epilepsy? They can be invaluable for these sorts of questions and feed enquiries to consultants if needed. It's usual to have the most questions and worries at the beginning when everything is new and uncertain , and stressful for children and families.

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