So my daughter has had epilepsy for coming on 6 years, she's 11 now and is it progressively getting worse she had a big seizure at school this week we went to the GP because lately it seems like her sugars are low (she gets shaky until she's had a juice or something) do wanted bloods done the Dr asked a few questions and has said that she's most likely having seizures in her sleep (from what we have said) and how bad it is ect. We have been seeing a pediatrician since diagnosis only on and off and have seen a neurologist once but have never been explained about this, I'm really scared my daughter could die in her sleep and no one has ever explained this. Her seizures are quite few are far between so no medication as of yet but now the GP is sayin its something we should look at as she's 11 and will want to get a driver's license one day but need to be seizure free for 2 years. It's seems like there's nothing out there to help us. I am on Epilepsy QLD but there's no personal support like I said it's almost 6 years and we are learning new stuff. She is really concerned because there's no one she knows like it her age. Does any one know of any groups we could join or helpful info please.
Thank you for your time
Epilepsy
Epilepsy
Posted in:
Kids
2 Replies
My son has had epilepsy (amongst other things) and has had it since he was 4. I also worked with children who had severe, chronic unmanageable seizures of multiple types. My son has tonic clinic (grand mal) and absentee seizures.
It’s time to go back to the neurologist and is probably time for a new peadiatrician.
I’m very surprised she isn’t on medication.
Epilepsy Australia do offer counselling sessions but a neurologist should be your next stop. Go private, not public because you want to be able to go back whenever you feel the need/desire and ask the questions.
I'm surprised she is not on medication also, my son had his first and only grand moll seizure at 8 years of age and once confirmed as epilepsy he went straight onto epilim. She is at the age where its more dangerous for her as far as independence goes (swimming, riding bikes, camps, sleepovers etc) I would definitely be pushing for meds .