Can anyone help us by sharing experience, knowledge or putting us in touch with an epilepsy nurse service which we can access regardless of geography?
DD, 10, diagnosed and started on epilim just over three weeks ago. Started drugs, she's been on the full dose for 10 days.
Until 11 days ago she'd only ever had absence seizures but her diagnosis is 'idiopathic generalised epilepsy'.
11 days ago she had what we think is a partial or focal seizure (conscious but couldn't move or speak for around 30 seconds). She had one again, three days later. Then nothing for seven days, then yesterday she had three such seizures.
She started her full dose of epilim the day after her first partial seizure.
We're worried because she's gone from no partial/focal seizures to three in a day over a period of just 11 day.
Should we be worried or is this within expected parameters?
Has the epilim had time to work? Is it too soon to think it's not working? Or are we right to be worried?
Rang hospital and secretary sympathised that our borough does not have an epilepsy nurse as this is sort of thing they could advise on and said if things get critical take her to A&E.
We appreciate it could be the dose needs adjusting or the meds might not suit her and we understand that everyone is different and no-one has a crystal ball so no-one can say what will happen next BUT it would be really useful to know if other people have had similar experiences.
Is it possible for the epilim to cause a spike in seizures? I know correlation isn't causation but I can't help but wonder and we know next to nothing. There is only so much dr google can tell us.
Any help or info very gratefully received.
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Epilepsy: new diagnosis, on epilim, seizures getting worse, no epilepsy nurse in borough, hosp not getting back to us: HELP!
12 replies
noodlingabout · 09/02/2016 13:57
OP posts:
zzzzz ·
09/02/2016 18:10
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