Here are some suggested organisations that offer expert advice on special needs.
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DD had her first seizure...what happens now?(5 Posts)
Hello! I need shoulders to cry on. Used to be a regular poster a few years ago, but drifted away, partly because I had to spend all my spare time studying instead of MNng.. Now I'm a newly qualified psychotherapist and DD is (possibly) a newly diagnosed epileptic. I say 'possibly' because she has only had one seizure. But children with her rare genetic syndrome seem rather prone to epilesy. We've been given emergency meds to carry at all times and an appointment with a consultant apparently within 4 weeks. I don't really want advice--just to know what it's like to live with the constant possibility of another seizure at any time...
Thanks zzzzz! I know i will get used to it...I just wish I didn't have to.
For us the first three appointments were with children's outpatients, during this she had an eeg. Following the eeg we were referred to the epilepsy clinic for longer term monitoring, this was a more specialised service but also involved development assessments alongside seizure treatment. It was both part of the hospital and the child developement centre and everything was far more linked up after this. They deal with medication other than the emergency medication, if it's needed to control seizures.
My dd also had a high chance of developing epilepsy and as a plus I found I was listened to quickly and referrals were prompt, those I know without risk in some cases spent years of watch and see or weren't listened to/ had Joined up care so in a weird way....I found it easier knowing from the outset what was likely to happen/ develop.
My dd has epilepsy and has had had seizures since birth. She's now 15 months and on 3 different anti epileptics.
She has had quite a few eegs and we now see the neurologist every 9 months which isn't enough IMO.
She is on the 100000 genomes project as all her results have come back normal.
It's horrible and you shouldn't have to get used to it but you do. We have new ones develop all the time 🙁