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Epilepsy & gastroenteritis

1 reply

Cherryann · 08/12/2024 09:37

Hi, my younger son (17) has generalised tonic clonic epilepsy. It is well controlled by medication he takes twice daily. No seizures for almost a year now.
All of the rest of the family have noravirus with vomiting & diarrhoea. He hasn’t got it yet but I fear it could strike any time. Obviously this has implications in terms of his medication- the last time he missed a dose it triggered a severe seizure within 12 hours so I don’t want to risk this again. (That was the last seizure he had in fact.)
We had to resort to a private neurologist to diagnose epilepsy & prescribe - after he was left waiting on the NHS paediatric list for months while having seizures- so there is no readily available NHS expert to advise. (The way he was let down by NHS is a whole different story.)
If he does get ill I will ask his GP for advice but it would take hours to get even an emergency call back from GP so I don’t think that will help much- if he’s missed a dose, it will be too late.
Has anyone with medical/pharma/epilepsy knowledge got any recommendations?
My understanding is the medication needs to stay down for an hour- is that right ?
If he is literally vomiting every 15 minutes & no hope of anything staying down, should I take him to A&E to see if they can give something (an injection?) to stop vomiting, so he can take his medication ?
He has a couple of doses of clobazam that were prescribed by the neurologist for long distance travel in summer as an add on (due to risk of crossing time zones, dehydration, sleeplessness etc)- might it be worth his taking one of them as well as the normal meds, if he get ill?
Thanks for any advice.

OP posts:
Peanutssuck · 14/12/2024 16:39

I've been searching this board for epilepsy related posts. I'm sorry that you're having such a hard time with the NHS. My DD has tonic clonic seizures and I was told to ring an ambulance every time. If your DS can't keep anything down and has a seizure, call 999. Or ask your consultant for Buccal Midazolam syringes. I personally wouldn't give the Clobazam as its a valium sedative

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