F**k!! Jack having bad night seizures again.....so sad

[caitlinnjacksmummy]

Hi, my 20 month old(today) is having really bad nite seizures again, usualy has one after a bath , h stares but doesn't always go into tonic clonic seizure...but last night he had 4 or 5 seizures in one night!! Had to give him diazepam and even after this he kpt wakin on n off n fitting...so sad, hate this bastard epilepsy...he has been doing so well...now sitting and trying to talk..he ha dne ths couple other nights this week too, so gonna phone paed consultant's secretary tomorrow just don't want my poor wee man to have to go into hosp again, hate the place, not been in since about march, april

awww, so sorry to hear this. Bastard epilepsy.

I am sorry C&JMum. How are you doing?

#oh no i hate seeing yours and nmc posts about the seizures starting again so sorry big huggs

Thanks...praying he doesn't do it tonight..seems we get so far n then bang..they come bk worse thn ever so pissed off

Sorry to hear, hope he is ok

Thnku, called Jack's paed consultant this morning, he has upped his lamotrogine to 4x5mg tabs from 3x 5mg tabs and if no difference in a week then he will up it another tab again..praying it works. No seizure last night tho

So he is nw on 5ml nitrazepam morn n night,
4ml epilim morn n night and his lamotrogine,nw 4 x5mg tab morn n night and chloral hydrate 4ml at night to help him sleep

Hi CJMummy. Hope the new meds work out - sorry to hear that Jack is having seizures again. Sending and good vibes.

Thanku guys xx

epilim can make some seizures worse.
Have you thought about the ketogenic diet?

Hi CJ mum! Was wondering how you were doing x

Hey..nmc, Jack has bn on epilim for ages, n plenty of other meds to try b4 ketogenic diet, consultant sed tht there are plenty more meds t try and hasnt mentioned ketogenic diet.

Hi arabica thanku am gd, stressed but good how ru?

Check out matthewsfriends.org - recent research is showing that the ketogenic diet should be tried after 2 medications have failed, as the chance of any others working is greatly reduced. Many neurologists are now saying it shouldn't be left as a last resort, but tried much earlier. It's actually not that difficult. Watching your child have seizures is far worse.

We only had a small improvement from the diet, but we're now in a much better place on less medication. Once DS1 was weaned off epilim and clobazam he improved hugely and had fewer seizures. Some kids have huge improvements, if you read the stories on matthews friends.

after about the 4th med the chances of things working go down.
he tried keppra yet? It worked for dd like magic.

No advice to offer, but glad you had a better night. Fingers crossed for another x

Thanku

Hav tried 3 meds not tried keppra, think h is 2 young, the lamotrogine is a good1

wenever its bn upped we've seen big difference

sorry to hear this c&j'smummy, hope the increase in lamotrigine helps u all.

I hope last night and tonight will be better. We're not too bad, thanks, cj mummy . DD has had a tummy bug, a UTI and now a bad cold, all in last 3 weeks, but her hearing is now normal so that's something to smile about! Respect to the grommets