Epilepsy come and tell me about it please

[roundthebend4]

Ok on top of everything else ds now been dx with it after having fits and going into status?

Been told seems be centered around the frontal lobe but hard to confirm as is damage other area

But I'm at total loss when I should call for help ,how long can he fit for before I yell or is there limit to how many fits should have before need to call ?

Was given the results and the eperlim and follow up next month under neurologist we seen for ds other issues and that was it no care plan etc

Hi rtb. Welcome to the Epilepsy rollercoaster.

Re: when to go for help - depends on the severity of the seizure. Broadly speaking, full-on chucking yourself about seizure, 5 minutes. Absence - don't worry, as long as he comes out of it himself, they're usually pretty brief anyway. Stuff inbetween - I can tell you what we do but it's based on lots of experience of DD1's particular seizures and many conversations with the experts. So it's not official guidance iyswim.

The shit REALLY hits the fan at 30 minutes. Have they given you emergency meds for home? If you don't have emergency meds you must call an ambulance in sufficient time that they will arrive within 30 mins of it starting.

thank you
No just the eperlim and they seem to have gone with the well you have follow appoinment with neurology next month anyway and you deal with ds Sn so can just get on with it

but my head is still spinning with questions ds never even had fits other than short febrile and was queary abscences yet this week he's now been having big ones and by reading other posts and from what dr has said was that he went into status at least twice and they did not stop but looking back in hindsight indications were there that he's been having abscences for some time

Well, don't take anything as I say as gospel, of course, but my dim understanding is that absences are relatively harmless. They medicate for them so that kids can eg concentrate in school, but they're not dangerous as such. So I wouldn't worry that he's been having them for ages.

Re: status. I'd phone your consultant's secretary. Explain that you have an appointment in a month but DS seems to have developed full-blown Epilepsy now which goes into status and you have been given no advice or emergency meds. Could he prescribe in the meantime? We keep a set in DD1's school bag and a set in my handbag and though we don't use them often it's a huge comfort they are there iykwim.

When I look back to our early days with DS and his epilepsy diagnosis, I can't believe that we weren't given any emergency meds either. Even when he was fitting for over 15 mins full blown tonic clonics our useless original paediatrician didn't suggest it

Agree with r3 to phone your consultant's secretary. By the way, you will soon be on first name terms with her DH speaks to Elaine more than me I think!!!

Thank you

Will give her a call Monday see if she can help I'm guessing that should be neurologist secetary tether than paed at local hospital not that ds has one there

Was only because he is under neurology for something else

Help ds had 2 fits in the night one early evening one early hrs of the morning both were around the 2 minute mark

He sems ok this morning tired and grouchy though not sure if should call someone or just keep a record of them .know they said it's likely ds meds will need tweaking but we have no appointment to May when ds has neurology and we have no local outpatiant appoinment or contact!!!

Keep a record, definitely. Time, duration, any triggers, description. They like to know "how it started" because sometimes you can get a seizure that starts off small and gets bigger and the small bit is the trigger and may give them a clue what meds work best. But realistically you're hardly ever watching the first ten seconds, are you?

Re: continuing seizures - how long has he been on the epilim now? All the E drugs have to build up in your system before they are most effective, some it's a couple of days, some weeks. And most of them you can't go straight onto the final dose, you have to build up to it. DD1 went on epilim so long ago I can't remember how long it takes to act. But continuing seizures doesn't mean it has failed - yet.

It might be worth adding this info to your call to the consultant's seccy - that you have been prescribed Epilim but not given any plan for when it should start working, or what to do/when to escalate if it doesn't work at all.

Ime, "general" paeds know very little about either neurodisability or epilepsy. They know enough to order an eeg and if the eeg says Epilepsy prescribe epilim. But that's about it. Hopefully when you finally see the neuro you'll get more sense out of him.