Just back from the hospital, ds, 11 months just been diagnosed with epilepsy. Myoclonic seizures. Wat to expect?

[caitlinnjacksmummy]

Hi, I posted a while back thinking my son , 11 months, had some sort of epilepsy, have just had it confirmed, he takes myoclonic seizures, and is to get an mri scan, bn started on medication, but was warned that the fits can change dramatically in a year, I am worried sick, can someone advise me on this please, I am lost

did you just try my IM?

don't have anything more constructive to add but just wanted to say I'm thinking of you caitlinn, also I hope they give you midazolam soon as it's such a shame for both of you to have to keep giving the rectal diazepam.

[hugs]

Hey mummy pig it is terrible having t give the rectal diazepam, I mean I don't think twice about it but, for Jack it is such a sin...xxx N yeah NMC I have added u on msn, haven't bn on for couple days tho xxx

Hey mummy pig it is terrible having t give the rectal diazepam, I mean I don't think twice about it but, for Jack it is such a sin...xxx N yeah NMC I have added u on msn, haven't bn on for couple days tho xxx

Hey, please help me with as much info as possible, have just scared myself silly by trawling the internet looking up seizure types, found one called "OHTAHARAS SYNDROME" where most children don't live past age 2, I was crying so hard reading it, and worried about ds. He has myoclonic epilepsy and has bn put on nitrazepam 4ml now, he went 8 days seizure free and this morning at 1.37am and yesterday morning at 1.00am had seizure, yesterday was mild but this morning he woke out a sleep and had really big one, starting with stiffening of body then eye rolling, which stopped and started until 2.18 am!! Had t give emergency meds diazepam rectally at 1.44am but i prob should've called an ambulance as diazepam didn't work as it usually does. Wat is the difference between myoclonic seizures and severe myoclonic seizures? I have scared myself silly as I no kids can die with severe myoclonic epilepsy, ds to get mri scan too, but there were abnormalities found on eeg results, even wen seizures were not recorded... Pls help xxx

No advice as I'm new to this (dd just started having seizures) but just to let you know I'm sending a virtual hug. I'm sure someone will be along soon with more info. Try to keep calm - I know its scary, but there are LOADS of types of seizure, try not to get worked up over one piece of info on the net xx

Hey alfiesbabe, thanku, am tryin not to, a have been crying all day, and just t top it off i have dropped my laptop and can only see half of the screen xx

Hope you can see nice positive things on the good half of the screen then

Thanku!! xx

Hi caitlinnjacks mummy, ohtahara is very very rare and usually starts at birth with multiple types of seuzre, not just myoclonics. Infantile spasms is much more likely.
But its easy to scare yourself rigid looking up stuff. I was convinced dd had several different syndromes which I wont name in case you go looking them up!
You really need an MRI, severeal EEG's, metabolic and genetic tests etc etc before you get an answer. Sounds like your neuro should get a move on rather than leave you waiting. Phone him up and, ummm, over exagerate and you might get in as an emergency.

I can turn my msn on if you want to talk. I'm [email protected] (I think)

its on and I msn'ed you....

Hey NMC I popped out yesterday and left my msn on, sorry, plus really hard t see all of the message as i broke screen on laptop yesterday and can only see half of the screen. AAARRRRRRRGGHH!! Yeah I scared myself silly yesterday, was crying all day long, I was just looking there at anothere thread and u had said that there are monitors you can get for LO's I have bn looking for one as my DS is still in bed beside me as his seizures seem t happen most of the time upon waking, and through the nite can happen too. Do you have a monitor? Where can u get them? As I am so afraid to put ds into cot but he will be a year on Sunday nd really needs to be in his own bed. xxx

dd (4 next week) still sleeps in bed with me and dh sleeps in the spare room. Thats cos of her seizures. I don't mind co-sleeping (cept when she snores )
I asked her paediatrician about seizure monitors but he says he doesn't think they are any good unless the child has clear Grand Mal seizures. He also said they go off when the child turns in bed and so can be a nuisance.
So I'm in the same boat re seizures and co-sleeping and don't really know what to do either. dd is little so its not an issue right now but it will be one day.

It is a nitemare isn't it? Wat date is yr dd's birthdy? Jack is 2 march, just gettn prepared for it. Yeah ds was put on one of those monitors in hospital and kept going off, was very annoying so I know wat you mean xxx

9 march. She was due 25 Feb. Naughty late baby.

Ha ha Yeah Jack was due 28 feb and came 2 march, but went into labour the early hours of the 1st after nidwife gave me a membrane sweep lol xx

dd was due in a leap yeasr so I was hoping she'd be born on the 29th Feb. I ate a huge curry n everything!

Haha, well here we go again... Jack had a seizure at 11.30pm last night before falling asleep, and had t give diazepam, was fairly mild but still had t give diazepam, then he has just had another at 11.30am approx, was worse than last nights had t give diazepam, both lasted approx 40 mins, I just hate thie, it is so unpredictable, the diazepam does not worK!! So have appointmant tomorrow with consultant and am telling him tht the diazepam is useless and wanthis meds looked at too, this is terrible. How long did everyone's LO's take to b controlled ? This is hell ........xx

I'm so sorry. Epilepsy control really is an ongoing thing. We had control from July to Janruary then 3 complex partials. Nothing for 4 weeks then a status epilpticus and now myoclonic jerks.
So we've raised her keppra today but I feel like crying because i'm so scared this will cause more brain damage (the epilepsy, not the keppra)
I feel very very weary after 4 year, very tearful and just wish it would all stop

Aww NMC that's a shame, u no u can talk t me. That is exactly how I feel, soo frustrated that there is nothing I can do to help him, it is a long hard road with so many hurdles to face xx

Hi, well yet another eventful night......Jack woke up yesterday 4-10pm and took seizure, 4.21pm, gave diazepam..looked to be improving, then few mins later he jus carried on seizing, so bout 15-20 mins later called an ambulance, he was taken to resus, so scary, got bk out at 9pm last night and I have bn told to call an ambulance after 10 mins in total, allowing 5 mins for diazepam to work(which it hasnt been) and call one everytime!! Jack takes one everyday most days, how can anyone live like this? I also have dd,6 and a half, still waiting on mri scan, and until then they sed this is wat I have to do, seizures are now lasting 40 mins or there abouts.......they told me last night that the consultant we are under will call me to tell me if Jack can have a 2nd dose of diazepam 5 mins aftergiven, instead of calling an ambulance or to see if he can have another drug that is put under the tongue, which I would prefer, as if only one dose of diazepsam makes Jack incredibly sleepy, on the verge of unconsciousness, and looked to be that way last night for while in ambulance and at hospital , so wat the hell is two doses gonna do to him? Hospital jus called, consultant can't call me til tues or after as he is in meetings! But they have sed if he comes in over weekend then i can get a pass so we aren't restricted to the hospital xx

Hey everyone, well hope u are all having a better time of it than I am..........just bk out hospital yesterday at 3 o clock, Mon night Jack had quite mild seizure at 6.20pm , so after 5 mins gave him diazepam, and couple mins later he was ok, then at 7.30, he started it again so had t call an ambulance, but by time the paramedic came he had stopped, so they ordered a non emergency ambulance for an hour or two time so Jack cud go to b checked out, ended up being kept in, and the next nite as consultant wanted someone t witness his seizures, so tues nite he had one at back of 6, called nurse in and after 5 mins we administered diazepam, and within aminute n a half he was out of seizure! This is xcellent compared to the 40 mins he has been going for recently, so we got out with his epilim being put from 1ml to 1.5ml plus his usual 4ml dose of nitrazepam, and this time in stead of calling 999 after 5 mins after giving diazepam I am allowed to give another dose of diazepam, if 5 mins after that then to call 999. But last night he woke up and had seizure at 12.00am, gave him diazepam after 5 mins, did help, he def improved,altho still seizing until 12.26am, then he was fine for 15 mins and then started spasms first(which usually doesn't happen first, usually eye rolloing then SOME spasms)and then eyes briefly flickering so had t give more diuazepam, scary because now he seems t b taking two fits close together and not just usual 1, why is this? And how long til he is controlled? Any1 else had epilepsy so severe and taking a long time t b controlled? xx

have they managed a dx yet? Different types of epilepsy require different drugs. If he does have one of the intractable ones then a course of ACTH may sort him out.
Epilim I found to be useless for intractable seizures.

Hey a dunno wat that means?? He has bn diagnosed with symptomatic myoclonic epilepsy. Still waiting on mri, will anything help him?