Feeling crap, Ds has severe epilepsy, seizures out of control, dunno wat to do anymore :(

[caitlinnjacksmummy]

Hi everyone, feel so shit, just want to cry all the time, my ds has epilepsy, he is 13 mnths, consultant thinks severe myoclonic epilepsy, but awaiting mri results....used to be that ds would just have seizure at night or one during the day, but at moment he can take more than one, also used to be that he would just do it waking up or going to sleep, but now he can do it wenever... today he has done it at half past 12 having milk, but he was v. tired, and did it during the night, approx 2am, just feel soo low the now and just don't no wat t expect anymore, I could just open my front door and scream, feel that he has got worse since epilim was addd approx 6 weeks ago...he was already on nitrazepam, and wen first put on bitrazepam was seizure free fr 8 days, but never seen anything like that since, he is now on 4ml of nitrazepam morning n night, and 4ml of epilim morn n night too, epilim was increased tuesday to 4ml from 3ml, so fed up, also consultant told us on tuesday that his head not growing as it should be which makes him think that his brain isn't growing properly, dunno wat this could mean either, pls pls can someone reassure me, make me feel better, I am not sure how long I can go on like this............

poor you, I do not have any useful advice as my son is ASD but I do know about lack of sleep and that just makes everything so much worse. Is there any way someone can give you a break so you can go to bed, or read a magazine in Starbucks??? It's impossible to do this stuff without a break, I know that only too well. I hope someone can come on with more useful specific advice, but till then a big hug from me. Can you escape for a strong cup of tea and a fag, that always restores me to sanity?!

Haha, u made me laugh there at the end of wat u wrote....a don't smoke, n hate tea lol!! Oh well....Also have a dd, 6, so not eay, plus me n my partner don't live with each other at the mo(long story) but getting there, his mri was done last monday and i am desperate t no wat the results were, although i am petrified, wish it was monday so i could phone and ask........

You sound like a great mum - I am sorry you are doing it all alone at the mo, could partner though not come over and give you a break, or is he a useless male?

Thanks...that i so nice. He helps on HIS terms xx

hey riven thanks, yeah i sed t consultant on tues but he wanted to increase it t see if it work, he is now on 4ml sed it can b put to 5ml and then they will take him off nitrazepam and introduce another drug alongside epilim, but they seem t b spiralling out of control the now, i am crying all the time, feel so helpless, is that steroids ACTH? wat type of epilepsy does yr dd have?

That is a , u sound like yr having as much fun as me...soo hard, how often does she have seizures? Jack has status ones 2, 4 a while it was only type he was doing....and past couple days I have noticed that Jack seems t b stiffening and moving arms a lot(involuntary) and shking head without eye movement, so thinking he is having myoclonic jerks now in between his seizures which at moment majority of time are tonic clonic an he is doing these at least once a day, but myoclonic jerks quite a lot throughout day, does that sound like myoclonics do u think? Gonna phone consultants secretary tomorrow morning to see if mri results are bk, scared stiff about them....

hi caitlinn, sorry to hear it's still so difficult for you, can't offer much in terms of practical advice but I am really thinking of you.

It does sound like your ds is having myoclonic seizures, my ds2 started having them about the same time as his tonic-clonics started. The Epilim stopped his tonic-clonics but the myoclonic seizures only stopped a few weeks ago after he'd been on lamotrigine for a while (he's still not on the full dose though). I am far happier with him on the combination of Epilim and lamotrigine than I would have been just increasing the Epilim (which is what the NHS paed wanted to do). However as riven said, each drug seems to suit some children but not others.

Hope the MRI is helpful, who knows, maybe it will spur your consultant on to try something different.

Hey guys, I really am at my wits end, Jack has had 3 yesterday, the on he had going t bed he wasn't with it for ages, and then when he went into bed he did it again, and he had one in the afternoon yesterday 2. Called the consultant's secretary at 9 this morning, mri results still not back, a week in ..... and told her I am worried sick about Jack as his seizures are increasing in frequency and just happening anytime now, scared stiff, does anyoneelse's LO breathe very shallow at night time almost to the point you think they've stopped breathing? Scary, Jack does this, soo desperate to get results of mri back, surely it is a good sign , if anything serious serious was found then would they not contact my consultant more urgent?

Quick update. Wen spoke to consultants secretary this morning I sed t her tht I was worried about Jack taking more seizures, so she spoke to consultant nd he wants Jack in hospital overnight and mri resulta have been faxed through and we r going to find out results tonight wen we take Jack t hospital..I have bn crying my eyes out, so scared of wat results will be...

sorry to hear that things are difficult, waiting is always the hardest part, i hope scan news is good

i hope everything is ok caitlin, will be thinking of you x x x

Thankyou... am petrified, dunno wat t do with myself until wwe leave at 6pm....feel so depressed and down(more than usual)

Well you are bound to, its bloody hard. I suppose you just have to think of it as after tommorrow you will be being seen to and medication will be being looked at more closely and you will be in safe hands. At the moment all that pressure is on you, unluckily but at least tonight and tommorrow there will be nurses and drs and it will take the pressure of a little (awful though it is)

Can you go for a walk to try and get some fresh air? and are you packed up?
x

Hey oifoif, a have just done housework, so that is sorted, still in pyjamas, so will have to get bath...gonna feed Jack and am packed(always keep little suitcase packed cos go to hospital a lot in ambulances usually), but do need to top the suitcase up so to speak, my mum and dad have my dd,6 and a half, so tht is sorted too, just a case of waiting for 6pm to get here, so soo worried, scared at wat am gonna be told and if i am upset i can't exactly come home either, will have to be in the hospital even if i am upset.....

Hi, not a lot I can add as DD doesn't have seizures (although she has had to have several MRIs), but wanted you to know am thinking of you and hope that tonight brings some answers and some support. xx

Thanks arabica...am praying so hard right now...xxxx

Hi riven am not away yet, will b in 10 mins though, have bn crying my eyes out, feel like I will pass out at any moment because of the worry xx

Ok, I am away.....wish us luck, I need it xxxxx

thinking of you(((hugs))

Hey guys AGAIN!! Well went thru to the hospital and waited in play area for dr, and we were told after waiting an hour that we were not getting resulta til tomorrow morning!!! They wanted us t stay in t monitor Jack, but I saw no point t b honest, any other time they don't monitor really, they pretty much leave u t it, plus Jack bn ok today, so told them I was taking him home and I would phone and bring him back if Jack changd, to go bk thru for 9.30am to speak to consultant about results, so more waiting and upset, Iam so f angry, idiot xx

Nothing useful to say, other than thinking of you.. take care

How annoying. You'd think they could have contacted you by telephone to give you the choice about whether to come to hospital or not.
I hope you have a peaceful night...