Jack's seizures ar a nightmare just now, waiting on consultant calling back, falling to pieces....

[proudestmummyever]

Hey all, ust as the thread title says am afraid, waiting on consultant calling bk, he will probably end up in hospital AGAIN, just soo depresses, had enough, just broken

Hi pme - I hope Jack is doing better. I really hope they can get to the bottom of it. He's so gogeous.
Riven - you metioned your DD has like a startle reflex when on her back. Have these been ruled out as being seizures? DD goes through phases of doing this that may last a week or two. When you put her on her back she flings out her limbs and then gets very distressed and looks terrified. We were never able to work out if they were seizures - neuro was doubtful (she also has absences and drop seizures)

Thanks Riven - DD also has cp as well as a genetic disorder. It's impossible to know where one starts and the other ends. Interesting to hear your DD does this too though - I hadn't come across it before

Thanku every1!!

I tend to think Jack is gorgeous too, but then I am his mummy ...fio fio Jack has had a diagnosis of severe epilepsy, but they just wanna monitor him again as he seems to just do it mostly, at certain times, nappy chnage, after bath etc, mostly when lying down...he has a genetic disorder too and has damage to left and right temporal lobes in brain and hypotonia and hypermobility, also global dev delay, all due to this disorder, so he can't walk etc, won't for a while....hard not to get worried, although if consultant thinks maybe a chance it is a provoked epilepsy and may outgrow it then I am clinging to that with everything I have got , no one seems to bloody know, he was diagnosed with IS then into myoclonic epilepsy...but scaremongering ourselves isn't the answer either...SJisonthe way, yr dd has a genetic disorder too? What does hers involve if you don't mind me asking...wht type epilepsy does she have?

BUMP

Thanks fio fio, it is hard, sounds like you have had it tough too...I agree, we do need to just think "we will cross that bridge if we come to it" more, instead of always thinkin "...oh but what if...?" I agree

Sorry pme - just saw this now. DD was diagnosed soon after birth with hemiplegia - she has a brain injury on the lhs of her brain which happened some time in late pregnancy. We put all her delays down to this but she was further behind than her neuro would have expected so at 16 months she tested positive for angelmans syndrome also. Most kids with angelmans syndrome deveop epilepsy. Her sizures started just before christmas. So far she has absences and drop seizures and some myoclonic jerks. We're still tweaking her medication but she's not too bad at the moment

Hi SJisontheway, so sorry to hear about yr dd, well I am afraid I am resorting to drastic measures tomorrow, Jack has had 5 bad seizures today, the min he does it tomorrow then I am calling an ambulance...if tht is way to get him bloody seen quicker then so be it, sick of pussyfooting around...his seizures are outta control,
and his meds need changed nw, so hopefully we wont have to stay over at hospital tmrw night and can see consultant tomorrow as he is the only 1 knws Jack inside out and can change meds, were talking about changing one of his three meds to keppra...I have had such a feckn shit day....

xxxx

www.youtube.com/watch?v=ZLeQs2Ox7-A What type of seizure is this do u think? Pls look

Oh bless. I'm sorry, I've no insight - my son has ASD and although the paed is practically "willing" epilepsy onto him , always going on about the risk as his father had a childhood epilepsy thing I've little experience of epilepsy. I just wanted to echo that your son is beautiful and it must be so hard watching him go through that. Good luck with the consultant, I hope this is sorted very soon.

oh so sorry i would do that get him in even if its tonight! when i first started watching i thought drop attacks like chloe does, but not sure when i kept watching. if you after take him to an other hospital you poor darling having to watch him go through this (((hugs))

Ah the poor little man. Best of luck tomorrow. I don't know about the seizures - hopefully somone who knows more will be along. They do remind me of DDs drop seizures but she's never had them so close together. There would normally be at least a minute between them. I hope you get to see the consultant soon

SJisontheway yes thats what i though chloes is about 5 to 10 mins apart and usally about 4 then stop

oh proudestmum that broke my heart just watching and hearing your worried voice, you must be so so worried. Have to do hun and don't worry about threading on toes.

that should read do waht you have to do

I'm sorry, I know little about epilepsy but really hope you can get some help tomorrow. Take care and will be thinking of you both.

Thanku every1, yr kind messages mean soo much to me........it is absolutely heartbreaking, it kills me....and I have just had enough. I heard tht bout drop attacks, thts what I thought they were, but didnt want to say, wanted to see if every1 else thought the same...and I have heard the same things, that no one has really saw drop attacks so close together...so I am worried

take him in make them listen, show the pic you showed us. (((hugs))) i hope you get amswers soon

Yeah I will do, cant wait til tuesday no way, it is not fair....... but scared he gets kept in, hate the place, really hope he gets seen tomorrow, and we can go home, I also have my DD,7 to think of....

Thanku, Jack bn ok so far, and I can barely move for period pain, so god knows wat'll happen, he seems fine just nw, but if not later then we will be straight to hospital

Good luck for today. Period pains are a bitch

Hey sc13, well Jack still ok, so far so good, be great if he was to be like ths til tues til his "actual appointment"...

But yeah period pain is awful, came off pill 3 mnths ago to try for #3 and the pain is unbearable, was never THIS bad before, think I have endometriosis, my mum had it and ended up with a full hysterectomy, and I have exact symptoms, last night I couldn't even turn around in bed it was that bad...so dunno hw I am gonna cntrol pain if trying for baby, notice hw everything seems to go wrong at the same time in life

are you taking any painkillers? nurofen is usually good for period pain. I get it awful too and heavy. I once had a massive 'leakage' session on a mumsnet meet up once oh the shame!