Fit/seizure in 3.8 DS. Any advice please.

[sarahhal]

Woke up at 2.30am to hear noise from DS room - went in to find him having a fit. Eyes wide open and really jolting. Really panicked and tried to wake him up - he then stopped fitting and went so limp we thought he'd lost consciousness. Couldn't wake him, ended up calling ambulance who took him to A & E. I stayed with DS2 but DH went with him - fortunately he came round just as they got to hospital. Drs say because it was first time they won't follow it up - they seem to think it was a nightmare type fit ( although they didn't see it) but I'm certain it was more of an epileptic type.
Am now dreading it happening again. Anyone with any experience of this - either who had a one off or developed into something more regular.

HAs he had his MMR booster recently? Only ask as know of two little boys who have collapsed/ fitted shortly after having theirs.

No, no jabs recently.

Did he have a temperature?

My son has febrile convulsions and they are exactly like this

That's the odd thing christy, he's not been unwell at all and def had no temp. I'm always the voice of doom but really have a feeling that it was an epileptic fit.

Hi Bethron, yes I'd thought about a baby monitor as I can see me being awake all night checking him.

How often does your DS have fits? Is he on medication?\

Bump please for the night lot!

Hi Sarahhal, only just seen this thread and wondered how your ds is?
My ds2 started having fits a year ago and after 6 weeks he was put on epilim/sodium valpoate and this has controlled them apart from a few absences. I know its the most frightening thing to see but someone told me it will never be as scary again and they are right. We amazingly learn to cope dont we!!
How is everything?

Well so far no more full blown seizures, but I'm now pretty certain that the "jerks" he has when he falls asleep are related. I also think he has had a couple of absences this week. We have a consultant appointment but not until end of April so he is meant to be phoning on Monday to try and get us in.

How old is your DS crazylazy? Does his epilepsy affect his day to day life? I'm so glad that you said that it's never as scary after the first one as i'm a nervous wreck waiting for it to happen. Does your DS medication cause any side effects?

Sorry, loads of questions but my gut feeling thinks this is epilepsy and I'm desperate to for info!!!

Thanks!!

I know exactly what you mean. Even when we were told it was unlikely he would have any more after the first 2 happened in one day i had a gut instinct it would happen again. It did and was a relief in a VERY strange way dispite being heartbreaking- at least you know one way or the other and can cope.
It doesnt affect anything in his everyday life so far, but is only 2.1 (it happened when he was 1 year 2 weeks), so I am in the process of finding a nursery/playgroup that is happy to take him a couple of hours a week- to be honest its ME that is more worried than them! No one has been at all negative to me.
The epilim/sodium valporate is a very safe drug and the only side effects are liver problems on some people. They gave him a blood test a few weeks after starting to check his liver was fine and it is.
Please ask away- I wish i knew about mumsnet this time last year as i didnt know where to turn for the questions i thought of at 3am and would frighten myself silly!

Thanks for your support. Had a couple of huge jerky things over breakfast which were the biggest non sleeping ones I've seen He does however have a temp and a cold so I think that is prob making it worse.

DH off work tomorrow so is going to call consulant and push for an early appointment.

Aah you poor things are really going through it . So feel for you. Yes you must push and push for early appt, make a nuisance of yourselves!! I know its a strange thing to do but after the first seizures and trying to explain them to the docs i decided to always keep my phone charged up so i could capture a few seconds of them- it was the only thing i could think of doing that would help. When the seizures started agin i grabbed my phone and got 20 secs to show them in A and E and his consultant.It helped them to diagnose it as clonic tonic (what a name eh!) and i didnt have all the qustions which when you are so distressed are so hard to answer/remember. It felt odd taping it but now i am so glad i did xxx

Oh and my ds blood sugar levels were right down after his 2nd lot, the hosp didnt say it was linked but i got a monitor from tesco to check the levels and kept a list of the results. His went down to 2 which caused a blackout, but we were in A and E luckily anyway. Just a thought, dont want to give you something else to worry about, but i always make sure he is drinking a lot now.

Yes, the consultant said to try and video him but you can guarantee your phone isn't to hand whenyou need it can't you!!

Have managed to get an early appt with consulant - he's fitting us in tomorrow at 4.00. Fingers crossed. I'm a bit scared to be honest but also relieved to be seeing him so soon.

Thats brilliant!! Sounds like you have a good un there to fit you in so soon. Will be thinking of you. Dont want to teach you to suck eggs as they say but write down absolutely everything ds has gone thro, times of day and all your questions- if you anything like me i go blank with worry, forget everything and dont take much in. Luckily dh has great memory for info. Lots of luck and keep us informed xxxx

Hi Crazydaisy. Well today went much as expected - consultant really needs video to see what William is doing!! Even on the way there he fell asleep in the car and had a "do" but the damn battery on the mobile went so couldn't record him!!!! The consultant is making us an appt for an EEG so perhaps that may show something, we'll have to wait and see! Have borrowed my parents' video camera so will be like Big Brother in here soon!

Bet the air was rich in the car went the battery went!! At least you are now 'in the system' so things can get moving. Am eeg will be good- are they going to MRI him too?