F***ing hell! DS had a seizure

[feelingbetter]

Longest 3 minutes of my life. I was terrified. I know some of you deal with this every day , but it was just fucking awful. Have grown used to his myoclonic jerks, accepted his infantile spasms which are under control.....now bloody this!

Another night without sleep
Feeling very sorry for myself. Sorry.
Vent over.

aww poor you, they are awful things.

oh no, hope its just a one off, are you ok?

Oh bloody ell, I would be pooing me pants. is he ok now?

Thank you. Yes he seems OK now - bit sleepy but it is waaaaayyyy past his bed time. Don't dare let him out of my sight.
It was horrible. and he was so floppy after it. and a bit dazed. Hardly moved for a bit.
Got him to hospital, where, as usual he perked up no end (after a bit of encouragement this time ).
I'm sure he misses flirting with the nurses.

Why now though? me and DP were only sayiing today how well he's been doing, then this bloody happens. No sooner do we get on top of one problem, then another one bloody starts for him. Can't he just have a break?

Feelingbetter hope that you and DS are OK...You are entitled to feel sorry for yourself you must have been terrified...My DS is 3.3 and has CP, to date he hasn't had any seizures but it's something that always plays on my mind. Sending you both a big hug x

How scary for you both. Glad he is ok now though.

Dont feel bd about feeling sorry for yourself, it must have quite a shock for you.

This must have been so scary for you. I hope you do manage to get a little sleep tonight, I know if it was me I'd be right by his side all night, and then be too wrecked to cope in the morning.. Thinking of you.

That must have been very frightening .

Hope you all are Ok! ( I think I was in shock for a week after ds had 1st seizure). Thinking of you.

oh no i hope you and ds fel better today, hope it was a one off

Oh dear, that must have been so frightening for you.

Oh poor you!

So sorry feelingbetter. DD had her first seizure at 4 and i was so scared afterwards that she slept in our room for about 2 years, I now still have a camera on her at night so that I can keep an eye on her. She is 8. Hope you are ok.

I hope you are ok, it is truly awful, deal with it lots and never gets easier to handle...but I really hope was a one off, keep yr chin up n kisses to yr ds

and hugs to you
Will be thinking about u all xxxxxx

Thanks everyone. No recurrence as yet and DS is well. Managed to get a couple of hours sleep as DP arranged to work from home today, so I am living up to my name and feeling better than yesterday.

Physio called today and was amazed at his progress considering the IS, vigabatrin and last nights palava. He is still a bit sleepy today and not too interested in food - but I've got enough milk down him to put my mind at rest and, when he is awake, he is his normal self. Now he just has to behave himself.............

Thanks again for all your kind thoughts xx

feelingbitbetter, I have only just seen this. I hope you and he recover quickly!

Thanks again.
Riven we don't know about IS. I think they are gone (blindly hopeful). He went in to hosp last weekend (can't recall if I posted or not) due to an increase in spasms. They are different spasms (I think) as he seems to be throwing his limbs outwards and backwards IYKWIM - sort of a split second collapse. We increased the vigabatrin to maximum at that point and he is back down to 1 or 2 clusters a day. None today so far. Neuro saw video of 'new' spasms and isn't entirely convinced they are IS but wants to continue treating them as so till EEG (hopefully this week) proves otherwise. Also, he is doing so well on the vig. After being a tight screaming ball on the steroids, he lost all muscle tone very quickly on the vigabatrin, but regained it very quickly too. Head is still a bit floppy, but on his tum he can lift his head and chest off the floor now, and has completely opened is hands and is touching things, so he is improving. Neuro very happy with his condition apart from last nights episode. Back from seeing her now and we are starting a very low dose of sodium valporate today and increasing in a week.
Gabe still a bit sleepy after his ordeal, but we have had great fun today with the physio and some new wrist straps with bells on, which he loves. Still hoping last night was a one off for the time being, though I know it is a sign of things to come. Good news is he seems to like his new meds - he hates vigabatrin. we give it to him 1/2ml at a time and the little devil has learned to store it in his cheeks till he's got enough to spit it back out! And with these new found hands of his, he can hit the syringe away too. Why can't everything be cherry flavoured ?

I'm not surprised he likes the sodium valproate - I looked at DD's bottle, and it has 4 E numbers and 3.6g of sugar per 5 mls!!

Did you know you can get liquid or granule instead of syrup?

Sorry to hear about your Ds Feelingbetter. Not nice to go through for anyone. Hope hes ok. x

Thank you again!
Another good day today so far, and he slept from midnight till 6! Woohoo!
Took a while for him to settle though - completely hyper from about 10.30pm till I eventually bribed him to sleep with a dummy. He hasn't wanted one for ages, but I was glad to give it to him last night. Must be all those E numbers!
Handy to know that we can get it in other forms though, thanks. At the mo I'm just happy he is taking it.

He is also hungry again so I think he is now over his ordeal.

We are off in a bit for DSs first trial at nursery [nail biting emoticon], I hope it goes OK. I've already told him that this afternoon would not be a good time for another seizure, but judging from the chuckle I got, I don't think he listened .