Fecking bastard epilepsy

[roundthebend4]

I hate it with a vengence ds was only confirmed with it few months ago after suspected abscencez which moved on to seizures

Were now in Addembrooks as ds kept going into status despite infusion there now telling me that there will likely be some long term damage due to length of them 25 minutes upwards had 4 of them in local hospital then transfered ds out . with the last one here being 45 mintues before they decided to ventilate

Just so unfair how can it go from small short seizures to this

Have just found this thread RTB as we have been on holiday and just got back.

You have lots of very un MN ((hugs)) from me too. Having spent the best part of Jan to May this year in and out of hospital with DS and his epilepsy, I know what an awful situation you are in. Like your DS, mine was having pretty small seizures to start with, but it soon went totally out of control and he ended up in non convulsive status for weeks on end.

I really believe that DS became toxic to the high doses of the numerous meds that he was on and that they were only making it worse. We are fortunate that we got a place to start the ketogenic diet and things are bloody amazing since he's been on that! He still has a small jerk most mornings over breakfast and occasionally one after school if he is tired but he's not had a tonic clonic for 6 weeks now nor an absence since the end of the first week of the diet I'm just beginning to believe that it might work but also very scared that it all might go so suddenly so wrong again.

Hope that they can get your DS stable - if there's any chance you can get on the diet then I would so so recommend it.

Oi fatzak you are supposed to keep me up date on your DS and the keto - not that I'm around much these days.

But sooooooooo pleased it is going so well for him - you had such a torrid time earlier on this year, it is wonderful to hear things are going so well

RTB - how are things today? keeping an eye out for you on SK too - I do hope things are getting better xx

Riven no we dont have a disablity sW , we was refered when moved here by community paed but were still waiting for one to be assigned

Ds is sort of awake still running infusion but is now breathing for himself will hopefully move over to HDU later today
there going to try getting another EEg done later today as well

Total chaos will try getting on Fb later signal plays funny with my phone ,

Mind as ds gets more with it gets harder as cant leave him as he will get distressed and try to follow me plus no speech etc means all falls on me

Sorry feelingbetter

rtb - hope that things are better for you. Good news that he is breathing for himself x

we mad eit to Hdu and ds is doing ok sleeping a lot and the odd jerk but nothing major , were going for another increas on the drugs today

And a friend turned up last night did not expect him but he drove all the way just to make sure I ate and to hold my hand

Thank goodness for good friends.

I hope things keep improving for you.

I must have missed this, RTB4, I am so sorry Sounds like you are in good hands. DD1 has E, and is currently well-controlled on Valproate and Lamotrigine, after a worrying foray into ethosuximide which gave her an allergic reaction. I dread her developing more seizures, and know we get off lightly with some absences and previous drops.

were on normal ward , so yay can us einternet than feck for phones and looks like were be home in time to go to camp

Ds is lot more stable and only the odd few jerks though he is still pretty out of it

Glad to hear things are improving

How are things today?

ty for asking ds had abtter day yesterday and got all excited about butlins advert first time shown any intrest in anything so i ended up booking it last night

Hi just sending you my thoughts. My DS has epilepsy too and we were given the epistatus very early on. I carry it everywhere. Have you tried changing his meds?

Just wanted to say BLOODY EPILEPSY. I hate it too.