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

roundthe - am so sorry, didn't realise you and DS were going through such a horrible time, I remember you posting about the DX a bit ago hope he does better than they are implying re:long-term effects.

Feel like 2 differnt people one thats hurting and scared and another that wants to yell scream that its unfair he already has brain dammage now there telling me there be more

sorry things are that bad, BUT i still wear the T shirt 36 years further down the line.

hopefully the status bad time is over so that only the ;;normal;;seizures are doing little damage. garry had status nearly every other day the first three years of his life so you can imagine the damage,but they didnt have the drugs there is now adays for getting him out they were lasting 45mins to 75 mins.
he has not had status since puberty but has TCs and PCs nearly every day he also has learned how to induce seizures himself.
hes on
keppra, lamictal,clobazam,andtegretol high doses and for emergencies epistatus for ones over 5 mins long and it works within minutes.

myra

it is the shittest shittest thing.
I can handle CP and all the stuff that comes with it..
but I hate epilepsy.

but.......
dd is 15 and has (touch wood) been fit free for 3 years(so controlled)

so there is hope

Myra glad it can get better ,trouble is the rescue meds not working or the more heavy duty. Infusions hence they hAve put him right out hate seeing him so still so quiet

Plan is to keep him out to least Monday while try work out why they have suddenley become so bad

RTB nothing to say but so sorry
Hugs for you and for DS
Brio
x

Ty no change ATM though was ironic moment earlier when dr sat ne down explained that ds is likely to be disabled due to brain damage and how will I cope .told him go checks ds notes he's already disabled and has brain damage

It wouldn't take much effort to read the notes first would it?

Sorry to hear what you're going through RTB. Hope things start looking up soon.

Riven

Not even sure what next step is ds had been having suspected absvens for while but had one EEG clear.Then not to long ago he had couple full blown fits home and in hospital but short ones .this time Eeg confirmed as well ad being seen so started medication

But these have come out of the blue , he been having a few so took to A and E to be seen and been downhill from there ,they shifted us out pretty fast of local hospital when realised could not control

Ds neuro is in tomorrow but to then the on duty neuro keeping him sedated and ventilated with the hope that they might get to bottom of

Mind shocked that our local does not do EEG or have neuros etc yet it's a big hospital

To now ds has been on eperlim not even any emergency meds at home

Not at first mind was sat in waiting room one way jp the queue but yes in the longer ones his says dropped every time after that when he fitted they put o2 straight on him

worse was we got here and they could not stop it and they alerted crash team to come and could hear every word on the phone to

I'm taking break meant to be getting some breakfast but can't.

I can relate to the can't eat thing but you do need to at least have a sweet drink if you can. The last thing you want to do is keel over in there.

Try to take care of yourself too.

((((HUGS))))

sorry to hear that roundthebend, sending you ((((hugs)))) and keeping ds in our thoughts.

Oh RTB that sounds really hard on you all. Our DS was diagnosed at the end of May and we got transferred out of our local hospital too as they just couldn't cope. Once we got to an experienced consultant paediatric neurologist it was a totally different ball game. Thankfully he has been seizure free since then (on Tegretol) but epilepsy is just a horrible bugger of a thing.

We have found Epilepsy Scotland really useful in terms of support and are also really lucky to have a local epilepsy fieldwork service who are great advocates for when things get so overwhelming. Do you have some similar folk around?

Good luck - will be thinking of you and yours.

Riven

no there is only me , my mums looking after my 3 other dc.And when i moved I cut of everyone i knew delibratley so could not be found.

loflo ds luckily is already under a neuro but when we got here even he was shocked in how bad they have become in such a short time .

But on the good news there going to lower the sedation and sstart letting ds wake up though neuro has informed me , that we wont be going home anytime soon till he sure that ds is stable

I know bog all useful, but just to let you know I am reading, and concerned for you all, for what that is worth. If you get on FB, could you tell me what ward you are on, so I can pop a little card and something in the post tomorrow?

All I know about epilepsy comes from MN, so no real use, but just to let you know I'm thinking of you and your DS, (((hugs)))