Epilepsy Support & Advice needed - copious cups of tea at the ready!

[JustKeepSwimming]

Hi, I'm new to the SN boards but i know lots of you have seen/posted on my DS's EEG thread.

Attempt at brief history:

DS2 (16mo) 'normal' apart from sleeping lots from about 10months.
At 15months he had 2 'fits' in 2 days & 2 trips to a&e.
Then started 'nodding'/absences.

Had an EEG - abnormal result.
Had an MRI - bright spot seen.
Started on Epilim, at a quarter dose to build up slowly.

GOSH appt this week - very kind and helpful doc gave us lots of info, not sure we've processed it all yet.
An area about the size of a slice of a medium size tomato that did not develop in the womb.
Will not get bigger or go away.
Rest of brain should grow around it and take over whatever might have come from there.
His development is right on track and should continue.
He will not 'grow out' of it.
We can speed up the Epilim doses and get to the full dose next week.
Then give it 2/3 weeks. If no control, she wants us to change to Keppra.
If no control then she wants to discuss surgery.
(is prepared to discuss the keto diet first as she is a specialist in it & i am very interested in it)

DS2 seems to be getting worse recently, had another seizure this morning (only 30secs so not v bad), is certainly more tired, has big clusters of absences, is grumpy (previously never a grumpy baby) and so on.

His big seizures we were calling TCs but the doc doesn't think they are - looking at a leaflet from the hosp, think we could maybe call them Tonics. not really sure how to refer to them.

(sorry not brief at all!)

Anyway, all happened incredibly quickly, DH and I still in disbelief & shock. Though, we are trying to be positive and say, if we get control (with either drug) then we will just carry on as normal, thinking of it as something similar to diabetes/asthma. Doc was v insistent on not using it as an excuse not to do something.

Any tips, advice, support welcome.

thanks for reading this far!

Hi Fatzak - meant to come on and update but no enthusiasm.

Days 2 & 3 of steroids were (visible) seizure-free

Days 4, 5, 6 & 7 - lots of nods & lots of sleep

Spoke to consultant today, she said she will phone again thurs/fri to give the steroids more time. there is a poss of a higher dose, maybe.

Nothing's working. Need surgery. Need to find a realistic outlook for post-surgery.

Wine helps....you?

Things not so good here, alas. DD1 went status on Saturday and DH refused to let her go to hospital. .

It's not quite as clear-cut as it sounds - seizures quite subtle so it's debatable when she is "in" and when she is "out". Plus being in hospital is a complete 'mare - no suitable beds, they bung us in high - dependency which is just constant noise and lights and bustle - can't cope with her diet, etc. etc. Only worth going in if you think there's a real chance of a breakthrough as the conditions just wreck her sleep and give her more seizures. Her consultant wasn't duty this weekend so they'd effectively just keep her in for monitoring till Monday and we can do that at home, thanks. Meanwhile, slight improvement and not sure where to go from here. She's not right, and the general trend is downhill. But it's not an emergency.

Hope a dose increase helps, JustbeBuffy. I've every faith in surgery, but it must be more stressful if you don't feel you have other options.

Thinking of you both.

Hope you are both feeling ok

As Riven once summed it up perfectly "Bloody bastard epilepsy" (think it was Riven - apologies to Riven if it wasn't you)

Thanks FB & Fatzak

r3dh3d - so complicated and sad when you guys know better than the on-call-over-the-weekend-doc.
Like my adjusted name though, might change to that, sounds somehow more positive....

Well spoke to the clinical nurse today and tried to clear up a few things.

• blood tests (for genetic screening) not back yet.
• H does NOT have IS as he does NOT have Hyps.
• he does present as having IS though.
• he is 'complicated' & 'unusual' (oh goody)

• i had wondered having looked at various egs of eegs whether we could define him as being in 'electrical status' but she says no. Although he does experience 'ongoing abnormal activity'.

• we will give the steroids another few days, maybe more, as they may have a cumulative affect...

Think that's it for today.
Oh H had his BP checked at the docs, all fine. we have to collect a urine sample and take it in....

Every day there is some medical 'contact' i'm finding it all quite wearing at the mo.
Hey ho, nearly wine time

Fatzak yes, I think that was a Riven quote. I've adapted it to fucking, twatting epilepsy which suits my potty mouth a bit better.
R3 how are things? It's hard, I'm just getting to the end of the 'rush to hospital for everything' stage. I'm realising that I get my time wasted, and the only reassurance I get is the fact that I know what my child needs - and then proceed to tell the doctors what to do. And as for the weekend, there is just no point.
I do hope things are on the up now.
JKS our DS had exactly the same just as the IS burnt out - he presented physically a having IS (still does sometimes) yet there were no hypps. Neuro could never rule it out tho as his 'normal' EEG is such a mess and always stressed that he could be having atypical IS Comfy on that fence there, Doc?
There did follow a time for DS, where there was widespread and constant epileptic activity (non-convulsive status) but you would never have known. He was more awake, alert and engaged than ever and had a big leap forward, developmentally. In fact, all his really good leaps have coincided with really shit EEGs.
Tripping back and for to the hospital is very wearing, I sympathise.

Hope things are better for everyone soon x

testing....

FB - thanks. not sure whether H ever had IS really. He didn't have hyps at the first eeg in May, and still didn't at the Gosh eeg.
the CNS was clear today that he is complicated & unusual. great.

i tend not to use twatting much but will go for fucking sodding epilepsy if that's ok?!

I do think that there is something along the lines of electrical status that's going on. i don't (currently) have the words/jargon to describe it but i found an image of an example EEG (which is calmer than H's) that said it was status. it would explain lots of stuff to me if someone said that's what he's experiencing.
(trying to upload it to my profile but i've been messing around with my name so it may not work)

Hoping for a day tomorrow with no phone calls/letters/etc. from any docs/nurses/any health profs in any form.....

Have put example eeg on profile ( i think)

H's is worse than that....

PET scan & EEG done at St Thomas' today.

As DH puts it, so much has happened in the last month and a half but things are actually the same as they were months ago!

Meeting new HV tomorrow & Social Worker on Thurs.

Then waiting for Monday & next GOSH appt & meeting with surgeon. Plus a repeat EEG with them.

Couldn't see any of the screen today so no clue if things have calmed down or not.

How is everyone else doing?

Hi there JBB.

Not so good here - hence posting at 05:02, no sleep so far tonight, seizure pretty much every hour and (annoyingly) I'm not good at going to sleep between. Ended up in hospital after all on Saturday - once we've given Diazepam we have to go in, really, and this time we had to give Diazepam, it was a bit of a grim one.

Hope meeting goes well on Monday. We have an "emergency clinic" with consultant Friday - he's hideously overworked and I guess because so many kids with E have some febrile component, the caseload has shot up recently and he's fitting (ha ha) stuff in here and there. I'm not sure whether DD1 will wait till Friday, though. Hold on little bear, hold on...

Hi there r3dh3d, sorry to hear it's really not going well for you & DD right now

Hope you can get to Fri & the consultant can do something...

At least H normally sleeps well at night (he sometimes wakes and headbutts the cot, then screams, but will resettle with cuddles).

Bastard fecking epilepsy. 11 seizures at school today. School too sodding incompetent to write down the durations despite being asked REPEATEDLY. So can't tell whether they all ran into one big episode and thus constituted status or not.

Friday looking like a looooong way away at the moment.

Well that's just crap r3dh3d!

bastard epilepsy indeed.

Oh r3
Thinking of you and DD xx

Meh. Just had to haul a seizing 5yo out of the bath. Am wet. Avoided being punched in the eye or anything though so suppose am ahead of the game.

well, clothes can be changed, bruises take more work....

Sounds like you are having a tough time at the mo r3 - good luck for Friday. Are there plans to change DD meds?

We've had a shaky week with DS since introducing the Lamotrigine and reducing the tegretol. He was really really defiant and naughty over the weekend which we haven't seen since he was on Keppra, then school said he was "weird" on Monday. Over breakfast on Tues he had a huge seizure - worse I've seen in ages, blue lips etc. Kept him off yesterday and he seems to have perked up today. Think it's a combination of new drugs, a slight cold and end of half term exhaustion.

R3 - how did yesterday go? any success/change/progress???

Fatzak - that sounds like a v scary sz, hope you are recovered. and he hasn't had anymore?
interesting about the build-up though.
we are def noticing some pre-cluster signs with H;
he gets 'bothered' by his left hand (the docs did say that his left side could feel funny, poss like pins & needles) and either stares at it intently or shoves is his mouth like he's trying to eat it.

2 big clusters yesterday.
the steroids have done a Big Fat Zero - not even the negative side-effects, no effects at all. hey ho, back at Gosh on Monday...

Well, we are back from GOSH. not incredibly eventful, tbh.

We met the surgeon - nice chap but mostly told us stuff we already know.
He said 'before Christmas' for Op - this almost made us cry in front of him, we are holding out for a November date as that was mentioned before (although Nov is before Christmas i suppose...)

We have a plan for coming off Steroids, then off Vigabatrin.

In the meantime we are re-introducing Epilim, as the combo of Keppra & E is the only think that had an impact, way back in May.

(trying to be philosophical about this but FGS I suggested it way back in the summer (July?) and it was dismissed (by other docs, not the Prof who we love! but i am so angry, well i would be if i had the energy. esp if H 'comes back' to us like he did before on the combo, all this time wasted....)

EEG the same - 'chaotic'

PET scan results not got to Gosh yet.

Genetic results not back yet (could take 2 months! we were originally told 2 weeks?!?)

I had a look at his Gosh MRI, v clear abnormal stuff in every shot.
Also looked at EEG, def the same, every line going nuts.

Trying to find something good to say about today and failing.
Cried in front of Prof - was feeling somehow better for not having done that before, don't like being the weepy wailing woman

the only thing keeping us even remotely sane right now is the thought that surgery is SOON

so, how is everyone else doing???

The weeping, wailing woman is necessary for your sanity, you know!
I don't like her much either, but, let's be honest, you really have had a SHIT couple of months - you should be very proud of yourself for dealing with it all with such positivity.

Hopefully switching back to the 'good' drug combination will help the little fella till the next big decisions are made.

You are allowed a break from being strong. Think of it as gathering your energies to jump the next hurdle.

We are OK here. DS being very active today. Am trying to settle him down for an early night. He's normally up till about 11 but as he is getting more active, he is needing his sleep more and more. He wakes often during the night anyway, so he really isn't sleeping enough and is starting to sleep in, in the mornings.

Still can't bring myself to let him out of my sight put him to bed, even with an epilepsy alarm and a ridiculously sensitive baby monitor

How are things with everyone else?

My weeping wailing woman will no doubt be at DS' parents' evening on Wednesday. That'll be fun in front of all the other parents

Slightly better here than last week but DS very prone to some completely irrational outbursts which we are sure is due to either reducing tegretol or introducing lamotrigine.

Oh mine too. Its DSs second MDT meeting on Wednesday (cue frantic phonecalls from sepcialists who haven't seen him in months to ask me how he's doing - er, that's your job ) . Lots more focus on what he can't do.

But I will make myself feel better by demanding lots and cutting away a bit of the dead wood

FB - i can totally understand you wanting to keep him close by, i hope you can get him to sleep a little earlier in the evenings though, then you could find yourself getting an 'evening' back!
How did the meeting go? (what is MDT?)

Fatzak - how went the parents evening???

Nothing changing here, well steroids stepping down slowly, Epilim reintroduced (low level so far). feel like coming off the steroids is progress, while it really isn't, amazing how the mind can kid itself!

starting i think to realise that H is actually quite bad, and that's hard to accept

but nanny is helping, PIL back from their long holiday so will hopefully be here more, and hopefully not long till surgery....

Sorry, think everyone calls them different things MDT - multi disciplinary team. Basically a get together of all his healthcare peeps to discuss the last 6 months and plan the next 6 months.

It went very well today - except for the boy filling a very stinky nappy in quite a small room

Getting rid of the steroids is a step forward - they had no effect so you are bringing back something which did have an effect.