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!

Parents eve went as expected but I was very good and despite being wobbly lipped and misty eyed, I didn't cry

It's just so sad as DS's main problem is his lack of friends at school. He hasn't any real friends and the others just don't include him He had difficulties settling in last year and has unfortunately got a naughty label which just isn't the case now His teacher said he has been much more physical these last two weeks so I put that down to his new meds and hope it gets better!

Things going suspiciously well here. DD1 is now on a relatively low dose of vigabatrin (on top of all the other stuff of course and, miraculously, the seizures have stopped. Just stopped. I think we still have some subclinical activity going on in there but need to contact the paed next week to arrange that.

r3d - that sounds good....too good maybe but i hope not and i hope it continues.
(the vig did nothing to H)
Can you get an EEG done soon?

Fatzak - sad about your ds not having friends, but hopefully the longer he's not naughty the others will start to accept him?

FB - thanks for explaining & Lol at the smelly nappy

nothing changing here, weaning off the steroids still, upping the Epilim tomorrow - no effect seen yet.

just biding time until we get a date...

meanwhile i'm trying to be pro-active and get a pile of stuff together for our hosp stay, any tips? things you wish someone else had told you?

Hello all.
Haven't been here for a while, so I've just been reading a few of the latest posts, some of it last week sounded pretty harrowing, and I hope the impression I'm getting that this week's a bit better is the right one. Good news about the new meds r3d..., and hope things are still calmer with you Fatzak, and Buffy ... thinking of you preparing for the hospital. I'm tempted to suggest pack a hip flask , but no doubt you'll be more practical!

My 'good' news is consultant at GOSH informed me that DS is 'a bit of a star' and the basis of case studies he's using for teaching. Heaven only knows what that means in relation to an epilepsy patient never mind the man's only met him three times. . .

wishing you all a good night's sleep x

Lauree - lol, i think i may need something stronger than tea tbh....

Glad your DS is making himself known in epilepsy circles

Well, we have a date....16th December.
We had been led to believe that it would be much earlier than that so we are a bit .
But it's a date, so at least it will happen now.

The Plan:
16th - we go in for a fMRI (+ GA)
17th - the grids are put in (+ GA)
...
23rd - the grids are taken out & anything else taken out/disconnected

[25th - the weirdest Christmas on record }

Sometime later, come home. With a seizure-free H. Hopefully.

H develops at 'superfast' speed, catches up with himself, heads off to school, uni, work, etc...me & DH look back, peering through our bifocals wondering what all the fuss was about....

Can't post on the other place for some reason, but so glad you have a date.

I think the NHS generally moves at an entirley different speed to just about everything and everyone else. DS was referred to wheelchair services for a new buggy in September, so I phoned 2 weeks ago to nag, harrass see how it was moving along and was told he is labelled up as a 'priority 1', the most urgent. Oh, goodee I think, so how long will it be then?
Less than 4 months then another 12 weeks ish if they have to order something in.
Double

And that's the NHS priority for you (not that it compares to your situation - trivial in comparison)

Am going to ring them weekly to nag some more keep an eye on things, and if no date by end of the month, will complain to CE (again)

Otherwise, all is well (apart from nasty chest infection)

Hope everyone is doing OK x

Me again
Seems things have taken a little downturn here
DSs neuro is not entirley convinced the rufinimide is doing anything for DS given the level and intensity of his jerks at the moment. Neither are we if we are really honest - things are no worse, but not really any better.

So, we are going in for a 24 hour EEG sometime before christmas.

He was also officially diagnosed with cerebral palsy today. No surprise, we've always known, but we're still having a bit of a sulk over it.

On the plus side, me 2nd weekly call to wheelchair services has yielded an appointment. After pointing out very nicely that labelling a referral as a 'priority 1' afforded it no kind of priority at all, he magically moved up from 25th on the list to 2nd and has an assessment appointment in 3 weeks time.

So, not all bad news

Hope everyone else is ok x

Just bumping up this thread to see how everyone is doing

We are (touch wood) not too bad at the mo. Transition on to Lamotrigine going ok but concerned that DS has had either some double vision or some other type of seizure as he has been saying that everything is in 3D. He isn't phased by it at all and it seems to have gone away!

Hope everyone is ok

FB - you're allowed a sulk

Fatzak - sounds kind of cool, and so cool that he wasn't fazed!

We're ok, just wasting time/waiting for Dec 16th....

Good news though - got higher rate DLA

THough of course that's bad in a way too as it means ds2 is definitely 'disabled' IYKWIM?!

So does that mean that you will be out in time for Christmas? We haven't heard anything re our referal to GOSH yet - presume they are holding out to see if the new meds work.

Good news re the DLA - we got higher care too and it makes all the difference when DH can't work (he's self employed) if DS is off school or when we need to have time off for appointments. It will come in handy when we have to decamp to London for a fortnight

Fatzak - no we definitely won't be home for Christmas. He has the actual brain surgery on the 23rd, so hopefully we'll get out sometime around the 29th....

Hope you hear a date soon.

So how is everyone doing? we are the same, just waiting for time to pass....

~2 weeks til Gosh~

~3 weeks til brain surgery~

Sorry, I haven't read everything (7 pages is a bit much for this time of night lol). Need a rant. My 11yo DD is looked after at my local hospital by a paeds neuro who comes from addenbrookes (so many different specialists between myself and the 3 kids that I long ago stopped trying to remember their names, with epilepsy myself it's a miracle if I take the correct child to an appointment ). He only comes down every 3 months. All well and good but in the past 3 months, my DD has grown 2 1/2 inches, put on 3/4 of a stone, and her seizures have got worse because of 1) her growth means her dose of Keppra is no longer enough and 2) her hormones have kicked in, she's hit puberty with a running jump lol. Tried phoning to get told 'your appointment is in the 1st week of January, it's in the post to you, stop worrying'. GRRR!!! Just needed a rant to someone who understands!! I'd open a nice bottle of wine, but it wouldn't mix well with MY epilepsy meds

Hello Loudlass

Was thinking about you this week Justkeep - imagine you are getting a bit twitchy now - now that's probably the wrong word to use on an epilepsy thread isn't it

Hope DS is ok and that you are not too anxious - let us know how it goes. Are you on FB by the way?

Loudlass - hi and wow you have a lot on your plate. Really think they should be able to let you up the doses over the phone pre-appt rather than just wait....grr.

Fatzak - yes, ever so slightly twitchy.... i am anxious and stressed & depressed &....
was thinking this morning, what if it's all a terrible idea and doesn't work. he does get some enjoyment from life at the mo, what if he doesn't afterwards?
helpful thoughts...

I know justkeep - DH is adamant that we won't go down that route as he is so scared of something going wrong and things ending up worse Keep telling him that they do know what they are doing at GOSH and that they are not just some group of noddy doctors delving away will nilly!

JKS,(love the new name!) haven't been here on the epilepsy express for a while. I see you've got the date now. you must be worried sick.

You know I live very close to great Ormond Street hosp (London Fields about 5 miles, half an hour on the bus or 20 mins by cab.) and I would be delighted to offer you some hospitality over the time you are staying in london. come for an evening for a break, or to talk ( or to talk about something else), or for Christmas lunch.... whatever you need if I can help I'd be pleased to.

Just for some background, my ds will be 6 at christmas: his epilepsy is mild, and controlled with keppra thank goodness, but I hope I'd be able to empathise with what you're all going through.

I think you can contact me through the contact a member, otherwise, I'll post my mobile number up in case you need it.

I'll be thinking about you. Lauree x

Lauree - thanks for the offer, will see how we go. Hope we can end up with 'controlled' epilepsy one day...

So, we are in London ready for early morning admission tomorrow. MRI & other assessments tomorrow, then grids in (+CT scan) on Thurs. then we're off....sort of.

Can't wait for the evening of the 23rd when his resection will be over and we can start looking forward & looking out for positive signs.

Lots of crossed fingers please!

A huge pair of crossed fingers from me JKS

Keep us updated on how it's going - I can't remember if I managed to find you on Facebook! I have someone from this thread but not sure what their nickname is Anyone with a real name beginning with E going to jog my memory!!!

Hi all, popping in quickly just to update & say hi.

H is fine, so far. Had his grids put in this morning, and hooked up to the monitors this afternoon. Kindly performed some seizures later on

(there is a very remote possibility that if they get enough info they could bring the second op forward so we are wishing for lots of seizures....!)

He did have a slight temp this evening so bloods taken and sent off to check for infection

Surgeon popped by to say all went well.

Just the long-haul of monitoring and keeping H comfortable for now - on morphine, paracetamol & neurofen + anti-sickness too. poor thing. also knackered as he won't sleep properly so a couple of days down on naps.

Connection not great in hosp so hope i can keep you updated.

Glad to hear that things going well for H - I was hoping that you'd let us know how it was going.

Hope that the infection is not too bad. Know what you mean about wishing for plenty seizures - when DS had his video telemetry we were booked in for a week but the more they got, the earlier we could go! Thankfully we had two nights with plenty of seizures so went after then

Hope that things continue to be ok

x

JKS, Glad to hear everything is going well IYKWIM, hoping that the op can be brought forward. Fingers crossed that the temperature is not an infection. (You don't know me and so sorry for butting into your thread, but have been lurking as DD also has seizures along with various other problems)

Thinking about you, your DS and your family.

Thanks Fatzak & Mitchell

Well DS2 still not up to eating solids yet, had some ice-cream yesterday. Somehow he manages white choc buttons though!

Well we had a rubbish night, he has a chest infection and ticked enough boxes to alert possible swine flu .
Meanwhile the docs/nurses looked entertaining in their duck-beak masks

So his breathing was not what it should be, he needed to keep his oxygen mask nearby, he has a sore throat and panics when he coughs.

They requested a chest & neck x-ray about 3am, fun.

So, the annoying, pestery, interfering nurse that was on overnight (grr) who ended up causing the chest & neck xrays - which showed nothing new - he had a blurry bit from infection on a previous xray.
Then she went on fiddling about all bloody night!
DH is going to set her straight when she comes on duty later....

The surgeon came in at 8am and assured me that the swelling around his right eye & side of his neck was to be expected - no need for xrays!

Then the EEG techs did some testing this morning, and came back in the afternoon with our consultant for more tests. Mostly DS2 didn't have to do anything, just lie there and let them see what reaction (ie what moved) to each electrical pulse. so they know exactly where the 'dodgy' bit starts & ends.

The consultant came back and was v upbeat - they have loads of data, and the tests gave lots of clarity.

DH & I popped round the corner for a lovely Italian late lunch

Then DS2's breathing calmed right down, by 4pm he was off the oxygen and breathing fine-ish. still on lots of ABs, plus some morphine + paracetamol. But improving.

What he really needs right now is SLEEP he's knackered and so many hours 'down' it's untrue. All the docs are agreed that nothing non-essential will be done tonight, esp if he's asleep. (sounds obv i know!)

So I am out of the hosp for the evening to watch Strictly & drink wine, yey.

More testing planned for tomorrow, then nothing specific for Monday (that we know of), then he'll be disconnected Tues afternoon for a quiet night, then the main op on Wed.

At the mo, there's plenty of time to get him over the infection for Wed to go ahead as normal, and he has to have the grids taken out at some point, so we are feeling positive

Wow it's all happening isn't it! I imagine you can't believe that Wednesday is only a few days away and then the big one is over. Have they given you any more info about what they are picking up on?

Grr to the nurse - hope DH gives her what for!

Hope H gets a good night's sleep

Enjoy the dancing and your wine

Hi Fatzak

They have said that his motor cortex is clear, yey

apart from that we are trying not to pester them for details yet.

sure DH will sort that nurse out! (almost feel sorry for her!)