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!

Re-reading my message now I sound it bit negative, sorry.
Treatment was horrible, but mostly it was horrible for us.
DS enjoyed eating a lot on the steroids, I think - took him a long time to get out of the habit .
Vigabatrin was a swine to give him as he'd spit it out all the time (don't blame him, tasted vile). It was a problem for us as DS was only 5 months old and therefore only drinking milk - would be much easier to hide in food with a bit of flavour.

So, sending lots of good vibes (and wine) and endless patience for tomorrow.

JKS - just wanted to send you some good thoughts. I am so pleased that things are moving and you're being taken seriously. Hope it all goes well tomorrow, will be thinking of you ((hugs)).

FB - thanks, don't worry wasn't totally depressing, honest! H loves food already, have noticed he is putting on weight recently anyway with lack of activity and big meals, sure he will balloon on steroids but we'll deal with it if it happens i guess.
So glad to hear your DS 'came back'

Ali - thank you. all hugs & good vibes gratefully accepted!

H currently tucking into an enormous portion of porridge
then we need to get organised to go back for telemetry

will update whenever i can next get on - no PatientLine in his room, no sign of Net access anywhere i could see, i will go crazy!

Take a dvd player or ipod touch or whatever if you have one. It looks like they have TVs but the reception is TERRIBLE for some reason, making it unwatchable. Or at least was both times we were in and they seemed to think that was "normal". why a building of that size can't organise one working ariel, I've no idea.

Good luck - best wishes for an easy day and nice clear results!

Thanks r3dh3d

Luckily they had a portable dvd player and stacks of dvds - the only one of importance being Night Garden (in H's opinion anyway!). We need to invest in one i think for future possible visits.
Couldn't get the big tv to work at all although others did have theirs on
and no net access, though they have 2 wireless networks, they are only for staff usage. Anyway...

Hardly any sleep last night, think my brain was on hyper-mode too!

H had plenty of clusters of spasms for them to see so that was good.

His wires were taken off this morning and he's had a CT scan as well to try and rule out Tuberous Sclerosis (which i had been avoiding reading about as sounds nasty) - they want to see if it's there, won't change treatment as such but could be genetic with implications for all the rest of us?
We should know that soon, maybe even today/tomorrow.

He has also started weaning off the Trileptal and should be totally off that asap.

He has started on Vigabatrin (i can't say it properly!) and that could poss have a good effect on his spasms whilst we wait for surgery.

He will definitely have surgery, and almost definitely before Christmas, in the next few weeks very likely.
The GOSH MRI showed a clearer pic than the previous one and wasn't entirely fab news.

He has a clear lesion on his right temporal lobe, about the size of a cherry tomato.
He also has widespread 'abnormality' in the rest of the right temporal lobe and 'possibly' in his right occipital lobe.

So they are calm about it and plan to do a TOP - 'Temporal Occipital Parietal disconnect' (i think, may have got that wrong). they will remove most of his temp. lobe (to gain tissue for research and to leave space for swelling) & disconnect the rest + occip. lobe from the rest of the brain so it has a blood supply but no electrical activity.
(i'm not 100% sure why they leave it?)

In the meantime, we are hoping for a slight improvement from the viga. and maybe even to 'see' some developmental things that are currently hiding to give us hope that they are there.

Oh, a poss negative side-effect from the surgery is some loss of sight in the left-visual-field. we are like, 'we'll take that, that's fine!'

lots more talking to be done i'm sure, for now we are knackered and just waiting for big pile of drugs so we can go home for a week.

back as an outpatient next week to review how the drugs are going.

back sometime after that to meet surgeon

then surgery.

sorry, really disorganised post, v tired!

Oh JKS, that sounds like an awful lot to be dealing with all at once. I hope you are OK?

It's all bloody scary stuff, but you sound positive and it sounds as if they are being very thorough in their investigations.

Is surgery the only answer? Will it stop all th seizures

Know what you mean about the loss of visual field possibility - small price to pay, and if I've read it right, its still just a possibility?

Hope you enjoy this week at home together and that everything is sorted very quickly.

Keep us up to date when you can and GOOD LUCK x

Thanks so much FB

We are ok, totally overloaded with info and both brain-dead (excuse the phrase! ) so can't even talk sensibly anymore.

the viga. drugs may well alleviate the IS but the lesion+other abnormal bits will cause seizures in the future so there's no point putting off surgery even if we get a short-term improvement from drugs.
so yes surgery really is the only answer.

Is could make him totally seizure free......
but should certainly reduce hie seizures massively with the domino effect of him waking up more, being able to concentrate more, learn/develop more, etc.
he may always have problems but let's be honest, he may have had some anyway and he has tonnes right now, so 'some problems' feels perfectly do-able!

the sight loss is just a possibility - he may already have it, it's so hard to test in such young LOs. they do want to try some kind of sight test for LOs at some point but think that's more ticking boxes than anything that would affect surgery tbh.

How are you all getting on?

Sound like you have had some great professionals working with you there justkeep - brilliant that they are keen to get everything done so quickly.

Unfortunately DS' PET scan didn't help to identify where his seizures are starting, so we're back to square one there. His neuro said to DH that the next step might be to carry out a type of EEG which is actually on the surface of the brain rather than the skull( repeat "I will not think about that and freak myself out") to see if that helps. So another trip down to London - GOSH this time!
Meanwhile another change of meds I presume when we see neuro at end of the month.

And to top it all, DS had a seizure at school today which was the one thing I had dreaded. Thankfully DH was still there dropping him off, so he timed it well I suppose!!

Hi Fatzak

So far we are mostly on the side of GOSH being fab (there have been some hiccups but aren't there everywhere?).

We asked about that brain-surface test too, and they said possibly, if they don't get the info from the other tests. I'm hoping he doesn't have to have it (and for your DS too) - but right now H is so regressed that i'd put him through quite a lot to give him a chance of a future beyond 6months old &

Did your DH bring him home/stay with him til it had passed then leave him there? cannot imagine dealing with all this stuff at school age tbh.

well......H only had 1 cluster of spasms today (normally 3, 2 yesterday)...so that's 1 improvement. and....he was more awake today, in fact did NOT want to go bed at 7 as he'd only got up at 5, went at 8 ok. this may sound normal but he used to go 2 hours awake, then straight back to bed. and sometimes even less than 2hrs.

He has been very grumpy and unsettled all day so not all positive.
We are keeping records of everything at the mo.

so far positives since starting vigabatrin/sabril are:

• a couple of backward steps
• a few one-off clap(s)
• enjoying a nursery rhyme
• helping to get dressed by putting his arm through the sleeves

negatives:

• more grumpy & miserable
• walking is definitely on the verge of disappearing, lots of staggering and falling over

anyway, a change. a change is as good as a rest isn't it?!

JKS - please bear in mind that loss of muscle tone can be a side effect of the vigabatrin, which may make things more difficult for him.
but things may appear to get worse before they get better.

And any regression, whether its the drugs or the seizures at fault, can be overcome.

Keep positive, today sounds like a good day (overall) - H being more alert/awake is a good sign

FeelingBetter - thanks

we are feeling more positive today - even found ourselves talking about him going to school. that's been on and off and on and off again over the last few months.

His walking started getting worse before he started the V. we see it as another step backwards in his regression. Hoping he has surgery before he loses it entirely.

We are hoping all the regression will be reversed, somehow, some'when'.
No-one can give us any answers now so we spend lots of time talking in circles & in hypotheticals....

anyway, thanks, it helps me to talk about it!

How are you doing?

Remember I mentioned the yahoo group?
Some of the parents are amazingly well informed and you may get some more specific advice and info about the surgery ahead.

We are OK at the mo, no real changes except the boy is in super grump mode. He's been teething forever now, but still only has 2 teeth! The others are all there tho, just sitting and waiting. His gums are very sore and he has a sore rash/chapping around his mouth and on his neck where he is dribbling so much. Poor boy.

Anyways, back to YOU and your boy.
DSs neuro explained IS to me as trying to develop and progress through constant interference like a de-tuned telly. The increased electrical activity is exhausting in itself, but imagine trying to do your normal stuff through constant fuzz. We'd find that hard enough and we know what to do after a lifetime of interaction. How I'd fare trying to make sense of new things and learn new stuff, I can't imagine.

Just think of H as taking a little break while he gets well again - then he'll have the strength and energy to dedicate to learning and there'll be no stopping him!

Make sure you get a break too x

You though about the ketogenic diet? They do it at GOS too.

Riven - yes I know about the keto diet, in fact i was v keen on trying it when this all started. but as time has gone on i'm less keen.
various reasons - with such a physical & removal abnormality i'm keen to get rid of it and see if that works/improves his life enough to consider it a success rather than leave it there.
with a pre-schooler in the house too i don't want the battle over he's eating that so why can't i and him end up on an unhealthy diet for him
and at the mo, pasta is one of H's main pleasures in life

i would consider it for an older child and def if the surgery doesn't work out though.

FB - thanks, have been reading through lots of the yahoo posts, not posted yet though.
Yes the GOS people agreed with our white noise analogy and said most of the time H is likely to be very confused about the world around him

his sleep routine is different, but not better i wouldn't say. so far it doesn't look like the vigabatrin is working he goes up to the target does tomorrow though so there's still some hope there.

a friend saw him today - hasn't seen him in a while - and was shocked at his decline.
and it is the decline that i find so depressing. it's like we're living life backwards.

Well, H is 'normally' up for a total of 6 hours, and the last couple of days he's been up nearly 8

Today he was up for 4.5hrs this morning (instead of 2 at a time) and 3.5 this afternoon = 8 already!!
so hopefully a couple later, that will be 10 HOURS, i can't quite believe it.

No major progress in any other way, though:

• his walking is marginally steadier
• he seems a bit happier/interested in us/connected

These could turn into the beginnings of major progress though so we are keeping track of all the little things

Tomorrow appt at GOSH to review the Vigbatrin (& hopefully get the CT scan results to rule out TS ).
He is still on a high dose of Keppra, and his Trileptal is going down slowly.

Hi JKS
Even if you don't want to go keto, are you aware about gluten-epilepsy link? My ds had absence seizures and used to violently twitch at night plus other neurological problems (balance, coordination, speech etc) and when we went gluten free, I was totally blown away by the fact that these symptoms completely reversed .
Turns out that he has gluten sensitivity (ie not celiac) that is associated with neurological problems without any gut issues. No test would have picked it up, only diet trial.
See link below for some scientific papers on this. One thing I remember reading though is that diet can only be succesful if started early, otherwise the damage may be too complex to undo.
You can get lots of substitute products, like gluten-free pasta etc, so it's not as hard as keto. If I were you, I would try that as an experiment for own piece of mind to see if there is a chance it might help.
gluten & epilepsy

That's interesting Nightcat - your DS sounds exactly like mine! How did you find out that it was gluten causing probs? Am going to read that link now

Hi FZ, very long story.. but I refused to give in and after 10 years of sheer despair, a guy from another forum pointed me to the research that he had come across.
Then we started the diet overnight just to see for myself if there was any hope (as the celiac test was negative - which our paed told me is unreliable in children under 16 anyway).

Nightcat - thanks for that, very interesting! I think we are set on surgery now tbh. they are due to review his case tomorrow so i hope we hear something soon.

Meanwhile - he is amazingly awake, it's unbelievable!!

He's awake something like 10 or 11 hours in a day

We even managed to go to the supermarket today and then get out round the corner for a walk too. Unheard of, even just a week ago!

He has still had some nods/spasms today but hardly any. We are hoping the drugs get firmly on top of them on the next day or so, so he can concentrate on developing again.

So far we've heard 'buh', 'duh', 'muh' & 'guh' noises

Waiting for something major like a word or clapping but at the very least he's stopped declining/regressing so yey

How is everyone else doing???

We're hanging on in there, JKS. DD1 not doing so well atm - we've had poor control lately and another emergency blast of Clobozam but it didn't really do much, which is very disappointing. One of the really pants things about Keppra is that it tends to bring seizures on in "clusters" so it's so hard to tell if this is a bad week, or an illness, or just the Keppra - or the start of major deterioration. Whatever the reason, she's having 10-15 overt seizures daily and school are calling me most days to take her home because they don't think she is safe in the taxi. And I'm sleeping in her bed, which is something I only do if I absolutely have to - she's a light sleeper and never seems to get used to me there so in practice neither of us sleep and we're both beggared in the morning. She is stopping breathing 4 or 5 times a night though so I can't sleep in my own bed.

Sounds like your DS is on good form though, which is very encouraging. Fingers crossed for good news from God's Own.

r3dh3d - how long has DD been on Keppra for? DS was on it for about 9 months, got steadily worse then started with absences that he'd never had before which quickly escalated into him going into non convulsive status. The neuro we saw whilst in hospital basically said that if keppra is the wrong drug to be on, it can worsen seizures so he quickly got us off it. DS has never had another absence since he came off it although his other seizures remain exactly the same

We are on a burst of clobazam too although our neuro has kept us on it until we see him in two weeks. I think it makes a huge difference for DS in his well being during the day and he seems much more alert - although he does dribble which is awful for him as he is 6! They do say though that for 1 in 3 children it stops being effective after a few months - no doubt that will be our bad luck!

We are into day 3 of our gluten free trial - i think we are reading too much into it but he does seem much calmer and less agitated than usual but maybe that is just wishful thinking!

I'm trying to think, FZ. Since May I guess. She got worse first, rather out of the blue, though I put it down to age/brain development. Then we added Keppra which sort-of-fixed it, now she is stable but not completely controlled for the last few months, with periodic wobbles. So it's not that it's made it worse, as such.

r3dh3d - for you, all sounds v scary and frustrating. Esp the phone calls from school - must be so worrying to see it's them calling again.

fatzak - have you got some bandanas for his dribbling, pirate-style? i don't even like H dribbling and he's only (nearly) 20months. he's teething too but still there's something horrible about his staring vacantly into space & dribbling too
the gluten-free thing sounds interesting, how's it going now?

GOSH phoned again. they reviewed his case yesterday and as a result of that meeting they want him to have

• an ultrasound on his abdomen
• an echo scan on his heart
• some blood tests (unspecified)

any ideas what these are for????

The Vigabatrin was working very well but yesterday was not a good day. Today was better but still not as good as the few days previous to yesterday.
who knows...

JKS,
heart-wise, see example [http://www.epilepsy.org.uk/news/heart-problems-can-cause-epilepsy-symptoms this article], maybe that's what they are considering? Logically, there is electric activity in the heart as well as the nervous system, so it looks like they are doing a thorough check which is a very good thing.

There could be lots of blood tests, eg. my ds had a test for autoantibodies to Perkinje cells in the brain and anti-gliadin antibodies; this was specifically from gluten point of view.

As for the ultrasound, does your ds have any gut symptoms? Interestingly our hero neurologist works very close together with the gastro dept (not London).

doh, here is the link again (sorry!!)

link