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!

yes yes that's what she having ! can not wait to tell her how your ds is doing and i will tell her to come on here or at least chat to you.

when ever iv been with them she is always having seizures they look like is ones plus other

Hey. more good news! fantastic

I have good new too.. DS has learnt to jump. Right off the ground, two feet into the air. ( I got down on my knees to have a look at the air gap underneath). He's pretty chuffed.. been doing it all day now.
Just turned six, and he JUMPED!

oh blow. got to go and have a little cry now. (!) why is it always the GOOD news has that effect??

I know Lauree, same happens to me!

H banged 2 toys together yesterday

And lots of mumumum noises

Trace - yes he used to have Infantile Spasms which would come in clusters of up to 40-50+

Oh, and DOH!

Well done to your DS!!!! x lots

hi i find out friends dd is having some took away in feb and if improvement some more after that i am seeing her on wed is there anything you want me to tell her?

Sounds a bit different to what we went through but tell her it has been SO worth it for H already and we're not even a month after surgery

Also, lots of general stuff about allowing herself to feel down & depressed (I went on ADs a few months ago and they really helped), give her & dh/p plenty of 'down-time', massage, whatever they like/can afford, etc. to take minds off it for a bit.

Ask lots of questions, join lots of epilepsy websites/forums so you know more of what the docs are talking about - if she's that kind of person.

And good luck!

JustKeepSoddingSnowing you about?

(JKS is fine )

yes?

hi been chating to my friend on sk about her dd opp this is what she put!

Anyway, my little girl had a intra cerebral bleed around the time she was born which resulted in hemiplegic cp and then West syndrome. Since she was about 5-6 months old she has been having seizures and these have had a detrimental effect on her development to such an extent that we are now at the stage where the best chance of remedying them is surgery. The initial plan is to do a cyst decompression - where she had the bleed has formed a large fluid filled cyst. this is scheduled for mid february. They don't have great expectations that that will help and if after a month or so there is no improvement the plan is to look at a more extensive temporo/parietal resection with the last line being a hemispherectomy. I guess i'm posting to see if anyone else has had any experience of brain surgery and anything we need to expect or consider?

To make things even more complicated, I am expecting another baby any day now ( literally due saturday) and so we will have a newborn to consider as well as Eleanor ( my little girl) - has anyone any experience of there children being in hospital and having a newborn ?- i am hoping to breastfeed so it won't be easy to leave the new baby .

I don't know if anyone can help, but thanks for reading this - didn't realise how long a post it was

sorry just coped and pasted! but thats what she having done, are you on special kids?

Is that another forum? no i'm not, never heard of it sorry!

Well the cyst bit is very different to us and i don't know anything about that.

DS2 had an extended temporal 'resection' (just a posh doc word for removal!), the extended bit means 'more than just the temporal lobe'.
so they took out a bit of the parietal lobe too but not all of it.

I personally cannot imagine going through it all with a baby tbh, so good luck to her with that!
has she said anything about invasive monitoring first? or are the docs fairly sure of the areas they are dealing with?

There are some great blogs out there about kids who've had 'hemis', and a hemi-foundation that i was pointed in the direction of, but we always knew that H wouldn't have a hemi as his frontal lobe was/is fine.

Is she in the UK? wherabouts, ie which hosp?

One of the blogs i read most is 'Dear Trevor' here Trevy had a hemi in Oct 09. and it links to others going through similar. i found them very helpful and good to see pics to warn myself beforehand.

West Syndrome is another name for Infantile Spasms basically which is what H had/has.

yes it is and i think she also goes on hemi site, and yes west syndrome is is ill try to get her on her to chat to you.

thank you so much, the link you gave me i read yesterday thats weird

Spooky

yes shes uk i think either sheffield childrens , i might be wrong. carnt get hold of her but i havea link to this thread.

hi everyone, hope you don't mind me gatecrashing. I'm Nat- mum to eleanor that trace kindly pasted over here earlier. Thanks for the replies already!
To fill in the gaps a bit and try and answer a few questions eleanor is about 2yrs 4 months now - started with Infantile spasms at 5 months. They are pretty certain that they arising from around the area where she had the bleed - the initial MRI showed a 'large area of encephalomalacia secondary to bleed' in her R hemisphere - pretty much most of her temporal and parietal lobes and the EEGs she's had suggests the source of the seizures are round there. She's so far tried prednisolone, vigabatrin, epilim, topomax, keppra and lamotrogine with only a brief episode of seizure freedom at the beginning. We initially saw one neurologist and then got a second opinion from another who is big into VNS stimulators etc. and has quite a lot of experience epilepsy and surgical side of things. The first thing he said when he saw the scan and discussed where eleanor was up to was that the most likely chance of improvement/seizure freedom was surgical. Initially he discussed a subtotal hemispherectomy ( preserving her frontal cortex as much as possible). Anyway, it was discussed at the neurosurgical meeting and they came back with a less 'radical' approach to it. The scan suggests that where a lot of the bleed was is a fluid filled cyst and there is the outside possibility that pressure effect from the cyst is responsible for the seizure effect ( though they believe it is more likely to be the scarring and stuff around it). So they suggest that first of they have a go a just decompressing the cyst - hopefully a 2-3 day inpatient stay and a relatively straight forward procedure ( if there is such a thing). This is what they're planning to do next month. However, if is highly likely this doesn't have any significant effect then the plan is to reassess it in about a months time and then go onto a temporo-parietal resection. They are pretty convinced that in terms of 'functional brain' in those areas that there isn't much. Eleanor has no fine motor movements on her Left side and already pretty much entirely neglects that side.
in answer to the question - we are under sheffield childrens.
How is your little one coming on after surgery? Are you glad you went for it?
I am kind of accepting that we have to do it. Functionally eleanor is functioning at about 8 month level ( oddly enough about the number of months she's had without seizures) and when we think back properly she is showing signs of having lost skills she previously had. The belief is that with the resection she would have a 50% + chance of complete seizure freedom, and i know reading around that most people have had at least a positive outcome to some degree. it does however scare the heck out of me.
thanks for reading all that lot - hope some of it makes some sense and any experiences would be really really welcome.
ps thanks again tracey

hi nat glad you joined am sure just will come along soon soon? its a great site and loads of advice too.

Hi Nat - think we may have spoken briefly on the IS community forum actually (or at least i've read some of your posts anyway, it rang a bell about expecting a baby, you must be due about now? Best of labour wishes for you!!)

The decompression sounds like a staging post, helpful but perhaps not massively. But always worth a try.

H's development totally regressed, he was 'normal' up to 15months-ish, in fact prob ahead of the curve.
Which meant it was a while before we really noticed that he was going backwards.
We got our (lovely) HV to do a formal assessment, as we were worried, when he was 19mo which put him at 8mo.
Then GOSH did another check at 20mo which put him at 6mo. So he was rapidly getting worse

The thing is he was higher than 6mo in some ways, was still walking for eg.
But worse than 6mo in some ways - took no notice of other people, for eg.

So it's not always clear.
Anyway, since surgery...

He's been totally seizure-free
In fact it's surreal how easily you get used to not seeing them. Then he might pull a funny face and your heart sinks and you think is this it, have they come back? but it's just him doing a funny face, so the fear is always there in the background.

And developmentally he's coming on so amazingly well
We were told to allow 6weeks post-op for him to return to pre-op levels of skill/ability. And there are a couple of things he's not doing again yet (climbing stairs, running).

But otherwise, he's doing so much more, talking/babbling, smiling & laughing, being ticklish, and generally just being 'here', looking at you, making eye contact, etc.

Also his left hand was weird/possibly numb pre-op and now he's using it, near normally. He can pick up food and feed himself with it which he just wouldn't do before. Don't think we'd reached a point of weakness in his left leg/foot but sure it would have come over time.

Sorry mammoth post already and i prob haven't answered anything yet!

One Q for you, have you thought about asking to see anyone at GOSH? maybe even just email them/ring them for advice? they are meant to be the leaders in the UK for the invasive monitoring which gives them a really clear idea of which areas are causing the seizures which sounds like it could help you as the docs don't seem clear on that for E.

From what I've read leaving the frontal lobe alone if at all possible is really helpful.

Will stop now, but please ask anything

JustKeepSoddingSnowing iv been in tears reading about your ds you must be sooooooo proud? and would like to say thanks for talking to her, and am hoping no news from nat means the baby

alas no news so far, other than i have to get out of here on a daily basis to try and stay sane ( oh and the slowest internet connection on earth).
thanks for your answer - it's really really encouraging to hear how well your little man is getting on.
I must admit i was wondering at the outset of the 'surgery conversations' whether they would want to do any more invasive monitoring and things - and i think it's something to ask next time we see them. I guess, that going off the imagine the damage to that area of the brain is pretty gross and clinically what she can and can't do reflects this pretty closely, so maybe that's why they haven't suggested trying to map it more closely ??
the other thing i was going to mention was about vision. From word one they have thought that eleanor has a heminonopic left visual field defect - not looking or following to the left was one of the very first things we noticed. She seems to manage quite well despite it - compensates by turning her head round to see rather than her eyes - is your little man still having issues with his vision and things?

The docs said to us that H may have lost his 'lower left quadrant' of visual field. we had the option of trying to test his vision pre-op but i said no as what was the point?

we won't know til he's older and can do a sight test properly.

if they need to go back in and remove a further dodgy area he could lose his lower half of vision which doesn't sound great but then tbh, we look at how he was pre-op and say being totally blind but otherwise 'normal' is better than that.

tricky to accept though.

can't be long for baby now??

sorry i've not replied for ages - been a bit caught. Had a lovely little baby boy - jacob on the 18th of january. He's doing champion.
As for eleanor we are off to sheffield children's on thursday for the cyst decompression. Getting all nervous now. It feels like i've got loads to do before we go there - daft stuff from getting her hair cut a little ( it's a curly mess atm, and she hates having it brushed at the best of times let alone when she's had someone messing about with her head!) to washing teddy ready and ringing the ward to makesure it's ok to take jacob. It's beginning to feel a bit daunting - especially as there is low expectation that it's gonna improve the fits this time.

with the vision thing. i'm not sure about ellie's vision. She deinately does have some loss on the left so far, but as you say it's difficult to assess formally. tbh she compensates for it really well and as you say it's better than the alternative.

congratulations been thinking about you all!! hope every things ok on Thursday keep us informed !

Hey JKSS, this is great news about H, I'm so happy for him, and that his development is so much improved. fingers crossed he won't have to have it done again x

Nat - Congrats on baby Hope the decompression happens asap & goes well.

Thanks everyone, all continues to be really positive here

Firstly, we got blood results back, H does NOT have Tuberous Sclerosis (so all relatives can relax!)

Secondly, we can start weaning him off Epilim, as of today A slow wean, over 6 weeks which i'm already wishing away!
He'll still be on Keppra, possibly for another 12months but still, a step forward

He's needing less and less sleep which is fab (can't believe i'm saying that!), only 1 & 3/4hrs nap yesterday which is a record low for him, still sleeping well at night thank goodness. Can really start to imagine family days out by the summer when he won't need a nap and we won't be housebound anymore - we even managed to go to a friends for kids tea this week

Obv he still has a massively long way to go to catch up, and we have no idea if he will, but on current trajectory he will one day and he is just soooo happy that it's been worth it even if he stopped developing right now

(oh, and no seizures....)