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!

Ah. That will have been Helen Cross, I imagine. She is very competent! She is quite blunt though and of course it's a shock.

Thanks r3d
Yes was Helen Cross! we liked her, no messing around, dodging questions, carfeully thought out responses so we knew what she was saying.
(not patronising at all, we are such newbies to all this and i think you might be a bit of an old hand)

Spent time at AM too with my mum - she was based in Harrowlands for rehab post chemo but had tests and stuff at AM. was not a cheerful time in our lives so prob have an unfair view of AM.

The 'idea' of going in, taking out the 'bad bit' and it all being gone is sorely tempting....but of course life/surgery's not quite that simple is it?

Hi JustKeepSwimming I have a bit of experience of both sides of this coin. Before I had children I worked in a Regional Neurological Centre, in theatres, so looked after children having epilepsy surgery, and looked after them once they had the mapping grids fitted prior to surgery.

They really did seem to tolerate it well, and of course it was life-changing. The 'mapping' procedure gives the surgeons a really good indication of what function, if any, is in danger, so they can decide whether surgery is viable or not.

Move on 4 years, and I have 3 children under 3½, no longer work in neurosurgery (or at all, at the mo) and have DD1, 3.5, who has recently been diagnosed with.... epilepsy and last week..... cortical dysplasia .

So I wonder if that is what your DS has? The term they may have used is 'focal cortical dysplasia'. It sounds like you are saying that there is just one spot, although of some size, that is malformed?

DD apparently has 'subtle but extensive' cortical dysplasia, which I presume means that surgery would not be an option, because it would take most of her brain. Thankfully she so far has only had drop attacks, and the Epilim seems to be working, although we are waiting from results of a 24 hour EEG. She does have Global Developmental Delay, though, and needs 1:1 in preschool.

Oh, and do you have any hazelnut Clusters? They're yummy.

thanks Lou - it does see a bit ironic for you....less of the shock but more of the worry as you know more.
Dr Cross did say a word for the bad bit and it started 'dys' but forgot it - should have written it down!
3 under 3.5? mad or brave....
my 2 boys were 20months apart which was doable with 2 but not sure i could cope with another just yete - plans for more in the future though.

prob silly q - is there a genetic element? should we be watching ds1 closely for signs? should we worry about future children?
(would worrying achieve anything anyway!?!?)

tanks fio - all sounds positive

he's just had another big fit - lasted 1 minute but seems to ave really taken it out of him, taking him ages to 'come round'

Can anyone answer this one:

during a fit, could his brain damage itself so badly that he can't do what he could before? (ie walk, babble, etc)

That cluster hit the spot! I have 20mo between each. Found out DD1 had SN when 9 weeks pregnant with DD3. Glad about that, because DD3 is lovely & had I known, we might have waited or not had a 3rd.

I think there can be a genetic element. Our consultant is going to go back to the geneticist with the MRI results.

I think losing skills is more of a worry with very prolonged seizures that they call 'status', where a seizure continues for several minutes or even hours.

thanks both of you.

we have been told to give midazolam if he's still seizing after 5mins. the longest i've seen is 65secs (by my counting), though nursery said he fitted for 3 mins with them on monday.

it's more upsetting seeing how long it takese him to came back to us
and then i started thinking maybe after one fit he just wouldn't.
overactive imagination...

otherwise, it's keep him safe, count how long it is, and keep a record.

Lou - it's interesting that you say that as we have wobbled about numbers 3 & 4 (according to original plan) but luckily we weren't going to even start ttcing no3 until DS2's 2nd birthday so we haven't had to worry about that just yet.

JKS, it all depends on the seizure. The more severe the seizure, the less time it takes before it's considered a risk. Typically, they say give emergency meds after a 5 minute TC. But DD1 has a wide variety of seizures and my diazepam threshhold for each one is different. And as the meds start working, the seizures get milder. So you may find his "seizure protocol" (rules for what emergency meds to give when - written by consultant or Epilepsy nurse usually) changes as his seizures come under control.

There are two types of status anyway; status partialis (anything under 30 mins) and status epilepticus (over 30 mins). They will tell you to bust them out of any sort of status, but it's status epilepticus that they worry about. DD1 has some brain damage which we think was from status - but she was in that particular seizure for four hours. She has had I guess hundreds of thousands of seizures of a few minutes long, without any ill effects. Follow the advice, ie give midazolam after a 5 minute TC or whatever else is in your protocol, but don't beat yourself up if it runs to 6 mins or 7 mins or whatever. Really isn't going to do any harm.

Do you have a specialist locally, other than GOSH? They're not very good (OK, they're useless ime) at the "pastoral care" element - they see you in clinic, tweak the meds, do some tests, send you home. Not so hot on wtf to do once you get home. Ideally you'd want to see a neurologist at home but while you're under HC @ GOSH you're unlikely to get one, more likely to be a paed, if you are lucky one that specialises in neurology or epilepsy.

Hi JKS - I think so far things sound very positive for your DS. It's great that they understand the cause of his seizures and already have a plan in place for control. Also fantastic he is developing normally. DD1 has epilepsy among other problems. She has mainly absences, but also drops and partial. She started on epilim and it worked well for a while, but when the seizures came back and we increased the dose it didn't help and just made her really sleepy. Since then she has been put on Zarontin. So far so good. It's almost completely eliminated her absences over night. Only problem is she hates the stuff - often gags and pukes it up. Tried mixing it with rice pudding, yoghurt, nothing seems to work. Any tips appreciated. Oh - she loves epilim though

sorry meant to reply properly but too upset now.
he's had 2 more 'big' seizures, going to call them Tonics for now, until someone tells me otherwise.
one this morning, 45secs, came round relatively quickly, went to bed for 2 hrs.

woke at 10.30, so i thought ok, get up, let's play. he was grumpy but slowly cheered up, then the consultant secretary rang me back so i was on the phone in the kitchen he came in, was walking about as normal, then fell - now i don't knoww if he had a momentary fit that made him fall or what - bumped his cheek on the oven handle (big bruise coming already) and screamed. stopped crying, couple of big nods, then 45sec fit.
did the fall bring it on, was he already nodding that's why he fell? who knows.

anyway, consultant just rang and i had a longish chat with him but am annoyed - GOSH haven't been in touch with him yet (tues-fri, letter should have got there ), he doesn't know what's best to do. and can only advise me to go to a&e if worried.
He is rapidly becoming 'not-him' as far as i can see

anyway he has spoken to GOSH and given them my mobile plus given me a number of the epilepsy registrar so may call them when i've calmed down. oh, we apparently don't have an epilepsy nurse 'in post' as yet.....

Oh JKS, huge sympathy here - hold tight. As the Epilepsy "emerges" (for want of a better word) the seizures can come more often and it will probably get worse before it gets better and it does give the impression that the meds aren't working. The problem is there isn't enough in his system to make a difference yet, and you can't rush it. It's a horrible feeling of helplessness, but you can only wait and see what happens while the meds are getting on board.

GOSH are notorious for not writing letters. And I'm afraid HC's team are one of the worse ones. The problem is that they are paying NHS wages but competing with "proper" London employers for admin staff. There are some heroes employed there who are basically doing it as charity work, but mostly they are paying peanuts and getting monkeys. [sigh]. If you can get your consultant to phone them and take direction that way rather than wait for admin to do the typing, your chances are better. Though I doubt it would change the current plan, you would feel better I'm sure if you knew it was based on the latest info and you had a clear picture of what would trigger a change in plan.

Now, I am not at all saying you are overreacting, because I know exactly how ghastly it is to watch your child have a seizure. But. DD1 had (at peak) 108 seizures in 24 hours - this is with emergency meds every 2 hours - and we had to go through 5 or 6 meds, loading up over weeks and months, before we found one that actually worked for her. But she is OK.

NB - the "falling" is possibly another type of seizure, a "drop attack". It's not unusual to have runs or series of seizures, so if he has a drop followed by a tonic I'd count it as one "episode" rather than think the fall caused the seizure. The sorts of brain waves that trigger epilepsy are more common going into and coming out of sleep so it's not unusual to get up from a nap and have a seizure. We were all late for DD2's ballet on Weds pm cos I had to haul DD1 out of bed where she was napping, and she had a seizure as I was putting her in the car.

Hi justkeepswimming. Will come and drink tea with you! DS is due to have a PET scan at St Thomas' in London with a view to surgery once they can see where his seizures are coming from. We were meant to go on Wednesday but have had to put it off because...

he fell out of the bathroom window yesterday

Can you believe it!!!! Thankfully he is fine apart from a grazed face but we had high drama in an ambulance! He was pratting around in the bathroom, brushing his teeth whilst perched on the top of the loo and looking out of the window and somehow slipped. I was out at the time so thankfully escaped the immediate panic! Luckily our bathroom isn't quite full two story height due to extension being built on a slope, but it was still a way to go. Kept him in overnight for obs and he is fine today!!!

He also has some patch in his brain which showed up as having being starved of oxygen at some point during either development or possibly birth. They don't think it is linked to his seizures but i guess this PET scan will show!

At least we can go camping now next week seeing as how we don't have to spend two days in London!!

Hi JKS, hope you are ok. cant type much (or well) as babe asleep on lap. My DS (11mths)has epilepsy which is (atm anyway) controlled with epilim syrup. He has had a few 'big' seizures now, longest 3 mins, but most, like you 30-60 secs. DS has open access to kiddies hosp so we always take him in (and then bring him home) for a check up. DS has severe brain damage so epilepsy was almost a certainty, but it still hit us hard when it started. Must be so much worse for you

We have midazolam to give if he suffers a seizure lasting more than 5 mins and then 999 call. I am still learning but it is my understanding that a seizure lasting 5 mins needs immediate treatment to try to prevent convulsive status. It is this that is damaging. Upsetting as they are, his seizures are not damaging his brain (please correct me if I'm wrong, more knowledgable peeps), but they need to get them under control.

DS is v sleepy and dazed after his seizures and neuro says that the increased electrical activity in the brain is exhausting for them, so its no wonder your DS is out of sorts.

I have gotten more used to it now, which is sad and good at the same time, though it did take me a long time.

On a positive note, DS is brilliant. Always trying so hard to prove his doom monger doctors wrong. I honestly feel that his epilepsy has not hindered his (very delayed) development at all. The bloody chest infection he's had for 2 months has troubled him more!

You can get a free epilepsy alarm for your DSs cot/bed from the muirmaxwell trust. I relaxed a great deal when we got ours. I can get you a link, but you can google it.

Keep posting, there is so much help here. Some very knowledgable ladies have held my hand and really helped me through this last year. You will get lots of good advice and 1 or 2 Mums here i suspect, know more than your average neuro.

Best of Luck x

PS. Are you Madmouses mate?

Right, kettles on (though as it's Fri night, there is red breathing and white chilling too!) and biscuits at the ready!

Feelingbetter - thank you. Yes know Madmouse from AN/PN thread.
Looked at your pics - your ds looks so cute -so cuddlable (word?) love the one of him asleep with the teddy!

Fatzak - OMG about the fall out the window glad he's ok, and slightly pmsl at your attitude to being able to go camping instead!
not encountered a PET scan yet, what's that all about?

r3d - at 108 in 24hours
how is dd now?
how are your nerves? do they ever recover?!

when ds fell earlier it made me cry when he fits i'm all calm. think the small things tip me over.

anyway, some progress i think.
GOSH want to change the meds (as i suspected they are keener on Keppra than Epilim).
DH is at hosp collecting some Keppra now.
so we will start dropping the Epilim dosage tomorrow morning and start with a 'third' dose of Keppra at the same time.

they are not happy with my description of events this week and told me i did the right thing ringing, so i'm glad i did

fingers tightly crossed for Keppra!

Glad to hear you got a response from GOSH. .

There are a couple of bits of good news about the Keppra. First, it ramps up faster than most other meds, (though it doesn't ime do much at low doses). Second, so far it's low on side effects; it's not going to make him dopey or anything. Big down side - tastes VILE. . You may find it goes down better mixed with something - ribena usually works best (v strong masking taste) but Madam, for some reason, prefers her Keppra with orange squash concentrate.

Re: the nerves - well, the wine helps with that! Mine's a pint of white, btw...

i'm on glass 4

well, i did ask thee doc on the phone if it would go down as easily as Epilim and he said yes! so thanks for the heads up! will see what happens with a bit of the dose, then put the rest with squash, or something.

wish it kicked in asap, 2 weeks on a third dose, 2 weeks on 2/3 dose, then full dose.

'ping'????

PINT!

Suspect you may have gone to bed, but just to say that I have epilepsy. After 15 years bouncing between different medications I was put on Keppra 12 months ago and it has changed my life. Obviously, there are lots of different epilepsies.. but I just wanted to say hang on and see how the Keppra works -it stopped my daily seizures within 48 hours.

Night All

NBB - thank you! i love hearing the success stories

ds1 is an early riser, think i've got him downstairs without waking ds2 today.
will try the first Keppra dose at breakfast

Now JKS, by 'cuddlable' do you mean fat?

Really, fat was an understatment - he was huge . He is a lot slimmer now, those pics were taken during his hellish steroid treatment for infantile spasms, during which he ate full feeds every hour. He was very fat, he looked like an egg, bless him.

Hoping for a good day for you today x