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!

another one shows 2 possible causes:

here

Nightcat - thanks!
DH wasn't happy with the vagueness of it all so rang them again this morning. turns out they aren't convinced that he doesn't have TS so all the tests are to confirm/rule it out.

They told us the CT was clear so we/I stopped worrying about that at least. But all of these tests are to see if there is evidence of it elsewhere.

so, something to keep on the worry list,

not too long till the tests are done at least (next wed) and we will see the professor then too so hopefully she can give us reassurance, or not...

x-posted.

someone on here had a friend with Long QT & her newborn was just diagnosed with it

thing is, the mri has shown such a clear abormality in his brain that i feel that's enough, let's deal with that, let's not have extra problems, isn't removing quarter of his brain enough to be dealt in the bad luck cards?!

Ah, shite JKS, was hoping a corner had been turned
Could still be a blip tho, so try to stay positive.
For me, any info that can help me understand what on earth is going on, is a step forward. Each investigation leads to more info, a step closer to proper diagnosis and appropriate treatment. The no mans land you're in is very difficult - trying to second guess with 'what ifs' and 'what'll happen next' is exhausting and can drive you mad.
I still find it very hard. I can cope with the boy and his condition just fine - he's a delight, but the not knowing what happened, being without a proper diagnosis or a prognosis, just trying (and mostly failing) to treat each new symptom drives me absolutely up the wall at times

Sometimes, I wish someone would say 'this happened - it caused x which led to y, and means z for the future'.
Even if its really shit news - just to know.
Only sometimes, mind..........

Keep your chin up, you are doing sooooo well. I hope you get some (positive) info soon.
Thinking of you xxxxx

hello, can I come in and make friends??
dd has epilesy, at the moment it is controlled(touches wood) but if you see my thread, this might change soon, and it would be lovely to have people to chat to,.

dd starts rufinimide soon.

Really pleased I found this thread. We are currently struggling with our ds epilepsy. The epilepsy is bad enough, making him tired and loss of apetite. We never know when a seizure is coming, so we are on edge all of the time. The last seizure he had (partial seizure) lasted longer than normal, then he went on to have two more that day (unusual for him) so things seem to be going downhill. The paed keeps changing his meds, but nothing happens. At the moment he's on Keppra and being weaned off Tegretol, and he will then be weaned off clonazepam. Then he will start Lometregine.

But this will take upto 6 weeks. It's agony waiting that long.

The bit that we are most concerned about is that for the last 8 weeks, he has had constant arm and hand jerking, sometimes violently so that he throws a toy across the room etc. No-one can decide whether this is epilepsy or not. So we are waiting for an EEG, and an MRI.

Does anyone recognise these symptoms? Arm jerking constantly, but as soon as he falls asleep it stops, until next morning. It's just the left arm, and sometimes the left side of his mouth jerks too.

He will also sometimes have myoclonic attacks where the top half of him will spasm and his arms will be thrown upwards, and he will fall down. This is happening many times a day too.

It's so frustrating. He hasn't had things this bad before. Things are definitely getting worse, not better.

Oh, and the paed is considering vagal nerve stimulation. It's like a pacemaker but instead of being connected to the heart, it's connected to the vagus nerve in the neck which somehow cuts out some of the extra electrical stuff going from the brain to the body. ?? Not sure if I have got that right?

Anyway, that's enough from me. Hope everyone is having better days, it's such a tough time with epilepsy, isn't it?

Hi all

Well tonight I'm feeling very happy & excited! DS2 (H) - (re)-started dancing tonight x 100000000

And he had no nods/spasms today

And he was happy, and making conversation-style noises, and interested in a book, and made brrrrrr noises when he saw the Ninky-Nonk (a train but hey a vehicle!)

Maybe, just maybe, the drugs are kicking in.......

FB - you're right, all info is good. Just want reassurance too. Hopefully the Prof will be able to tell us more...
It's all the uncertainty that gets you isn't it?

2shoes - hellooo and welcome I haven't seen your other thread, will look for it - on SN?

Riven - yey for new drug, boo for all the faffing around involved. Hope it works though.....

Twoisplenty - i'm no expert at all. but. the attacks you describe sound like Infantile Spasms - ofetn called "Salaam" attacks cos of the look of them. google it - the net knows more than me!
I can't speak for the jerking, but DS2 often jerks, random things that can shock you if you're holding him.
I hate all the weaning off and onto drugs, drive sme crazy waiting to see if something's going to work. so sympathise.
How old is your DS?
DS2 (H) is 19mo, nearly 20mo. operating at mostly 6 months. Has been a depressing few months recently but i feel a lightbulb went on tonight with him, fingers crossed he keeps it up from now on.

Good luck to everyone

Fantastic news justkeepswimming, it's so lovely to see your own child making exciting progress.

My ds is 10yo, and has had epilepsy from around 4 years, but did have fits at birth, along with brain damage - cerebral palsy.

I have just read my post from last night and realised I didn't even mention his cp! The epilepsy is far more worrying to me atm than his disability. We are used to his cp, we are very worried about his decline with epilepsy.

Until this latest round of fits and jerks, he was doing rather well, but this morning the myoclonic jerks are every few minutes. They usually calm down after a while, but they are driving him crazy, along with the jumpiness in his arm. Poor lad.

JKS - hoping for another good day for you today
Twoisplenty & 2shoes hello!

Well DS is OK epilepsy wise, - but we are expecting his suspicious spottiness to become chickenpox over the course of the weekend I'm starting to think he does it on purpose, you know. Things level off for a bit and he thinks 'time for some extra fuss' - usually at the weekend so Mum & Dad will pander to his every whim!
Clever boy xx

FB - these boys know how to keep the attention on them don't they!?

DS2 was kept in hosp overnight - his breathing was really not great. Had 2-hrly nebuliser through the night - dh stayed in with him & I got a relatively decent night's sleep.
They suspected swine flu but think we talked them out of that - though we will hear results on Tues. Didn't want him to have tamiflu for no good reason.
He's on ABs for a throat infection.
On Ventalin for a viral chest infection.
with open pass back into children's ward if needed.

Will have to see what GOSH say tomorrow re our Wed appt & tests

Anyway he & DH are sleeping.
DS1 & I are in the 'cinema' - popcorn made, curtains shut, film on

How is your DS - spots come to anything???

TwoIsPlenty - guess they're not IS if he's 10 then. how has he been the last few days?

Our day at GOSH yesterday:

Some tests clear (kidneys, liver, bladder & heart all OK)

More tests requested: PET scan, a new EEG & intercranial monitoring.

Give current drugs another week to see if they work, if not try steroids for 2 weeks, redo EEG either way to see what's going on.

Meet surgeon at some point & have this intercranial monitoring for 5 days in hosp, then straight to surgery + in for 4/5 days to recover.

Prob early November.
Maybe bigger op than previously planned as more abnormal tissue detected, some parietal tissue affected aparently.

Also got summary letter from GOSH from telemetry stay (& other appts that week) - they mention poss problems in the parietal lobe in the letter but had not mentioned it to us before yesterday.
Also his EEG during szs does not 'lateralise' - this could be a problem. THey are hoping anything on his left side is just interference and that if we can calm it down, when they redo the EEG they will see that it's all coming from the right hand side.

The professor did apologise - every time she sees us she gives us more bad news!

Ho hum, we carry on, and hope H gets over this cold & gets back to sz freedom and developing...

Hello All, OK to Come In?

DD Has been having Absence episode last 3 or so months though maybe longer as have noticed lil one that last just couple of seconds!

She hasnt started any medications as yet, her eeg showed spikes and a Epilepsy DR has said yes tis,

But pead sounded still unsure so has been refered to neuro for another eeg and mri.
the first mri showed a shadow?

she also said that a blood sample they took showed a high level of "something"(cant remember the name) which is indication of Epilepsy.
Why would they still be doubting?.

Does anyone know what the blood test would of been or why there isnt any conclusion yet?

Thanks

Hi Fluffy!

I don't know much about any of this tbh, but blood tests say genetic testing to me, could be wrong.

Well H has had 2 crap days, lots of sleep, lots of spasms. No excuses of cold or teething, the vig is just not working

Will leave a message with GOSH tomorrow (our nurse doesn't work Mondays) that we think steroids are the way to go....

Does anyone who has done both know if he will have to wean off vig before the steroids start? or wean down the vig at the same time as steroids go up? or leave vig the same for now?

Any positive thoughts about steroids for us?!

Can't help with the steroids am afraid justkeep - really sounds like they are doing a good job in their investigations even though it seems like more bad news for you.

We are being referred to GOSH now - prob to same neuro as you see but I can't remember her name. DS' PET scan didn't help at all, so the next step is the EEG they do actually on brain surface - no idea what it is and i am not going to google it either

We are reducing Tegretol this week and starting DS on Lamotrigine so fingers crossed there. We are not having such a bad time at the moment as even a quarter of a 5mg clobazam tablet twice a day seems to keep things much more controlled. Shouldn't have said that should I - watch this space for a week from hell!! We have also been gluten free for two weeks and I think that it is certainly having a positive effect on his concentration, co-ordination etc. I do think that he has some ASD traits and know that gluten is a factor for many children with ASDs so maybe that's what's helping.

Good luck with the steroids and hope it helps your DS.

We are under Helen Cross - we like her a lot. She is very clear, no vagueness & she clearly thinks carefully about her answers to questions.

We have an appt through for a PET scan (12/13 Oct). They want us to go in on the Monday just to fill out paperwork, then back in 8am on the Tues for cannula, etc. then the scan, home that night.
Will have to sort out childcare for ds1 by then....

H is having the 'invasive monitoring' test too - poss in early Nov. If you want to know more (I'm an info person but understand that not everyone is the same) look through the online leaflets on the Gosh website, under I.

We are still reducing the Trileptal, only 2 weeks left on that. The Vig appears to be totally failing atm tbh Sat, Sun & today H has been awake 2hours or less at a time, with loads of spasms/nods/absences.

DH is convinced he's seen some 'dis-co-ordination' with his eyes too

And we think his left hand is showing signs of weakness

Hope the clobazam is still working for you & DS. We will have to worry about behavioural stuff later i guess...

And now I have googled Didn't realise that he would be in hospital so long - that'll be interesting how we cope with that and life up here in Yorkshire. DH is self employed, we have DS2 at school so looks like I might end up in London on my own! Wonder if my mum fancies a couple of weeks in London with me

So, steroids.
We did it the other way around, started with the steroids (which failed) before moving on to vig.

When we had 2 weeks at full dose and it was clear they weren't going to work, we introduced the vigabatrin and slowly increased the dose as we weaned the steroids (prednisilone).

Steroid treatment was very difficult for us, but please bear in mind that DS was only just 5 months old at the time. He didn't sleep very much at all, had very high tone which made him difficult to dress and hold, and he ate constantly. He really did double in size! He was sick a lot - only because he ate waaaaayyyyy past his capacity - he/we were very lucky in one respect that we escaped the nasty side effects (increased BP, stomach trouble).

We found that starting the steroid, and then with each time we increased the dose, would make the spasms go away for a few days, then they'd slowly creep back - it was like it just wasn't enough to stamp them out.

The effects really didn't last long though. He was far less grumpy within a week of starting the wean and was back to his normal self very quickly. The eating took a bit longer to settle!

It didn't work for mine, but I really hope it works for your DS. It was hard, but I'd do it again tomorrow and a million times more if there was any chance of the tiniest improvement.

Also, at the time I was on ML so did most of the dealing with it on my own, and was still (with hindsight) getting used to DSs condition. I honestly don't think I'd find it as hard if I were to do it now.

Good luck xx

Fatzak - when is your invasive monitoring? If it's after ours i will try and give you some tips!

FB - so, steroids. started this morning

Steroids worked for us ... while she was on them. Absolutely, totally knocked it on the head for two blissful weeks. Didn't have to wean anything else at all, method of action completely different. In fact, I think we put her on them in order to keep the lid on the seizures while something else was coming on board. A few years ago now so not remembering all that well, I'm afraid. So fingers crossed.

I think we did the ribena trick to get them in - crush, mix with the smallest amount poss of water, suck up into a syringe and then fill the syringe with ribena concentrate. Shake madly and insert in child.

Hope all goes well with the steroids Justkeep.

No date for invasive monitoring yet - we have only just been referred from Leeds down to GOSH so have yet to see anyone down there.

Am so hoping that the lamotrigine will be successful but as usual am waiting for the pharmacy down at the GPs to actually get the stuff in.

r3dh3d - thanks for the ribena trick - worked this morning
And if it only works while he's on them, that's good enough for now - need a clearer EEG and other stuff pre-op. Then hopefully he won't need them anyway

Fatzak - thanks grr at GP/meds delay, been there too many times already. DH got v stroppy with local GP surgery who shut for a half day on the day we were prescribed the steroids he told them they would be giving him the prescription....and he got it - would never have worked for me. Anyway think we owe her some wine now!

So, day 2. Last spasms seen yesterday breakfast.

Was awake about 8hrs in total yesterday. an improvement on days before.
And generally seems more 'here' & 'with us'. so we are happy so far.
No signs of major weight gain or irritability so far.....

See, I'm getting carried away already. Fat lot of use I am!

No spasms, yey, a clear day

prob only 6ish hours awake though.

Thoughts re:
2 hrs awake with mad eeg-electrical storm vs.
2hrs awake with no electrical storm but concentrating on stuff......?

How are things this week Justkeep?

Hope all is going well with the steroids.