If i type out DS's EEG report, would you care to express an opinion?

[JustKeepSwimming]

(hope this is the right place to put this)

History:
DS2 (15mo) had 2 'convulsive' seizures (Tues & Wed)
He has also been having absence seizures since Wed (poss earlier but we have only noticed them since then)
Had EEG Friday

EEG report (just the conclusion) as follows:

'The EEG is markedly abnormal. There are frequent high amplitude spikes and sharp wave abnormalities that are ill localised/multifocal and sometimes more generalised consistent with a seizure disorder. Abnormalities at present are not hypsarrhythmic. Further classification is not possible.
You may want to look for potential underlying causes such as structural cerebral pathology as well as metabolic aetiologies.'

Right, imagine i know nothing. what does this tell you?
Could you compare it to your own/your DC's report?
Any help, support, advice & hugs welcome.

(we understand that he has epilepsy, he is due to have an MRI soon for more info, then we will be transferred to GOSH and to discuss meds. All new territory for us and need some knowledgeable support, tia.)

JKS I will respond here, have just jabbered on at postnatal thread. Not hypsarrhythmetic is very important, if they were it would possibly indicate a very serious seizure disorder called Infantile Spasms, although ds is getting too old for that now.

A little bump for you JKS

I don't really understand the EEG stuff but have some very un MN hugs from here!

Re the structural cerebral pathology, I guess that that is the MRI. For the metabolic aetiologies, I think that they will do a lumbar puncture and bloods to test that - DS had his done whilst he was under general anaesthetic for his MRI.

We have an appt at St Thomas' in half term for a PET scan to look at parts of his brain to see if they can see exactly where his seizures are starting. Then they can decide if they are going to do surgery. Gulp. That's the first time I've written that down as it's too scarey

By the way. Have you had a read on here

It's a bit of a faff to register as they have to send you a password and I lost mine, but there is someone who posts a lot on the childrens thread who is either a neurologist or an EEG technical type person and knows her stuff!

Madmouse - thanks! glad to hear something serious is something he hasn't got!

PBM - thanks mate

Fatzak - gulp, that does sound scary
lumbar punctures - my mum had lots due to her cancer so whilst i know about them i'm scared for my little boy to have one.
they have sent off urine for metabolic tests apparently that take months so hoping they might delay an LP - though having it done during the sedation for MRI is a good tip
good luck to you
will have a look on the epilepsy forum thanks.

I am really not an expert on this. The only expert I know hangs out on the National Society for Epilepsy's forums. Might be worth reposting on there.

The issue with EEG reports is they are supposed to be describing what the trace looks like, not a diagnosis. So they intentionally don't tell you so much - the consultant looks at the report, combines it with the symptoms the patient has and puts 2 and 2 together.

However - my guess here would be that they are saying that the EEG is picking up the sort of activity that generates seizures. There wasn't any single "focus" (ie area where the seizures would always start) - which would be consistant with the seizures he has had: complex (global) seizures like TCs and absences. So, Epilepsy.

I can't remember what any of DD's EEGs said. So many of the damn things, many were blank, some were 3-day affairs and we didn't see all the reports anyway. GOSH not fabulous for reports, I have to say.

Anyway, you can't tell what sort of Epilepsy (and thus what meds have the best chance of treating it) until the MRI comes back (DD1 has had 2 they're not so bad)

Oh, and hugs. Epilepsy stinks.

hi My DS2 was dx with epilepsy around the same time.Its horrible and so scary isn't it.xxxxxxx

he has left temporal lobe epilepsy (I think- he is 5 now and has thank god been controlled since 15 months old - started fitting at 9 months)

Stillenacht - thanks. so he hasn't fitted from 15mo-5? that's good. is he off meds now then?
(hard to imagine us being there - the other side of meds)

r3dh3d - thanks. yes it stinks
that all makes sense. blank eegs? sound v scary! or was she just fidgeting?
will head over to the E forums soon, still a bit much for me to take in so far.

JKS controlled generally means meds working well not off meds - sorry

no - he is still on meds (Epilim). Paed neurologist has recommended that we reduce the dose but i am scared in case he fits again (He also has autism).

We were told today that if he has 2 years without fits, we could consider (slowly) coming off meds.
but all different i understand that.

have resisted started the meds just yet as i feel he'll be on them for a long time and want my ds2 for a bit longer.

don't mind if staying meds means he is 'normal' and not fitting, just worry about the 'dulling' that people seem to talk about on epilim.
should we be researching other drugs?

(remembering that when ttcing ds1 and having pcos i researched drugs and asked for metformin over clomid, then prompty got pg first ov and had ds2 by 'accident'!)

I didn't do any research and still am very naive about the effects of epilim.Its quite hard with DS2 to know where the Epilim effects leaves off and where the autism starts. DS2 was having 7 fits (they were absence seizures tho so not full on tonic-clonics) a day for about 4 months before peads etc would take it seriously (they initially thought it was post viral as he had had chicken pox).

JKS you are doing brilliantly with this - it is so scary and good for you to be really going into it all.

Yes my paed neuro also said about the two year thing.

Stillenacht - thanks for responses. about autism too for your ds2.
ds2 had the 2 x tonic clonics (though they haven't officially been called that as the docs didn't see them and i don't know what i'm looking for) and we have noticed that the absences are coming in clusters.

luckily he had a series of absences at the docs today so they could see them.
(sort if lucky, iykwim)

don't think i'm being brilliant tbh. want to howl and wail and trying not to cry all the time. feels like too major a thing to be happening to my baby.

i know JKS - its shit many many hugs from me xxxxxx

thanks for replying riven.

like what underlying damage? an bump on the head? a random mass of unconnected tissue? (can you tell i have no clue?!)
repairable damage or not?
(sorry for so many questions. all we have right now is questions!)

Meds these days aren't quite as bad as the original ones used when I was young. I've been told that although the meds do have side-effects, the side-effects of the seizures are almost always worse. So the net result of taking them makes you better off. Happily, there's also research to show that delaying medication (unless things get wildly out of control) doesn't do any harm. So it's not as if you have harmed him by resisting medication.

Medicating for epilepsy is frustratingly a trial-and-error process. Some meds tend to work better on some sorts of seizures - but that's on average, not in every case. So the process is to try something, then try something else, then try something else, till you hit one that works. If something works partially, take a lot of it and then look for another one that you can combine with it.

They try the safest meds first, which is almost always Sodium Valproate (Epilim) and carbomazepine. If they don't work they try others but the side effects may be greater or the risks higher - my DD1 is on keppra (amongst other things) like Riv's; keppra seems to have few side-effects but it hasn't been around long enough to be sure about long-term effects so there's a degree of risk there. She's also on Topiramate, which has more side-effects but has been around a bit longer so is less of a long term risk. Etc etc. Plus of course there's a difference between the side-effects they put on the bottle and the ones you get in practice - they tend to list the "medical" ones, not the common ones iyswim, so what you are looking out for and what you actually get in practice may differ. You have to talk to people who are on them to get a clear picture. But I'm afraid it's not as simple as picking and choosing the med you like - the consultant takes a view which ones are most likely to work given EEG results etc and you try them all till you get one that works.

Hi JKS..

I really feel for you. Our dd2 was 14 months - now 3 yrs - when her seizures started. We were advised to start meds immediately after first EEG - after a cluster of different types of seizures had occurred over a period of a few weeks. She had been been developing really well up to that point with no indicators of anything wrong. We resisted the offer of epilim for 7 weeks despite a very abnormal EEG for the reasons that you stated -anxieties about side effects predominantly.I don't really like taking meds for anything myself.. but we were told we should start with epilim asap.

The EEG did not appear hypsarrthymic but she was later diagnosed with infantile spasms when her seizures were recorded on video. It is my understanding that there can be some adverse effects if infantile spasms are occurring and I'm afraid I do regret not starting meds earlier. Whilst we researched and tried to decide what to do our dd continued to have 4 or 5 seizures ( mostly but not all infantile spasms ) a day. I have tormented myself about this periodically since then. It took about 6 further weeks after start of epilim before the seizures stopped. We have had some breakthrough seizures a few times since then and she has a lot of seizure activity at night and has been on Clobazam as well ( which was very scary too..) for nearly a year. We've needed to increase it once in that time. We've been told she will never have a normal EEG.

She had her first MRI 6 months after her first seizure which identified a rare-ish condition called Tuberous sclerosis.

The world of drugs for epilepsy can be a very scary place and I remember someone saying somewhere it is an art as well as a science for the prescribers.

In those early months I found the NSE parent forum so invaluable and if you want some specialist advice on your EEG - then do a post for Anna's attention. She is a fountain of knowledge and I'm sure will do her best to help and inform you any way she can.

The good news is that our gorgeous dd2 has her seizures pretty much well controlled ( always touch wood when I say that! ) I feel we are really lucky in that. Her development is significantly delayed but I feel that was likely to happen anyway with her brain being so scrambled a lot of the time. I sometimes wonder how the drugs have affected her personality but I'll never really know for sure so I try not to dwell on that..

But she's so happy and fiesty and gets so much pleasure and joy out of her life despite being on such heavy duty drugs.. Sorry that I've gone on too long.. It's a hard and scary place you're in right now - I remember it well.. So sending you lots of courage and strength.. Take care of yourselves..

Thanks for all of your replies

Riven - as far as we know, he's not had a brain injury, just usual falls whilst learning to walk.
He is fine in himself, when he's awake.
He sleeps a LOT and has done for months and we are now thinking that it is linked.
He has hit all developmental milestones normally (ahead of his brother with some things) - apart from rolling which he couldn't be *rsed to do until nearly 12months!
He's due to have an MRI next, hopefully soon, maybe that will tell us more.

r3dh3d - thanks for your comments. i'm sure we will start the meds soon, either once the MRI tells us/the docs more or ifG he has another convulsive seizure before then.
Happy to start with something more 'established' IYKWIM drugs-wise and see if that works for him. Just still at the stage where i can't quite believe it's happening to him/us

DJAngel - thanks to you too. Do you know why your DD might have 'got' TS? or is it 'one of those things'?
I had a quick look at the forum last night but found some of it a bit scary for now. will try to read when i've got some peace here.
Glad your dd's seizures are controlled and that she is a happy, fiesty little thing!
DS2 right now is happy and such an easy baby and i dread to think of him hyper on drugs and 'losing' his personality but then we can't just leave him having seizures either.

I'm still at the wake up, then remember, then feel sad all over again bit - does that ever pass i wonder...
and i know there are worse things but this is bad enough right now thanks!

Justkeep - it will pass and although it will always be part of your family's life, it somehow changes. I'm amazed at how we as a family have coped with DS's epilepsy. When he first started having seizures in his sleep, I couldn't even go into his room to go to him as I was so scared of it so used to just scream at DH to wake up and go in!
Yes it's still awful, especially as we haven't found the right medication yet, but DS is thankfully pretty unaware of it all.

Keep strong and take care

Thanks Fatzak & Riven

Sorry for your DS & DD though, still struggling with meds & fits

No major fits, and only a few absences today. almost making us question our sanity - has this week really happened????

he's got a bad cough & cold though so not sleeping well and not happy