Consultant Phoned this Evening - RE EEG - Bit Concerned.

[lou031205]

Sorry to have two threads running - it all comes at once, doesn't it?

(Brief background, DD had drop attacks in June 08 then September 08, developmental delays, EEG abnormal, not medicated, awaiting 24 hour EEG)

We got a letter last month bringing forward DD's Consultant appointment to this week from Feb, as they had had to cancel her Feb one.

At the last appt, the consultant got a telephone report of an EEG that was done, and said that it showed some spike waves, and the background activity was 'not conclusively abnormal'. He didn't want to medicate until he had a 24 hour EEG, or more definite seizures.

I phoned on 27th Dec, to say DD had had another drop attack. Ward said that I should keep an eye on her & report anything else.

I phoned again on 1st Jan to say that she had had another. She hadn't had anything since September, so I was concerned.

Today the Consultant called and said that he had had the full report from the EEG, and that along with the other drop attacks has made him want to start treating DD. He wanted us to come as an overbook on Weds, until I pointed out that he is seeing us that day anyway, lol.

For those of you that have DC with epilepsy, is the process of starting treatment OK, or does it affect behaviour, personality and so on?

Is it normal for a Consultant to phone you up, or does it mean the EEG report was really bad?

Ds has Angelman syndrome and hard to treat epilepsy-he has been on a coktail of drugs but didnt have any obvious changes or side effects. Best wishes x

Most of the meds start at pretty low doses and ramp up. They all have side effects, but the things they will try first have less. Plus some of the side-effects wear off after a few weeks. They put the really ghastly side-effects in the leaflet (so you know what to look out for) but they're pretty rare or they wouldn't have got licensed. The common side effects aren't always listed because they're mild.

Steroids made DD1 hairy. Valproate made her fat. Topiramate made her thin. I think Topiramate also made her slow but can't prove it.

Hi Lou. I don't often post on here but DS (5.5) has epilepsy. He started off on Epilim and at first we were really pleased as there didn't seem to be any problems and it controlled all of his day time "jerks" plus he didn't have any more big (what used to be called grand mal) seizures. He did however pile on the weight the more they increased his dosage to try to stop his night time jerky things (not very technical here!!!)

Once he started school we became aware that he had dreadful concentration and began to wonder if it was related to the increase in epilim. Consultant claimed it couldn't be ( despite us reading loads on it)and continued to increase it. By last June school were looking to begin the statementing process as his concentration span was just so awful. We just don't know if it is the medication or the fact that he can often wake up a dozen times in the night with his startling/jerking things that causes this poor concentration.

Anyway...he is now on Keppra as Epilim wasn't sorting out these night time events. I don't think that there has really been much change in his behaviour at all since changing medication, but I do sadly feel that he is certainly not the little boy he was before all this started. He used to be such a bright spark but is now so vague at times and often completely away with the fairies

We have a five day video telemetry/EEG booked in for next month so we are really hoping that that will show up something on the EEG that will help. I am also petrified that something really nasty will show up

Sorry, lots of waffle there. Good luck with your DS.

Thank you all. r3dh3d, what exactly do you mean by 'slow', do you mean physically, or intellectually?

My DS has night time seizures and is on tegretol. This was introduced very slowly and he would get very tired when the dose was increased but adapted again within days. I was scared it would change my boy, but it hasn't. If anything he is much brighter and more alert and aware ( he also has an ASD so these are real positives). Whether the medication helps stabilise his mood, or the benefits come from his sleep not being interupted by seizures I'm not sure.

Incidently we were advised to wait after an abnormal EEG and a clear MRI scan, but then he had further seizures and they medicated without further testing. We were phoned at home by his paed who was concerned and chased things up with the neurologist.

I was very anti-medication for my DS who is so complicated already, but the reality was far more positive than i expected,

Good luck

Has tegretol controlled his night time seizures Widemouthfrog? We are desperate to get DS' under control - his grand mal type ones are under control with the Keppra, but it's these startles which are constantly waking him up that are really affecting him during the day.

Thank you all so much. I do worry a little that she is already very behind in general, unsteady on her feet and poor fine motor skills too, so it wouldn't be a great thing for her to be badly affected by meds. Obviously, I know that seizures of any sort can't just be ignored, either!

The thing I always quote at this stage - DD1's paed knows one of the docs at a school specifically for kids with tricky epilepsy. He reports this doc saying his experience is that 1 in 4 kids on high doses of meds will have their mental capacity affected by it. But all kids needing that sort of dose would have been affected worse by the seizures if not medicated. So he says he'd never advise not to medicate for fear of cognitive side-effects.

Re: slowness - I mean mentally. My issue is that DD1 started with only one half of the brain working properly. Hence what learning there was happened on the other side. Somewhere between 1y and 2y MRIs, one of her seizures damaged the temporal lobe on the "good" side, severely impacting learning ability. At about 18m, she was put on topiramate - about twice the usual clinical dose. Fabulous stuff but does have "mental slowness" (dopyness I think rather than lack of capacity) on the list of side effects. Now, she went on the topiramate as a result of really quite grim seizures. As soon as she was on it, she slowed right down. But then again, the preceding seizures could have been the problem. Or a mix of both. Hard to tell till we yank it out - something we're about to try, with some trepidation.

I am starting to understand a bit more, those are great explanations

DD has only had 8 drop attacks that we are aware of, (possibly 9 if the fall from the top of a slide in the summer was caused by one ), 2 in one morning in early June, 4 in one morning in late September, and 2, five days apart over the festive period.

Having said that, the consultant said that he wants to start medication in the light of the full EEG report, so I suppose it is likely that he is concerned that these atonic seizures will become more severe seizures without treatment.

Having said that, DD is very unsteady at times and falls a lot, but there have been many times when we couldn't for the life of us work out what had made her fall over, so it is likely that she has had many more drop attacks that we just haven't seen until she has got to the floor.

There is a bit of a tendency once you start having regular seizures that you have them more often - I believe like any neural pathway, the more often you use it the stronger it becomes. However, I would think that would be at a higher frequency than you are having at present.

Btw, my experience is that general paeds don't know a lot about Epilepsy, beyond how to read an EEG at the basic level. The protocol seems to be: "if it looks like Epilepsy, give first-line seizure drugs (Valproate or Carbamazapine). If they work, it was Epilepsy." If if doesn't work, then they tend to refer on to a Neurologist, because it is either something other than Epilepsy which is outside their experience or it is a "tricky" case which may need a lot of trial and error with meds to resolve; in that case it helps to have a good understanding of which symptoms indicate different meds may be effective.

That's interesting r3dh3d, I am not sure what my paed is, in that he is a Paediatrician, but his letters all give his title as "Consultant Paediatrician - with special interest in Neurodisability and Autism". When I heard him take the phone report of the EEG, he was asking quite specific questions about the waves. When we were admitted in October, we were initially under one paed, but he asked this Doc to take over her case because he was 'more specialised in it'.

I am really pleased with his care of her, at any rate, so that is the main thing.

Fatzak - we don't have complete seizure control, but they are rare (every few months), and much shorter than they were.
To be fair though, I don't monitor him through the night so it is possible I miss smaller episodes. It obviously is reducing episodes though as he is so much more alert and engaged during the day. He used to fall asleep at school. Within weeks of medicating he was dry at night which confirms my feelings that he has good control. We never had a single dry night before.

Tegretol (carbamezipine) is one of the older drugs and it was the first we were prescribed (by a paediatric neurologist and not the developmental paed that deals with his ASD). I guess we have been lucky that we have a satisfactory result so quickly.

Can't really help as I am new to all this too, but IME (and I appreciate I am very lucky) DSs neuro always phones us, which, given that she sees him weekly at the moment, is very good of her. We get calls, like you have, after EEGs and sometimes in between calls, to check how he is etc. etc.
It's not always bad news. And sometimes, bad news is good news IYKWIM? If it helps you get one thing sorted/medicated or is one step along the way to understanding the condition - devastating as it is to hear, it is better knowing. It is for me anyway. Thinking of you and keeping fingers crossed. It is scary

Thanks fbb, we will obv know more tomorrow afternoon. I definitely am of the want-to-know camp rather than the head-in-sand camp.

Hi again, DD now has an epilepsy diagnosis, and has been prescribed Sodium Valproate, increasing doses each week until week 3, then continue.

Hope that the introduction of the valproate goes well

Thank you fatzak

lou I have epilepsy, I don't know if symptoms will be different in children as adults but :
epilim, didn't stop my fits,
lamotrigine stopped the grand mal fits but did leave me with very bad concentration and feeling out of it most of the time.
kepra, have just changed to, I'm feeling much more alert, I do feel more bad tempered though, as opposed to zoned out on lamotrigine.
Definately keep a diary of all the effects / changes you notice, their are so many drugs for them to chose from, will possibly take a while to find the right one.
Very nice that your neurologists phones you to keep you up to date.

Sorry got distracted and missed the date change on te last couple of entries
Glad you've got a diagnosis, like I said keep a diary, my results/changes showed up straight away.