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!

FB - the 'baby buddha' look i mean! ds1 had it a little but has grown out of it and ds2 never really piled on the weight in the same way.
the steroids do sound nasty - did they stop the IS? does IS go away?
anyway if i met your ds from those photos he would just have to have a cuddle!

Ah yes. The Steroids Lard Effect. [nods wisely]. I remember DD1's consultant calling her "a little chubberlubber" after her second lot - bad news for him because he said it in a TAC meeting packed with highly indignant women, lol. He got away with his life, but only just.

Morning, JKS. Am still trying to drink my breakfast cuppa - has been in and out of the microwave a few times now ...

Well, Keppra is still working really well

No big fits at all since last fri (before the K started). The odd absence, or mini-cluster of them, and the staring into space.

Generally he is sooooo much happier and more awake

We are both feeling so bad about not noticing how lethargic he had got obv it crept up on us but...

Sat, Sun & Mon he just gradually started cheering up when awake and not seeming to need quite as much sleep as before.
Tues, Wed & today he's been absolutely amazingly different.

I managed a trip to the supermarket with both boys yesterday - not a big deal to most but he normally would want to go back to bed as soon as meals & nappies are dealt with.

and today, a first for over nearly 6 months....we all went out for the afternoon

went for a walk in the woods, play in the playground + ice-cream, then to the supermarket cafe for bits of shopping & the boys teas.
he's still on the go and happy.

don't think anyone but me & DH can see the difference and find it as amazing as we are!

Friends round yesterday for the afternoon, and shock, they actually SAW ds2 awake!!!!

so all good so far, dropping down to 1ml of Epilim x 2 from tomorrow for 3 days, then off that completely.
so am i right in saying we should brace ourselves for a slight increase in abnormal activity as the E wears off and before the K increases?

No idea about the change in drugs as we are still on epilim, but lovely to hear things are much better .

Hi, sorry to hear about all yr worries, JustKeepSwimming, I can sympathise, my ds aged 2, has severe epilepsy due to a genetic disorder and life has bn really hard, I also have a dd,8 who is healthy, but Jack has hypotonia(low muscle tone) so won't walk for a while, hypermobility(very flexible joints), damage to his left and right temporal lobes in brain, global development delay(delay in all areas)

Jack has had every sort of seizure, absences, tonics, drop seizures(which he is more recently doing), trembling(once), he has bn uncomscious, and bn in many status seizures(where he just doesn't stop, despite being given his rescue med)and despite being on epilim 5ml, nitrazepam 6ml, and more recently keppra 4ml replaced lamotrogine...and he is still having at least 1 seizure a day, so I know hw hard it is

I hope yr ok and yr ds, mwah! xx

my son had sezuies at birth and spent three weeks in NICU we thoght it was just due to the truma for a difficult birth and that he had passed though them by the time he left the unit. He seemed like a normal baby until he was about 18 months when I started to notice that he would stare in to space and nothing would bring him round. he would come round minutes later grumpy and needed a sleep he had EEG and it wasnt normal so he was started on epilim
We have been on it for more than a year now and on the whole the sezuies are maanaged we still have the odd one and he has behavour and learning difficulies becuase of the sezuies but we cope.
My word of warning is about other medication thta may be given by your GP
about a month a go my son had a chest infection the medication the doctor gave him reacted with the epilim and we ended up having 7 yes 7 in a week solwly get worse and worse it was only a chance comment by the health vistor that spoted the mistake
so please when you are given other meds double check that tyhey are ok with the meds the child is already taking

Sorry been slack on here.

Well today is Henry's first day with no Epilim , the Keppra seems to be working magic so yey for Keppra!!!
He goes up to the 2/3rds dose on sat so will have to wait and see what happens between now and then.

still some absences, but 2 or 3 in a whole day compared to the clusters of over 30 at one point

and some staring into space, but hey i do that too, lol!

Vicky - thanks so much for that warning, will have to remember to be careful whenever he needs anything else. he had his MMR as planned last week as seems ok from that, so far.

Proudestmummy - bless you for giving me support, sounds like you could do with some yourself!

has the keppra helped him yet? can you up the dose a bit?

Feelingbetter & Fio - thanks

we are much calmer now, and have accepted things as they are and find it much easier to talk to people about it, though i suppose compared to some we have been let off lightly

let's hope it stays positive and gets even better!

Just want to say hope keppra does the trick.

We are in limbo started on Epilm and steroids in April, had a hellish EEG after huge increase of Epilm and they seem to have gone though DDs seizures arent easy to see. The only thing I can say is she has started to smile so something must be working. She will be one tomorrow and had never properly smiled till 2 weeks ago.

ANother EEG Tues so not holding hope of improvement until the writing on the wall so to speak.

Good luck x

Josey

sounds like you are in a horrid kind of limbo
Sooo glad she has started smiling for you, that must be lovely to see

(off to nose at profile)

Oh what lovely pics of all 3 they look like they love holding their little sister! What do they ask/know/understand?
I have just told ds1 (just 3) that ds2 has a sore head/is ill, etc. and he accepts that. but then ds2 is visually 'normal' (if i can say that?) most of the time and ds1 has been totally oblivious to any fits!

Hey JKS, sadly keppra not working, is on 4ml now, and 6ml nitrazepam, and today another paed(as couldn't get hold of Jack's consultant) put Jack's epilim also up to 6ml from 5ml, hws every1? Brilliant news bout keppra working JKS!!

Irn Bru? oh well each to their own i guess

Sorry the drugs aren't working yet for you & him

Well Henry up to the 2/3rds of a dose of Keppra from today.

He's definitely benn having more absences this week, which are tiring him out so he's back to sleeping loads again.
After last week when we started to see light at the end of the tunnel it's been a shame to go backwards.
But, I am positive about upping the dose and hoping he wakes up a bit more again.

He also had a sore throat and temp this week, prob a reaction to his MMR from last week which didn't help as he was awake lots at night so was more tired, so had more absences, which tired him out even more, and so on...

Fingers crossed and more tea

Hello there- I'm new to this but I have been looking for advice on the internet all day, and this is the only place i've found people going through the same stuff.

My DS, (5 1/2yrs) has been having myoclonic jerks and absences since birth, and taking Sodium Valproate for about a year which has reduced them but not completely cured. Recently he had three very scary 5 minute tonic clonics as he was waking up over the course of one week, which has given me a whole new level of fear and worry. Docs have put his epilim dose up to 15mls twice a day, and I'm worried sick because he is really not himself: staggering around, so tired he can hardly open his eyes, and really irritable and aggressive. Just as if he was very drunk. The doc at GOSH has recommended going onto kappra as well as epilim, and then reducing the epilim a bit .

We have an appointment on Tuesday with the local hospital who will prescribe this, and my worry is that if he takes kappra as well as epilim, the side effect might be even worse.

I see that justkeepswimming is going through the same process, and I can really relate to your messages. I'd really like to read anyone's advice and experiences on this please! Is anyone else experiencing these side effects with epilim?

Thanks!

Hi! Irn bru yeah, I am scottish, comes with the territory, Jack has had a bad day today, lots of seizures and spasms, dunno why, was still takin lots but not as many as today, but epilim was put up yesterday from 5ml to 6ml, if same tmrw think we will be paying a visit to childrens ward

Hi Lauree,
We are not experiencing it ourselves, but have been warned about it. DSs epilim has recently increased from 5 to 6mls twice a day, following a new type of seizure. It has never really had any effect of his jerks, but has done quite well on controlling the seizures. He had been on it since January and we have only put it up 3 times (2 for emergence of a new seizure, 1 for growth).

I suspect it is the same with any epilepsy (or similar) drug. Its a balancing act between reducing the abnormal activity to control the seizures and not affecting their normal activity.

It may take a bit of fiddling to get things right. I hope your appointment goes well.

PME - sorry to hear that Jack has had a rough day. I haven't been posting for a while now, but have been lurking and have read your previous posts so know you have been worried(and saw the video ). I really hope this rough patch ends for you both very soon xx

Thanku feeling better, yeah the video was terrible, it is so worrying, hope he has a better day tomorrow hope yr ds is well

Thanks, feelingbetter. . . you're right about the fiddling with the dose. i found the SV didn't really stop the jerks either, but I don't worry about those so much. What I found was that 15mls makes DS intoxicated with no fits or jerks, but on 14mls he is more himself with eyes open instead of droopy, BUT the jerks come right back. It's a fine line ! I've got him on 14.5 mls right now and seeing how that goes.
hope we all have a good night x

PME - how's Jack doing? is the increased Epilim working?

Lauree - how about your DS? is 14.5 working out better?

Well i'm upset today after a couple of difficult phone calls with GOSH
This will be long sorry!

Backtracking slightly, we built up to the 'full dose' of Keppra and it wasn't working.
DS2 was still having loads of absences and sleeping tons.

So i rang GOSH and spoke to a lovely Doc (Kate Lamb) and it was decided he could go up 2 more steps in Keppra before reaching the actual maximum dose for his weight.
So we went one step up - no difference.

KL had told me to ring back before going up the final step so i duly did this morning.

A different doc rang back and firstly didn't know ds2 was on Keppra and was asking me when he started it/who put him on it again!
He wants to carry on with last step up in Keppra this Sat, then ring back next week (Wed) to discuss adding Epilim back in as when DS was on both he was the most awake ever. I think this is dithering about a bit but ok, let's go along with it.
Then tried to chase up our next appt with them - originally told it would be in August but no-one seemed able to tell me when it was (incl KL).
He finally told me (didn't seem to want to tell me over the phone, weird?) that it's in October.

I explained that i was disappointed as everyone says how good GOSH is but so far i'd waited ages for a letter written so badly it's almost impossible to understand (another story) and an appt that is in their system but no-one has told me about and is 2 months later than expected (maybe not a big deal in the grand scheme of things i know).
anyway he said he would speak to the secretary and get back to me.

Rings back half hour later (which is good i admit) to say that our appt can't be 'brought forward' - i said i didn't see it needing to be brought forward as we were told we would be seen in Aug anyway. But the Prof we saw last only had 1 clinic a month.
And i said that others from GOSH had mentioned they wanted to do their own EEG & MRI, could we put these requests in now rather than waiting till Oct? Whilst we were just waiting and doing nothing/fiddling with drugs that aren't working (ok, maybe overly negative on my part!).
He said we are talking to you, so things are happening, if it was urgent of course he would be seen earlier.

So I said: 'what you call urgent and what i call urgent might be different things'

Him: you are talking to me as if i don't know what i'm talking about and i don't think you should be speaking to me like that

Me:

Oh dear JKS. Haven't been following your thread but saw your post and felt it needed replying (ds2 has epilepsy so I have been on this board now and then although not a 'regular').

I don't think you were rude. After all, as you said, he didn't know what was really going on with your son. So he was trying to manage a case he didn't know, over the phone. And I think what he said to you was rude ('we know children and we know what's urgent and what's not ). And I think we really have to fight to get the best for our kids, even when dealing with a well-respected hospital like GOSH.

I had a similar experience when ds2 was falling over a lot due to his myoclonic seizures - to the extent that he was scared to walk and used to ask to go in the buggy 'in case i have one of my jerks'. No-one in the hospital (not GOSH though) seemed to care that this was happening. I took him to A&E after one of his bad falls because I wanted someone to acknowledge that it was happening because of the epilepsy. And a nurse said "well I appreciate you feel this is connected to his epilepsy but we'll just treat this like a normal head injury, and of course most normal parents wouldn't bring a child in after a fall like this". And at the same time she said maybe I would have to get him a helmet if he was falling over that much. And the consultant he was under at that time just wanted to increase his Epilim, although it really didn't seem to be controlling the myoclonic seiuzures at all, and was causing all kinds of behavioural problems. But our GP wouldn't refer us to any other paediatrician even though I asked. In the end we went to a private neurologist, who has been great, but then I know we are very lucky to have that option.

Sorry, didn't mean that to be an unburdening on my part, just wanted to sympathise and say we'd been through similar. On a more practical note, maybe next time you call you could just check when Kate Lamb is next in so you make sure you are dealing with her and not someone in the team who doesn't really know your son's case at all?

Good luck

Thanks Mummypig - both for replying and for your story.
Bit at your experience in A&E!

I went through it all with DH on the phone afterwards and felt really sad that i'd been 'told off' and was not rude as far as i could tell, i was trying to be assertive but guess it backfired.
I know that same doc will be on duty next week as he already told me that in the first phone call

We have the possible option to go private, does get on my nerves a bit that the prof only does 1 clinic a month too!
also i asked if we could see someone else as she had said to us that we wouldn't always see her - though i liked her so happy to see her all the time, but not if it means a 3 month delay.

Way back at the beginning of all this i mentioned helmets but was told not to worry about them until the time might come...but when he was falling over so much last night i wondered if the time has come now.

The Epilim seemed to increase DS's tonics and they stopped as soon as Keppra started. but it was the week of both of them that we had a glimpse of what life could be like. (He was up for 5 hours straight at one point, and happy with it! Normally 2 hours is his limit before needing to go back to bed.)

hey ho, i'm taking deep breaths and hoping that he talks to the Prof and she directs him to do things a bit differently.

Shame you'll be getting the same doc next week.

I wonder why GOSH were so keen to reduce the Epilim if it appeared to work when in combination with the Keppra? Ds2 has Epilim + lamotrigine and the combination seems to work. Anyway I am not a neurologist so can't expect to have the same background or overview they have!

Oh dear, been spending too much time on the computer today. Better wake up ds3 and go and collect the others. Hope this all settles down for you.

When he was on Epilim alone his tonics increased so I raised concerns and GOSH decided to change to Keppra. As soon as he started on Keppra the tonics stopped, so at the time we were happy to ditch E and carry on with K.
We thought that the stopping of the tonics and the waking up was due to K and thought the absences would stop once we built up the K.

Now, with hindsight, it seems clear that the combo was what worked best.

Hopefully we may get there next Wed and then see some improvement after that.

Hi guys, hope every1 is well

Jack nw on topamax 15 mg twice daily, and nitrazepam 7ml twice daily, and currently being weaned off epilim, nw dwn to 2ml twice daily from 7ml twice daily, not loadsa change in seizure activity yet but praying soo hard there will be, his wee personality coming bk tho xx