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!

PME - glad you are seeing Jack come back and hope the drugs kick in soon, will he increase from where you are at all?

DS2 (Henry) - is currently staggering about next to me as he has more of the really deep 'nods'
Think if any epilepsy doc saw him they would react so differently than over the phone, grr.

Well, more positive news today, GOSH have just rung with an appt for 1st Sept

H has gone up to 2.2ml x 2 of Keppra since Saturday but no immediate signs of improvement.

GOSH doc said he would ring back tomorrow/Wed to discuss re-introducing Epilim so will see what happens there.

How is everyone else doing?

justkedep swimming. Poor you. It really is a shock when you find out your child has epilepsy. But you just learn to cope with it and manage the fits. My son has myoclonic jerking and absences. He had a small grey area on the brain after the MRI, apparently something happened at 22 wekks pregnant - dunno how they can tell that though. George was 6 months old when he started seizing, just little jerks. He is now 11. It took a long time to get a diagnosis because as you can imagine he wouldnt have a fit when we saw any doctor! Eventualy went to addenbrooks cambridge to get him sorted. It took a long time tofind a drug that suited him. Epilim now and works for us. He still fits every day, but manageable. If he has a bad day it really takes it out of him. He gets angry with himself and very tired. Good luck, chin up.

Thanks Jubee - amazing how they can tell so precisely that something happened at 22 weeks - maybe that area of the brain always develops then?
Wish the fits would stop for George (great name btw, going to be my next one if i have another boy!) - must be frustrating for him.

H had more 'falling over nods' last night, and definitely knows when somethings 'coming' as he gets this odd look on his face and looks around like he's been transported to Mars or something!

Is currently running about happy after a big breakfast

Hi JustKeepSwimming glad to hear you have an appt sooner than Oct and hope you manage to find a drug level and combination that works - sooner rather that later. have you thought of videoing some of his 'nods' so the docs can see what's going on even if he doesn't do it when you're at GOSH?

proudestmummyever did you use to be CaitlinnJacksMummy? Glad to hear you are starting to see some of Jack's personality, it's such a shame when you think the drugs are suppressing more than just the seizures.

jubee you've been through all this for longer than I have, glad to hear your positive words.

Have you all signed the petition Riven linked to? It's about substituting branded drugs with generics. I know for one thing it will definitely affect ds2 if he starts being given a different generic drug each time. That's what happened last year and it used to take him about two weeks to adjust each time he got a new batch.

thinking of all of you

Hi Mummypig - i have videoed him at different times - did some more yesterday in fact when he started doing deep ones again. but couldn't do it when he was walking around as i was too afraid he would hurt himself - and me just sitting there filming! will try and get DH and I to do it together.

I don't think i know enough about the brand/generic argument, didn't see the link (thread) either.

Well GOSH phoned again today:

• they don't want to try the Epilim/Keppra combo (dunno why really and think they may have their own agenda and are slightly ignoring what i've said but hey ho)
• they want him to start a 3rd drug (Oxcarbazepine i think - Trileptal?)
• the local hosp will call me tomorrow to arrange issuing it
• they also have 'applied' for him to have an MRI at GOSH, expect to wait 6-8 weeks.

It's all positive/progress/steps forward i guess but it's made me feel really down about it all

Plus had friend's LO here (11mo) and seeing how much more she does just brought it all home more. She's not only doing more than he was at 11mo, she's doing more than he does now at 18mo.

Feeling the need for more than tea tonight!

Aw, chin up JKS! They will get the drugs right and then there'll be no stopping him! As Mummypig suggests, video everything (I do ) - it is so hard to try and describe, isn't it?

PME Lovely to hear Jack is on the up again

My DS is OK (touches wood) at the mo. His jerks are getting worse/stronger and more frequent but no seizures for a while now, despite tonsilitis, a very nasty ear infection AND his injections. Have another EEG coming up in the next few weeks, hopefully that will tell us more, but ATM things are OK.

FeelingBetter - thank you! Have you got your EEG appt through? Hope it shows good things/an improvement.

PME - you ok at the mo? How's Jack doing?

Well, after a major faff getting hold of the Trileptal - our hosp doesn't stock it, they said it would be in at one point, but it wasn't, blah di blah.
Henry is now on Trileptal + Keppra.
He's only on a tiny dose of T so far and I was going to post and say we've seen no improvement at all so far. Then sat down with Dh and realised we've seen no absences for 2 days

He's still sleeping as much as always so not getting my hopes up or anything just yet, but better than a negative reaction.

We increase the T dose on tues, so let's wait and see what that brings....

JKS, that's great news... to suddenly realise there's been no absences... Fantastic!!

are you switching from K to T ?? if so can I ask why? DS is just switching from E to K. seizures under control, but side effects are horrid.

by the way I'd like to send out some appreciation to all of those who share your experiences on these threads. You all are saving my sanity a bit, that's for sure.

Thanks Lauree

We are going up the doses in T and staying on the max dose of K for now.

When we go to GOSH in Sept, i'm hoping they'll say to reduce the K at least a bit, if not come off totally. I don't like that he's on so much serious drugs. But if it's working with both obv we will stay with both.

I think they will want to see what happens if we reduce the K anyway as a test.

Does it ever feel that your DCs become guinea pigs for them to experiment on??

When Henry was on E his tonics increased loads and it did nothing positive that we could see.
As soon as he started K his tonics stopped so i'm a tad nervous about him coming off that (if he does) that the tonics may come back...

if the K was working, why are they keen to change it?

I understand you about feeling like a family of guineapigs! I have never been so stressed in my life since DS started on these meds. I'm so worried about the side effects they are having on him, he is not the sunny boy he was... he stumbles about and can't even keep his eyes fully open most of the time. I also feel the Doc's don't actually listen to what I'm saying, and seem only concerned with stopping the seizures and don't care about the side effects.

Can agree with you there Lauree. We have seen DS change from being a "normal" chirpy, friendly, alert 3 year old into a moody, "slow", hyper 6 year old We had a right old time trying to persuade them to take him epilim as they just kept going up and up and we kept telling them that not only were the seizures worse, he was starting to suffer at school with his concentration.

I just keep hoping that the next med is going to be the one that works

Unfortunately JKS DSs last EEG showed he has developed Lennox Gastaut Syndrome.
Am suitably gutted, but at the mo DS is still OK. He's still the same lovely DS doing all he can.
We have the new drug for LGS, rufinamide - we have 5 weeks to build up the dose before we know how he's doing on it, but at the mo, he seems OK.
It's hard to stay down for too long with him around, so we are bearing up quite well.
He's squealing at me now in a 'get off Mumsnet and play with me' type way

Hope you are all doing OK x

Evening all

FB - Madmouse had said something that's why I asked, I don't know much/anything about LGS but it sound shit, so sorry (and some ((hugs)) if you 'do' them!)
Glad he is still happy and himself though & fingers crossed the drugs help.

Fatzak - for you about the side effects. there's always the hope about the next drug isn't there....never-ending.

Lauree - the K has worked wonders for his tonics, but not at all on his absences. They have generally got worse over time and the increases in the K doses have had no effect whatsoever (apart from increased eczema, some digestive issues & occasional loss of appetite).
No nods spotted today - that makes for 3 days in a row.....

I often feel the docs aren't listening to me, proved sometimes. one asked me the other day 'is he sleepy then?' i mean WTF, he is always asleep! he is awake 6 hours out of every 24, on a good day. normally wants to go back to bed after 2 hours awake. that i would say is 'sleepy'! and i had been telling them that for months.....ho hum.

But...he has been cheerful today, until he found his blankie and curled up on the floor nearly asleep. so has gone to bed early, no bad thing.

Wishing successful drug-vibes to us all

I think there's more collective xperience on here than in a staff room at (dare I say it) my local hospital, when it comes to how these drugs work

BTW if anyone is having to visit GOSH from afar, please let me know if you need somewhere to stay in London, cuz I live only 20 mins bus or 15 mins taxi away, and I sometimes wonder how families who live a long way off manage the trip.

Lauree - you are right! I know if i ask a question on MN i will find someone who has been there and done it which is so much more valuable than a doc on the end of a phone saying they'll review in a few weeks....

Anyway, good few days are over. Henry had some small nods yesterday.
Then he had about 10 big deep ones today, he'd only been up an hour and a quarter, so i quickly changed his nappy (with him rolling his eyes as he was lying down instead of nodding - not nice to see) and got him back into bed. he then slept for 3.5hrs.

ho hum.

and he increased the trileptal dosage yesterday.

how is everyone else doing?

HOw are you all?

JKS - DS is now very sleepy too, I don't like it but have been through it before when we started the increase of vigabatrin for the IS. We've had a tough week with him. He was very sick Tuesday and Wednesday night and has been screaming crying for hours at a time in the evenings.

He has had an ear infection for a month now, which has just reared its ugly head again. ABs seem to knock it back but never clear it up. He is rubbing at his ear too as he cries so I'm certain that is his problem and it has just coincided with his new medicine .

We had also started to reintroduce milk following a 3 month break due to lactose intolerance, so the poor boy has had an awful lot to be dealing with all at once!
AND he's been teething forever now!

We up the dose of rufinamide on Saturday, so we'll soon see if that is what is upsetting him

No visible decrease in episodes yet, though we are not expecting it at such a low dose

I don't like seeing eyes rolling either. Have only seen that a couple of times so far.

Hope everyone else is doing OK x

FeelingBetter - how are things? teething really doesn't help does it?!

Well our HV came round today (she's a nice one) and saw Henry have his lunch, then have lots of deep nods, then go all sleepy, then go to bed. Not surprisingly he officially 'failed' his development check.
She said he is basically equivalent to an 8month old. The only skill he seems to have kept hold of since then is walking.
x lots

We (the HV & I) agreed for her to put it forward as a referral to the local SN centre.
Though she also agreed with me that we don't need interfering well-meaning HCPs telling us to attend 'sensory' sessions or such like until the epilepsy is under control (however that may happen).
There's no point in us keeping him awake to attend some play therapy to try and develop some skill or other while this is still going on.

I can see that post-op (being realistic here) he may well need help. that's quite scary to admit as i'd like to think of the op as a magic wand, he comes home 'cured' and can catch up with everything as he's suddenly awake all the time.

hey ho, the ball is rolling now anyway.

and as i've found before, talking it through with someone else - esp letting them see H in person 'perform', makes it all so much more real and sad and depressing

2 weeks till GOSH appt.

Bloody hell. will run out of Keppra tomorrow, and I've just been to the chemist and they tell me it's a special order will take 3 to five days. IF that's the case why the HELL don't they tell us up front... most other meds are in stock or on one day order. .

JKS, I didn't realise your son is going for an op... as well as all the medication adjustments. That must be a huge worry for you all x ... How are things going right now? and just out of interest,, if E+K seemed to work well, why don't the docs go back to that?? is there a reason? I was talking to DxP about this, and he says that his eldest daughter was suffering from multiple drops every day until she was about six. Drs in England wanted to stick to a single drug, and just kept upping the dose, but when he and his ex-wife split, she moved to europe where Drs take a different approach and try smaller doses of different drugs combined.

DS is upping his keppra now,and decreasing Epilim. no problems as far as fits go, all seem to be under control but I have noticed some insomnia which I think is withdrawal from the SV. But It is lovely to see my son coming back... his eyes more open, much more with it, although dribbling a load today which isn't so cool in a five year old.

I'm a very proud mum today because my DS who really struggles to concentrate, was in a circle of about thirty people, all who had something to say to give thanks for a lovely weekend we had all experienced, and he listened, he waited for his turn, and when it was his turn, he stood up and he gave a tiny speech. completely appropriate, and very touching. magic!

Ah. Yeah. The Keppra Supply Problem. The problem here seems to be that the wholesaler is unreliable. The 3 days thing is the "urgent" order where the pharmacist bypasses the wholesaler and goes direct to the manufacturer. The wholesaler takes 2 or 3 weeks.

You may be able to get the local hospital to sub you from their stock rooms in the paeds ward. Ours do that for us in similar circs.

Lauree - at lack of Keppra, did you get some in time? Bit like when the pharmacy told me at our hosp that they don't stock Trileptal.....so GOSH has prescribed it on a Wed, H didn't start it until the following Tues, by the time appts had been made and forms filled out.

Not that the Trileptal is helping anyway.

We don't know if H will have an op, it's just right form the beginning we were told try 2 or 3 drugs then talk brain surgery. at the time it sounded so scary that we didn't really ask much more, but now with no improvement from 3 drugs and his developmental problems i'm quite keen on the idea of taking the nasty bit away

I have no idea why they didn't want to try the E+K combo given that that gave him his most awake week in about a year. i will be asking for that to be tried again whether we agree that surgery is probably the way to go or not. while we wait for all the tests we may as well try something that seemed to work before. IMVHO of course!!!

Can you give your DS a groovy bandana/scarf type thing for the dribble? he could be a pirate?! sounds so lovely to be getting him back - ever so slightly , whilst totally pleased for you of course!

I love the story about his speech - fab

r3dh3d - how are things with you?

I'm feeling like i've been bumbling along for months and am now really depressed by it all, all of a sudden, well not so sudden i suppose given the HVs visit.
Finding it very difficult to spend time with mum friends with LOs roughly H's age as they are so darn perfect and developing normally.
Some are more sensitive than others but when they start complaining about their LOs lack of naps or them doing something that H can't/won't/doesn't do i have to really grit my teeth.

ignore me, i'm on a downer atm!

Thanks for the support and advice, JKS and r3d. We did get the keppra, found a really helpful chemist who actually just ordered it over the internet at six o'clock in the eve and had some delivered next day.

I have no idea why the others couldn't have done that!

love the groovy bandana idea...had forgotten, but used to do that with DS when he was a tot with half a tea towel cut on the diagonal. he was swaggering around looking like John Wayne!

I can totally understand JKS how it can make you feel so damned down, and useless, and no-one seems to understand what you're going through....It helps me to cry sometimes. This week I feel fine and dandy , but the last few weeks/ months/... I've felt like crying everyday . I so want to be able to make it better for my son. I look at photos of when he was about 3 years old, and I can see he's a happy kid with a big smile and now, well, in a lot of ways his development hasn't progressed, and he is, well, I think he's angry. He shout's at me all the time, and he demands every second of my attention and it's exhausting and lonely.

Let me share something that happened to me last week... when I was sitting on the grass being all upset about things.

I found a white feather. A white feather all bedragled dirty. you know when you find a white feather your guardian angel has been there watching over you. I was pretty dissappointed to find that my guardian angel had left such a ragged old feather. Bloody typical, I thought, feeling even more sorry for myself. But I sat and stroked it for a while, and slowly slowly it came back together the way feathers do... it wasn't dirty - it had a lovely grey pattern on it. There were a couple of nicks on the side, but on the whole, it was a pretty good feather by the time I had finished looking after it. And, you know, I really think it was a message for me.

when you feel all ragged, think of a bedraggled feather on an eagle's wing. It may look all worn out and useless, but if you stroke it and look after it, with bit of care and attention, you can pull it all back together again and make it back into a good strong feather. The kind of feather that you need to fly. .

well, it's not too eloquent, but maybe you'll see what I'm trying to say, and hey, I feel better after finding that feather.x

Lauree - glad you did get the Keppra in the end, have heard more talk of shortages of it so everyone on it, order it in advance!

I like the feather story

Right, news & progress:

Lots of phone calls to-ing and fro-ing but news re H:

• Tues am, go in and register for MRI
• then go to Epilepsy Development Clinic & see a Neuro-Psychiatrist
• go back to ward for MRI
• go home
• Wed am go in for 24hr EEG (telemetry), stay in overnight
• Thurs come home

oh, & fit in a meeting sometime Tues with the Professor whenever suits us between appointment!
phew!

They are taking us seriously at last and things are moving.
there is a possibility of surgery within 2/3 months.

fingers tightly crossed for good results and fast moving appointments!!!

Oh and i find looking at old videos & photos totally depressing but hopefully he'll get back there one day....

How is everyone else doing?

(btw posted the same on the online forum for E thread sorry!)

Right sod the tea - wine all round

After a long day at GOSH, being sent back and forwards for different clinics I have the following update:

• Developmental Clinic - he is functioning at a 6month old level (apart from his gross motor skills - ie he can walk, though that seems to be getting wobbler )

• MRI - done under GA, he was v upset for a long time afterwards, the Prof & other docs will look at the results tomorrow

• long chat with Registrar & quick chat with Professor (she promised a longer chat tomorrow after she's seen the MRI & some of the Telemetry), he is having Infantile Spasms not drop attacks or atonic seizures, or whatever else we've been calling them.

His IS started later than normal which is a Good Thing apparently, and it appears to stem from his known focal cortical dysplasia, which is also a Good Thing.
He is probably going to be a good candidate for surgery and surgery has been recommended as 'urgent' by the development people.
The Development Prof even half-joked that H couldn't have surgery tomorrow as the surgeon is away.....

We are back tomorrow morning for him to be hooked up for the telemetry for 24hrs. the prof said she'd come by in the evening when there should be enough info for her to look at.

And she wants to change meds too - agrees that the Trileptal is a waste of time and that the Keppra could be brought down too.
We may be starting on something new (IS-specific) from tomorrow.

we just want our DS back, and soon. positive vibes sent our way please

Horrible news, but good you know what you are dealing with (sort of, IYKWIM) and can get on with treatment.
Vigabatrin, prednisolone and ACTH are the 3 frontline meds for IS, all with side effects of course.
It was the vigabatrin (after many months) that finally got the IS under control for DS, but it did make life difficult, as did the prednisolone.
DS (already delayed) had only a slight regression with the IS, mostly he just stayed put developmentally (except for change in muscle tone with the different treatments) but as soon as it was over, it all came back and he moved on.
Do not believe anything everything you google, it never tells the individual story.
Little H can get through this and I'm sure he will.
You have a lot going on at the mo, I hope you are OK.
If you are on FB you can find me thru Madmouse if you want a chat off MN.

I am sorry you are going through this, but finally knowing what on earth is happening can only be good. It's fucking scary tho, so be kind to yourself and make sure you get a break x