Please someone advise me,major hyperactivity in Ds, on 3 anti epileptic drugs...

[proudestmummyever]

Pls, can someone advise me what to do?

My ds, now 3 has been recently put on vigabatrin, his dose was upped ths morning, and has been every week for like 3-4 weeks, but two days ago he started being MAJORLY HYPER, to the point he cannot sleep, he has had this before after starting a new med, or increasing a med

He is currently on Nitrazepam 3.5ml's morning and night(when tried to reduce ths to just 3ml's the seizures were awful, so was put bk to 3.5ml's), he is on topamax 75mg morning and night, and nw Vigabatrin which has worked wonders the week he was put on it, so obv I am scared if the dr reduces this then hs spasms and seizures will return, anyone had ths with their dc? Did it stop on it's own or what did u do? Gonna call paed in morning, I have now went 2 nights without sleep and tonight my mum and dad took him to gimme a break and he is same at their house, I feel so helpless, he is demented, and he is finding it physically impossible o stay still for a second

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Was really hoping I'd have some replies this morning, pls can someone have a look? Riven, ru around? xxx

sorry I can't help much. I hope Riven or someone else can help. All I could find about vigabatrin is that hyperactivity was the most common side effect in children (11% were affected)
www.med.nyu.edu/cec/treatment/medications/side_effects/vigab.html

Thanku claig, I have read tht also, just going out my mind here x

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Thanks claig, appears no one is replying

We gave up on the topamax as it wasn't helping at all and vigabatrin is one of the few we haven't tried! Sorry can't be of much help Hope that you get it sorted - we are having nightmare at the mo with DS's epilepsy - just back from another stay in hospital where we have basically been told that we will just have to sit out his non convulsive status as nothing (ie the three drugs they have tried) will work and they don't want to try anything else Now that he is showing signs of LGS it seems that they are giving up on him already.

DD1 is on Valproate, Topiramate, Keppra, Vigabatrin. Not at all hyper. No particular sleep issues, anyway. I'm suprised he's hyper given the Topiramate dose - it's fairly sedating/chilling and 75mg is a fair dose for a 3 year old.

Thoughts - nitrazepam, sounds like a benzodiazepene. How quickly did you drop to 3ml? It may have been a bit rapid, if they've been on benzos for a while sometimes you have to wean off very very slowly. It took us 1 year of reducing by 0.25ml every 2 weeks to get DD1 off clobozam. They tend not to advise you to do that, but it's generally because they think parents are too dim to manage that slow a withdrawal.

Vigabatrin - how much is he on now? DD1 needs very little (considering what else she is on); are they still increasing it because he is still having seizures or just because they have a "standard dose"/kg for vigabatrin and they want to push him up to it? If he's stable on what he was on last week, I'd question the increase, definitely.

Hi guys, thanks for replying!!

Fatzak I feel the same , the Dr's had told me previously tht Jack has intractable epilepsy and very unlikely that any med will control it

We then were referred to Yorkhill Children's Hospital recently(they started him on the Vigabatrin) and he has only two tiny spasms since the week he started...Jack has been on nitrazepam since he was 10 mnths old, he turned 3 on 2nd March, they did drop the nitrazepam quite quick, and that was from 7ml's!! Over a period of weeks, not many I don't think...

Jack is nw(from yesterday) on 15ml vigabatrin(twice daily), it's two sachets into 20ml's water and give him 15ml's of tht. I have since read online tht the most common side effect reported in kids on Vigabatrin is Hyperactivity, Jack was started on the vigabatrin on 22nd Feb, started on one sachet in 10ml's water, but to give 3ml's of it morning and night, for 7 days, then 5ml's twice a day for 7 days, then 10ml's twice a day for 7 days, and now is on 2 sachets in 20ml's water and 15ml's twice a day.

His Vigabatrin went up to the 15ml's yesterday, but he started the hyperactivity 2 days before the increase, Yorkhill are just upping the Vigabatrin til it's at standard dose, yeh, we are bk there on the 30th, if ths Vigabatrin didn't work then they were gonna put him on steroids, and start the ketogenic diet, but the Vigabatrin has worked brilliantly, and I just pray it continues to, feel like I am getting my wee boy bk again, he is much more alert, stronger at staning(while I hold him), sitting himself up again, and being vocal again, not talking, but trying to vocalise xx

Sorry to hear about yr ds fatzak, hope he is doing a lot better, meant to put tht on my post.

Wanted to add, we have also tried Epilim, lamotrogine and keppra. xx

It had the opposite effect for us (and did nothing to help ). DS had been on the steroids for IS before the vigabatrin - now that was a mare, constant wakefulness, screaming, eating - horrible. When we started with the vigabatrin, he lost all muscle tone and as the doses increased, he slept more and more and more. We stopped it after his first tonic/clonic seizure and went through a lovely purple patch for about 6 weeks - no spasms, no seizures and our little fella returned.
That was about this time last year.

I hope it continues to work for him PME and that you can find a level that keeps the side effects in check.

We are now weaning topomax and starting keppra to tide us over till we can start the keto.

Thanku feelingbetter, aw I know, nearly every drug we try Jack has went hyper, BEYOND hyper...

aw go are there side effects like this with steroids too?

You sound like you go thru exactly what I do with yr ds as I do with Jack, it's bloody awful, I hope we are on the road to success nw, currently Jack is sitting in hs buggy VERY HYPER, making grunting noises constantly, and cannot sit still, he has just threw up everywhere, so meds are all up, and he was bk in bath again, poor wee soul xx

OK, well Vigabatrin is (currently) the miracle drug for us as well - we're on 500mg (ie one sachet) twice a day and that is plenty. DD1 weighs 20kg atm and is usually on pretty high doses of meds, they were expecting her to go to 2 sachets twice a day and maybe as high as four sachets twice a day. But our NeuroPaed is very good at giving me (quite complicated) instructions for ramping up or weaning off meds that let me decide when is enough, and stop. I just send him an email letting him know what I have decided, and why. So when 500mg stopped the seizures like flicking a switch, we stopped there. So from your POV we're fine on the equivalent of your 10mls, and I'm guessing my DD1 weighs about half as much again as your DS. I'd definitely talk to them about dropping the dose back.

Re: steroid side-effects - the main problem is the monitoring, blood pressure at a minimum, and of course you can't be on them long, it's an attempt to break the current cycle or to tide you over while you put in a med that takes ages to take effect. The main side-effect was weight gain for DD1.