What do you know about Clobazam?

[lou031205]

I took footage of DD1 in meltdown to the Consultant today, and when he examined her, he noticed tremor, which he said he hadn't seen before.

In the light of her deteriorating behaviour, increased nocturnal enuresis, and the tremor, he wants her to have another EEG to look at nocturnal seizure activity, and is starting her on Clobazam.

She will start on 2mg twice a day, then 4mg, then 6mg (she is 15.2 kg). He will see us in 6 weeks time.

Any opinions?

it was the first one my son was put on if i remember rightly, it is a good generalised one for seizures - it didn't work for him but i know others that swear by it.

hope it works for you and she settles on it.

Sorry Lou, can't help - it is possibly the only drug we haven't tried.

I am glad your footage is getting you somewhere though, but it is scary stuff

We were supposed to have a 24hr EEG to look at DSs activity during sleep. thankfully he ob liged by falling into a very deep sleep after about 40 mins so 4 hrs later we were out. It did show that his EEG is horrendous during sleep - worryingly abnormal but it helped us add a (now abvious 2+2) to realise why he has never slept for more than 4 hours at a time, and why he sometimes needs to have a 'sleepy' day.

The EEG led to numerous drug changes and a referral for the keto diet.

I really hope you get good news and, at the very least, some answers.
had a quick google of clozabam and found a forum discussing it where the majority of the responses were very positive.

someone far more helpful than me will be along soon, I'm sure.
Rivens probably in bed now, so keep it bumped for the morning for her, if she is about.

Lou, are you on SKITUK? There are LOTS of epilepsy experts on there, and though it's much less active than here, it is a very helpful and supportive place.

Hi feelingbetter, I am on SKITUK, but didn't think to ask there Thanks

ds2 had clobazam for about a fortnight or less when he first started having seizures. It was only until the sodium valproate dose was ramped up enough to start working. his energy levels were up and down (hyperactive to drowsy) but I think that's the way he seems to react to any AED.

sorry if not very helpful

my sons been on it for about13 years now amongst others,it was given to steady up a tremour, but it helps control his E as well.

in the last year we have also been using it as an emergency med. if we have series of smaller seizures instead of tonic clonic where we use epistatus.

myra

That's really helpful, thanks

Apparently it can take up to 1 week to come in because it is a Special Order Drug.

Thoughts about Clobazam...

1. It is known in our house as "Clobbers 'em". Can cause drowsiness. We tended to give at bedtime. We learned not to give it in the bath as unconscious children tend to drown.
2. It is one of the benzos that tends to be prescribed/used differently according to whether it is for long or short term use. There is a tendancy for tolerance and addiction long term. That sounds waaaaay more alarming than it is - just means it gets less useful over time, and if you're on a "proper" dose more than a few weeks (and I'd say 6mg is borderline at 15kg ime) then it can be a bugger to get out again. Pardon my French. It took us 14 months to wean DD1 off it slooooowly. Any faster and she had withdrawal seizures.
3. It's nice to use it because it's another fallback emergency med, and once you know it works for your child it's another tool in your toolkit at Ambulance O'Clock.
4. It is - of course - foul tasting and, annoyingly, doesn't dissolve well. You can get the pharmacy to make up a solution for you which is helpful if you can't get the tabs in. The solution will need to be written on the scrip by the GP. There are 2 sorts of solution: one expires in 30 days and one in 3 months. It's essential to get the 3 months type on the scrip because they often take a couple of weeks to make the damn solution up, which is pretty useless if the thing then expires two weeks later. So if used like that it is what I call a "lead time" med and you should never let yourself have less than a month's supply in hand.

Clobazam is a no no here! DS is a horror on Clobazam and exhibits some really odd behaviour. For example he had a spell of just weeing anyway on it, then he started pinching DS1's pull ups and stashing them under his bed He has violent rages on it - biting, punching etc and is just a generally miserable boy. We don't use it anymore as he seemed to develop a tolerance to it - back in Jan they tried it as his maintenance med but with no luck.

We are back today after 10 days in hospital with DS's epilepsy. What a nightmare. Been in HDU on a midazolam infusion, had phenobarb infusion and now back on steroids! Roll on next Monday when he starts keto diet.

Sorry for hijack

Fatzak Not Fair.

fingers crossed for Monday and a new start x

Oh Fatzak, that's grim

R3dh3d, I have already come across the lead time thingy. Consultant gave us our proforma on Weds (they don't prescribe). Straight to GP. Prescription ready on Thursday. Have been told it could take a while yet to actually get the syrup. I just hope it is the 3 month stuff. 1 month sounds a nightmare. We already have to order DD's Epilim every 3 weeks because she is on 14 mls a day.