//Clobazam anyone?

[Guest guest]

, we (unfortunately) just started Jake on Clobazam tonight. He is

seizing every day and our neuros felt we had to intervene and try something

new. I agreed, but it's so discouraging overall. We are starting on 5mg per

day and working from there, depending on what we see.

Was wondering if you could give me an idea of how long was on

Clobozam and how much he took, and what effect it had. I've read up on it a

bit. Seems like more often than not, there is a honeymoon period for up to

three months of seizure control, then a significant percentage of people

lose control again and go back to square one. Nightmare.

Anyway, we felt we needed to try. Better than a corpus callosotomy I guess.

We plan to exhaust all meds before we go there. Felbatol is next on the

list.

Anyway, any input you or anyone else can provide, I'd appreciate. And

thanks for this very informative posting. A bummer, but informative all the

same.

Barb Swoyer, Jake's mom

Re: Weaning Clonazepam

>

> Weaning after a long period on any of the benzodiazepines (incl clonaz)

will usually lead to withdrawals, which in our kiddies often brings with it

(usually temporary) increased seizures.

> had a 3 1/2 yr addiction to this class of meds, starting with

clonaz, then clobazam, then oral diazepam, then nitrazepam, then back to

oral diaz before they were removed in an emergency setting late last yr.

> The state of ketosis in 's case heightened all his medication side

effects (the binding protein mechanism of many drugs is affected by the

increased acidity that produces ketones causes) and also caused various

nasty toxicity issues, so with behaviour difficulties being a common clonaz

side effect, this is poss why Caden's behaviour may have worsened since

starting the diet.

> The reason why the addiction/withdrawal aspect makes these meds such

hard work to wean, is very logical once you realise the role this class of

meds plays in the brain, and knowing why the withdrawal symptoms occurred

helped me with my resolve to get off them, and survive the (often v

rocky) withdrawal phases.

> For a more technical/detailed explanation you can search at

benzo.org.uk, but the basics behind it from what I have learnt over the yrs

are...

> - The role benzo meds play in the brain is to enhance GABA, which is the

brain's natural neuro-inhibitory chemical. By increasing GABA, the CNS is

depressed, meaning often a reduction or cessation in seizure activity, hence

the reason drugs like diastat and ativan are used for emergency situations

when seizures get out of control or the kiddie is in status.

> Unfortunately though, due to a compensatory process that occurs, the

more 'top up' the brain receives over time through drugs like benzos if used

as regular AEDs, the less natural GABA the brain will produce, leading to a

need for more and more of the med being required to achieve the same

'calming' effect'. This is where the tolerance aspect comes in, and it is

very rare for a drug in the benzo class of meds to not need increasing

peridodically to keep ahead of this compensatory process. This then begins

the vicious cycle that many addicts (including a lot of our kiddies) get

caught up in.

> When weaning, the artifical top up is reduced through less oral

medication being given, and for a period (the withdrawal period after each

reduction) the GABA is therefore left at a lower than usual level. During

the withdrawal phase, the brain gradually starts to produce more of it's own

natural GABA to balance things out again, but in the period in between, the

brain is actually left in a state of neuronal hyper-excitability, which

obviously for an epileptic, is not a good place to be in....

> This is why many people experience a worsening of the effects they were

originally prescribed the med for during reductions, be it in seizures if it

was prescribed as an AED, behaviour if prescribed for that side of things,

insomnia if it was prescribed as sleeping aid, in anxiety if it was

prescribed as a relaxant, and so on.

> Once the brain's own production has 'caught up' after recognising that

same level of artifical top-up isn't there any longer (usually when the

blood levels stabilise) the withdrawal symptoms ease off, and status quo is

resumed, until the next reduction...and on it goes until it is all weaned.

> The problem seizure wise with withdrawing though, is that if an

epileptic's brain gets too 'over-excited', you can get the seizures

begetting more seizures scenario, and sometimes an intervention is needed to

stop that seizure withdrawal cycle. Like even though the GABA levels may

have stabilised again (the time for this to occur varies depending on the

individual benzo's half life), the brain is caught up in seizure mode, and

this is often where many prescribing mistakes are made, like the assumption

by many Drs is that this is a sign the person 'needs' this med put back up

again - which is where we ran into trouble with .

> Not everyone will have this happen, some can keep on withdrawing the

meds after each stabilisng period till it has all gone, but in our case we

had to intervene more often than not, usually with a benzo 'cousin' (like

when he was on nitrazepam, we used diaz) for long enough to allow the

seizure excitability cycle to come to an end, (24-48 hrs in his case) but

not for long enough to allow an addiction to the intervening med to then

form.

> You may find that Caden has none of the withdrawal problems that we

experienced with , his turned into a fairly extreme case, where he

went past the stage of tolerance of the benzo meds to 'in'tolerance' that

eventually ended in an emergency cold turkey withdrawal in PICU. Which was v

dangerous, but we were left with no real choice. Had we been able to, we

would have continued with 10% decremental reductions (as recommended by Prof

Ashton at that benzo uk site) till it had all gone.

> Short answer yes, we did see seizures and behaviour worsen during

each reduction,

>

>