Re: //Clobazam anyone?

[Guest guest]

Hi Barb

Sorry Jake is having such a hard time. We used Clobazam, if thats

frisium which I believe it is, years ago. Jess would have been about 2

or 3. Never helped the seizures, nothing did, but I did notice she got

very shaky on it. First thing in the morning was the only times I would

notice it, she would sit on her little potty and shake all over

uncontrollably. Other than that, nada

Hoping and praying it works for him

Barbara Swoyer wrote:

> , 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,

> >

> >

>

>

>

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