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Re: MMC/Clobazam anyone?

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Thanks MMC. I guess if there was anyone it worked for they wouldn't be on

here! LOL/Sigh.

How is Jess? Is November a " month? " Seem to recall it is. If so, holding

my breath for you.

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,

> > >

> > >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a last

> > resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

> > professional keto team!

> > Subscribe: ketogenic-subscribe

> > Unsubscribe: ketogenic-unsubscribe

> >

> >

> >

> >

> >

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Shhhh.......so far, so good :)

Actually we have had a few strange incidents where we show all he** was

going to break loose but........perhaps that was all we will get. Yup,

hope does spring eternal LOL

Barbara Swoyer wrote:

> Thanks MMC. I guess if there was anyone it worked for they wouldn't

> be on

> here! LOL/Sigh.

> How is Jess? Is November a " month? " Seem to recall it is. If so,

> holding

> my breath for you.

> 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,

> > > >

> > > >

> > >

> > >

> > >

> > > " The Ketogenic Diet....a realistic treatment option, NOT just a

> last

> > > resort! "

> > >

> > > List is for parent to parent support only.

> > > It is important to get medical advice from a

> > > professional keto team!

> > > Subscribe: ketogenic-subscribe

> > > Unsubscribe:

> ketogenic-unsubscribe

> > >

> > >

> > >

> > >

> > >

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