Barb - Clobazam anyone?

November 21, 2004

Hi Barb,

I'm with you, I think I too would trial all the diff meds before a corpus

callosotomy, and yeah, benzos can get our kids into a cycle that can cause a

heap of problems, but when the chips are down, we don't always have a choice do

we

Having been to hell and back with this class of meds though, I have to say

that if it were me I would prob go down the felbatol track first, reason being -

if the clobazam works, as you say below, the problem is that apart from being a

fairly sedating and dulling med, it doesn't usually work for long, meaning,

then, what do you do - keep on increasing and increasing? or go down the road of

trying to wean it, (which of course then brings it's own set of problems) and

look at another med altogether, which in your case looks like would be the

felbatol. Trying the felbatol first would therefore prob cut out that in between

step with the clobazam which I am worried may bring with it more problems than

anything else, esp eventually weaning it, whether it works temporarily or not.

I haven't had any personal experience with felbatol, but it was next on our

list after topomax, so I dug around a bit while was in hosp late last yr

to see how I thought he would cope with it.

And having read up a bit on it, I think I would have agreed to it. It has

shown success with a couple of other kiddies with 's MAE syndrome, ( so

with the drops, myos, absences etc) and I know the aplastic anemia risks etc

associated with this one are bloody scary to contemplate, but from what I have

seen, this is a relatively rare complication now that everyone is so aware of it

- like I'm pretty sure most of the previous cases were before it had been

adequately trialled, and before the safeguards of regular blood testing were put

in place to prevent the nasties occurring.

Dunno, I'm sure you've weighed up the pros and cons of both choices, and it's

a helluva lot easier for me to comment on when I'm not the one going thru what

you are right now with Jake.

Anyways, re the clobazam and - he was um, 4? I think when he was put on

it - it replaced the week long clonazepam trial that had turned him nearly

psychotic behaviour wise - which was v scary with a 3 mth old younger sibling in

the house

We gradually increased the clobazam up to a level of 30 mgs, at which point he

was verrrry drunk, ( so he was slurry, unsteady and drooling) still with no

seizure control, (so maybe I'm not the best one to ask, we never even got a

honeymoon with it...) if anything, worse than before, I think because it was so

sedating, ie - more of a seizure trigger than a prevention in 's case. He

was on depakote as well though, and I think this made the sleepy/sedating side

of things even worse, as both are CNS depressants. So the decision was made to

wean the clob and as with all our benzo experiences, he improved dramatically

after each reduction, only to have the dulled/seizure stuff return a couple of

weeks later as soon he got 'used to' the next lower level.

About half way through the wean, he got his first dose of the chickenpox, and

all hell broke loose seizure wise, meaning a hosp admission, with mega doses of

emergency diastat to try and bring him out of the status the pox had put him

into.

End result, by the time the chicken pox had run it's course, he was well and

truly addicted to the diastat, so rather than keep him on two benzos, he was

sent home on a replacing dose of oral diaz - 30 mgs, and away we went with the

weaning **** again. Had that down to 7 mgs by the end of the year, (by which

time he had started keto with daytime control) only to have him get chicken pox

dose # 2 - another hosp admission, this time needing a midazolam infusion

(another benzo) that he was left on so long for, he again had to be weaned off

orally, and the 7 mgs diaz he had been on previously, was replaced with

nitrazepam - the very worst one out of all the benzos for . (horrible drug

- don't go there if you can help it...) Took a yr to nearly wean that one, we

were just about there - only to have go catabolic with a total loss of

diet seizure control, (I was so busy focussing on the med side of things the

diet got away from us) back in hosp, and you guessed it - back on a midaz

infusion...

Needed orally weaning off that again, this time he was put on 60 mgs (ugh)

diaz as he was so tolerant to these meds by then. The rest I think you know -

couldn't wean it quickly/safely enough to keep up with his by then intolerance,

landed in hosp in Nov 03, 8 mths later, with what I still believe was a full

blown CNS toxicity brought about by the prolonged use of high dose benzos

(exacerbated by sky high ketones as a result of recently re-introducing

carnitine).

This time when a midaz infusion was tried, it put him into full blown tonic

status, he was just totally past being able to have these meds used by then,

(tonic seizures are the ones that often appear as a paradoxical seizure response

to benzos, so be on the lookout for these) and so he was whipped off all the

benzos (the infusion and his regular diaz AED) and put in the coma, with his

notorious nightmarish 2 mth hosp admission.

6 weeks after cold turkeying the diaz, he was started on rapidly incremented

topomax (I can't remember, have you tried this one yet?) pushed to a therapautic

limit within just 5 days in an attempt to break the status (which was at that

point probably from abruptly stopping the diaz) , and a week later was his last

seizure that we have seen in nearly 11 mths.

K, so that was prob way too much information but I guess I'm saying that

as you can see, I feel that getting sucked up into the benzo cycle in our

case possibly wasted 3 long yrs of potential seizure control from trying either

a diff med like topomax, or total control from the diet without having the

benzos there, (I still don't know for sure which one is responsible for his

current seizure control, I kinda care, but not overly... that I always felt in

my gut were preventing complete seizure control from ketosis. So I am horribly

biased, and prob a bit over-eager to warn against them as AEDs, but seeing your

kiddie suffer through seizures every day is not a place where we worry as much

about the long term ramifications. And - there may be none with Jake, the

clobazam may be his med of choice, with none of the **** we experienced here.

I would caution about keeping on pushing it higher and higher though, if it

works, it usually works fairly quickly, if it doesn't, get him off it asap to

prevent the withdrawal/wean being too hard. The longer they are left on them,

the harder it is to get them off, more so than any of the other AEDs. And try

and space the doses as evenly as you can, fluctuating blood levels with these

meds can bring about mini 'inter dose' withdrawal seizures, which can also arise

btw once tolerance has developed - the period where natural GABA production has

slowed down, leaving an inbalance between what is being giving orally to top it

up.

What else - nothing probably except to say the very best of luck, maybe he

needs this current cycle 'breaking', and the clob may well be the one to do it.

Let me know if there is anything else you need to know,

----- Original Message -----

From: Barbara Swoyer

, 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

November 22, 2004

Well, I knew I'd get a thorough answer, thank you. We decided to try

Clobazam over Felbatol first using a very scientific method....that is, we

had purchased the Clobozam in May (not legal here in US, only Canada, so

have to get it via some suspicious route in NYC) and it's been sitting in my

closet. We've been going back and forth between that and Felbatol, and the

neuro finally said, " as long as you have it, use it, and if that fails,

we'll start Felbatol. " Maybe I'm just tired, but it made some sense, so

here we are.

Of course the phone just rang (I put J. on the bus 30 min. ago, no seizures

this morning). He slept half of the way to school, which is very unusual,

and just had a drop as they pulled up. Great. I guess we'll give it a week

and see what happens. I'm aware of the addicitve nature of the benzos, we

did Klonopin for a few months as an " emergency " measure pre-diet, and it was

the first med we weaned.

Topomax is another I've been very hesitant to try, mostly because of the

risk of cognitive regression (don't need that!) and as a combo with the

diet, and because Jake is such a long term diet kid. But, we would also

try that before a corpus callosotomy. I guess we'll do Clobazam, Felbatol

then Topomax if we are going down the med trial path.

I AM cautious about how high I will go, we've started him on 5mg, very low

dose, and his max is 40. I am the sub-theraputic dose queen here in Boston

if you poll the neuros, higher doses have never been a plus for us. So, I'm

med/dose conservative.

Jake is on Depakote as well, caught your comment there, but we are planning

to wean that if we have any success w/ Clobazam, and he's only on one