Those on clobazam/frisium

[Vanessa]

Am wondering if any of you take this as a night medication only? Dr ordered a 3 week titration  ending with 5 mg in am/7.5 in pm.....We started week #2 this week with a small dose just 3 days ago. The first week she seemed fine (5 mg night only), (woke up super charged, etc) but week #2 seems a bit loopy at times (and I even am titrating up to the suggested dose by a few days-gave her 2.5 mg in am and not the full 5 mg yet)...

I am just wondering if it takes more than a few days to adjust this med...or  if it can be issued as a night med since that is the problem?

I should also mention we are weaning back depakote (still at 250 mg in am/375 pm) eventually to go to zero and 100 mg zonegran at night only(already there).  So in essence we are on 3 (uggh) to get to being on zonegran only and then I am not sure the plan for the length of time on frisium...

However, I still wonder if it is the underlying problem is  zonegran to begin with causing these issues to pop up because it all started w zonegran (our main med) when we started w zonegran....

I

[Marnie]

It always takes Ana two weeks to settle in to a new drug or a changed dose. Is it daytime hyper or insomnia that's the problem? Ana had some pretty extreme trouble with both when she was on clobazam? We used respiridone to counter day problems and melatonin to help her fall asleep.

I hope it settles down for you.

[Vanessa]

Hi thanks...no...actually she does go right to sleep. I find in the am the first week she got up from bed really early (not hard to drag out of bed). NOw she is zonked when the alarm goes off. She is a bit more hyper but not really..but the issue I had in the day she is  not as quick..Mind you ....I have noticed this problem since beginning zonegran (september) -AND we are still weaning depakote..it could be all of this...or Frisium maybe enhancing anything bad..I do hope it settles....

But do you have a day dose or just a night dose>?

[JMO]

I think the 1/2 life of Clobazam is too short to be administered once/day, it is my understanding that it has to be given twice/ day to be effective. 
We are resisting clobazam right now, about to try neurontin first. 

[Marnie]

Ana was twice a day right from the start of taking it. Sorry I'm not much help then, Ana's never been zonked by anything but if you need help dealing with unbelievable hyper/violent - I'm your girl LOL

good luck

[Vanessa]

Can I ask why you are resisting clobazam or the preference for the other drug?? Just curious...tx

Btw many are on only a night dose of clobazam so I am unsure why we are on 2.....I am going to ask him but he is not in office and I don't want the covering to make that decision ....many have had luck w clobazam to reduce night EEG....

@marnie l I will let u know or remember that....lol

[Marnie]

My understanding is that it's a adjunctive therapy so if your child is having more seizures at night it makes sense to take it only at night? Ana's were all over the place so that's why she took it twice a day.

 

and FWIW, never let your doctor suggest it as monotherapy - that's not what it's labelled for. Ana's first neuro was an ass and argued with me about it. After she'd been on only clobazam for 2 weeks she went into a 6 hour status and spent 5 days on life support in ICU, they didn't think she'd live.

[Vanessa]

No he does not have it lined up for mono therapy... From what I can tell it seems he does not plan on keeping her on it long term.....She has a bad night EEG e.s.e.s. And he is just trying to reduce the night stuff ....She is on zonegran (cannot take sodium channel meds., depakote affected her liver, etc)so here we are at zonegran....so it is clobazam and zon.

I am giving it a bit more time to see about asking why daytime too, and in the end I am thinking of going back to keppra....we had success n that for a long time....if he wants to keep clobazam as well fine but. To me ever since zonegran enter our lives it ha not been fun...
He did mention I could go back to keppra ..I wonder if it will work as well second time around.

The reason she came off of keppra to begin w was that she was having a few breakthroughs as well as some grumpiness (unusual). That is when we found the e..s.e.s but it was not affecting her for the most part. Therefore he tried lamictal and we found out she has that scn1a. S she has had a lot of med changes in the past year for someone who does not have alot of seizures. She also tolerated well meds. Overall but this is the first time I have seen her have hard time (mentally) on a drug.

Btw what made her have a status due to mono clobazam??? Thanks for your info. I have 4 yes experience w this...but still sadly learning.....

[JMO]

Sure- we're resisting it because my daughter has shown that she is susceptible to behavioral side effects. She had Keppra rage and behavioral issues on Trileptal. Clobazam is another med that can potentially cause these. 
We also have tried several other meds in the benzodiazepine family and found them to be too sedating and not work particularly well so we don't have alot of confidence that it will work for us, however we recognize that may not be the case for others. This could be "the one" for many. 

Vanessa said:

Can I ask why you are resisting clobazam or the preference for the other drug?? Just curious...tx

Btw many are on only a night dose of clobazam so I am unsure why we are on 2.....I am going to ask him but he is not in office and I don't want the covering to make that decision ....many have had luck w clobazam to reduce night EEG....

@marnie l I will let u know or remember that....lol

[JMO]

Clobazam is supposed to be a good drug for ESES, that's probably why he chose it. 

Vanessa said:

No he does not have it lined up for mono therapy... From what I can tell it seems he does not plan on keeping her on it long term.....She has a bad night EEG e.s.e.s. And he is just trying to reduce the night stuff ....She is on zonegran (cannot take sodium channel meds., depakote affected her liver, etc)so here we are at zonegran....so it is clobazam and zon.

I am giving it a bit more time to see about asking why daytime too, and in the end I am thinking of going back to keppra....we had success n that for a long time....if he wants to keep clobazam as well fine but. To me ever since zonegran enter our lives it ha not been fun...
He did mention I could go back to keppra ..I wonder if it will work as well second time around.

The reason she came off of keppra to begin w was that she was having a few breakthroughs as well as some grumpiness (unusual). That is when we found the e..s.e.s but it was not affecting her for the most part. Therefore he tried lamictal and we found out she has that scn1a. S she has had a lot of med changes in the past year for someone who does not have alot of seizures. She also tolerated well meds. Overall but this is the first time I have seen her have hard time (mentally) on a drug.

Btw what made her have a status due to mono clobazam??? Thanks for your info. I have 4 yes experience w this...but still sadly learning.....

[Vanessa]

@ Jill...yes you never know w these meds affect each kid it is very true. We had trouble (miserable)w trileptal ( in addition to more seizures)...lamictal was great for us ( sadly had to come off bc increased seizures again)...yet keppra was no problem did not eve need b6 a all...

I am not sure yet about our next step. I wish you luck w that other med let us know....tx

[JMO]

It really is interesting how different are peoples experiences. 
We had an awful experience with Lamictal. 
We are considering neurontin because our Dr has seen success with it in patients with dysplasias. We haven't been able to locate one in imaging but he strongly suspects there is one we are not able to find. 
VEEG next week- 5 days inpatient the week before Xmas. Ugh. But we are specifically interested in her night EEG as our Dr had suspected ESES but with the benzos not really working for my daughter we are reevaluating that potential. 

It seems like a never ending cycle. Wishing for the best for your family as well. Keeping your rollercoaster in my thoughts as we ride ours. 

Vanessa said:

@ Jill...yes you never know w these meds affect each kid it is very true. We had trouble (miserable)w trileptal ( in addition to more seizures)...lamictal was great for us ( sadly had to come off bc increased seizures again)...yet keppra was no problem did not eve need b6 a all... I am not sure yet about our next step. I wish you luck w that other med let us know....tx

[aymee robinson]

My daughter is currently on .5 mg of clonazepam twice a day and 50 mg of zonegran at night. We are building up the zonegran to get to 200 mg. Once there we will wean the clonazepam. She had horrible fits of rage at first on the clonazepam but those calmed down in about 2 weeks then we started the zonegran. She's been on it for 5 days now and I've noticed each day the "med moods" get a little worse. She cried for 4 hours last night and most of the day today.