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Baby Sam

Clobazam

Topic: 

I was wondering if anyone has tried Clobazam.  If so, what are your experiences with the drug?  We are going to start this next week.

Comments

Medicine

We have not tried this exact medicine but Hayden has been on other medicines in the same family like klonapin and Tranxene.  The Tranxene seems to work pretty well for him.  We had to add it to our other medicines of Keppra and Depakote to help in controling his drop seizures.  The only bad side effect we had at first was him being tired all the time  but that went away within the first week or two.  Otherwise it seems to be a good class of medicines to work with.

Take care,

Michelle

Re: Medicine

I have been recommended this particular medication. Also being recommended here in place of this med is keppra or tegetrol but I am getting a report and I will see what is said. I read another med and that has severe side effects and I did not like that one. I have received severe side effects on the last two meds and  I am wary. I have found one that works for me, but that is not a continual daily med.

This thread sounds positive about it - 6 other meds either failed or worked for a short period of time and then stopped working and I have been moved onto others. I has rash from one.

Re: Medicine

m campbell  Ive just been on this med for a month or so and am having side effects not oncommon for me !! most of the meds do this with me but i try them and hope for the best this and the last one lacosamide made me for a better word high not able to walk without falling !!they have cut me back on it and go slow i have a vagus never stim.that has worked well for me when i can get to mag fast enough which is most of the time .

Re: Clobazam

Hi, Myson has just started on this medication after being on Epilim for the last six months, what are your experiences please as I am hoping that the side effects arent as bad on this one.

 Thanks

Angela(mother of Robbie, 3 years old)

Re: Clobazam

Hi:

I was on Clobazam and Lamictal for six years before my body got too used to it, it worked out really well--I switched to Keppra and Lamictal and it seems to be working too.

Teresa

Re: Clobazam

My son has Myoclonic Seizures and he has been taking Depakote for a few months when doctor decided to add Clobazam to it and withing 2 weeks his seizures stoped, so basically for us Clobazam was it. He has been seizure free for little over 2 months now. He is a little agressive and irritable since we addedClobazam but I can deal with that as long as he dosn't have seizures.

Good luck.

Re: Clobazam

My son (3 y.o at the time) started clobazam last summer (2009) in combination with his tegretol.  We have had pretty good success althought it was a really hard start for him.  the cloabazam made him so dizzy it was like he was drunk.  He slept a lot and was pretty fall-down dizzy for about 6 -8 weeks until he got used to it.  Now he is dizzy once in a while, but not often and it is controlling his seizures better.

Re: Clobazam

 Hi my daughter is has been on clobazam and number of other medications and in my opinion she has been doing very well.  We are going to start a new medication called Steripentol next week. 

Re: Clobazam

My 20 year old son developed epilepsy 1 1/2 yrs. ago as a result of encephalitis. Since then he has been on about 10 different AEDs, none of which would fully control his seizures. About 2 weeks ago one of the neurologists suggested Clobazam, I had to order it from Canada because you can't buy it here in the U.S. They stopped the Klonopin at the same time he started the Clobazam because they are in the same family of medications. Once he got up to the theraputic dose of Clobazam he has had only one mild seizure and two aura's over the past two weeks , which is a huge improvement for him. Besides that, it's as if he has come out of the fog of Klonopin. He stopped the drooling, his memory has improved dramatically and his thoughts and words come to him much quicker and easier. Clobazam has made the most positive change in our lives since this whole thing started, and I just hope it continues and he doesn't become resistant to it or something. However, the one thing I have learned throughout this ordeal is that everyone responds differently to each medication. That's what is so frustrating to everyone involved, and each new drug takes months to see if it will work or not. We haven't noticed any negative side effects from the Clobazam ,other than the fact that your insurance won't pay for it. I don't care though, I would pay anything to keep him seizure free, so I'll just find away to deal with the cost. Good luck to you.

Re: Clobazam

We are going to be starting Clozabam. My 17 yo daughter has been on 7 different AEDs. If they helped to control her seizures, she would develop sign effects that would make taking them impossible. Our biggest one has been reoccurring neutropenia. When you are taking three meds at once, it is hard to pick out  the offending drug at times. Em struggles daily with cognitive issues and other side effects. Having epilepsy is not easy. Our daughter has had a very difficult time coping with the changes that it has brought to her life. Em was diagnosed with epilepsy two years ago. So we are extremely hopefull that Clozabam will help.

Re: Clobazam

Hello. Thanks so much for your story on frisium/clobazam. My wife's Neuro recently talked to us about it so I saw your story as part of my research on the med. I was actually more intrigued with the story about your son as about a year and a half ago, my 35 y/o wife began having seizures out of the blue because of meningitis/encephalitis (docs still aren't sure as ALL tests & re-tests have been normal/negative). We've always had some semblance of hope that this may just go away as mysteriously as it arrived, but our hopesmget dashed with every seizure/new meds. If you don't mind me asking, are your son's neuro's telling you that he'll have. Tis for the rest of his life? My wife's Neuro is reluctant to call it epilepsy but rather a seizure disorder. Thanks again for your story.

Cheers,
Dom

Re: Clobazam

My son had viral encephalitis 3 1/2 yrs ago we have been on so many different AEDs never fully controlling his seizures. He is currently on Lamictal XR and he seems personality wise the most like himself. We are also on klonopin but he seems to chew everything and do weird things that I can tell messes with his frontal lobe. Was wondering if you are still on the new med and how it is working.

Re: Clobazam

Hi im new to this site, my son (now 2yrs) started having seizures when he was 9mths old, they have tried him on  epilim which didnt work and so weaned him onto tegretol which was improving up until last week where he went from having only 1 to 2 seizures a week to suddenly having 8 to 13, our neurologist suggested we take clobazam  just 5mg at night just for 1 week to allow him and his altered dose of tegretol to catch up,

Re: Clobazam

I have been on Clobazam for almost 10 years. My epilepsy started in my fourties. I have used this medication with no side affects what so ever. I only experience mini seizures (3sec.) about 4to 5 times a year. I only get a funny feeling that does not disrupt my activety at all.

Good lick

Re: Clobazam

We started this drug in late May 2011 and have found it to be "THE" drug for our 16 year old daughter. We stopped Klonopin but still remain on Felbatol and Banzel.  Klonopin was making her so tired and negatively affecting her ability to think. We have seen only two short tonic seizures since starting this (3 months) and maybe one or two absence seizures a day. This is amazing since we were having tonic seizures in clustures of 5-6 at least twice a day and just didn't count the absence ones (they seems benign compared to the tonic ones) but there were many.

We did try Sabril and saw zero improvement but it did make her angry while taking it. Glad there was something else to try!

Lauren was out of school much of last semester and often combative with me.  Now she is thrilled to be going to school, doing great cognitively and quite a delightful child! KNOCK WOOD!

Lisa

Re: Clobazam

My son has been using clobazam with phenobarbital for about a year and has been seizure free. He has had seizures since he was 18 months. He is aggressive but that is better than having seizures, and for the most part he can live a normal kid life. He is in school now in kindergarten and our stress level is down, because he is seizure free. This is awesome! I highly recommend this for your child if he is having seizures.

Good Luck!

Re: Clobazam

My son has been on Clobazam for about 18 months (he's 15 years) - he's at 30 mg BID and while it did stop the myoclonic clusters he was having every morning, it has done nothing for the tonic clonic seizures he has daily.  Our neuro didn't expect it to do anything for his TC's though.  We've been getting it from Canada the whole time, so I am glad to see that it is now available in the US (brand name Onfi) - though I've been told that we should keep getting the generic from Canada because his Katie Beckett Medicaid will not pay for it until mid-year, probably (brand names are SO EXPENSIVE).

Re: Clobazam

i have a six month old baby girl ...she started having seizures at 7 weeks old...and was diagnosted with a seizure disorder......her neuro put her on phenobarital...is started to work for 3 weeks,then she started having diff kinds of seizures...so we went back and she started her on frisium/clobazam on top of her phenobarb...so she is now takin 12 mls of pheno a day as well as 5 mls of the clobazam.,.....im not to sure if i like it yet...she doesnt seem to be herself....she is now very quite and just seems to be out of it....i dont no what to do as i dont want her to have her seizures but i also dont want her to be doped up all the time...i am very confused and not sure if i want to tell her doc i do not like the clobazam!!!!!does any one have any suggestions on what to do??????

Re: Clobazam

Its a good drug.  No known side effects.

Re: Clobazam

I've been on Clobazam now for about one month. Having JME, I have now gone through a gamut of meds to control it, after 22 years of success with phenobarb and tegretol - not sure what happened!

 Anyway, a lot has changed since your original post, but I've noticed that clobazam reacts in a similar way to phenobarb. It just is not as thorough a depressive drug as phenobarb. That's good if it works, since the side-effects are lower. It's bad if it doesn't because phenobarb has a broader spectrum of symptom control.

 I'm really quite surprised that both are being prescribed, since their action is so similar. I'm FAR from a doctor, but it just seems a bit odd that both GABA-related drugs would be prescribed. I've tried Divalproex, Keppra, and lamotrigine for JME. Keppra was close but no cigar. The others either made me loopy or aggrevated my seizures.

 Everything in this disorder is personal, though, so nothing I say should guide you one way or another. All i can say is that I've been on both phenobarb and clobazam. It was pleasantly surprising to me that clobazam did not sedate me as much as anticipated, but given my measuring stick (phenobarb) that's easy to be pleasantly surprised!

 I wish you the best in your treatment endeavours.

Re: Clobazam

Our daughter is 41 and has taken virtually every medication available, has had two corpus calosotomies, and insertion of the VNS.  Nothing completely controlled the seizures.  She takes trileptol and keppra.  We just started  clopazam with the other drugs and all of her seizure have disappeared.  She has been taking it for approximately two weeks. She had been having daily seizures of all types. Try it and good luck. It's hard to bellieve why an insurance company does not cover this mediation.