Epilepsy Foundation

Does anyone know when buccolam (OR intranasal midazolam) will be available for general use by non-medical personnel in the U.S.?  I was excited to see it was approved in UK but cant find any info on status of FDA application.  (I don't think it's yet approved but am not sure)  I had heard in a lecture maybe in 1-2 years (that was six months ago).  Dont know if anyone is 'in the know'

 

thanks!

 

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I wish it was here now. It would probably take away a bit of the stigma..people seem to panic when they hear it is a rectal emergency  med...
I wish it was.   My daughter arrived home yesterday perched on her schoolbag, no harness on her car seat in the bus.   If the aide cannot operate a car seat I have reservations of letting her near my daughters rectum with diastat.
How frustrating! Why don't people get it?!?!

The problem with using something such as nasal Versed is that it only has a halflife of about a half an hour.  That may work for some patients, but many patients that need a bad seizure broken may need something that lasts longer to truly give the brain time to stop firing abnormally.  In the case of something such as a generalized tonic clonic seizure, it can take some time for the brain to stop discharging and settle down.  If you only have a benzo that works for half an hour it may not be quite long enough in some cases and I think that is why doctors are a bit hesitant to offer it.

 

We have nasal Versed on hand to help break my son's dystonic fits.  Previously we were using Ativan for it but he had very little quality of life with constantly being snowed on meds.  Generally for nasty seizures we still use Diastat.  I have a wonderful relationship with my son's neuro and he knows how hard I work for my son and how much I research on new things coming down the pipe as well as study the brain now in general.  If I didn't read as much as I do and I wasn't able to hold my own in a conversation with him and the other neuro team I probably wouldn't have it to be honest.  They very rarely give it out to parents currently due to the reasons I have stated above.  

 

I know many parents are squeamish about Diastat, but it really is something that needs to be gotten over.  If you saw somebody unconscious and not breathing, would you feel squeamish about giving them mouth to mouth resuscitation?  Diastat is a rescue med for a reason and regardless of its method of delivery, you should not feel awkward about doing what is right for your child or family member no matter the situation.  In fact there have been a few times I have had to give Diastat in public to my own son and the few people who were brave enough to say anything about it I was willing to instruct them on what it is and how it is given and such as I was doing it.  They were rather fascinated and surprised even when my son popped out of his seizure.  I will never forget the one time a woman actually started giving me flack for doing it in public and I asked her point blank "should I just let him die then?"  How quickly her face fell into a frown and her eyes turned to sadness for that question to be brought up about a child.  People get a whole new perspective on this when you put it so plainly to them.

 

 

I don't think it's an issue of parents feeling comfortable with diastat.  Obviously, we are all highly educated on the importance on seizure cessation and all have our priorities in order.  I think the issue is that RE: non-medical, non-parental adults feeling comfortable with and willing to administer emergency medication.  I would LOVE to be able to always leave emergency meds with parents on playdates, or the afterschool program, or with the troop leader for Brownies without the lengthy explanation and education process.  As our kids get older, they naturally have (or want) a longer leash, so the issue of independence with a safety back-up plan is important.  Consistently finding a responsible, willing adult can be a challenge for those of us with older kids.  I would imagine (although don't yet know) that uneducated adults would more likely be willing if it weren't a rectal administration - hence, the appeal of buccal or intranasal midazolam.

 

For me, the quick onset and short half of the midazolam is very appealing.  My dtrs seizures are typically short and she recovers quickly.  The one time we used Diastat, it took her six hours to wake up due to drug-drug interactions with depakote, which slows the clearance of valium.  (I believe it also slows the clearance of the midaz, but would have to check that - BUT it's half-life is so short, I'd be looking at a much shorter time to recovery)

 

I'm glad to hear that it's available.  I have never asked my epi - this is new to us and my list of questions is always so long - have never gotten to it.  I'll ask her next time.  Thanks.

 

Amber Clark said:

The problem with using something such as nasal Versed is that it only has a halflife of about a half an hour.  That may work for some patients, but many patients that need a bad seizure broken may need something that lasts longer to truly give the brain time to stop firing abnormally.  In the case of something such as a generalized tonic clonic seizure, it can take some time for the brain to stop discharging and settle down.  If you only have a benzo that works for half an hour it may not be quite long enough in some cases and I think that is why doctors are a bit hesitant to offer it.

 

We have nasal Versed on hand to help break my son's dystonic fits.  Previously we were using Ativan for it but he had very little quality of life with constantly being snowed on meds.  Generally for nasty seizures we still use Diastat.  I have a wonderful relationship with my son's neuro and he knows how hard I work for my son and how much I research on new things coming down the pipe as well as study the brain now in general.  If I didn't read as much as I do and I wasn't able to hold my own in a conversation with him and the other neuro team I probably wouldn't have it to be honest.  They very rarely give it out to parents currently due to the reasons I have stated above.  

 

I know many parents are squeamish about Diastat, but it really is something that needs to be gotten over.  If you saw somebody unconscious and not breathing, would you feel squeamish about giving them mouth to mouth resuscitation?  Diastat is a rescue med for a reason and regardless of its method of delivery, you should not feel awkward about doing what is right for your child or family member no matter the situation.  In fact there have been a few times I have had to give Diastat in public to my own son and the few people who were brave enough to say anything about it I was willing to instruct them on what it is and how it is given and such as I was doing it.  They were rather fascinated and surprised even when my son popped out of his seizure.  I will never forget the one time a woman actually started giving me flack for doing it in public and I asked her point blank "should I just let him die then?"  How quickly her face fell into a frown and her eyes turned to sadness for that question to be brought up about a child.  People get a whole new perspective on this when you put it so plainly to them.

 

 

I have asked my epi about it before and he has told me also that the diastat rectal is still the preferred method for children...and that he will give the other types (as above) for teens or talk about it when they get older.......But he made it clear that the need to stop the seizure is what is important and at the time I asked him diastat was the best for that (for us).

 

I agree with the other mom it is not me or other parents of E kids who get 'freaked' at times..it is non medical personnel who don't understand issues like the diastat stopping the seizure....

 

I also believe that uneducated adults would not freak about the non rectal..but that is an assumption....

 

One of the reason I have been told the rectal is still preferred is bc if a person is having problem breathing or vomitting...it may not get in the bloodstream as fast via oral or nasal versed. I will ask my dr at our next appt...I was given the nasal versed when I was out of the country prior to DX..and I had to FIGHT for it b/c not all places give people meds to stop the seizure believe it or not...

 

 

I am hoping the nasal versed will become more accessible. I have asked my son's doctor about it, but she wouldn't give it to us. She did finally agree to give us ativan in pill form. We do not carry diastat for him because he is 14 years old, has never had a convulsive seizure and has always maintained some form of consciousness throughout his seizures. We have had to administer emergency meds in the form of ativan in a pill to him 3 times, but each time he was mostly conscious. A rectal med is a totally inappropriate option for him because of how his seizures manifest and his age. The last time we had to administer, he had a tough time swallowing the pill, which made me realize that maybe I need to push for the Versed.

I think it's extremely appealing for complex partials for this exact reason.

 

The studies I've seen (given by non-medical personnel) have been favorable for both buccal and intranasal midazolam.  I know it's on the horizon - I just don't know how far off it is.

 

lsquier said:

I am hoping the nasal versed will become more accessible. I have asked my son's doctor about it, but she wouldn't give it to us. She did finally agree to give us ativan in pill form. We do not carry diastat for him because he is 14 years old, has never had a convulsive seizure and has always maintained some form of consciousness throughout his seizures. We have had to administer emergency meds in the form of ativan in a pill to him 3 times, but each time he was mostly conscious. A rectal med is a totally inappropriate option for him because of how his seizures manifest and his age. The last time we had to administer, he had a tough time swallowing the pill, which made me realize that maybe I need to push for the Versed.

I just got a script for intranasal midazolam yesterday. I am in Iowa (In the US). Mine is a script for use if DD seizure lasts longer than 5 minutes. But then she has to go to the hospital if she receives it.

 

Hope you can get some by you or shipped to you.

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