Epilepsy Foundation

For all who have experience using intranasal midazolam/versed.

How old is your child and what dose do they take?

Have you tried diastat? If so, how does the intranasal midazolam compare? When you used diastat, did your child require a second dose? If yes, do they need a second dose with the midazolam?

Thanks

Jen

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My general midazolam info is here:

https://docs.google.com/document/d/1dE62qZ-zt6Vty4Q8FfMA4ZdUXH0Ti8D...

To answer your specific questions, at 3 years old my daughter weighs 18 kg and currently takes 0.6 mg of midazolam (half in each nostril).  Rarely (5% of the time?) she'll need a second dose of midazolam if the seizure doesn't stop within five minutes.  http://intranasal.net/SeizureRx/default.htm recommends higher doses than what most neuros prescribe (of course you want to use the lowest effective dose).

Diastat quit working for my daughter.  Even second and third doses of Diastat wouldn't stop her seizures.

In the Dravet community I've seen dozens of parents try midazolam with their kids.  I can only think of one kid where it was ineffective.  So nothing's perfect, but the science, anecdotal reports and my personal experience show that it's probably the most effective rescue drug you can easily administer at home.

Jim,

That is an excellent document you put together!

Thank you so much.

We just started using it with Joey.  When we use diastat he is on 15mg and that typically works.  For the midazolam we use three puffs per nostril and it has been as effective as the diastat and Joey seems to recover quicker than he does on diastat.  I believe the dose is 5mg.  Some people have posted that they have to use syringes, etc. with it, but ours is easy - it is a nasal spray bottle.  The only negative is that it only lasts 3 months before expiring.  It is much smaller to carry than diastat - although we still transport all everywhere we go.

Joey's mom, can you share any more details on the midazolam you use?  I haven't heard of a spray bottle delivery mechanism before and I'd like to find out more about it.

Does anybody use the mouth (buccal) one?  Is there a reason why you don't if not? We just 'upgraded' to the mouth from the rectal diastat (have not used it yet).??

The main reason we use intranasal is because that's what our neurologist prescribed for us.

From http://intranasal.net/SeizureRx/default.htm there's a graph and paragraph that compares intranasal and buccal delivery methods of lorazepam (I assume that midazolam would behave in the same manner).  To quote their quote: "The results from the present study suggest that the intranasal administration route leads to a significantly faster detectable concentration of lorazepam in plasma than the buccal route for the termination of prolonged seizures. Our findings suggest that intranasal, rather than buccal, lorazepam is likely to be more appropriate for the management of children with acute seizures."

I'm not sure if there's other relevant info on that website.  The whole page is a good read, but I haven't read it for a while (I just re-skimmed it now).  I'm not saying the buccal method is bad, I'm sure it works fine. In fact, I believe buccal midazolam is the standard first line treatment in Europe.  However, my guess is that intranasal is even more effective than buccal.

Our state just passed a law allowing nurses to train non nurses to administer intranasal rescue meds.  There is no mention of buccal medication but wonder if they'd require nurses to administer based on what I've read.  The nurse at our elementary says that if our child needs diastat then she'll be transferred to a school with a full time nurse. I didn't think they had a full time nurse at any school in our district, still doesn't sound right to me to move all medically impacted kids to one place.

Jim,

We get ours from a compounding pharmacy.  It is just a little bottle (like Afrin, or one of those nasal sprays) and it works just like those do.  We easily can put three puffs or sprays into each nostril.  It is much smaller to carry around than diastat - although I still carry both at all times. 

Our neurologist calls the script into a pharmacy in Rye Beach New York and they ship it to us. 

Like I said, the only negative to it is that it expires every three months, but we just have to stay on top of it so that we are never without. 

I hope this helps!  :) Tami

 

Thanks for the reply Joey's mom.  Is the bottle a single dose (six puffs) or does it contain enough midazolam that you could reuse the bottle for several seizures?  Is http://www.ryerx.com the pharmacy?

We currently use rectal diastat for our 5 year old.  I recently asked our Neurologist about using Versed/Midazolam instead because the diastat has not stopped his seizures in the past.  I was informed that the nasal/buccal Versed/Midazolam is not FDA approved and that the Neurologist didn't feel comfortable prescribing it for us.  Has anyone had similar experience?  I was not aware that this was not FDA approved--is that accurate?  I have read several articles in medical journals comparing it to diastat with consistent findings in studies that it is as effective/safe for use in children with epilepsy as diastat, if not more.

 

Jason

Versed/midazolam is FDA approved.  Using it in children as a rescue drug may be an off-label use, but off-label use of drugs is a legal/common practice.  For example I believe every drug we've used for my daughter's epilepsy has been used off-label.  If you read the drug package inserts you'll see that most drugs have not been approved for pediatric use (which means docs use them off-label).

I believe intranasal midazolam doesn't get more use because of ignorance.  Can you email your neurologist http://intranasal.net/SeizureRx/default.htm ?  Now if Diastat was working well your neurologist could at least make an intelligent argument for not fixing what isn't broke, but in your case it sounds like you've got very little to lose.  Maybe it's time for a new neurologist?

Jim--thanks so much for the link.  I will share it with our son's neurologist and question him further.  I have struggled with the decision of whether to find a new neurologist but am torn.  I like this guy and truly feel that he is intelligent and well read, but I am finding that he seems to be very conservative in his treatment decisions. That could be a good thing, I suppose--he is very careful, but at the same time, I want to make sure that we do everything we can for our son.  His recent seizure which lasted 25 minutes before ceasing (after administration of rectal diastat at 4 mins) gives me great concern.  He had a 104.8 fever when we finally arrived in the ER--and the neuro has chalked it up to a febrile seizure (complicated and prolonged b/c of the fever and likely virus).  I suppose that's possible.  Still--25 minutes is a long time to watch your son seize, helpless to do anything but wait for EMS.  Now I'm paranoid every time he feels slightly warm.  His Trileptal levels were good, and he's not changed his dosage or treatment and states that he truly thinks this recent episode was due to a virus and resulting fever.  Who knows.  I do appreciate the help, guidance and experiences you and everyone else here are providing me.  I just arrived on this site, and am grateful to have found it.

Jason

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