No More Diastat!!!

[lorilou]

Noah had an appointment with his new neurologist here in town today. I'll post later on the whole appointment but I had to share this tidbit right away.

I asked about alternatives to Diastat and he said that there is a new one (I think someone else brought this up recently). Versed has been approved as a nasal spray to stop seizures. The problem is that it is complicated to make since it has to be in a spray...not just liquid. There is only one speciality pharmacy in our area who can make it.

One bottle should be about 50 doses...so even at a couple hundred dollars it is much more cost effective than Diastat.

I can't even begin to tell you how happy this makes Noah...he hates Diastat (understandably!).

I'll post the rest of his appointment later when I have more time...

[RathyKay]

I can't even begin to tell you how happy this makes Noah...he hates Diastat (understandably!).
Interesting! I do wonder what Noah will think of the spray up the nose, though. Let us know how it works, if you get/have to use it. (Have you picked it up yet?)

So... is this the same Versed given to put our kids to sleep? Just a different form kind of thing? Maybe I'll look it up....

[lorilou]

I'm sure he won't love it...but better up the nose than you know where :eek:

School will also be very happy...it's still a controlled substance but much less invasive to administer.

No, we don't have it yet. It has to be made so it takes a couple of days. Since the pharmacy is not nearby they will UPS it to us -- what a great service.

The exact same Versed. Noah has had a few seizures stopped with it by IV after Diastat didn't work. I've also had Versed in smaller doses for some cortisone injections. I wasn't given enough to put me out but let's just say I don't remember anything unpleasant!

[RathyKay]

School will also be very happy...it's still a controlled substance but much less invasive to administer.
Does this mean someone besides a school nurse could administer it? That might be worth my investigating just for that peace of mind.

[Mother's Heart]

THat is totally AWESOME! Kids can learn to tolerate a nose spray...PLUS...they wont' know about the spray during the seizure, right?

I wonder what the after effects are like? I wonder if it's as effective as the diastat? I can't wait to learn more about how it works. That is terrific news!
I am so happy you get to try this alternative. YAY! lucky Noah...and mom.

I just KNow that has to make things easier for third party caregivers.

[Mother's Heart]

kathy,
I think it would still require school nurse, wouldn't you think? because of its being a controlled substance.

[RathyKay]

I don't know. What are EpiPens made of? Are they controlled? Can't they be given by a teacher or someone besides a nurse?

Noooooo! You can't take my dream away....:p

[lorilou]

Remember we're the crazy district without a school nurse.....Luckily Noah never needed Diastat at school but his parapros and the school secretary were trained to do it if it were necessary.

[Little JT]

Wow! That's really exciting. I'll have to see if we have it available here. I too wonder about whether the side effects are less severe than with Diastat. Jake doesn't really mind the suppository aspect of it so much, but he is MISERABLE for hours after he gets it. I realize it is probably just as much/if not more related to the seizure as to the Diastat, but I have heard that it can make you feel pretty crappy. I'm also wondering if it is supposed to be just as potent as Diastat?

Thanks for sharing!

[langansmom]

That is the med Langan's neuro has recommended for us. We're still working on getting it.

Here, the school nurses association or union or whatever they are officially called is working on having this declared NON-invasive so that it can be given by someone other than a nurse. It is the reason we're trying to get it- no full time nurse at Langan's current school or at any of the public schools here.

Can't wait to see how it goes for you guys. I would LOVE to say good-bye to diastat!!

(((hugs)))

[Mom2Ava]

We have used versed for Ava's SEs but it did not help.


As far as others being able to administer, is it possible for the parapros or teachers or whoever to just get Med Certification?
In this case, it would nto matter if the med is controlled or not.

[Jenelle's Mommy]

Keep us posted please! I think this will be great for those that have to fight their schools to keep Diastat!

[Earth Mother 2 Angels]

Hmmm... I have some questions:

1. How is the proper dose insured using a nasal spray?
2. What is the efficacy in terms of delivery of the medication via nasal spray as opposed to rectally, orally, sublingually, and through IV? In other words, how fast does it work in comparison to those other delivery methods?
3. How do you know how much is left in the nasal spray bottle, and/or how many doses are remaining? How do you keep track of the drug, for refills or to detect possible illegal abuse of it by someone, who can get possesion of it? (Sorry...that's a reality in today's world...)

I looked up Versed on our Drug Info link. It is Midazolam. It is typically used to induce loss of consciousness or a "la la" state, prior to a surgical procedure or in ICUs. Michael received Versed for his Gtube placement.

Diastat, Ativan, and Valium are all the same drug: Diazepam. This is a benzodiazepine. I don't know how it differs from Versed, or whether Versed is also a benzo, as the blurb didn't mention it.

The info on both drugs indicate that both of them are used to stop seizures (or for epilepsy). We used Ativan sublingually for Michael's seizures toward the end of his life, or we crushed the pill and mixed it with water and put it in his Gtube. Sublingual acted more quickly than through the tube. But I seem to recall that a doc told me that it worked faster through the tube than when given rectally.

Sure wish that none of us had to make the choice between any of these drugs!

{{{HUGS}}} to all~

Love & Light,
Rose

[Mom2Ava]

Diastat and Valium are brand names for diazepam and Ativan for lorazepam are not the same drug ... but they are both benzos. Versed is also a benzo and is used for prolonged seizures. The differences between these benzos I think have to do w/ how fast they act and I think also their half life.

Here is some info on the three benzos used for prolonged episodes:
http://www.aafp.org/afp/20030801/469.html

I would worry about the efficacy of nasal rescue drugs. Well i guess not so much actual efficacy as much as how much is the person really getting. Ava frequently vomits during her episodes ... so I would wonder how much is she actually getting. But I also have the same concerns w/ Diastat. She often has aBM after giving diastat. So ... Again I have to wonder how much she gets. I wish hey would come out w/ an IM benzo.

[momster]

You know, I take a nasal steroid every day for allergies. I have to take a sniff, not a snort. I'm wondering if the drug manu\facturer could be stupid enough to have similar instructions on doseage. Wouldn't that be really typical? I guess I'm just revoicing Rose's concern here - but before I spent a couple of hundred bucks on the med, I'd want to make sure I could really administer the proper doseage.

- momster

[kathleenandjoe]

We have had this for months now, but luckily have not had to use it. Diastat has only ever worked once for Becca - so we have midazolam (versed) for up the nose and ativan tablets for between cheek and gum if she cannot swallow it for her long ones.

I mentioned this when we got it some time ago and I remember Paul saying the Champ did not agree with it at all. So that worried me. Anyway - have not had to use it, but Becca has had versed before many procedures and it makes her quite silly actually. Hmmmmmmmmm...

Not that I ever want to use it, but am curious if the dose or way it's administered or for what it's given for makes a difference in the effect.

If not - gosh I would much rather have her feeling silly after a long seizure like that!

Peace,
Kathleen

[lorilou]

Good questions...

As for the dosage I think that is the reason why it it hard to get. The pharmacy has to make it into a "metered" spray so it always sprays the same amount. Noah's instructions will be one pump per nostril - repeat after 5 minutes if necessary.

Since I haven't seen it yet, I'm not sure how you'd know how many dosages are left. The pharmacist said that it should be about 50 uses.

I'll keep everyone posted...

[Alexia]

In Texas the State Board of Nursing has ruled that the school nurse can delegate when there is an emergency or acute situation such as emergency asministration of Epi-pens, Glucagon, and Diastat. These may be administered by an unlicensed person inorder to stabilize the child and prevent complications from delaying treatment. The decision to delegate a task is at the discretion of the RN. However, our district has not allowed this. I do know of other districts allowing non nursing personel to administer diastat... like on the bus, etc.

Is the Versed spray covered under insurance yet? That would be so much better than having to use diastat in a public place.

[purplegrrl]

Here in Australia, liquid Versed/midazolam is now being used quite a lot... can be given intranasally (http://www.rch.org.au/kidsinfo/factsheets.cfm?doc_id=9301) (in the nose) or buccally (http://www.rch.org.au/kidsinfo/factsheets.cfm?doc_id=9300) (in the cheek).

Links are to instruction pics from the Children's Hospital in my city.

[purplegrrl]

An article comparing Diastat with intranasal midazolam (liquid, not spray):
Acute Repetitive Seizures and Seizure Emergencies: Weighing Your Treatment Options (http://www.epilepsy.com/articles/ar_1109872672.html)

We don't actually HAVE Diastat in Australia, only rectal diazepam liquid injected by a syringe with a plastic tube on the end. Needless to say, intranasal or buccal midaz is easier to administer... that's why it's become popular.

No personal experience with either rectal diazepam OR midaz here, tho... only IV benzos and oral clonazepam (Klonopin in the US) or Ativan.

[sunandmoon]

Speaking of Epi pens, a friend of mine works for the company that makes them. They are currently in clinical trials for making the Diastat (that's valium - right?) to be injectable via a device like they use for epipens. That will allow for non-rectal administration of the valium and be useful for adults in workplaces, on trips etc. I believe they are testing it in children and adults right now. If you look up the company for the epipen, you might be able to get in a clinical trial. Otherwise it's still a couple of years from being available.
M.

[purplegrrl]

I just did a google search on "EpiPen" and "Diazepam"... and I found an apparently already available Diazepam autoinjector (http://www.meridianmeds.com/auto-injectors/diazepam.html).

It's on the "Homeland Security Products (http://www.meridianmeds.com/homeland.html)" page of the Meridian website... was apparently developed to treat convulsions caused by chemical nerve agents.

Assume it's the same autoinjector they're testing for status/cluster seizures? Or is it?

PS Order forms actually on the site... tho I'm sure availability is very limited/controlled

[RathyKay]

Ria, that comparison site you posted (http://www.epilepsy.com/articles/ar_1109872672.html) talks about the military already having it! As for diazepam he believes the future route of administration may lie in the autoinjection delivery system. Similar to the EpiPen, the autoinjector injects diazepam intramuscularly in the outer thigh region. It is currently commercially available for military use, but is not FDA approved. The autoinjector delivery system is undergoing clinical trials.
Neat! More choices has to be good, right? Oh, and thanks for the intranasal and intrabuccal links. A picture's worth a thousand words....