seizure sticks

[tinasmom]

On this website, they are selling these seizure sticks. National is sending a letter to the manufacturer.

The website is buyemp.com

[Birdbomb]

I can't get that link to work but I did find an other

Bite sticks



Okay right, just when the word is getting out about NOT jamming stuff in our mouths......

[Trinity]

This is bloody incredible. Considering they are selling medical supplies they should darned well know what the hell they are selling (or perhaps they do and only care about making a buck). It is no wonder that people don't understand not to stick fingers and other objects in a seizing persons mouth - supposed educated people are sending out the wrong message.

[Meetz1064]

What on earth? I keep telling everyone NOT to put ANYTHING IN THE MOUTH.........

[tinasmom]

The program director at our local Epilepsy foundation sent this to me. The National Epilepsy Foundation sent this to her and they are sending a letter telling them this is not what you do when someone has a seizure. Talk about a step backwards. National is very upset about this. Let me know if you see these anywhere, the name of the store and what city and state so I can let the program director know so she can report it to National.

[Birdbomb]

National can use a search engine to find the medical supply places that sell this stupid thing.

I can understand the reason behind it. If in an ambulance and the breathing passage is blocked by the tongue, but this will give the WRONG idea to "Joe Schmuck" on the street.


I still wouldn't want anyone to shove ANYTHING in my mouth during seizure. Just the thought of the possible damage from that action makes my skin crawl.

When I had my tonic clonic, my airway was blocked completely. I was sufficating and I was aware, but the body will eventually relax and the tongue will slip out of the way.

[Jake]

Thankfully my tongue bitting days seem to be over but I remember all to well how excruciatingly painful it was.

I have used bite sticks in the past and wholeheartedly support their use. I have heard from others who used them and like myself benefited greatly by reducing the damage to their tonge and cheeks.

These items placed in the mouth actually can do more good than harm, provided you know how to use them. The person can breath more efficiently which is a major concern in some people. They also aid in the drainage of saliva, blood etc.

Having had Tonic-Clonic seizures on a daily basis for longer than I care to think about my tongue and cheeks would never have had time to heal. I sometimes went 2-5 days without eating because of the pain and I was no woose back in those days.

It's true that teeth have been broken by first aiders trying to put an object in the mouth. They had the best of intentions but didn't know how to do it properly and used hard objects like eating utensils which were jammed in the mouth instead of opening the mouth first. I heard a man interviewed who put a knife in a guys mouth because he thought he'd swallow his tongue. Although we know that doesn't happen, he didn't, and figured a broken tooth or two was better than no tongue. So yes ignorance is out there . But why not make an effort to educate these people in the proper use of bite sticks.

My dad put his finger in my mouth during my first seizure, but he never did it again. He had quite a scar, sorry dad.

By using the bite sticks damage to the tongue and cheeks can be minimized and usually avoided entirely.

I know this subject is controversial but I have had seizures with nothing in my mouth and seizures with things, usually bite sticks, in my mouth and I opt for the bite stick, wallet or cloth any day.

I think people should be educated on their proper use. If you haven't been trained how to insert them corectly then don't use them, but don't be so against a product that has been very beneficial to so many.

[Birdbomb]

Jake that is the first positive post I have ever read on this subject and you present many valid points. Thank you for this input.

The key is

you know how to use them

So far I have only seen them in medical supply outlets.

[Jake]

Whenever I was admitted to the hospital there was always one taped to the head of the bed. Earlier this year when I was admitted for MRSA there was none to be seen.

[Bernard]

On Stacy's last trip to the ER, the head paramedic insisted on using a plastic hook shaped device in Stacy's mouth because she was breathing so shallowly. I argued with her that it posed a danger should Stacy seize again, but she wouldn't listen.



Rusch Berman Oral Airways

[tinasmom]

What a scary looking device. I think your EMT's need some seizure training.

[Stacy]

I'm grateful that I have EMT's that have saved my life on more than one occasion. I can't say bite stick or not, because I am never "with it" enough to use one. I can say that the people working for the Fire Dept., are all excellent. I bit my tounge so hard on one side, that it took a long time to heal. I've not done it since, except once very lightly.

[santaclaus]

It is great that national seemed to notice these things last year, but does anybody know if they did anything? I mean, with all due respect, it should not be hard to get these companies to stop selling these products to the public.

I suggest that we file a class action lawsuit against these companies ( all the money could go to charity) This would do two things: First, with enough publicity, it will teach the American public not to put anything in our mouths, which is something everyone should understand. Second, by taking this simple item and making it into a big deal, it might allow us to talk about more pressing needs, like the discrimination that keeps taking place, and the problems many students seem to have in school.

I can say that nobody has worked harder in this little problem them myself. I look at this as being a negative symbol that we must get rid of. So, if anyone knows a good lawyer that wants to file a class action case, I would be interested.

By the way, does anyone know why National gave up?

[Stacy]

This is not good. Don't these people know it's better to have someone bite their lip or grind their teeth, than have them snap a BITE STICK in half and choke on it. These people must not have Epilepsy

[santaclaus]

But what can we do about?

This is the way I feel. Maybe we can't get people to understand what it is like to have epilepsy, and maybe we can't get people to like us and make our lives easier.

However, I think we as a minority should be able to end the practice of medical supply companies making a profit off of a myth, a myth that at times can be damaging.

And I am not opposed to these sticks in the hands of professionals. I am opposed to the idea that they are sold to the public.

There is a term for an item that cannot be sold to the public, and can only be sold to drs or other medical professionals. I would like to see these sticks listed in that category. I don't think that is too much to ask for.

Lets figure out how to get this done.

Scott

[darkmarkshark]

When searching for "seizure bite sticks" t takes nearly all of 3 google pages to find a site that says they are harmful.

Something soft can help lessen the harm done by a seizure, but I think when bite sticks are used by an untrained person they do more harm than good. I don't have a problem with them being sold to a medical professional but I definately don't think the average person on the street should be able to get them

You know how the epilepsy foundation has all those walks to raise money? Maybe we should have marches in the major cities to protest bite sticks and unannounced medicine switches by generics. Surely it would be hard to just have another walk a year. Entice others with the same promises of prizes for top runners, but encourage walkers to bring protest signs

[Jake]

Why stop selling them? They alleviate a lot of pain & suffering for many people.

You talk about discrimination, your discriminating against me and many others right to have and use a medical device that serves a valid purpose. If you don't want to use them fine, don't, that's your choice. Why is it so important to you to have them outlawed?

As I stated earlier, I use to have tonic clonic's daily (sometimes more than one) and always bit my cheeks and chewed my tongue. The pain was excruciating . I can't imagine what condition my mouth would be in today were it not for my family's use of bite sticks.

I don't know anything about your seizure type(s) or pattern santaclaus but if you have only occasional seizures the bite stick is not so necessary, provided you don't mind nursing a sore tongue for a week or so, but why when it's not necessary.

Contrary to what you may believe santaclaus, the use and effectiveness of bite sticks is not a myth but a reality and I have no problem with the medical supply houses making a profit off a product that helped make my life a little easier.

I hope you are unsuccessful in your efforts to have this product banned!

Jake

[darkmarkshark]

I do bite my tongue -most often my cheek.

But I'd prefer a sore tongue and cheek, even if it last for a week, over just one broken tooth, or who knows what else.

Would you want a stranger jamming one of these things into your throat? A stranger who knows absolutely nothing about how to do it properly? He is just as like to end up pushing it back to far, choking you, as he is to prevent you from biting your tongue. And just think of the damage that can be done by having that thing lodged in your throat at the same time you are convulsing. Particularly if you have the bad convulsions where you literally flip from side to side

Will strangers who know nothing about epilepsy purchase these sticks? You can say probably not, but what if you happen to seize in a store and a customer remembers they are sold there? They'll run and grab them and you can rest assured they won't take the time to read the instructions before forcing it into your mouth.

And think of all the people who know little about epilepsy (just about everyone) who will think "i saw bite sticks for seizures in the store, I must put something in thier mouth. What is like a stick? and then go and grab a spoon or other object that resembles a stick and jam it down your throat? A name change could do significant good. Seizure bite pad's maybe.


I have used a bite stick once without a problem, BUT it was by someone who was trained in their use. Not Joe Shmoe with absolutely no idea of how to put it in my mouth and why it would work


*There are people who get specially made dental guards to protect their cheeks and tongues from nocturnal seizures. If you have a warning before your tonic clonics that would be a much safer option for you than a bite stick, but obviously it wouldn't do much good if you don't get an aura preceeding them

[santaclaus]

Darkmark, well said.

Jake, do you remember that parady MAD magazine did in their August issue? They had a cartoon of someone seizing, and sticking something in their mouths ( the cartoon is on this site somewhere, I am just not that good in placing it here) Anyway, it was really offensive for many of us, mostly because it depicts a myth about epilepsy...We cannot swallow out tongues.

And those sticks are dangerous. Apparently, in California some years ago, a babysitter used these sticks on a child, and that child died ( disclaimer: This story was told to me on another site. The person that wrote it was someone I trusted, although I never got clarification)

Jake, if you like those sticks, good for you. Then carry them around in your pocket, and hand them out when you are having a seizure. As for myself. Ever since I got the VNS implant, my grand mals went away, and probably will never have to worry about them again. However, I spent years have the big ones in public, and I have had wallets, straws, and even fingers shoved in my mouth because people believed I would swallow my tongue.

Don't you think it would be easier for everyone if we ban these things, teach the public we cannot swallow our tongues, and let them know about other problems we have ( then, alls you would have to do is tell everybody that you prefer untrained professionals jamming things in your mouth)

Jake, I will probably be unsuccessful, but I am trying to do this for the greater good.

With respect,

SAnd-A-Cause

[drarvindr]

On Stacy's last trip to the ER, the head paramedic insisted on using a plastic hook shaped device in Stacy's mouth because she was breathing so shallowly. I argued with her that it posed a danger should Stacy seize again, but she wouldn't listen.



Rusch Berman Oral Airways

I agree with the paramedic as far as protocol is concerned. Airway management always comes first. It's much safer to introduce an oral airway and secure it than to have to do a tracheostomy ( or nasal intubation) if the patient seizes again and can't breathe. The ABCs of emergency care are Airway Breathing and Circulation. Keeping her airway patent is no1 on the list.On the other hand , as her proxy , if you did not consent then it is illegal for her to insert it. But i feel that in the circumstances you relate , she did the right thing. It's not the same as a seizure stick and can save your life if your airway is blocked. As long as it was secured properly , i don't think she did anything that was not by the book. Just my .