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So my sister is mentally retarted and she gets seizures sometimes due to headache or ear infections (I don't know if you can actually get it). I read some information online, but I feel like they're not helping much? I don't know. When she gets seizures she is on her side, so the fluids do come out that way. I'm not sure about the cushion part and the ambulance part... Cause here's the deal. When she's sick she gets seizures at least 3 times a night. It happens from time to time so it's "normal". My mom refuses to call the ambulance because I think she doesn't want to deal with that stuff or either something else, like bill? I do recall one time blood coming out of her mouth, and I ask my mom if we should call the ambulance and she said no. I was very confused by this.
I guess, perhaps, being an Asian family we're not big on calling for help, especially the ambulance. Sometimes I find it very stupid because we should call the ambulance. My sister does take her medicine but I just really don't know. No one knows what to do when she gets seizure and I'm the only person who knows what to do if I'm ever around. My mom also said that we should "massage" her neck and shoulder if she does get it, but I'm not sure if you're even suppose to do that. Does it even help at all? Every time she gets seizures, she goes to the bathroom and waste tons and tons of toliet paper. I'm thinking.. What is causing her to do this? To waste tons of toilet paper? Perhaps she's confused?
So yeah....How do you deal with it? What to do about it? Because if I do ever call the ambulance, for example, I might even get yell for doing something "reckless". I suppose I feel very conflicted when it comes to mom vs sister's health (asking for help).
My father had seizures from brain damage he sustained in WWII. One of my dogs also had seizures.
Their Drs. told us to just let the seizure run its course.......there is nothing you can do. Just watch them and move things out of the way so they don't hurt themselves.
But............that was on the advise of their doctors, your sister's situation could be different. You said she is on medication.......what does her Dr. say you should do?
Talk to her doctor and ask him what you shoud do for your sister........you will not have peace of mind until you do.
Your sister's seizures sound worse than any I have ever seen.
My oldest daughter had really terrible seizures. Every kind you can think of and sometimes literally hundreds in a single day. So I know they are not easy to watch or deal with.
It is true that things like headaches and ear infections can bring them on. That is very common. Some parents actually know when their child with epilepsy is going to get a cold because seizure activity starts before anything else.
I can't say what is right for your sister or your family, but I do understand your mom's thinking. In the beginning we called the ambulance all the time. After a while we figured out there was nothing they could do. The exception was if she was in status epilepticus and we couldn't get her out of it for a period of time, which unfortunately did happen more than I would have liked.
What worked best for us was diazapam (rectal valium). There are a few different meds that are used to stop seizures quickly and that is the most tried and true and the one that worked for us; sometimes. There never was a med combination that controlled her seizures. We also had oxygen and a pulse oximeter at home to help her get enough air during the longer ones and to make sure her O2 came back up after the seizure. If your sister's seizures are bad or long enough, those are things to look into having.
The wasting of the toilet paper~ yes, she is probably confused. It takes a long time to get out of that postictal state and people are often very weak and confused. They might not even know where they are or what is going on around them for a while.
The massaging of the shoulders I am completely on board with. Not because I think it will stop the seizure (although sometimes things that seem weird do help on an individual basis), but because it lets her know that she is not alone and that she is being cared for.
Thank you very much for sharing your stories, Maggi07 and Annie53. She was hospitalized once and it was a long time ago. I think there's nothing I can do but to just continue what I can do best for her.
Agree with above plus would like to add a few more things. There is generally no need to call the ambulance unless she gets into a seizure that lasts more than 5 minutes, though as the poster stated above--ask the doc. The blood coming out of your sis's mouth is probably from her biting her tongue or cheek--it looks scary, but it's probably a minor side effect of the seizure. The main thing to do is to make sure that her airway is open and lay her on her side if you can so that fluids can run out of her mouth and she won't choke on them. If you can't get her on her side, lay a small pillow or other object under her neck to raise it a little and that will open her airway.
Years ago, when I began to have seizures, the doc explained that everyone has what's called a "seizure threshold" and those who get seizures generally have a lower threshold than average and if something sets it off or gets in their system it can trigger a seizure. For me it was aspartame, for your sis it's headaches or ear infections. One of the kids I work with at school went to an army enlistment thing today and did one of those simulators with the flashing lights and it set him off--he was seizing in minor episodes for the rest of the day.
BTW, I went off the diet sodas and other aspartame sweetened items and never had another seizure even though I went off my meds. I always tell kids with seizures to leave the stuff alone. Does your sis use those products? She could get diet sodas at school so you may want to check--some schools, like ours, will only sell diet, so I get sodas from the teacher's lounge for our kids.
Don't be too cross with your mom for not wanting an ambulance--it's excruciatingly expensive, even with insurance, and they can't do much anyway.
I do recall one time blood coming out of her mouth, and I ask my mom if we should call the ambulance and she said no. I was very confused by this.
the only person who knows what to do if I'm ever around. My mom also said that we should "massage" her neck and shoulder if she does get it, but I'm not sure if you're even suppose to do that. Does it even help at all?
I think the blood is just from her biting her tongue... it is doubtful that a seizure would cause bleeding from other sources. No need to call the ambulance unless there is a ton of blood or it doesn't stop.
If the seizures continues and she doesn't snap out of it, you should call the ambulance. How long to wait? I guess if it looks like it is out of the ordinary, a couple of minutes?
Massaging during the seizure isn't good... just let the seizure finish. Doing it afterwards can't hurt.
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Does it even help at all? Every time she gets seizures, she goes to the bathroom and waste tons and tons of toliet paper. I'm thinking.. What is causing her to do this? To waste tons of toilet paper? Perhaps she's confused? 
