When is it the right time to go to ER?

[lizzyb831]

So my episodes are more frequent and waiting for my EEG scan results next week. I had an episode at work today with my manager there (3 at work now, probably having 6 a day nowadays). It's gotten to the point where I'm so stressed and freaked that I called the neuro to have them send a note for leave of absence for at least a week until I get my results.

When I was talking to the neuro receptionist about the note and what I need to do, she said the doctor said that if I feel like I need to go to the ER, like if it's too much for me to handle or something, then to go.

So when is it the right time? I haven't had a TC, lost consciousness, or anything. But what would they do at the ER that would help in the mean time besides having a huge medical bill? I'm only on clonazepam right now, and I don't think they would give me any E meds since we don't know what kind of E I have yet. Is it worth it to go to the ER?

 

[Nakamova]

There's not much they an do, unless they have a terrific neurologist at the ER who can actually move your diagnosis forward. Ordinarily I''d say that an ER doc might be able to give you an rX for a small amount of Ativan to help with the stress, but since you're already on the Clonazepam that's pretty unlikely.

 

[MuayThaiFighter]

I think it is really up to you if you want to go. You know your the body the best and I think it is good to trust your instincts. I won't go to the ER anymore, because they really can't do a whole lot. Usually they administer a Benzo if you aren't coming out. I would say, keep a fast acting benzo like ativan on you at all times. If a T/C happens make sure people are aware of the seizures, what to do for you when you have one and to administer the ativan. That is pretty much all they do at the ER. Plus you won't be buried in debt. Best of luck, hope you'll be ok.

 

[KarenB]

Well...we did end up taking Jon to the ER in 2011...he was having a seizure about every 2 hours -- basically, he'd have a seizure, sleep it off, then as he woke up, have another one...so he never really came out of the seizure state.

We took him to the ER at the children's hospital, rather than our local hospital, because he was scheduled to have an outpatient MRI the following day, and we were already booked for the Ronald McDonald house. That meant an hour and half ride -- and he didn't have any seizures on the ride over, but when we pulled up into the ER parking lot, he had one, and then we got him in, and they took him straight back, and things really started going to Hell very suddenly. He started seizing (tonic/clonic or grand mal) every 20 minutes or so (like when they tried to get blood) -- he ended up in ICU for several days, where he was able to be monitored continuously.

The good thing about being in the hospital was that they were able to observe numerous seizures, and got him hooked up to continuous EEG, and were able to catch the seizures on EEG and also video tape which was quite helpful for diagnosis. They also put him on massive doses of Diastat by IV, along with high doses of Valproic Acid. They got the seizures stopped, and he actually didn't have another seizure for a year.

I remember asking our Neurologist WHEN you make the decision to go to ER -- and she said it was up to us. But, you're right -- what can they do? Maybe they won't do anything that you wouldn't do at home, and you'd just have the discomfort of being there for hours on end and a big bill. But we're glad we took Jon when we did. He'd had seizure clusters before, and we hadn't taken him in, but this time, we did, mainly because we were going over there anyway, and it turned out that it WAS the right time for him. But I think if we'd taken him to our local hospital ER that the result wouldn't have been as good -- no good neurologists available, etc.

 

[lizzyb831]

I think the time I'll be going is if I break something or bust open my head. With the rate that I'm going, that might happen soon. Bruises, bumps, and scratches all over my body right now from falling during seizure (my spinning in circles and losing balance) and falling out of bed on to something. Who knew a laundry basket could be so dangerous??? Oh, when you've fallen onto it 3 times now lol

 

[KarenB]

Oh, I know! Jon was going through a spell like that a couple weeks ago, and had horrible huge bruises all over his body. (helped along by his meds) He looked a victim of child abuse. We did a little tweaking with the meds, and the falling isn't as bad now, and the bruises are almost gone.

I've always lived in a perpetual fear that social services will think he really IS abused, and remove him from the family. But my husband jokes, "Don't worry -- he's so high maintenance, they'd bring him back within 24 hours!"

But still...the nightmares of something like that happening -- he's on such a precarious balance of the ketogenic diet and meds and supplements -- I could just see all that getting totally screwed up and sending him completely over the edge.

 

[AngelwithDentedHalo]

Sorry you're going through this. Most times, the ER can't do anything unless you're unconscious like I was with mine or the seizure isn't stopping and or if you really injure yourself during it. Your best bet is not to be alone for lengthy periods of time in case you do lose consciousness and or injure yourself.

 

[AndrewIrish]

I am tired of going to the ER. Almost every time I have a TC they are very violent. And I'm a big guy so when I fall I tend to crack my head hard. Last time in an ER I woke up, realized I could still say my ABC's and said to hell with waiting on an X-ray and MRI and signed out AMA. ER is useless unless you go status or grievously injure yourself

 

[MamaC]

Karen and everyone, I know this is an old post, but I am so worried right now. I hate the after hours part because there is no one to call. My daughter had 4 tonic-clonics yesterday, and just had her fourth today. She is 9 months old. The neuro nurse responded to my call but all they do is up the dose a little. We know that takes a couple days to adjust, so what do we do in the mean time?

Last night I gave her the diastat, based on the nurses guidance that if I didn't think she was going to stop, it was ok. She was waking up and having one within a few minutes and going back into the post-seizure state. But each time it's harder for her to sleep.

So here is my question and I know no one here is a doctor, but is it safe to give her diastat two nights in a row? She has a small dose of clonazepam after each seizure, but the issue is she seems to be in the small percent that cannot fall asleep on these meds. I was that way with codine as a kid, it made me hyper. I wish there was something we could give her to fall asleep.

Anyone have any thoughts?!!! Please? Do I call the children's hospital and ask for the Nuero on call? Or just give her Diastat to stop seizures, but know she won't be able to fall asleep for a couple hours.

 

[Nakamova]

Diastat is generally recommended to be used only once every 5 days or no more than 5 times a month.

Call the children's hospital -- a doctor's advice is what you need. I think you may want to head to the ER if her seizures are virtually continuous. The neuro on call should be able to give you some guidance. Good luck, I hope you can get her some help soon.

 

[KarenB]

If you haven't already, head to the ER at the Children's Hospital (not the local hospital).

If she is not recovering between seizures, this is a type of status epilepticus (according to Jon's neurologist). This is quite serious, and can often be fatal.

One thing that happens with Jon is that when he gets into this state, his oxygen level drop and don't really get back up to baseline without oxygen supplementation. So...if nothing else, your baby probably needs some 02 monitoring and maybe needs a little extra oxygen.

Jon also gets hyper when given some of the meds in the benzo family -- espcially Diazepam. This is actually fairly common with children.

 

[KarenB]

I recommended going to the Children's Hospital because that's probably where your pediatric neurologist is. Also...they will be better able to address her condition than the nearest ER. My guess is that she will admitted.

Even if baby is recovering between seizures (by recovering, I mean showing normal behavior) --4 tonic clonics in one day is pretty serious for anyone, but especially a 9 month old. It has serious effects on the heart rate, blood pressure, and oxygen levels, and she probably needs to be monitored for a day or two. Also, in the hospital they can give her meds by IV and you'll have professionals working with her rather than trying to play the guessing game at home.

 

[MamaC]

Thank you. We had 6 in one day 2 months ago. This is probably the fourth time we have had 4 in one day, but never 2 days back to back. I am going to get the Nuero on call at the hospital and see. I haven't ever had any of them tell me her oxygen level is at risk. But I can see why she gets so short of breath afterward, and then gets really phlegmy/congested where her passageways are obviously full of fluid. I hate it.

 

[KarenB]

Well, whenever a person has a tonic clonic, the oxygen level will drop -- basically because breathing stops for the 2 or 3 minutes or so that the seizure lasts. In our Jon's case, when they have him hooked up to the monitor, his 02 levels drop down to about 60 or 70 (normal is 90 to 100). Then it will climb back up into the 90's in about 3 to 5 minutes. But if he's having a seizure every hour or two, what happens is that his oxygen doesn't stay up in the 90's -- it keeps dropping back down into the 80's. This sometimes happens even with very brief tonic seizures (lasting less than 30 seconds) if he's having a number in one day -- last month he had 2 days where he had 5 seizures one day, then 9 seizures the next day, and then 9 the day after that. They were only tonic seizures, but they were starting to take a toll, so he was admitted to the hospital.

If your baby is having a lot of seizures in one day -- keep a close eye on her lips and fingernails and toenails (and fingers and toes) -- if they start turning a blueish color, that means that she is oxygen deprived, and you need to get her to ER quickly. She can actually be oxygen deprived without the blue color, so that why I get Jon to the hospital when he gets on a roll. You don't want prolonged oxygen deprivation, as that will cause brain damage.