My 13 month old is having seizures...

[Jamie19]

1st seizure

http://mamiesgoo.livejournal.com/454151.html?mode=reply
http://mamiesgoo.livejournal.com/454498.html?mode=reply

2nd seizure with videos
http://mamiesgoo.livejournal.com/474959.html?mode=reply

Before the first seizure (nov 8th) she'd been healthy, she's not vax'd so there was a huge ordeal about that with the first seizure including a lumbar puncture and 2 night stay where everything came back normal and we were sent home with the diagnoses of a febrile seizure caused from an ear infection. This time and last there was NO indication of illness prior to the seizure and the fevers weren't high.

The 1st time she had what my ped says are from her chewing on her hands, but look like a cold sore, they(childrens hospital) thought it was herpes simplex that had spread to her brain but again that was negative. Well the day after the second seizure the lesions on her mouth are back, she's had them almost EVERY time she teeths though so I'm not sure if they're related.

Any help is appreciated I'm lost and though she's seemingly fine I feel like I'm just watching a ticking time bomb.

ETA: the girls dad's sister was diagnosed with http://en.wikipedia.org/wiki/Malignant_hyperthermia not even sure that it matters but figured it needs thrown out there, since it affected blood relations.

[Jamie19]

Should I post this somewhere else?

We got a nuero appt for Feb 9th just a bit ago.

[jnet24]

That is really scary. This is the place to post sometimes it is just more quiet than other times. Plus there are so many reasons momas find themselves on this forum, so maybe the people who are currently on just do not have knowledge about seizures. I have worked with kids before with seizures, and I know how scary they can be. My cousin, when she was younger, would have febrile seizures any time she was getting sick, or had a fever. You and your lo will be in my thoughts. And just give it time, experienced momas will chime in.

[2boyzmama]

Yeah, I think the ones that are most familiar with seizures just aren't on yet and haven't seen this thread.

The seizures associated with my son's syndrome are different, and have a known cause and an effective treatment. So I'm not much help.

But I'm thinking it's actually a good thing that they tested her for meningitis because the rash with seizures would worry me...isn't there a form of meningitis (meningococus or something?) that can cause a specific rash? It's usually on the legs I thought though...purpura or something...my brain is fried on a Friday night, sorry!!!

Could it just be a severe form of hand foot and mouth? Although that's a form of herpes, so the test should have shown that. Have they cultured the actual lesions, or just her blood? If they haven't cultured the lesions, that would be the next logical step I'd think.

We're in Dayton, and we often go to Cinci for specific specialists for my son's syndrome, and we've always liked them. Of course you could get an individual bad dr, or a bad visit, but I'd think that overall she's in good hands there. Has she had an infectious disease consult? My son sees Dr Alter at Dayton Childrens, he's an Infectious Disease specialist, it might be worth at least a phone consult with him or another ID dr to brainstorm whether the rash and seizures are connected.

[sbgrace]

I'm so sorry you're facing this.

The board has a tendency to go slow at times and other times it moves so fast posts sometimes get missed.

This is the right place and you'll find support here and I'm glad you posted.

I'm glad she's seeing neurology; I'm sorry you have to wait a bit. That has to be so difficult. All of it. Has she had an EEG/do you know the seizure type?

Is her dad's sister otherwise healthy? The malignant hypothermia is only an issue with anesthetic to my knowledge (my son's condition makes that more common).

[FuzzyOne]

i am so sorry your little one is having seizures - it is such a very scary experience

it is really odd that she is having cold sores and that seems to be a common factor with seizure activity. if i were in your place, i would keep a careful journal documenting these occurrences. testing is not always accurate. i wish i had more advice to offer you. my son also has seizures and his seizure disorder came on with his very first strep throat infection and to this day, we can tell as soon as he has strep throat. if you would like to talk more, please do PM me.

[Jamie19]

Thanks guys, I just wasn't sure if I should search another board.

I think I'm mourning this huge WHAT IF, and its ridiculous because she could be just fine. She's been screaming the last three nights all night long, even after motrin and ear numbing drops and nursing she just screams and it makes me feel like I can't do anything, on top of being exhausted.

[askew]

Originally Posted by Jamie19

I think I'm mourning this huge WHAT IF, and its ridiculous because she could be just fine. She's been screaming the last three nights all night long, even after motrin and ear numbing drops and nursing she just screams and it makes me feel like I can't do anything, on top of being exhausted.

My DD was like that for 3 weeks, and I could not figure out what was wrong. For us it turned out to be a change in brain wave patterns that preceded the beginning of actual seizure from her. She was diagnosed last week with Infantile Spasm. When in doubt push for an EEG, as soon as possible. Our neuro got us in the very next day after her first seizure. This is very hard.

[pixiekisses]

Oh, I'm so sorry.
Has she had an EEG?

My little miss cotton ball button has severe epilepsy, I know how scary this is. s

[Jamie19]

She has a neuro appt Feb 9th, I'm guessing they'll do it or schedule one on that day. Hopefully do it since my SO has to take off and we have to find people to sit for the older 2 girls because they said no siblings.

[beckyand3littlemonsters]

From the video you have it looks like febrille convulsions my dd caitlin has had 6 between the ages of 6 months and 3 1/2 years my ds caden also had one a few weeks before christmas. dr's said they were caused by fever and both did have high temps although this was after the fact caitlin went from ok to having a convulsion so quickly once after playing ok all day at nursery she went on to have one while we picking up her sister at school, another time she had been happily scoffing her face at the chinease buffet on the way home she fell asleep in her pram and then when we got home she was sick and started convulsing and another time was in the middle of tesco.
it is really scarey when it happens i do now know what to look out for and with both my lo's it starts with eyes rolling back.

[theretohere]

How long has her longest seizure been? I saw in the one post that she had a postictal phase of 90 minutes with one, but not any seizure lengths.
It does look like febrile convulsions since she's having them with fevers- it's not the height of the fever, but the change in temperature that triggers them in sensitive kids, if that makes sense.
Has she had any without a fever?
I agree with the PPs- she really needs an EEG, hopefully a longish one/24 hr one.
My DD2 has been having seizures since she was 10 months old, and it's taken a long time to navigate through all the ins and outs.
Are there some specific questions I can help with? Are you keeping a log and compiling questions for the neuro appt?

[momtoS]

I have no experience with this. It must have been SO scary.....I got a sick feeling in my stomach just watching the video thinking.....what if it were me and my child.

HUGS to you...hopefully you get answers soon.

[gsmom]

Hugs to you mama. We've been dealing with seizures for a long time. I know how scary it is.

The scariest part is not knowing and having to wait for the "right" appointment. PPs had excellent advice to keep a log and write down any and all questions you have for the neuro.

[Jamie19]

Originally Posted by theretohere

How long has her longest seizure been? I saw in the one post that she had a postictal phase of 90 minutes with one, but not any seizure lengths.
It does look like febrile convulsions since she's having them with fevers- it's not the height of the fever, but the change in temperature that triggers them in sensitive kids, if that makes sense.
Has she had any without a fever?
I agree with the PPs- she really needs an EEG, hopefully a longish one/24 hr one.
My DD2 has been having seizures since she was 10 months old, and it's taken a long time to navigate through all the ins and outs.
Are there some specific questions I can help with? Are you keeping a log and compiling questions for the neuro appt?

My main concern is that they're taking it as being febrile seizures and not going to look at being anything else.

She's only had 3, one on nov 7th but I thought she was having a bad dream (she was asleep) Nov 8th was the 1st one when we were admitted, it lasted roughly 10 minutes, it was well over 5 because Alex wasn't sure what was going on and was getting her out of the high chair checking for food etc then woke me UP and it was still happening for at least 5 minutes on the phone w 911 that's the one that had a 90 minute PS turn around.

The one on Jan 13th was roughly 8-10 minutes, it as about 4 minutes into it before I noticed the camera and turned it on, and then it stopped and seems like it started again, I didn't call 911 right away as I thought it'd end quickly but it didn't.

I really have no idea what to talk to the neuro about other than -this is what's happened, where do we go from here?-

Like if its a wait and watch I'm not sure I can do it, I mean rationally I'll HAVE to but seriously my nerves were shot for DAYS after the last one, and still if she move fast I feel like she's going to do it again, nursing her is a huge trigger because that's when it happened last time I'm hyper sensitive to every moment thinking I can STOP it when I know I can't.

[Jamie19]

Also questions I have for him but feel like he'll roll his eyes.

-while bfing I've taken reglan, had surgery, taken percocets, and extra strength ibrofen and pepto bismol all while nursing (I had my gallbladder out and was sick for a LONG time before and afterwards, though each med was only taken a few times)

-she's always had VERY loose stool, and lots of it, pooping up to ten times a day without a stomach virus, she also nurses A LOT, so I always chalked it up to that?

-She's not vax'd. I'm not comfortable with doing any at this time either, and don't know when to start now (we'd planned on re-evaluating at 1, then the seizure happened, and then 15 months and now another)

-We had a CO leak a few weeks ago, could this have caused them? It was fixed but???

-The malignant hyperthermia has a link to over heating, could this cause them to come so quickly??? Should she be tested??? Its a muscle biopsy and apparently very painful so I don't want to go this route, I dont think there is any medicine to help the side effects either.

I feel like I'm looking at any toxin or abnormal thing but I don't know if any of them could have caused anything???

[pixiekisses]

But haven't you gotten any meds to stop it?
Parents here are given some kinda diazepam after one febrile seizure.

[theretohere]

Originally Posted by pixiekisses

But haven't you gotten any meds to stop it?
Parents here are given some kinda diazepam after one febrile seizure.

That's atypical in the US and not recommended here, as far as I know.

OP- I can understand the frustration at them treating them just as atypical febrile convulsions- it's scary not having anything to try to prevent them! At this time, it looks like febrile convulsions, but that doesn't mean that there isn't something else going on. That's why I would demand an EEG- that'll give you a chance to see if there are any identifiable brainwaves.
I don't know if any of the things you listed would cause febrile convulsions, but it doesn't hurt to ask.

[jeliphish]

with the last seizure there was no temp at all? this looks like the febrile seizures my DD1 has had. Not saying that your doctor shouldn't look for other causes (because he does for sure) but hopefully it is only febrile seizures. I know they are scary and can last up to 15 minutes (which would be absolutely terrifying). DD1 has had one when her temp was only 99.9. It's the sudden spike that causes it, so it doesn't have to be super high. DD1 was super confused and groggy for about an hour after each one. Please update when you can.

[pixiekisses]

Originally Posted by theretohere

That's atypical in the US and not recommended here, as far as I know.

Why? Seizures aren't a good thing for too long. And it could take some time for an ambulance to get there.

But, anyway, I'd get an EEG asap. Call and make sure they have one planned for when she's seeing the neuro, I wouldn't wait, it can take so long sometimes. A sleep deprived one is a good thing.