Post by lissaholly on Apr 18, 2016 22:10:12 GMT -5
From the little I understand about seizures, they can just happen and not be any indication of anything more nefarious. Daisy had a febrile seizure around 18 months and it was terrifying. We called an ambulance because we had no idea what was happening. We met with the Pedi the next day as a follow up and she said it is one of the scariest things for parents to see. Sorry.
She is turning 8 Saturday and nothing else like it has happened since.
Grateful you were right there at that moment. T&P coming your way. Hope it is a single event that never happens again! If it helps, my mom told me I had a seizure when I was 3ish I think? Never had another one or any after effects.
I had seizures when I was a bit younger than your daughter. I had sleep deprived EEG and was on medication, but they weaned me off of it within a couple of years, and luckily have been fine since. About once a year, I go over with my coworkers what to do if someone has a seizure (roll them on their side, cushion their head, do not hold them down, do not stick anything in their mouth, etc).
I'm sorry she had one, though. They are terrifying!
Post by BlackCanary on Apr 18, 2016 22:48:00 GMT -5
I had a grand mal seizure when I was 11, also when I was asleep. Did all the tests, clear as well. This was back in '95, they didn't really know what caused it and there is no histories of epilepsy/seizures in my family.
I was on a seizure med for about 7 years but they had me stop taking it.
I hope they find out what happened, thought and prayers for you and your family.
DD2 had a seizure two days after Christmas. The girls were staying over my parent's house when it happened, so I didn't see it, but I guess she went stiff, started convulsing, threw up, started choking, the whole nine yards, and it all happened while she was asleep. We had about 4-6 weeks of various tests, all of which sucked with a kid who turned 4 two weeks after it happened, and she was diagnosed with epilepsy and takes medication twice a day and is perfectly fine now. The neurologist even said we can discuss trying to wean her next spring of she stays seizure free. I had epilepsy as a child so this wasn't entirely unexpected, but it's still scary.
The biggest piece of advice that I would give is to trust your gut in regards to the doctors and their staff. The first neurologist (a pediatric neuro referred by my pediatrician) was horrendous and his staff sucked. The woman who tried to hook her up for her overnight EEG seriously traumatized Livy (and my mom and I!), yet the staff with the next doctor we found was phenomenal and made her feel so at ease. I wish I had listened to my gut and stopped the testing earlier than I did, but you know your kid needs these tests and they're not fun, so it's hard to know what to do. I hope your DD is fine and I'm sure the tests are easier with an older child (after all, EEGs aren't painful). I think in a lot of ways it's harder for us to watch. But even if she ends up getting diagnosed with epilepsy, it's easily treated. I was on medication for a couple of years and haven't had a seizure since I was 7. My aunt never outgrew it, but manages it with medication and hasn't had a seizure in over 10 years. We're hopeful that Livy will outgrow it, but she only had one seizure since she's been on medication, and it was very minor and while we were in the process of working her up to her full dosage. She's had none since she's been at her full dosage. She takes the generic version of Keppra, and there has been no change in mood, activity level, alertness, weight, etc.
XH had seizures brought on by multiple TBIs. The first one was scary as hell, to be blunt. Sadly, as time went on it became almost commonplace to deal with them. The kids knew what to do about seizures before they could even ride a bike. They grew up with it. "If the seizure lasts less than five minutes, don't bother calling the ambulance" was something they learned at the breakfast table. :/
sewf is right on with what to do if someone is having a seizure. Roll to the side, cradle or pillow their head so it doesn't hit against the ground during any activity, let their body seize as it will (don't restrain it), don't put anything in their mouth because once the seizure begins their muscles are already locked in tight and you'll do more harm than good (think broken teeth or bones for example.) Time any seizure activity and keep a log so you can keep yourself and her doctor informed.
My neighbor's son had a seizure at not much older. It's not uncommon, particularly in boys, to have some seizure activity as puberty approaches and hormones change. Many kids outgrow it in a short time. I know he did. Others have seizures as a result of fever, illness or it's simply a one-off, unknown thing that's scary as hell. It's scary anytime, for the first time, but it particularly scary when it's a loved one that you want to rescue but you can't.
I'm very sorry you and she are going through this. I hope they can find a simple cause that can be easily monitored and controlled. Or that it's a one-off that doesn't happen again and all you have to deal with is a few years of medication "just in case."
I'm so so sorry, my husband was 36 and had his first time grand mal this par fall. Not 8, not a child, but just as terrifying as there was no symptom, etc. We were on a 5k run, no pre-cursor. It was awful. I S Will never forget it. I ran to get a paramedics attention, his sister stayed with him, and eventually a century later, the ambulance came. The best thing was when the paramedic said : "you may never know what caused this."
He'd had EKG's, EEG's, MRI's, etc and everything is normal up to 4 months later. We've talked with people who have had epilepsy since the time they were a child, others who have had a random one time seizure. It's just a matter of getting alllll the tests she needs. That's the best course of action. If things come back as epileptic symptoms, there are so many resources. If things don't, knowing what can trigger or may never trigger another wil help. I know there are great resources here.
Hell, if I was panicked about my husband, I cannot imagine a child. So many hugs. Praying you get answers.
I have no advice or experience, but I am sending you lots of good thoughts. I can only imagine how terrifying it was, so those good thoughts are for both of you. ❤
I feel so bad that this happened to you and your girl. It must have been absolutely terrifying. I can't even imagine. Sending you both good thoughts. Many hugs!