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Has anyone heard of something like this before?
Tue, 05/16/2017 - 20:10I had to call an ambulance on Friday (4 days ago) for my 8 year old. My sister was worried because she said she noticed she was forgetting words when she was speaking to her. She was saying her head hurt, so I gave her Advil & had her lay down thinking that it was probably a migraine. She was crying saying that it was getting worse, so I had her lay in the bath to relax & called her dad to take her to the ER. When she got out of the bath she couldn't stand up right, she was falling all over & acting very strange. She couldn't remember her name or her age. That's when I dialed 911. When the paramedics got here she was so confused & had no clue what was going on. Her pupils were large, she was so pale. By this time her dad & my dad had showed up. My dad tried talking to her and she had no clue who he was even though she had just seen him 10 minutes earlier. Her words were slurred & she made no sense when she tried to talk. When we got to the hospital the Drs said she looked postictal. She was clammy, extremely tired, & she kept moving her eyes back and forth very awkwardly. They took blood work to rule out infection & transferred her by ambulance to the nearest pediatrics. When we got there they did a CT (which was normal) & diagnosed her with migraines. My only worry is that they are missing something. They didn't see her in her confused state so I feel like they aren't doing enough investigating. I ended up taking her back to the hospital that we were at first to get a second opinion. The Dr that seen her sent in a requisition for an EEG in two weeks. If it was in a seizure will it even show up on the EEG?
Comments
Hello, I finally joined this
Submitted by Beccasmom on Mon, 2017-07-24 - 18:50
Hello, I finally joined this group today, but my daughter (age 12) has been experiencing episodes very similar to the one you described. The first one, the ER/then Pediatric ICU still misdiagnosed it! At the second episode, 6 months later, my daughter's regular neurologist said she had subclinical status epilepticus. She has had absence seizures, well controlled with Lamictal, since age 2, but this new kind of seizure started a year ago. In the last few months she's had many episodes, but we give her a tablet of Ativan rubbed under the tongue to abort the seizure. We've been trying out some changes in medication; tomorrow she is supposed to start also taking Onfi once a day, which has me concerned after I read the side effects. I trust our neurologist, though. Anyway, I just wanted to let you know that the confusion and inability to communicate, move properly, follow simple directions, sounded just like my daughter's episodes. I was wondering if you got a diagnosis- I hope your daughter is doing okay. It is scary.
(I forgot to add this to my
Submitted by Beccasmom on Mon, 2017-07-24 - 18:54
(I forgot to add this to my previous post.) My daughter's pupils get very dilated during these episodes, too. One pupil is often larger than the other. Her lips swell for a while, and she can feel hot but doesn't have a fever.
That's really interesting! I
Submitted by Kaybecer on Fri, 2017-05-26 - 22:13
That's really interesting! I just assumed it was genetic because every single Drs appointment we've been to they've asked about any family history of seizures. I actually had a dr say it was unlikely that my daughter had a seizure because there wasn't any history of epilepsy in my family. Keep in mind that these Drs don't specialize in seizure disorders. My youngest daughter had a febrile seizure a few years ago & that was the only seizure history I knew about at the time, but that's a whole different story. My daughter had her EEG today so now we're just waiting for the results. I'm really hoping we get some answers soon!