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Another seizure? Still no diagnosis
Wed, 06/07/2017 - 19:48I'm so beyond frustrated. I've posted several times about my 8 year old daughter. She had an "episode" a month ago that was presumed to be a seizure. We were transferred to a different hospital & she was released with a "complicated migraine" diagnosis. I wasn't comfortable with the diagnosis so we ended up getting a second opinion. My daughter was sent for an eeg 2 weeks after her episode & it came back "basically normal" with some slowing in the occipital region. 2 nights ago I slept with my daughter and around 11pm she started jerking in her sleep. These weren't just little jerks, these were big & they happened every few minutes for at least 2 hrs. When she woke up in the morning I could tell something was wrong, she was very spaced out and talking very slowly. It was as if she was having a hard time concentrating. She sat down on the couch and I noticed that both of her hands were clenching repeatedly every few seconds. This went on for over an hour. At one point she was watching tv and I'm positive she was absent . Her eyes rolled & she didn't respond when I tried talking to her (I caught part of it on video). At this point I was positive she was having some sort of seizure. I took her to the ER & showed them the videos. The dr made me feel like a complete idiot. He basically told me I was crazy & that seizures didn't look like that. I asked him if she could at least be scheduled for a sleep eeg & he told me no and that the one they had done was sufficient enough. He told me "this is a seizure" & started jerking violently. I left upset & told him to go do his homework. I don't even know what to do anymore. Thankfully I was able to speak with a different dr & she said that she would send in a requisition for her to meet with a pediatrician. I just hope the pediatrician will help us get some answers!
Comments
I don't know if I stressed
Submitted by Amy Jo on Thu, 2017-06-08 - 11:49
I don't know if I stressed this but it comes up all the time - emergency depts are for emergencies (a seizure that doesn't stop is an emergency), it is not a place to expect other medical care like epilepsy diagnosis. I don't know why you would need a referral to a pediatrician, you want your child's doc to give a referral to a pediatric neurologist who treats seizure patients regularly (as in it is a significant percentage of their patients, not just any neurologist). our children's hospital (a research hospital) has boat loads of pediatric neurologists, some don't treat seizures patients regularly (avoid seeing someone like that for epilepsy, we've seen some of them for other stuff), some treat all the initial seizures patients (these docs are a fine option since they are researchers and up on all the normal epilepsy issues) and some have more training in epilepsy and are epileptologists (best option but hard to get initially unless they catch that it's a weird/difficult case - one usually gets a less specialized neurologist first as most patients are not difficult cases despite any slowness in diagnosis). So far one month into this is not unusal, getting an appt with a neurologist usually takes many months where I live. yesterday when I called to make an appt, the epileptologist had one appt at the end of June (must have been a cancellation), and three appts at the end of Sept (took one of those) and his October schedule should open the first week of July. I knew it was dicey but was wondering if there might be a late August appt still available.
ps - eeg scheduling can
Submitted by Amy Jo on Thu, 2017-06-08 - 12:15
ps - eeg scheduling can really depend on the local resources. for our area the longer an eeg, the farther out they usually get scheduled. so our child's first eeg (60-90 min) took a month to schedule, the longer sleep deprived one (2-3 hours) took 6 weeks with the neurologist pushing for it asap (6 weeks was asap because we weren't approved in time to get in on a cancellation), the 5 day in hospital eeg was 4 months because the epileptologist freeing up a slot, otherwise it would have taken over 5 months before they opened a new schedule. ambulatory eegs are popular with our children's hospital and easier to schedule but not popular with our insurance so hard to do, they don't really like anything other than the standard short eeg so any eeg can be delayed by the preapproval process.so oftentimes there is nothing fast in this process. most straightforward dx is when someone has a tonic clonic and the subsequent eeg is abnormal.
epilepsy diagnosis can be
Submitted by Amy Jo on Thu, 2017-06-08 - 02:48
epilepsy diagnosis can be more of an art form than science, might also depend on luck/timing, and then misdiagnosis is common as there are such a variety of ways things can appear to be something else (or vice versa). if possible have both parents present a united front, lots of docs dismiss a single parent (often a mom) but staring down two is harder.it took ~6 months for our child's initial epilepsy diagnosis, first eeg was unremarkable, second (sleep deprived) eeg only showed some spiking. even so, a lot wasn't known. there were no characteristic physical movements (unless you count lack of movement as she did stare, those were the seizures we were sure of, they were just infrequent, didn't know the 1-2 hundred funny/odd variety of ~5 types of complaints in those 6 months were seizures as well).