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Help Understanding EEG results

Thu, 11/09/2017 - 19:45
Hi there, my daughter is 8 years old and was diagnosed with epilepsy Bach in August. She had one normal EEG in May after suffering from a seizure (we aren't sure what type). Drs told me it was likely a complicated migraine & that she'd be fine. A week after her EEG I started noticing her twitching & jerking as well as rolling her eyes. She had another EEG in August (this time it was sleep deprived) & it came back abnormal. Her pediatrician discussed it with me but she couldn't really tell me what it meant. All she could tell me is that she is in fact having seizures & she put her on keppra. We've been waiting all this time to see a neurologist to discuss the EEG results & I still have not received a phone call about an appointment. Is there anyone that might be able to shed a bit of light so I can better understand what's going on? These are her results: EEG CLASSIFICATION: dysrythmia grade 4 abortive generalized spikes & waves OCCIPITAL RYTHEM: 9hz symmetrical DELTA: 2-3hz low voltage mid temporal with spread to anterior temporal SHARPLY CONTOURED WAVES: sporadic right anterior mid temporal sometimes crazy periodic GENERALIZED SPIKE WAVE: abortive at 3.5hz also independent left hemisphere

Comments

I forgot to add that it also

Submitted by Mommmyof4 on Thu, 2017-11-09 - 20:06
I forgot to add that it also said that there was focal irregularity  in the right mid temporal region. 

Find out who you are being

Submitted by Amy Jo on Fri, 2017-11-10 - 11:52
Find out who you are being referred to and call them. Generally if you are supposed to be contacted but haven't after a few days, assume something fell through the cracks and call. And once you've checked about the referral status, be nice but persistent and ask to get on the schedule asap because things book far out for neurologists. Ask about the neurologist's background, look for a pediatric epileptologist (aka a neurologist who has extra training and specializes in epilepsy) or a pediatric neurologist who treats a significant number of seizure patients (because if they aren't a pediatric neurologist, that's concerning and if they aren't heavy on seizure patients, that's also less helpful long term). And ask if they have a list of people who would take an appt on short notice if someone cancels their appt. Ask if they would schedule any other suggested tests in advance, particularly if there's a delay on an appt. Given that there was a focal abnormality, ask if they normally schedule an MRI (that's common where I am in the US when there are focal issues that show up on EEG, doesn't help if they only see activity associated with generalized seizures).And you may need to start getting aware of your insurance limitations when it comes to referrals to specialists (that's often a hold up, so you might need to follow up with calls to insurance to get appts approved and learn how that works so it isn't a problem in the future) and where to find info on what is covered, what copays are expected, etc... Assuming this is epilepsy which is most likely the case, you'll want to at minimum get your daughter a 504 plan for school. If there are any concerns about learning issues, you might want to initiate an IEP (school evaluations may or may not really tease out what matters for a child with epilepsy so this is an area you need to know more to insure the right testing is done). You could ask the neurologist if a neuropsych eval is called for (discuss any learning concerns when you are seen because that might be the fastest way to get insurance to approve it as both insurance and school districts like to avoid this useful test as it isn't something they are used to and it can be costly). There is some useful info at wrightslaw.com (which was put together by someone at the epilepsy foundation, it should be at epilepsy foundation but isn't and should be updated by the epilepsy foundation, grr), see http://www.wrightslaw.com/advoc/articles/epilepsy.manual.pdf

ps - check that they got a

Submitted by Amy Jo on Fri, 2017-11-10 - 12:02
ps - check that they got a copy of the EEG report (they may be waiting on that to call you and the delay may be from some other group) and ask about any files you should supply in advance or bring to an appt.keep a log of events (time, duration, type of episode), record some on your phone so you have some data to bring to the appt.and when medications are discussed... ask about the doc's top two med choices, what the common side effects might be, which drug reactions should be called in right away (most epilepsy meds have some black box warnings so know but don't freak out), how to contact the office after hours (for an emergency), how to contact them if the medication needs an adjustment because seizures are still occurring (not an emergency but shouldn't wait for the next appt), etc...

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