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New here...daughter started having seizures...

Thu, 02/14/2019 - 09:16
Hi. I'm new here. We live in MD. My daughter started having absence seizures I don't know exactly how long ago. She reported them while we were at the neuro's for migraines. Had EEG, clean. While at neuro for follow up, she had one. Neuro ordered overnight EEG which we've yet to have. She has a absence seizure about once a day to every other day. Dr. prescribed 750 mg Keppra. and gave med authorization for 1 aleve to be given at school. Last week school called me at work that she came into the nurses office with a horrible headache and they felt she needed to be picked up. I said ok, we had a meeting scheduled at the home school for a 504 anyway. While on the phone, she had a seizure. This time, her left arm shook violently and continued to for 8 minutes. 911 was called. Since last Thursday, she continues to have these types of seizures. Initially, the ER called them Focal seizures. The shaking has spread from just her arm to her leg as well. She has a horrible headache both before and after and will throw up as well. Tuesday she was limping afterward. We are working with Children's Hospital in DC. They ran at CT scan in the hospital when we were there in the ER on Thursday. We are trying to get an MRI ordered before her overnight at Children's which is currently scheduled for Feb 28 (rescheduled from last week). I'm at a loss. I go in today to her school for the 504. She's missing a ton of school and shes a junior and an honor/AP A student. I'm epileptic as well but never like this. They doubled the Keppra last week but she seems to be getting worse, not better. Anyone see anything like this? Advice? Children's is good, but I feel like we are hitting brick walls

Comments

Yeah, absence usually shows

Submitted by Amy Jo on Thu, 2019-02-14 - 17:37
Yeah, absence usually shows up on EEG easily so focal is more likely. Plus many people won't notice absence seizures (they can be super brief) but complex partials can last longer and be more notable, except focal seizures can be hard to catch on EEG. Your description of how the shaking moved would also support a focal epilepsy. Keppra treats both focal and generalized seizure types. While it's possible to have both, the absence would have easily shown up. EEGs while on medication may not show anything. Imaging in epilepsy is often clear but it's helpful to see in focal epilepsies if there's an explanation.My child initially had long periods of staring that medical staff who were not up to date neurologists thought would be absence. They weren't. Actually found a lot of complaints our child had about weird stomach feelings and bad tastes/smells were seizures. Those complaints increased until medication was started and reduced when meds were increased (never fully controlled on meds). Got spikes on second EEG, haven't had one on EEG otherwise.Years later we did see generalized atypical absence and myoclonics show up on a multiday EEG where meds were weaned abruptly for the EEG so now the epileptologist is pretty sure it will be a time limited genetic epilepsy. It's definitely genetic with the atypical absence but we'll only find out if it's time limited later. She's hitting puberty so we'll try weaning this summer.

Yeah, absence usually shows

Submitted by Amy Jo on Thu, 2019-02-14 - 18:11
Yeah, absence usually shows up on EEG easily so focal is more likely. Plus many people won't notice absence seizures (they can be super brief) but complex partials can last longer and be more notable, except focal seizures can be hard to catch on EEG. Your description of how the shaking moved would also support a focal epilepsy. Keppra treats both focal and generalized seizure types. While it's possible to have both, the absence would have easily shown up. EEGs while on medication may not show anything. Imaging in epilepsy is often clear but it's helpful to see in focal epilepsies if there's an explanation.My child initially had long periods of staring that medical staff who were not up to date neurologists thought would be absence. They weren't. Actually found a lot of complaints our child had about weird stomach feelings and bad tastes/smells were seizures. Those complaints increased until medication was started and reduced when meds were increased (never fully controlled on meds). Got spikes on second EEG, haven't had one on EEG otherwise.Years later we did see generalized atypical absence and myoclonics show up on a multiday EEG where meds were weaned abruptly for the EEG so now the epileptologist is pretty sure it will be a time limited genetic epilepsy. It's definitely genetic with the atypical absence but we'll only find out if it's time limited later. She's hitting puberty so we'll try weaning this summer.

So there's nothing usually

Submitted by Amy Jo on Thu, 2019-02-14 - 18:11
So there's nothing usually fast about an epilepsy diagnosis when they don't see something obvious on the inital EEGs. It's going to take time. I know that's hard to hear. It's hopeful that nothing shows up on imaging because the alternative can be very bad news unless it's something easy to remove.For school - a 504 might allow her some options that you might not thing to ask for - could be that some online summer classes might be able to allow her to more easily make up some of her current classes and not delay her graduation. Know that common seizure triggers are sleep deprivation and stress (illness is another one). For meds - it's a lot of trial and error for most people and that takes time. Our then 8yo talked about wanting to die while on keppra so we got off that fast, some people love it, some people only do well once it's at the right dosage and maybe you aren't there yet. Each person has an individual response and they have to figure out what works for your child - time which you might be frustrated by as well as side effects you might be frustrated by.

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